“Fatigue is not a disease” – Unger Responds, Advocates Launch Petition

June 10, 2013

Fight-or-Give-In-FDA_Stakeholders_Meeting_CFS On May 12th, 9 ME patient organizations (including Phoenix Rising) and 26 advocates sent a letter to Secretary Sibelius, Dr. Howard Koh, Dr. Thomas Frieden and Dr. Francis Collins at the Department of Health and Human Services (DHHS). In that letter, we expressed our strong concerns about the department’s current definition activities related to “CFS” and called on them to start using the Canadian Consensus Criteria for ME, which requires the hallmark symptom of post-exertional malaise. A summary and FAQ about the letter is here, and the Phoenix Rising article about it is here.

Tell DHHS: Fatigue is not a disease

For those of you who wish to become part of this important initiative, a petition has now been created calling on the DHHS to stop using the term “chronic fatigue syndrome” and the vague “CFS” definitions and start using the Canadian Consensus Criteria. We urge all our members and readers to please sign the petition and spread the word to everyone you know.

If we get 25,000 signatures in 30 days, we will try to take the petition to the White House. It’s a huge goal, but even if we don’t reach it, we will use the response as further evidence of patient interest in addressing this critical issue. The more signatures we can get, the more pressure we can apply to the DHHS to stop perpetuating the “web of confusion” that has confounded ME research, made drug development all but impossible, and led to the inappropriate and sometimes harmful guidelines currently applied to “CFS” patients. To join that effort and sign the petition, please use the following link:

http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/

Elizabeth Unger’s Reply

Elizabeth Unger (Chief of the Chronic Viral Diseases Branch at the CDC) has now replied to the letter as follows:

Sent: Wednesday, June 5, 2013 5:58 PM
Subject: Response to signatories of May 12 letter c/o Marry Dimmock

Dear Patient Organizations and Independent Patient Advocates:
 
Thank you for your letter to Dr. Thomas Frieden, Director of the Centers for Disease Control and Prevention (CDC), stating your concerns about the Department of Health and Human Services (DHHS) activities related to the definition of Chronic Fatigue Syndrome (CFS), as well as your suggested steps to improve research and treatment.   Your email was forwarded to me as Chief of the Chronic Viral Diseases Branch that studies CFS at CDC. 
 
I can assure you that CDC is aware of the issues you have described and recognizes that patient advocates are essential partners in moving forward.  CDC is fully committed to working with the CFS Advisory Committee (CFSAC) and DHHS to develop consensus about the case definition and name of this devastating illness.  The need is not only for a case definition but also for reproducible standardized approaches to applying it, as well as for biomarkers to refine subgroups within the overall CFS patient population.
 
We are encouraged by the increasing engagement of NIH, FDA, HRSA, and AHRQ through the forum provided by CFSAC.  The NIH’s State of the Knowledge Workshop on Myalgic Encephalomyelitis (ME)/CFS Research and AHRQ’s Systematic Review of the Current Literature Related to Disability and CFS are essential steps towards our shared goal of improving care for CFS patients.  Likewise, the FDA’s Workshop on Drug Development for CFS and ME has provided new opportunities to capitalize on the energy and collaborative spirit of federal partners and stakeholders.   CDC remains dedicated to conducting public health research, developing educational initiatives, and validating CFS phenotypes by utilizing the clinical expertise of physicians experienced in the care and treatment of CFS patients.  CDC will continue to engage CFSAC, public health partners, and patient advocates in the development of control and prevention strategies to reduce the morbidity associated with CFS and to improve the quality of life of persons with CFS and other similar medically unexplained chronically fatiguing illnesses such as ME, fibromyalgia syndrome, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis. 
 
Sincerely,
 
Beth Unger
 

Satisfied?

At the recent Invest in ME conference, Dr. Andreas Kogelnik began his keynote address with a cartoon highlighting what we don’t want: “We’re ready to begin the next phase of keeping things exactly the way they are”. Workshops and systematic reviews are all very well, and perhaps the department’s belated efforts will bear fruit one day, but the patient community is demanding real change now.

In October 2012, CFSAC called for an urgent stakeholders’ workshop on a case definition, using the Canadian Consensus definition as a starting point. On May 12, 2013, 9 patient organizations and 26 independent advocates called for DHHS to adopt the Canadian Consensus definition for ME and dismantle “CFS”. In response, we have been told that preparations for a systematic review of the current literature are under way, the agencies are demonstrating ‘increasing engagement’ and as advocates we are ‘essential partners in moving forward’.

That isn’t an answer, it is not what we called for, and it simply isn’t good enough. If CDC is “aware of the issues” we described in our letter, then it is aware that its continued failure to adopt a disease appropriate case definition is unproductive and harmful to patients. It should make the appropriate changes now to mitigate that continuing damage. We can’t afford to wait for the various agencies to gather evidence in a process which by their own admission has – so far at least – excluded those patients who are bed-bound.

We do not claim that the CCC is a perfect case definition, and many of us would ideally wish for the DHHS to leap ahead to the ICC, but the adoption of the CCC would be a huge step forward. As we said in the rationale for our recommendations, we believe that “it provides the best option to establish a disease appropriate baseline definition in the short term that can readily be further evolved in partnership with ME experts as additional data, knowledge and experience is gained, and as the definition is further operationalized and biomarkers are validated.”

So if you’re not prepared to wait – until 2014…or 2015…or 2016 – for the DHHS to eventually come up with its own consensus case definition for ME, then we urge you to join us in calling on the DHHS to enter the 21st century and adopt the 2003 Canadian Consensus definition. Please sign the petition – and don’t forget to ask your friends…

http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/

 

Support Phoenix Rising

Phoenix Rising is a registered 501 c.(3) non profit.  We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you’re able to offer your time, we could really use some more writers, proof-readers, fundraisers, technicians…and we’d love to expand the board of directors. You can even donate significant sums, at no cost to yourself, as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

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238 comments

{ 238 comments… read them below or add one }

Ember June 10, 2013 at 11:52 pm

Why not establish a partnership with ME experts now and ask for the adoption of the ICC? Asking DHHS to adopt a decade-old case definition is also unproductive and harmful to patients.

This campaign is so misleading! The “web of confusion” line comes from the ME Primer, as does the quotation in Mary's message to patients, caregivers and advocates: “Research on other fatiguing illnesses, such as cancer and multiple sclerosis, is done on patients who have those diseases. There is current, urgent need for ME research using patients who actually have ME.” Incorrectly attributed to Dr. Carruthers and used without his permission, that statement by the International Consensus Panel was written in support of the ICC.

Valentijn June 11, 2013 at 1:28 am
Unger

CDC will continue to engage CFSAC, public health partners, and patient advocates in the development of control and prevention strategies to reduce the morbidity associated with CFS and to improve the quality of life of persons with CFS and other similar medically unexplained chronically fatiguing illnesses such as ME, fibromyalgia syndrome, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis.

Well at least they're setting the bar nice and low with their goals. Nothing about understanding the biology or curing it – maybe she wants to give us some anti-psychotics and CBT to make it all go away?

I also love the grouping of those illnesses. How clueless can she continue to be? Describing ME/CFS as a "fatiguing illness" is highly inaccurate, and "medically unexplained" is frequently psych-talk for "psychosomatic". Neurasthenia is also a neurotic disorder according to the ICD-10.

Either she has repeated and extremely unfortunate choice in her wording, or she's one of those "medically unexplained" = "psychosomatic" people. And that sort of grouping of unexplained "fatiguing" illnesses is also (only?) something I've seen psychosomatic theorists engage in.

Unger doesn't belong anywhere near ME/CFS patients.

caledonia June 11, 2013 at 1:42 am

Yeah, she's trying to make us go away quietly and she mentions a 19th century hysterical disease (neurasthenia) in the same breath as CFS? This is why I had to stop reading and posting on political threads – :aghhh::aghhh::aghhh:

Firestormm June 11, 2013 at 3:11 am

Sorry where did the quote 'fatigue is not a disease' come from? Thanks.

golden June 11, 2013 at 3:47 am

Is PR behind this ?- terrible foggy brain today…. A cliff notes version would be appreciated ….

Could the phrase 'fatigue is not an illness ' be damaging mantra …?

Fatigue is not THE illness ?

* chronic fatigability not chronic fatigue …?

Bob June 11, 2013 at 4:05 am

It is very much a non-answer, isn't it. Sometimes it seems that CDC is still 30 years behind the rest of the CFS/ME community. I'm also not encouraged by the systematic review, as there is so much worthless CFS research out there. Reviewing some selective dodgy behavioural literature, one might conclude that CFS is a simple behavioural fatiguing disorder, treatable with CBT. And yet the biomedical literature shows a complex biological disorder with clear immune dysfunction, and biological markers/abnormalities. So I'm not sure how a systematic review will be able to make any sense of such opposing research paradigms.

alex3619 June 11, 2013 at 4:23 am

If Dr. Unger is aware of the issues, then she is aware of the harm that the CDC is causing. Does that make her responsible? Shouldn't it mean she (or delegated people) need to form a group with concerned patients and expert researchers to rapidly change things? A new case definition could be argued for, but its too far off. Harm is being done now.

taniaaust1 June 11, 2013 at 5:01 am

There is a bit of her post which really interested me.

CDC will continue to engage CFSAC, public health partners, and patient advocates in the development of control and prevention strategies to reduce the morbidity associated with CFS and to improve the quality of life of persons with CFS and other similar medically unexplained chronically fatiguing illnesses such as ME, fibromyalgia syndrome, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis.

Did anyone else note with that section of her post, that she actually listed ME separate to CFS in that part of her post in her "other chornically fatiguing illnesses". I wish someone would ask her why she's done this? Does she believe ME and CFS ARE separate illnesses or was this an error in her post? I want to know her views on it?

Interesting too how the word "neurasthenia" comes up when she refers to CFS.

alex3619 June 11, 2013 at 5:29 am

Officially I think the CDC has considered ME to be a separate disease for a long time, but this is not reflected in treatment advice I think.

Bob June 11, 2013 at 5:40 am
taniaaust1

Did anyone else note … that she actually listed ME separate to CFS in that part of her post in her "other chornically fatiguing illnesses". I wish someone would ask her why she's done this? Does she believe ME and CFS ARE separate illnesses or was this an error in her post? I want to know her views on it?

Perhaps she (rightly?) views 'CFS' as a non-specific umbrella diagnosis, that includes many 'fatiguing' illnesses, conditions and subsets?
Perhaps she thinks that 'ME' might be a discrete disease, but that there's no evidence for it, or maybe she's paying lip-service to the ME community?
She has repeatedly said that being able to define subsets is essential.
Her current research is attempting to define CFS subsets, using the data acquired from the expert physician clinics.

golden June 11, 2013 at 5:42 am

I think even some private doctors are poor in helping people with M.E. because they are hiding behind the CFS smokescreen. They refuse to use M.E. I think, to cover themselves. (sigh ).

I noticed M.E. being used as seperate to CFS in the letter .

As for neurasthenia – it seems this was called soldiers heart and is now called POTS –

I suspect its another physical illness that psychiatry has hijacked.

http://rarediseasesnetwork.epi.usf.edu/ARDCRC/professional/disorders/POTS/index.htm

biophile June 11, 2013 at 5:43 am
Valentijn

Well at least they're setting the bar nice and low with their goals. Nothing about understanding the biology or curing it. [...] And that sort of grouping of unexplained "fatiguing" illnesses is also (only?) something I've seen psychosomatic theorists engage in.

Compared to the massive bungling in the past, with the funding-misappropriated CFS department spending the first decade floundering in a manner which would make Ron Swanson proud, followed by the second decade of Reeves leading us into a dead-end, I am slightly surprised the CDC under Unger are even doing this much. Whether or not the renewed efforts in recent years will amount to anything useful remains to be seen. Part of me wants to be optimistic but I will certainly not be holding my breath for anything other than the lowest common denominator of the neo status quo.

taniaaust1

Did anyone else note with that section of her post, that she actually listed ME separate to CFS in that part of her post in her "other chronically fatiguing illnesses". I wish someone would ask her why she's done this? Does she believe ME and CFS ARE separate illnesses or was this an error in her post? I want to know her views on it?

The way I see it, ME was only mentioned once because it is in the name of the workshop referred to, not necessarily because Unger believes it exists as a disease entity. The CDC have never really been clear on the issue of ME.

Firestormm June 11, 2013 at 6:04 am
golden

Is PR behind this ?- terrible foggy brain today…. A cliff notes version would be appreciated ….

Could the phrase 'fatigue is not an illness ' be damaging mantra …?

Fatigue is not THE illness ?

* chronic fatigability not chronic fatigue …?

I too am kerfuddled this morrow :)

My brain went into a spin trying to decipher the meaning, then the intent…! All too much for me. Then I couldn't see the 'quote' repeated in the letter and I was like – oh crap. Back to bed :)

golden June 11, 2013 at 6:28 am
Firestormm

I too am kerfuddled this morrow :)

My brain went into a spin trying to decipher the meaning, then the intent…! All too much for me. Then I couldn't see the 'quote' repeated in the letter and I was like – oh crap. Back to bed :)

Ha ha – i have hurt myself laughing :)

Its a label nightmare !!!!

:)

Emma June 11, 2013 at 6:44 am

Can we sign the petition from anywhere in the world or do you have to be a US citizen for the signature to count?

MeSci June 11, 2013 at 6:47 am

I'm very foggy at the moment too – there's a lot of it about!

I was starting to fill in my details but thought I had better make sure of what I was asking for, and was concerned that the Canadian criteria might exclude me due to the apparent necessity for significant pain, which I don't have. So I haven't signed it – yet.

I may reconsider when my head is clearer and I have been able to think about it properly.

Nielk June 11, 2013 at 7:26 am

The way I understand Unger's answer is: "I read the letter. I understand the urgency. I am going to continue doing what I have done in the past – at my pace."

akrasia June 11, 2013 at 9:39 am

This morning brings news that the Obama administration has finally allowed the "FDA approved" morning after pill to be sold over the counter, after foot dragging for several years. Essentially, they allowed themselves to be forced to implement a policy they've always supported. This, of course, is crazy. But even in the best cases, truth, facts are not the only things driving government policy.

The CDC has an even greater, more baroque problem on their hands, something that's been staring them in the face for decades, a widespread epidemic that doesn't have a usable, coherent definition that originated with them. How do they go about changing without embracing any responsibility for not confronting the reality of m.e. starting say in 1984 when they sent two irresponsible clowns to Incline Village.

Does Unger ever speak with a sense of history? Of course not. Government seldom does. So much of government is merely reactive, hands are forced by circumstances, and policy changes. There is a kind of interregnum going on at the CDC. The old way is, I believe, over, the new not yet born. That's the space Unger is operating in.

Even if our clinicians and researchers pay lip service to Fukuda, the CDC is, of course, aware that no one experienced has respected it as a definition for a long time. How often do governments explicitly acknowledge error, bad judgement, deliberate, even malicious, neglect?

What I've noticed in the last few months is the willingness of some of the researchers and clinicians to speak out against the historical neglect of m.e, Shungu and Hornig, to mock and eviscerate the PACE trial, Baraniuk, Rowe, and Snell, to assert in an audience that contains Clare Gerada that "anyone who suggests that this might be fixed by exercise therapy should probably be de-registered," Don Staines,​
and to explicitly call the CDC on its procrastination, Kogelnik. And of course, not to be overlooked, the protesting of endless deferral by Fletcher, bad faith by Holdeman, and the strong criticism of the CDC's refusal to adopt the Snell protocol by Krafchick, who, rightly, called this a recipe for failure when looking at the effects of exercise on patients.​
The other day, I saw Pat Fero, a longtime, courageous, m.e. activist had signed a petition sponsored by the WPI. In her accompanying remarks she speaks of her illness, the loss of her son Casey to m.e., and the horror of seeing her grandchild showing symptoms.​
Our researchers and clinicians, are beginning to push back in ways that I haven't observed before. What they can't do is infuse government with the sense of urgency Pat Fero and all of us have. These institutions will change, are changing, but the pace is glacial, and the gap between government complacency and private sector creativity widens every day.​

Ember June 11, 2013 at 11:17 am
golden

Ha ha – i have hurt myself laughing :)

Its a label nightmare !!!!

:)

This would be funny if it weren't tragic. The advocates can't answer basic questions about their own initiative, and they haven't consulted with the experts. They seem to think that switching from the CCC to the ICC is like upgrading your operating system…no big deal.

If it's the Snell retest protocol you want, akrasia, it isn't in the CCC.

SOC June 11, 2013 at 1:01 pm
Bob

Perhaps she (rightly?) views 'CFS' as a non-specific umbrella diagnosis, that includes many 'fatiguing' illnesses, conditions and subsets?
Perhaps she thinks that 'ME' might be a discrete disease, but that there's no evidence for it, or maybe she's paying lip-service to the ME community?
She has repeatedly said that being able to define subsets is essential.
Her current research is attempting to define CFS subsets, using the data acquired from the expert physician clinics.

Can anyone tell me what the current situation re: ME and CFS is in the US? When I first became ill, the doctors and insurance companies had no code for ME, therefore it did not officially exist in the US. CFS was the only official designation for our illness. I was told that that has changed, but the following info is not helping me understand whether we can be officially diagnosed with ME. Or what the correct code for CFS is, for that matter — is it G93.3 or R53.82?

Subsets, my azz. This looks like the opposite of subsetting.

2013 ICD-10-CM Diagnosis Code G93.3 [​IMG]

Postviral fatigue syndrome

  • distinctive syndrome characterized by chronic fatigue, mild fever, lymphadenopathy, headache, myalgia, arthralgia, depression, and memory loss; candidate etiologic agents include Epstein-Barr and other herpesviruses.
  • Syndrome thought to be caused by a viral organism resulting in chronic fatigue, fever, pain, sore throat, and, in some cases, depression.
  • A syndrome of unknown etiology. Chronic fatigue syndrome (CFS) is a clinical diagnosis characterized by an unexplained persistent or relapsing chronic fatigue that is of at least six months' duration, is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction of previous levels of occupational, educational, social, or personal activities. Common concurrent symptoms of at least six months duration include impairment of memory or concentration, diffuse pain, sore throat, tender lymph nodes, headaches of a new type, pattern, or severity, and nonrestorative sleep. The etiology of CFS may be viral or immunologic. Neurasthenia and fibromyalgia may represent related disorders. Also known as myalgic encephalomyelitis.
  • G93.3 is a specific ICD-10-CM code that can be used to specify a diagnosis.
  • ICD-10-CM officially replaces ICD-9-CM on October 1, 2014, therefore, G93.3 and all ICD-10-CM diagnosis codes should only be used for training or planning purposes until then.

Applicable To

  • Benign myalgic encephalomyelitis

Type 1 Excludes [​IMG]

  • chronic fatigue syndrome NOS (R53.82[​IMG])

Kina June 11, 2013 at 1:26 pm
Ember

Why not establish a partnership with ME experts now and ask for the adoption of the ICC? Asking DHHS to adopt a decade-old case definition is also unproductive and harmful to patients.

This campaign is so misleading! The “web of confusion” line comes from the ME Primer, as does the quotation in Mary's message to patients, caregivers and advocates: “Research on other fatiguing illnesses, such as cancer and multiple sclerosis, is done on patients who have those diseases. There is current, urgent need for ME research using patients who actually have ME.” Incorrectly attributed to Dr. Carruthers and used without his permission, that statement by the International Consensus Panel was written in support of the ICC.

The problem with ME/CFS advocacy is that there is very little agreement on anything. When a group comes together with many different voices and they reach a consensus on something that is what they go with. A consensus was reached re: the CCC vs ICC. Constantly complaining about this will do nothing except cause further division.

There are still problems with the ICC and there are problems with the CCC too. Of course not everybody will agree that it's best to go with the CCC as a starting point until the ICC is further entrenched. What I find unproductive and harmful to patients is that we never get anywhere because every time a group of advocates come together to try to do something positive, it's criticized and complained about largely based on one's own personal biases related to what they think must be done . I have seen some good work essentially torpedoed by this kind of thing before it can even get off the ground.

Ember June 11, 2013 at 1:45 pm
SOC

Can anyone tell me what the current situation re: ME and CFS is in the US?

This quotation is taken from the National Alliance for Myalgic Encephalomyelitis:

At present, the U.S. still uses its modification of WHO's ICD 9th revision, the ICD-9-CM. Chronic fatigue syndrome is classified under "Symptoms, Signs and Ill-Defined Conditions," code 780.71, under the sub-heading of "General Symptoms." As the Definitions and Research pages of this website demonstrate, M.E. is a clearly defined clinical entity that was coded in the ICD-9 as 323.9 under "6. Diseases of the Nervous System and Sense Organs(320-389); Inflammatory Diseases of the Central Nervous System(320-326)." However, the U.S. modification of the ICD-9 (ICD-9-CM) tabular document revised 323.9 to "Unspecified cause of encephalitis, myelitis, and encephalomyelitis" but still lists in the ICD-9-CM Index: "Encephalomyelitis (chronic) (granulomatous) (hemorrhagic necrotizing, acute) (myalgic, benign) (see also Encephalitis) 323.9." This is the diagnostic code we recommend doctors use when a patient fits the distinct M.E. definitions, according the the Consensus Document, Ramsay, Dowsett et al definitions, and Hyde descripton. According to a CDC ICD coding representative (July 2006), "M.E. has always been indexed to code 323.9. That is the code number that patients should be assigned." Correctly diagnosing this disease benefits patients and health care providers by acknowledging the true prevalence of ME in the U.S.

Iquitos June 11, 2013 at 1:49 pm

“We’re ready to begin the next phase of keeping things exactly the way they are”.

That about sums up Unger and the CDC. They'll acknowledge they're feeling the heat and try to cool things off with cheap talk and no action of any real import. Everything they've proposed or done has already been done, most of it decades ago. Regurgitating the past is their way of jogging in place while claiming to be running as fast as they can.

There is no place in modern scientific discourse for "neurasthenia." They might as well claim that it's witchcraft or bad air. That's Unger's way of extending the middle finger of her hand to patients and their supporters.

The only improvement I can see is that they are no longer claiming that those who know the disease, like Dan Peterson, are "contaminated", as Reeves once did. But wait…Peterson didn't get invited to any of the recent government shindigs, did he? As for physician instruction, the video Peterson did for doctors in Sweden (or some other Scandinavian country) a year or so ago on how to diagnose and treat would be a huge step forward if the CDC would just put that out there. But no, they insist they must reinvent the wheel and the one they always invent has four flat sides to it. No wonder it never goes anywhere.

Ember June 11, 2013 at 1:51 pm
Kina

The problem with ME/CFS advocacy is that there is very little agreement on anything. When a group comes together with many different voices and they reach a consensus on something that is what they go with.

It would help if the advocates were well-informed. AIDS activists succeeded when they started doing their homework.

Kina June 11, 2013 at 2:23 pm
Ember

It would help if the advocates were well-informed. AIDS activists succeeded when they started doing their homework.

Non-productive and harmful comments will get us nowhere. Were you privy to how decisions were made? Are you well-informed of how the consensus was reached? I was actually given some good descriptions of how the decisions were reached and it doesn't seem to go to anybody be ill-informed.

Groups working together will get us somewhere.

From what I have personally heard, the advocates involved are not ill-informed and have done their homework.

I think it's best to move on and look at Unger's response than posting digs at advocates.

If we were to wait for all the advocates to agree, then hell would likely freeze over.

I signed the petition for many reasons. I could have held back because I disagree with a few things but I would rather have something being worked on over nothing at all. Progress takes time but it doesn't happen when advocates are bogged down with constant criticism.

I really have nothing else to say. This of course is only my personal opinion. I actually don't believe that even if the ICC were being suggested that Unger's non-response would have changed one iota.

Ember June 11, 2013 at 2:36 pm
Kina

Were you privy to how decisions were made? Are you well-informed of how the consensus was reached? I was actually given some good descriptions of how the decisions were reached and it doesn't seem to go to anybody be ill-informed.

No medical or policy experts were consulted, and basic questions about the initiative go unanswered.

Angelina LeBaron June 11, 2013 at 2:50 pm
Firestormm

Sorry where did the quote 'fatigue is not a disease' come from? Thanks.

Hello Firestorm,

The phrase "fatigue is not a disease" came from Erica Verrillo. See ProHealth post: http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=18131

Kina June 11, 2013 at 3:04 pm
Ember

No medical or policy experts were consulted, and basic questions about the initiative go unanswered.

What medical or policy experts have you consulted to come to your conclusions regarding the CCC vs ICC? Nevermind, don't bother answering because it doesn't get us anywhere. Maybe people stopped answering questions because of the constant criticism. I really don't know. I just have a different mindset I guess. I appreciate the work many advocates are doing on our behalf and even if I have questions and think things could be done differently, I still believe that something over nothing, and consensus over constant squabbling is preferable. Just because you believe something is wrong, doesn't make it wrong.

We have a long road ahead of us and there is a lot to be done.

I am actually more interested in this thread regarding Unger's response and how it should be responded to.The letter has been sent after a consensus was reached, the petition can be signed or not. I am not interested in repeated criticism regarding a group of advocates who have come together to work on our behalf. The problem isn't with the advocates, it's with people like Unger.

WillowJ June 11, 2013 at 3:06 pm
Valentijn

Neurasthenia is also a neurotic disorder according to the ICD-10.

that isn't even in the ICD-CM. We refused to have it because it's sexist in how it's used. Some decades ago. CDC bringing this up is a complete mystery.

WillowJ June 11, 2013 at 3:07 pm
alex3619

Officially I think the CDC has considered ME to be a separate disease for a long time, but this is not reflected in treatment advice I think.

this is sort of complicated. If you ask them what to do with an ME patient, they will refer you to the diagnostic and treatment protocols for CFS (or this is what they have done in the past). If you ask them why they are not treating CFS as a neurological disease, they will tell you CFS has a case definition distinct from the case definition for ME.

Ember June 11, 2013 at 3:15 pm
Kina

The problem isn't with the advocates, it's with people like Unger.

Challenging Dr. Unger requires effective advocacy.

alex3619 June 11, 2013 at 3:30 pm
WillowJ

this is sort of complicated. If you ask them what to do with an ME patient, they will refer you to the diagnostic and treatment protocols for CFS (or this is what they have done in the past). If you ask them why they are not treating CFS as a neurological disease, they will tell you CFS has a case definition distinct from the case definition for ME.

Yes Willow. Its called a double standard, a.k.a. hypocrisy.

Kina June 11, 2013 at 3:40 pm
Ember

Challenging Dr. Unger requires effective advocacy.

That again is an unproductive and harmful comment and just outright rude. I think we have people working hard on our behalf. Constant negativity does nothing. In the face of all the crap that our advocates constantly have to face, it's a wonder anybody ever steps up at all. I appreciate those people, most who are sick themselves actually trying to go forward and get things done to make some kind of a difference. Kudo's to them. If you believe that you have something better to offer, why don't you get to it rather than just criticizing the hard work of others.

If you don't like the fact that they chose by consensus to use CCC over ICC, it doesn't translate into ineffective advocacy.

Anyways, it's obvious anything I say is going to met with terse one-liners. That's okay, but I guess it's pointless to have any kind of conversation because I believe the advocacy efforts are fine, I don't have a problem with using the CCC until the ICC is refined a bit, I like that we have people advocating on our behalf. I suspect if you had written the letter to Unger from your point of view, the response would have been the same.

WillowJ June 11, 2013 at 3:44 pm
SOC

Can anyone tell me what the current situation re: ME and CFS is in the US? When I first became ill, the doctors and insurance companies had no code for ME, therefore it did not officially exist in the US. CFS was the only official designation for our illness. I was told that that has changed, but the following info is not helping me understand whether we can be officially diagnosed with ME. Or what the correct code for CFS is, for that matter — is it G93.3 or R53.82?

Subsets, my azz. This looks like the opposite of subsetting.

R53.82 is designed by DHHS for people who fit case definition for CFS (and ME? would certainly include ME patients at any rate) with no proven viral onset. Since CDC has been specifically telling doctors NOT to test for any viruses in ME/CFS patients for many years, that would be most everyone.

However, I don't know for sure what CDC has decided or will do in the final version of ICD-10-CM or if it's out yet. Donna Pickett hasn't answered any inquiries about this, as far as I have heard. Current version can be obtained directly from CDC, but I've been extra ill and lost track of whether it was finalized.

The code helpers on can find online in html use a variety of sources to and are not based solely on DHHS sources, so they might not be the same as the official one. They do include official sources as one of their inputs, though, so it is worrying that they are using the CFS NOS. (NOS = not otherwise specified)

Nielk June 11, 2013 at 3:46 pm
Ember

Challenging Dr. Unger requires effective advocacy.

Ember,

Are you involved with advocacy? It's easy to criticize from the stands. What's hard is doing something about the status quo and trying to affect change. You seem to have a lot of knowledge about the issue. Why not get involved and help?

Ember June 11, 2013 at 3:53 pm
Kina

If you believe that you have something better to offer, why don't you get to it rather than just criticizing the hard work of others.

Input from members of Phoenix Rising wasn't invited, and experts weren't consulted.

Ember June 11, 2013 at 4:07 pm
Nielk

You seem to have a lot of knowledge about the issue. Why not get involved and help?

I've been asked in the past to get expert opinion for the advocates, Nielk, only to have it roundly rejected. The advocates don't respect the experts or their expertise. Unfortunately, that attitude may be of more benefit to Dr. Unger than to the patients.

snowathlete June 11, 2013 at 4:57 pm

Personally, I can see both sides of the argument here.

I like that people are trying to do something, and I believe that collaboration and getting several groups/people supporting an effort is a good way to go. Essential, actually.
Change takes time, and you never ever win from the beginning, but arguments you make now set the sometimes un-acknowledged foundations for change to occur next time (or more likely, next year, couple of years…) so in this respect there is an opportunity, often, to refine what you actually want to happen as things progress, because when you ask for change, your first request never gets implemented in cases like these. In this respect I think it’s important that people don’t get disheartened by the reply and future replies like this. Its normal, and totally what I expected to happen. Change takes time.

But I can see some of Ember's arguments and questions are valid, and I think it's right to ask them, and for this advocacy group to improve in the way they work, because it’s all a learning process and no one expects anyone to get everything right first time, and what is 'right' is often a matter of opinion in some of these things, but getting it close (something that will progress things) is still a worthy effort and I support it.

It’s important to engage with people in the community that are asking fair questions (especially difficult ones) because it helps you improve – it’s a positive pressure, in my view…
I think there is a point where it can become counterproductive, but I think it takes both sides to engage on somewhat controversial topics like this. So long as all parties are respectful (which I think they have been on the whole) and the views being discussed aren’t extreme (and I don’t see any of that here) then I think it is beneficial. If one person asks the questions, and the other side doesn’t acknowledge them as fully as perhaps they should, then the first person gets frustrated and is likely to vent and others might be more reticent to support it. Especially in situations where one side has more power. Just like the CDC have more power than advocacy groups, advocacy groups have more power than individuals in the community, so it’s important for everyone to keep an open mind and engage with each other.

Would the advocacy group feel happier if Unger's letter was more engaging, maybe more open to further discussion? Even if it didn’t give any more actual ground? Yes, I think so. Same with advocacy groups when they get feedback from the community they represent. Just as we want the government agencies to listen, groups representing patients need to listen too; else it’s a flawed process and that would be the most damaging thing to efforts like these.
I'm not suggesting that this advocacy group hasn’t done that enough, btw. I think some of the posted answers in other threads on this topic were very helpful, but I favor the greatest engagement that is possible – there is usually room for improvement. From the posts here and in other threads, it looks like some people in the community might feel that they didn’t get any chance for input (even if their input was then ignored) and so that seems like a key are where improvement could be made, in my opinion.
I see this effort as progressive, so I support it, but I'd like to think that engagement in the future would improve and appear to be more open than it might have been this time. I’m not saying we should involve everyone, and have a show of hands, it can’t work that way, but again, more engagement, learning as we go along, taking feedback on board when the community raises it…that’s the way that advocacy groups will be most effective and have the most support from the community, which is important for the success of efforts like these.

As with all this stuff, especially in our community with lots of conflicting views, it is important for everyone to acknowledge, and accept, that things aren't ever black and white. The world is composed of gray! Gray is progress, and we might need to compromise on the shade.

Mark June 11, 2013 at 5:03 pm
Ember

Input from members of Phoenix Rising wasn't invited. Experts weren't consulted.

As medfeb has explained on another thread:

As I think we've all seen in PR threads that have tackled the definition before, it is not an easy issue to discuss because of how convoluted all the definitions have become and because the term "CFS" means so many different things to people. As a result, the letter was in the works for about 6 months with numerous discussions across a number of organizations and individuals that included a few doctors and a number of long term advocates on how to frame the discussion and on what recommendations to make. All of the signatories were given the opportunity to provide input as did others. The final product was a result of that iterative process.

As medfeb suggests, public discussion threads (which the recipients of any letter can also read while position statements are being developed) aren't always the most productive way to produce consensus and work productively on drafting an effective document so be submitted to federal authorities. Sometimes such threads can be disrupted and dragged off track by people who don't really want to work constructively in order to achieve a consensus and move forward.

The groups and individuals listed below put their name to the letter. The phrase "…as did others…" in the above quote means that there are other people who were also consulted, but it would be wrong to give the names of those people without their permission. Any experts who agree or disagree with the letter and/or the petition are free to state their position on it publicly, and unless/until they do so, any assumptions about their involvement in its drafting or their stance towards it are just speculation.

Signatories of the letter:

Chronic Fatigue Syndrome,
Fibromyalgia and Chemical Sensitivity Coalition of Chicago,
CFS/Fibromyalgia Organization of Georgia, Inc.,
MAME (Mothers Against Myalgic Encephalomyelitis),
PANDORA (a.k.a. CFS Solutions of West Michigan),
Phoenix Rising,
The Fibromyalgia-ME/CFS Support Center, Inc.,
Rocky Mountain CFS/ME and FM Association,
Speak Up About ME,
Wisconsin ME/CFS Association, Inc.,

Bobbi Ausubel,
Rich Carson,
Lori Chapo-Kroger,R.N.,
Kati Debelic, R.N.,
Mary Dimmock,
Pat Fero, MEPD,
Joan Grobstein, M.D.,
Jean Harrison,
Eileen Holderman,
Suzan Jackson,
Jill Justiss,
Mindy Kitei,
Michele Krisko,
Denise Lopez-Majano,
Mike Munoz,
Matina Nicolson,
Donna Pearson,
Leela Play,
Justin Reilly, J.D.,
Mary Schweitzer, Ph.D.,
Meghan Shannon MS MFT,
Marly Silverman,
Rivka Solomon,
Tamara Staples,
Charlotte von Salis, J.D.,
Michael Walzer

Mark June 11, 2013 at 5:11 pm
Ember

I've been asked in the past to get expert opinion for the advocates, Nielk, only to have it roundly rejected. The advocates don't respect the experts or their expertise. Unfortunately, their attitude may be of more benefit to Dr. Unger than to the patients.

Of course, there are a variety of experts with a variety of perspectives and it's impossible to please everyone all of the time. You don't state which people you consider to be "the experts", but I suppose Simon Wessely and Peter White might consider that as "experts" in the subject they should have been consulted. Good luck getting a consensus which includes them. If you think you can achieve a broad consensus of organizations, advocates and experts who support a different position, you're welcome to try, but there is of course an enormous amount of work involved in doing so.

Ember June 11, 2013 at 5:22 pm

The letter to DHHS demands that the “key stakeholders ME patients and ME experts must be engaged in a full and open partnership to plan for and ensure implementation of this change.” Why weren't any ME or policy experts consulted about the change or implementation plan?

WillowTree June 11, 2013 at 5:25 pm
Emma

Can we sign the petition from anywhere in the world or do you have to be a US citizen for the signature to count?

As I write this, there are currently 899 signatures on this petition. I have kept track of the countries from which these signers come: USA, UK, Norway, Canada, Israel, New Zealand, Netherlands, Italy, South Africa, Ireland, Sweden, Puerto Rico, Spain, Belgium, Finland, Germany, Japan, US Virgin Islands, Denmark, Greece, France, Croatia, and Malta. So, Emma, as well as others, please sign the petition if you feel so moved, as this disease, ME, knows no boundaries. We need international support and cooperation on all levels in order to tackle this horrendous problem.

Ember June 11, 2013 at 5:51 pm
Mark

You don't state which people you consider to be "the experts"

Dr. Carruthers' opinion concerning the relationship between ME and CFS has been roundly rejected by advocates in the past. Now it pleases Mary to use his name in support of this initiative. Taking a quotation out of context and using it to a different purpose without the author's permission is generally seen as intellectually dishonest behaviour. In Mary's message, even the attribution itself is incorrect. Yet you have refused to make any correction. If an ME expert's opinion isn't valued, why then make use of his name?

Mark June 11, 2013 at 6:08 pm
Ember

The letter to DHHS demands that the “key stakeholders ME patients and ME experts must be engaged in a full and open partnership to plan for and ensure implementation of this change.” Why weren't any ME or policy experts consulted about the change or implementation plan?

As explained above. The partnership and consultation referred to there would come from the DHHS if and when they respond. No doubt details would be subject to change at that stage, and there would be opportunity for people to express their views.

Ember June 11, 2013 at 6:21 pm
Mark

The partnership and consultation referred to there would come from the DHHS if and when they respond. No doubt details would be subject to change at that stage, and there would be opportunity for people to express their views.

I hope that it's as apparent to DHHS as it is to me that what's at issue here is more than a matter of “details.”

Mark June 11, 2013 at 6:29 pm
Ember

Dr. Carruthers' opinion concerning the relationship between ME and CFS has been roundly rejected by advocates in the past. Now it pleases Mary to use his name in support of this initiative. Taking a quotation out of context and using it to a different purpose without the author's permission is generally seen as intellectually dishonest behaviour. In Mary's message, even the attribution itself is incorrect. Yet you have refused to make any correction. If an ME expert's opinion isn't valued, why then make use of his name?

I've answered that question on the other thread already. I think I've answered all your questions, some of them several times, and if you don't like the answers then we'll just have to agree to differ. But I'll answer that question one more time…

The letter has already been sent, and I don't see any meaning or purpose to asking for a correction on a very minor point (which, assuming you're correct, would presumably be to add "et al" after his name, even though the paper from which the quote comes is referenced in relation to the quote?). Quoting something that somebody said on public record does not require their permission, and it doesn't constitute "using their name" in support of the initiative. It's simply using words they said in support of an argument. I think it's pretty standard practice: I was never taught at school when writing essays that I had to contact everybody I quoted to get their permission in case they might disagree with the argument I was making.

And if you think that 'taking a quote out of context' (in fact, the one you are referring to is referenced to the source) and using it to support a position that the author of that quote would not support (which is conjecture on your part and Dr Carruthers is quite able to object himself if he has a problem with this) is "intellectually dishonest behaviour", then I disagree: it would be dishonest if one said or implied that the author of the quote agreed with everything else you were saying, but that is not what has been done here. But supposing that were intellectually dishonest, then that criticism can most definitely be applied to your use on the other thread of a quote (unreferenced), which you attributed to Invest in ME, as an argument against this initiative, despite the fact that Invest in ME themselves state in their latest conference journal, under Guidelines: "Invest in ME support the use of either the so called Canadian Consensus Criteria (CCC) or the later version of these guidelines the International Consensus Criteria (ICC)."

Mark June 11, 2013 at 6:30 pm
Ember

I hope that it's as apparent to DHHS as it is to me that what's at issue here is more than a matter of “details.”

Since that's made clear in the letter to them, and in any case obvious, I would hope so too.

Ember June 11, 2013 at 6:40 pm

One more time, Mark, I did not take any quotation out of context. The statement by the International Consensus Panel that Mary has used in support of her initiative was written in support of the ICC.

Mark June 11, 2013 at 6:50 pm
Firestormm

Sorry where did the quote 'fatigue is not a disease' come from? Thanks.

Answered by someone else above (thanks!) but as to the title of the article, it's taken from the title of the petition.

I find the point that golden makes – that this might be a risky slogan, because it could be turned around against us – quite interesting and thought-provoking. I've been reflecting on that, and my thought is that in the end this just illustrates what a good issue it is to highlight. What we're really saying here is: This is a disease, not (just) fatigue. It's a starting point for thought about the issue, and yes anybody could take it in either direction, but if somebody were to say "yes, fatigue is not a disease, it's just fatigue, so you shouldn't call it a disease" then the answer is easy: list all your other symptoms and say "exactly, I don't have fatigue, I have a disease with many symptoms, so the name is completely inappropriate for me (and for M.E.)".

I wonder whether any good slogan is open to cynical misinterpretation to mean the opposite of what it says. I think maybe the value of any slogan is that it opens up a sharp and important question and makes it clear what the issue is, but slogans in themselves never prove anything or win arguments.

Having said all that, "This disease is not 'fatigue'" might be better.

Ember June 11, 2013 at 6:53 pm
Mark

I think I've answered all your questions, some of them several times, and if you don't like the answers then we'll just have to agree to differ.

You referred my questions to Mary, who has not yet replied.

Mark June 11, 2013 at 7:04 pm
Ember

One more time, Mark, I did not take any quotation out of context.

I don't think I said you did. Neither did the letter – it stated the context quite clearly.

I have no idea what the context of your Invest in ME quote was, because there's no reference for me to confirm whether IiME said it or in what context. All I know is that the interpretation you placed on it is contradicted by IiME's quote in their latest conference journal, which clearly states support for both CCC and ICC.

The real point here is that supporting the ICC does not imply opposing the CCC always and everywhere, or opposing anyone campaigning for the CCC in any context. Invest in ME get that, as my quote clearly shows. The signatories of the letter get that, because I'm sure there are some amongst them who would ideally prefer the ICC but think that a united front is more important. I strongly suspect that most of the authors of the ICC also get that. I think most reasonable people get that.

The statement by the International Consensus Panel that Mary has used in support of her initiative was written in support of the ICC.

Correct. So what?

Mark June 11, 2013 at 7:06 pm
Ember

You referred my questions to Mary, who has not yet replied.

We've both spent an awful lot of time answering your questions, and we do have other things to do. I think all the questions on which I referred you to Mary have now been answered either by me or by her.

Mark June 11, 2013 at 7:12 pm
golden

Is PR behind this ?- terrible foggy brain today…. A cliff notes version would be appreciated ….

Sorry for the delayed reply golden.

Phoenix Rising has signed the letter and we are supporting this campaign, but we are not 'behind it' in the sense of organizing it. We joined the discussion process part way through.

Our original article might be helpful for a simple summary:
http://phoenixrising.me/archives/16954

In particular, the key points in the letter are summarized part way down under "What are we asking for?", and there's more explanation above and below that.

Ember June 11, 2013 at 7:22 pm

I've been awaiting since last Wednesday a reply from Mary about the concerns that I've raised:

Ember

Unfortunately, your answers don't address a number of the concerns that I've raised.

medfeb

Ember
I am sorry that it took me so long to reply to your questions but I did try to answer your questions as best I could. I still need to reply to your post from yesterday.

Ember June 11, 2013 at 7:34 pm
Mark

The real point here is that supporting the ICC does not imply opposing the CCC always and everywhere, or opposing anyone campaigning for the CCC in any context.

This initiative involves adopting the CCC, calling it ME and collapsing CFS as a diagnosis. No experts were consulted, but the campaign suggests that these ends are supported by the authors of the ICC and in particular by Dr. Carruthers.

Mark June 11, 2013 at 8:00 pm
Bob

It is very much a non-answer, isn't it. Sometimes it seems that CDC is still 30 years behind the rest of the CFS/ME community. I'm also not encouraged by the systematic review, as there is so much worthless CFS research out there. Reviewing some selective dodgy behavioural literature, one might conclude that CFS is a simple behavioural fatiguing disorder, treatable with CBT. And yet the biomedical literature shows a complex biological disorder with clear immune dysfunction, and biological markers/abnormalities. So I'm not sure how a systematic review will be able to make any sense of such opposing research paradigms.

Very much a non-answer, yes Bob.

I'm not completely pessimistic about the systematic review though. I think something useful might come out of that, and from the other initiatives (like the CDC multi-site study). I find it quite understandable that the federal agencies feel the need to proceed in that way, and respond to these requests with the kind of tools they have, and nobody (I think) disagrees with Unger about the importance of finding biomarkers and other evidence to support eventual definitions. The problem as I see it is all the ongoing harm that's caused while they're working through all that, when there is already more than ample evidence of that harm and it's clear that short-term solutions to the problem of the "wastebasket" they've created for us are available now. (And of course we have no real basis for confidence that they'll do a good job of it this time, and plenty of reasons to fear that they're still determined to do it in a way that completely misses the point).

So I'm not blindly optimistic about what the systematic review will throw up, but I found a few of the comments about it at CFSAC fairly promising. One key point that was stressed is that really what it will tend to do is identify the gaps in the research; the key issues, the unknowns, the things that need to be clarified – and that this will then be used to guide what research should be done next. It's quite interesting to think about what that might highlight. If it concludes that the research so far doesn't amount to much, then it has to also conclude that much more research is needed. If it finds issues like NK cells and other immune abnormalities inconclusive, then it pretty much has to say what needs to be done to resolve those questions. And assuming it reviews both of the halves of the literature that you describe, Bob, then it would seem to me that the picture you have sketched is accurate: there are two camps, one researching one broad definition and CBT, and the scientists researching the biology of the disease using a narrower definition. One possible conclusion from that picture that might seem to leap out is that the two should be seen as separate entities, and separated, and that the best candidates for tests that seem to distinguish the disease need to be studied with large multi-site studies.

So I think it's quite possible that some useful conclusions may come out of the review. Oh, and if the review takes a close look at PACE (the study, not the spin), with no axe to grind, asking what it tells us about which subgroups are helped by which treatments (allegedly a key question for the review) then they may well come out of that with some rather scathing conclusions. I'm not blindly optimistic, but I don't assume a pessimistic conclusion either.

My main problem with all this is that this is an incredibly slow process, and while it's fine for them to go down that road, they need to make interim changes now. The letter and petition are aimed at what we think is the most realistic shot for a strong campaign to demand those changes, and I don't personally imagine that anything that happens now could be the final word on the case definition. I think pretty much everybody now recognizes that as soon as there's been proper, thorough investigation of biomarkers and other evidence-based diagnostic metrics, the emphasis around case definition will shift from the existing definitions to new and more 'evidence-based' criteria, so I personally see the CCC (or indeed the ICC) as inevitably short-term solutions while that other work is being done. I think that the emphasis around case definitions will increasingly move towards biomarkers and objective metrics in the coming years, and anything that happens now is bound to evolve as that evidence comes in. But in the meantime, we need recognition of something considerably better than Fukuda, especially to help make that research on metrics more meaningful and to reduce the number of patients with PEM or PENE who are being told to exercise and ending up bedbound as a result.

Mark June 11, 2013 at 8:12 pm
Ember

This initiative involves adopting the CCC, calling it ME and collapsing CFS as a diagnosis.

Yes.

No experts were consulted

You keep saying that, but that doesn't make it true. We've listed the people who were consulted, and stated that others were too, and you don't know and won't know who those people are if they don't want to be named.

but the campaign suggests that these ends are supported by the authors of the ICC and in particular by Dr. Carruthers.

No it doesn't.

On the other hand, your own campaign against the initiative suggests that you believe the ICC authors are opposed to the initiative. Do you have any evidence of that? Have you consulted the experts you're referring to, to find out whether they agree with what you're arguing? If you could get some kind of current statement from them on the matter, it might make your case stronger.

Mark June 11, 2013 at 8:32 pm
alex3619

If Dr. Unger is aware of the issues, then she is aware of the harm that the CDC is causing. Does that make her responsible? Shouldn't it mean she (or delegated people) need to form a group with concerned patients and expert researchers to rapidly change things? A new case definition could be argued for, but its too far off. Harm is being done now.

Wonderfully succinct, thanks Alex. I don't see how she can be 'aware of the issues' and yet unprepared to make any changes in the short term to mitigate the problem. Her perspective as a scientist on what needs to be done long-term to systematically work through investigating the issues is understandable, but the failure (by her and others) to respond in the short term to what a host of patients, researchers and physicians have been telling them for years – decades even – about the harm they're causing and about what can and should be done now to address that, is pretty much impossible to excuse.

taniaaust1 June 11, 2013 at 9:07 pm
MeSci

I'm very foggy at the moment too – there's a lot of it about!

I was starting to fill in my details but thought I had better make sure of what I was asking for, and was concerned that the Canadian criteria might exclude me due to the apparent necessity for significant pain, which I don't have. So I haven't signed it – yet.

I may reconsider when my head is clearer and I have been able to think about it properly.

Pain isnt necessarily for a diagnoses under the Canadian CFS criteria defination if you had an infectious illness type onset.

taniaaust1 June 11, 2013 at 9:25 pm
Ember

It would help if the advocates were well-informed. AIDS activists succeeded when they started doing their homework.

Being well informed doesnt mean they are going to agree with you… everyone has their own ideas on how to best how things progress forward.

taniaaust1 June 11, 2013 at 9:43 pm
WillowJ

this is sort of complicated. If you ask them what to do with an ME patient, they will refer you to the diagnostic and treatment protocols for CFS (or this is what they have done in the past). If you ask them why they are not treating CFS as a neurological disease, they will tell you CFS has a case definition distinct from the case definition for ME.

sorry I misread your post.. so have changed my now.. and yes I agree they always have known that ME is different to CFS.

I cant talk to how they are now thou but 5-8 years back as they had on their website in the CFS part in 3 different places that ME was a different illness to CFS. (Ive no idea if there any any reference to this there still today anywhere.. with site changes in the CFS section, this reference slowly was removed and last time I saw it on their site, I could only find mention of them being different in one place and it was in a very overlooked area of the info. I know their site has changed more since then)

I had back and forth communications over this with the CDC. I ended up emailing the CDC to clarify what was on their website and they confirmed they were different and that ME wasnt CFS. So I then emailed them back asking them for a definition of ME.. they didnt know and give me phone numbers and places I could contact to try to find out the answer to my question (which all ended up being dead ends as none of those knew how ME was defined either.. note not one person did say it was CFS). So i contacted the CDC back telling them I'd tried to follow up on the advice they gave me to find the answer to my question and at that point they offered to to ring me and we were going to talk about the ME situation with me.. unfortunately thou I was too ill to be talking on phones so had to drop our communications at that point. (I was trying to get other advocates to follow this all up at the time with the CDC but no one did).

But yeah.. they did say they were different things both in email and by their website. If they still say that.. that is an area which advocacy groups need to hold them on and target sometime and go "why?? is there no ME defination then on your website?" (which was going to be my ploy when I was communicating with them in the past, once I got a definition for ME which they agreed on either from someone they refered me to themselves for it or from them).

Kina June 11, 2013 at 10:06 pm

taniaaust1 — you see what the CDC had on their CFS page via the wayback machine.

Go to http://archive.org/web/web.php and paste the following url into the search box — http://www.cdc.gov/cfs/ (the http:// is already in the box), then click on 'take me back'. You will see that you can access pages right back to 2006 — just click on any date that has a blue circle.

It's a wonderful way to see what has been changed on websites :)

Kina

Ember June 11, 2013 at 10:19 pm
Mark

No it doesn't.

You deny that this campaign suggests that its ends are supported by the authors of the ICC and in particular by Dr. Carruthers. Yet here's how Mary addresses patients, caregivers and advocates: “As Dr. Carruthers stated in the ME Internatiional Consensus Criteria (sic)…. To that end, a group of patient organizations and advocates have submitted the letter at this link…" (emphasis added).

Mark

We've listed the people who were consulted, and stated that others were too, and you don't know and won't know who those people are if they don't want to be named.

When I've asked whether any medical or policy experts were consulted, I've been told that the individuals involved included “a few doctors,” but no policy experts:

The letter was in the works for about 6 months with numerous discussions across a number of organizations and individuals that included a few doctors and a number of long term advocates on how to frame the discussion and on what recommendations to make. All of the signatories were given the opportunity to provide input as did others. The final product was a result of that iterative process. You asked if we consulted a policy expert – we did not but we do recognize that there are huge policy issues to be dealt with which is why we included the planning recommendation (emphasis added)

You write that, as a board member, you have obligations to serve the interests of ME, CFS and ME/CFS patients:

The board members of all the ME/CFS non-profits are very much bound to consider the good of the entire patient population. As a board member of one of those non-profits that signed, it's my responsibility to act not in my own interests, but in pursuit of the non-profit's mission, which is basically to support and advocate for the whole ME/CFS population. I take that responsibility very seriously, and the interests of ME and CFS and ME/CFS patients – everyone – are always what I keep in mind. The same is true of the other PR board members and I am quite sure it is true of the other non-profit board members as well. That is what serving on the board of a non-profit means, there is no other motivation. I don't think we are any less bound than medical or policy experts in that respect.

As I've explained before, I'm not one with responsibilities to advocate for this patient population. And neither you nor Kina has given me any reason to believe that anything has changed since the expert opinion that I provided earlier was rejected. When I quote statements by the International Consensus Panel, you reject them as appeals to authority.

You claim that the opportunity for consultation is over:

The letter has already been sent, so the consultation period on that is over. The petition is already up, for people to sign, or not, as they prefer. The consultation period was extensive and included both representatives of all the organizations and the individuals who signed it, and I do consider that group to contain a number of people who are experts in the subject.

You make no mention above of having consulted with medical experts:

I have mentioned that I plan to contact some of the ICC authors; it would be good to get their view on the letter and on other matters too, but that's not really going to be a 'consultation' since the letter has already been sent. I'd be interested in their take on all this…. It's something I will try to get round to when I can find the time.

The opportunity for consultation lasted six months before the letter was sent. Three more weeks passed before the campaign was begun.

Mark June 11, 2013 at 10:44 pm

snowathlete: Great post, thanks for that. Worth a response in some detail I think…

snowathlete

Personally, I can see both sides of the argument here.

So can I, actually, even though I've been arguing one side on this thread. I think there are some valid issues there, but the practical question right now is whether to get behind this initiative or not. On balance I'd say there's much more good than bad in this, and while there's room for improvement in future, the most important thing to me is for as many people as possible to get behind a positive initiative, even if it doesn't give everything that everyone wants.

I like that people are trying to do something, and I believe that collaboration and getting several groups/people supporting an effort is a good way to go. Essential, actually.

Crucial point. The word 'consensus' is key for me: it implies a degree of flexibility and compromise. Getting lots of people together gives you the potential to achieve something. As a community, we sometimes spend far too much time focusing on the details that we don't like and not enough getting behind positive, though imperfect, projects. There's always something there to be found to criticize in anything; nothing's perfect. But we need a mass movement if we're going to apply pressure effectively, and a mass movement has to unite a lot of subtly different perspectives under one 'big tent'. I believe that realization is dawning on a lot of people in the ME/CFS world and we're all starting to work together a lot more effectively. It's very hard work to make that happen, but it is happening.

Change takes time, and you never ever win from the beginning, but arguments you make now set the sometimes un-acknowledged foundations for change to occur next time (or more likely, next year, couple of years…) so in this respect there is an opportunity, often, to refine what you actually want to happen as things progress, because when you ask for change, your first request never gets implemented in cases like these. In this respect I think it’s important that people don’t get disheartened by the reply and future replies like this. Its normal, and totally what I expected to happen. Change takes time.

Another crucial point. The landscape is always changing, and you build gradually on what came before. I'm personally not really expecting the details of the letter to all be implemented without further discussion, that doesn't seem likely to me no matter what you ask for, and even if it they were, it wouldn't be the end of the story or the end of campaigning. The point for me is to apply pressure and set out a clear vision of the direction you want to go. One way or another we have to get away from broad and useless case definitions and we need that as soon as possible, in order for that case definition to then evolve in a meaningful way. The CCC obviously isn't the final word, neither is the ICC. The point is to make progress rather than standing still; it's a process and a conversation, not something set in stone for all time.

But I can see some of Ember's arguments and questions are valid, and I think it's right to ask them, and for this advocacy group to improve in the way they work, because it’s all a learning process and no one expects anyone to get everything right first time, and what is 'right' is often a matter of opinion in some of these things, but getting it close (something that will progress things) is still a worthy effort and I support it.

It’s important to engage with people in the community that are asking fair questions (especially difficult ones) because it helps you improve – it’s a positive pressure, in my view…

The pressure may seem more positive from where you're sitting them where I'm sitting, to be honest :D ; I haven't really learned about any problems that I wasn't already well aware of and trying to work on, what I need is ideas and solutions and time and help to implement them. But I honestly do agree with you that some of Ember's questions are quite appropriate, and it's right to ask them. I wouldn't have spent so much time trying to answer them if I didn't, and I think there are some points in there which need some work.

Particularly in terms of how Phoenix Rising interacts with this whole process, that's the main thing that needs work, for me – there is a big and very important discussion to be had there and I believe we have the potential to contribute a lot in that area. I really don't want this thread to be about all that, because right now we want to focus on the petition and the campaign itself, rather than navel-gazing about how we make decisions as a community. But we honestly do want to have that discussion on how we can find a way for the community to engage with this work – honestly, the board doesn't want to have to make these kind of decisions on its own. The big problem there is that most of the work in these kind of initiatives just doesn't make much sense as open, public discussions. When you see letters signed by loads of prominent people and sent to newspapers, or governments, you don't see those letters being discussed and thrashed out in public before they're sent; most of the time that kind of process would undermine the whole effort. For impact, you sometimes need those things to be unveiled like a press release. Petitions are different; everyone can start them and everyone's free to sign up, or not. So part of the problem for PR is that we don't have elected representatives who can then work on advocacy efforts in confidence with a range of other groups. Other groups tend to work rather differently and they don't have public forums like ours for this stuff, so we're in a rather unusual position. We want to work with other groups, and our members have said they want us to do that, but the details do get complicated. We're still trying to figure out how all that might work.

And the whole question of CCC vs ICC is a totally legitimate question. That wasn't a straightforward or immediate question, and there's a range of views on it. In fact, personally my first instinct was for the ICC, but I was persuaded by the argument that the CCC has the benefit of a longer history of being used in practice – both clinically and for research – and the ICC would need more research, validation and momentum to be a practical target for this particular campaign. In the end, it's not just my point of view though, it's what the broad consensus is. I think part of the problem here is that for some in our community it feels strange that the conclusions of more than 6 months work kind of appear from nowhere, and the discussions that we now suddenly begin are the same ones that have been going on behind the scenes for some time. That's strange for us, because as I say, we're unusual in having this forum model of membership (and no formal membership or subscription scheme, at least not yet); it's not so strange for the other groups involved. I'd like to think that if we'd discussed all this openly we'd have all reached a consensus that everybody can unite behind and there'd be no more arguments or dissent at this point – but realistically I rather doubt that would ever be the case. There are always people with opposing views who just aren't ever going to compromise; you can't please all the people all the time, as hard as you may try…

I think there is a point where it can become counterproductive, but I think it takes both sides to engage on somewhat controversial topics like this. So long as all parties are respectful (which I think they have been on the whole) and the views being discussed aren’t extreme (and I don’t see any of that here) then I think it is beneficial. If one person asks the questions, and the other side doesn’t acknowledge them as fully as perhaps they should, then the first person gets frustrated and is likely to vent and others might be more reticent to support it. Especially in situations where one side has more power. Just like the CDC have more power than advocacy groups, advocacy groups have more power than individuals in the community, so it’s important for everyone to keep an open mind and engage with each other.

Would the advocacy group feel happier if Unger's letter was more engaging, maybe more open to further discussion? Even if it didn’t give any more actual ground? Yes, I think so. Same with advocacy groups when they get feedback from the community they represent. Just as we want the government agencies to listen, groups representing patients need to listen too; else it’s a flawed process and that would be the most damaging thing to efforts like these.
I'm not suggesting that this advocacy group hasn’t done that enough, btw.

I do think we've tried really hard to answer people's questions; I know I have and it's taken a lot out of me at a very busy time. Some of them have been really tough to answer, either because I didn't know all the answers on points of detail about the process, or because I've needed to check with others on what aspects were confidential or needed confirmation. It's also never easy to answer on behalf of a group, on behalf of a consensus process, and explain the rationale for decisions, especially when your individual answers are being taken as if they represent the opinion of the whole group, as if there were some simple and well-defined 'groupthink' opinion rather than the result of a process. And there's been CFSAC, and Invest in ME, and lots more besides going on at the same time, but people don't see all that other work and often want answers to their questions right away.

So your analogy with Unger's response to the community is a good one, but I'd just add that medfeb and I are just individuals too, in the context of the advocacy group, and indeed Unger is an individual within her own context as well; none of us have the power to make everything the way we want it to be, and none of us can fully represent the opinions of everyone in the group, even if we're seen as speaking on behalf of the group.

I think some of the posted answers in other threads on this topic were very helpful, but I favor the greatest engagement that is possible – there is usually room for improvement. From the posts here and in other threads, it looks like some people in the community might feel that they didn’t get any chance for input (even if their input was then ignored) and so that seems like a key are where improvement could be made, in my opinion.
I see this effort as progressive, so I support it, but I'd like to think that engagement in the future would improve and appear to be more open than it might have been this time. I’m not saying we should involve everyone, and have a show of hands, it can’t work that way, but again, more engagement, learning as we go along, taking feedback on board when the community raises it…that’s the way that advocacy groups will be most effective and have the most support from the community, which is important for the success of efforts like these.

As above, that's not just up to me, but I do want that engagement and that chance for input as much as possible. If we'd had a better response to our appeal for people to join an advocacy group, we'd have set that up and those people would probably have been involved in this process, so in that sense there was an opportunity to be involved which wasn't taken up. We did join this particular process a bit late in the day, and it has never been a public discussion for the reasons I mentioned above. It is really hard to figure out how it ever could be, but believe me, we are all listening to the points made and trying to figure out a way to get that involvement. I will say one thing though: there has never been any barrier to people contacting me and offering to get involved in the work on this or on anything else. The people who do all this stuff are the people who have volunteered to do that work, and we do want lots more people to join the team and help out with that. Very few people seem to want to be involved at that level; they generally want to spend a few minutes making comments or suggestions but don't have the time and energy to think through all the ins and outs, but when you're spending 6 months discussing complex issues with a large number of other representatives, a degree of commitment is necessary to work through all those issues. But anyway, figuring out a way to canvas opinion without compromising embargoes and confidentiality, and how to give a clear route to engagement in this process for PR members, is very much on the agenda.

As with all this stuff, especially in our community with lots of conflicting views, it is important for everyone to acknowledge, and accept, that things aren't ever black and white. The world is composed of gray! Gray is progress, and we might need to compromise on the shade.

Absolutely, and amen to that! If you want to work as part of a team, that's an essential requirement.

alex3619 June 11, 2013 at 10:56 pm

I have a question for Ember : who in your opinion are ME policy experts? I am not aware of any. One of our big issues is we have been focussing on the science, which after all is what will lead to a cure, but we have not been focussing much on politics. Any policy expert needs a really good grasp of politics for a start, including bureaucratic issues of the country they are in, and the technical and personal issues involved in ME. I am unaware that we have anyone who really fills that role. I think we will in time, but how that happens is by engaging in politics, not just technical issues involving goals and science.

I do distinguish here beteen policy experts, expert scientists, expert doctors and expert patients. None of these categories are synonymous. Furthermore I am less than convinced that policy experts from HIV or MS activism can help us much, as these two issues are substantially different to ME advocacy.

Ember June 11, 2013 at 11:18 pm
alex3619

I have a question for Ember : who in your opinion are ME policy experts? I am not aware of any.

The letter to DHHS demands that the “key stakeholders ME patients and ME experts must be engaged in a full and open partnership to plan for and ensure implementation of this change.” Earlier I asked whether those frequently cited in the letter were even afforded the courtesy of reviewing it before it was sent.

Mark originally wrote, "It is expected that as additional data is obtained, this definition will evolve. This must be done in partnership with the experts who developed the ME-ICC and the CCC."

alex3619 June 11, 2013 at 11:31 pm
Ember

The letter to DHHS demands that the “key stakeholders ME patients and ME experts must be engaged in a full and open partnership to plan for and ensure implementation of this change.” Earlier I asked whether those frequently cited in the letter were even afforded the courtesy of reviewing it before it was sent.

Which does not answer my question. We have no policy experts. We have stakeholders, medical experts, scientific experts and expert patients. The way forward is to engage in the politics and learn. Expert policy arises from experience as much as knowledge. Politics is also not science – its often irrational. Many of us struggle with this. I fully expect we will make mistakes. We (the ME community and advocates) have made a lot of mistakes in the past, and have failed to grasp the historical forces arrayed against us. We will learn though, and over time we will improve. There is no fast way to do this.

Reason and evidence often fail, have often failed, and will continue to fail. They can support good politics, and in my view make for superior politics and policy, but do not typically enhance change by themselves. If they did then the evidence would clearly have prevented the creation of the category CFS and all of the CBT/GET approaches to treat both CFS and ME. Ramsay himself was aware of the issues that led to the current disaster, something I did not know till last week, and I am still trying to get the documentation that discusses this. When I do I will probably blog on this.

The engagement of ME experts and patients in debate and formulation of strategy is a necessary step, but is not going to produce rapid change. CFSAC has been a toothless tiger, which I think has led some to question why we bother, but this misses the point. CFSAC and similar activities engage our activists, doctors and researchers and we learn. This learning has been slow, yes, but we still learn. Global advocacy is starting to merge. Strategy is being formulated. We will make mistakes, but this is not a game we can quit, and in time we will see change.

Ember June 11, 2013 at 11:41 pm
alex3619

Which does not answer my question.

Of course it answers your question because you asked me my opinion! For any workshop on case definitions, the cry has gone up for ME experts to be involved. This initiative involves issues of disability benefits, etc., so I asked specifically about policy experts too. As Mary wrote, "We do recognize that there are huge policy issues to be dealt with."

Mark June 12, 2013 at 12:09 am
Ember

You deny that this campaign suggests that its ends are supported by the authors of the ICC and in particular by Dr. Carruthers. Yet here's how Mary addresses patients, caregivers and advocates: “As Dr. Carruthers stated in the ME Internatiional Consensus Criteria (sic)…. To that end, a group of patient organizations and advocates have submitted the letter at this link…" (emphasis added).

The extract you're referring to in full:

As Dr. Carruthers stated in the ME International Consensus Criteria, “Research on other fatiguing illnesses, such as cancer and multiple sclerosis, is done on patients who have those diseases. There is a current, urgent need for ME research using patients who actually have ME.” We must have a disease appropriate definition for ME that is separate and distinct from all the other unrelated conditions encompassed by the overly broad, fatigue-focused “CFS” definitions.

To that end, a group of patient organizations and advocates have submitted the letter at this link (http://bit.ly/18hDBE4)
asking the Department of Health and Human Services (DHHS) to adopt the Canadian Consensus Criteria, to stop using the term “CFS” and the non-specific definitions like Oxford and Fukuda and to fully engage ME patients and experts in the planning and execution of this transition.

To me, that extract in no way suggests or implies that Dr Carruthers supports or has signed the initiative, nor does it mislead the reader into assuming that he agrees with everything in the letter. It says that the letter is submitted in pursuit of the objective that Carruthers (et al, if you like) stated: "ME research using patients who actually have ME", and that is true.

If you read something else into that extract, I can't help you any further. Anyone else can read the above extract and make up their own minds as to whether there is anything improper or 'intellectually dishonest' in it. I don't, you apparently do, I don't see what more there is to say on this. There's a limit to how much time I can spend dancing on the head of this particular pin with you, and I think we're pretty much there.

When I've asked whether any medical or policy experts were consulted, I've been told that the individuals involved included “a few doctors,” but no policy experts:

And as the extract also states, patients and experts must be fully engaged in the planning and execution of this transition.

You write that, as a board member, you have obligations to serve the interests of ME, CFS and ME/CFS patients…As I've explained before, I'm not one with responsibilities to advocate for this patient population.

And at the end of the day, that's why you weren't consulted during the planning and preparation of this initiative. If you had taken on such responsibilities, you almost certainly would have been.

And neither you nor Kina has given me any reason to believe that anything has changed since the expert opinion that I provided earlier was rejected.

By the expert opinion you provided, I presume you mean the extract(s) from the ICC that you quoted? Two reasons why they didn't change anything: firstly, everybody involved has already (I expect) read the ICC at some point during the last 6 months of discussion; secondly, the letter has already been sent to the DHHS a month ago having been approved by 9 organizations and 26 advocates. If you're hoping that we will all now reconvene, change the letter, approve it, sign it, and re-send it stating the ICC instead of the CCC, because of the quote(s) from the ICC that you've provided, then you're setting yourself up for disappointment. If there's a realistic and achievable change that you'd like to see, then please be specific on what that is.

When I quote statements by the International Consensus Panel, you reject them as appeals to authority.

I said earlier on the other thread (to paraphrase myself) that all your arguments as to why we should use the ICC ultimately boil down to saying that we should do so because the ICC says that we should do so – adding that they are, in your words, 'the experts'. Much as I love the ICC, I don't think the ICC authors are the only experts in the subject, but even if they were, your argument is still simply an appeal to authority. And even if one accepted that argument, it's still not relevant to the issue which drove the choice of the CCC for the letter, which is that the CCC is generally considered, by consensus of those who signed the letter, to be a more achievable and realistic goal in the context of this campaign because the CCC is more established and has already been used extensively both in research and clinical settings.

You claim that the opportunity for consultation is over

Yes, the opportunity for consultation on the contents of the letter which was sent to the DHHS a month ago is well and truly over. Public discussion and consultation about a range of other matters related to this campaign has clearly only just begun.

You make no mention above of having consulted with medical experts

The named and unnamed doctors we've mentioned clearly don't classify as medical experts in your definition, even though you don't know who all of them are. But I think I've said all I have to say about who was consulted during the drafting of the letter.

The opportunity for consultation lasted six months before the letter was sent. Three more weeks passed before the campaign was begun.

I've addressed some issues around the consultation process in some of my posts above, particularly the reply to Snowathlete. There is no opportunity to change the past here. There may be opportunities to evolve and improve the consultation model in future, and all practical ideas about how to do that, which address the issues I've mentioned above, will be welcome.

By campaign, I guess you mean the petition that was set up when patients here and elsewhere asked for a way to show their support for the letter. In which case, yes I guess it did take about 3 weeks for that to be set up.

Mark June 12, 2013 at 12:15 am
Ember

Mark originally wrote, "It is expected that as additional data is obtained, this definition will evolve. This must be done in partnership with the experts who developed the ME-ICC and the CCC."

I don't think it was me who wrote that, it looks like a quote from either the letter or the FAQ. When you quote sources, could you give some reference for them please, it gets very difficult to check the context of what you're referring to otherwise. If you quote from a forum post, there's an arrow in the quote that lets you jump to the original, confirm that the quote is accurate, and see the context for it.

Mark June 12, 2013 at 12:23 am
Ember

Of course it answers your question because you asked me my opinion!

I'm darned if I can see how your post in #67 answers Alex's question in #66. I'm still in the dark, after reading that post, as to who, in your opinion, are ME policy experts?

Valentijn June 12, 2013 at 12:29 am
Ember

Input from members of Phoenix Rising wasn't invited, and experts weren't consulted.

The stance of people incapable of compromise is probably one reason it didn't happen. Another would be that they were probably tight on time by the time PR got involved.

Opening a project to public comment can completely kill the entire project when bickering like this results.

If we do end up with a proper committee for this sort of thing, and forum members are representing the view of the entire forum, I would not be upset if there were people on that committee with view points who differed from my own. But under no circumstances could such a committee accomplish anything useful if there's one or more members so fixated on having things done their own way.

Sasha June 12, 2013 at 12:54 am

I'm coming to this discussion very late and don't have time to post much. But, I think we need to look at the big picture now to make our individual decisions about whether to sign the petition. Questions have been raised about the process by which CCC was favoured over ICC and I hope that the advocates will be looking at those questions about process and taking them into account when planning their next campaign. In particular, if there's an issue likely to be contentious – such as ICC vs CCC – it would be a good idea to address that in the call for public support, when it's released.

It's a new thing for us to have these joint advocacy actions and it's a crucial and potentially very powerful new development – but, being a new one, it's going to take a while to learn the best way to engage the whole community's support. I think we should be supporting our advocates through this process.

So, big picture:

  • Our lives are damaged every day the official name of our disease is 'chronic fatigue syndrome'.
  • There isn't much difference between the ICC and the CCC: the former is an evolution of the latter.
  • The ICC is relatively new and untested and its widespread adoption would probably also be contentious.
  • The CCC is a huge improvement on the defintion that the CDC has been using – by a million miles.
  • No advocacy initiative will ever be perfect. Ever.
  • The petition has already been launched. To stop now, swap out the CCC for the ICC and relaunch it 'because we didn't consult everybody and some other people thought differently' would be political suicide, not just for this initiative but quite possibly for any future initiative that our advocates care to launch. Our community would be a mockery.
  • The failure of this petition would help the CDC to forever dismiss calls for change both on the name, and their appalling criteria.

Our advocates are finally, after years, coming together and beginning to launch these powerful actions which have paid off so spectacularly in the past year. Let's support them. None of their intitiatives will be perfect in our eyes. Not one. But if an initiative will improve our lives, we should support it.

I've signed the petition.

Ember June 12, 2013 at 4:10 am
Mark

To me, that extract in no way suggests or implies that Dr Carruthers supports…the initiative…. There's a limit to how much time I can spend dancing on the head of this particular pin.

We live by different standards, Mark. I call that dancing.

Mark

By the expert opinion you provided, I presume you mean the extract(s) from the ICC that you quoted?

No, that's not what I meant. My example didn't involve you.

Mark

Much as I love the ICC, I don't think the ICC authors are the only experts in the subject.

Out of curiosity, what ME experts do you imagine bringing to the table?

Mark

I don't think it was me who wrote that…

Here's the link to the statement of yours that I quoted.

Mark

I'm still in the dark…as to who, in your opinion, are ME policy experts?

By policy experts, I meant medical experts experienced in writing case definitions or alternatively personnel experienced in administering benefits policies. I wasn't trying to be definitive.

Ember June 12, 2013 at 4:12 am
Valentijn

But under no circumstances could such a committee accomplish anything useful if there's one or more members so fixated on having things done their own way.

I agree. I wouldn't even consider joining an advocacy committee that didn't take its role in consulting with experts and recipients as fundamental to its effectiveness.

Ember June 12, 2013 at 4:16 am
Sasha

But if an initiative will improve our lives, we should support it.

That's the judgement that we're being asked to make. Will this initiative improve patients' lives? We disagree in our assessment.

Valentijn June 12, 2013 at 4:23 am
Ember

I agree. I wouldn't even consider joining an advocacy committee that didn't take its role in consulting with experts and recipients as fundamental to its effectiveness.

Your stance isn't one of "we should consult so-and-so" – we heard that already. It's coming across very much as "I think things should be done a very specific way, and I will argue until I'm blue in the face and everyone else gives up."

I respect your views, but when you endlessly repeat them and refuse to accept reality, then you are creating a problem where there doesn't need to be one. Regardless of what is ideal, our first requirement is to pursue goals which are achievable. CCC is much more achievable than ICC at this point in time, and it is HUGE progress compared the Fukuda and Oxford definitions.

When you criticize advocates at great length because they went with the less-ideal and more-realistic option, you are discouraging any progress whatsoever. You're shutting down constructive discourse by attacking any attempt that isn't perfect. When you do this, it is far more harmful to us than helpful.

In your case, where you are so unwilling to compromise and accept advocacy efforts which do not meet your exacting standards, the only solution is to engage separately in your own advocacy. Perhaps there are others with a similar hardline stance who have exactly the same views as you, and working with them might be possible. But your all-or-nothing approach is not going to be compatible with moderate and realistic advocacy – you'll probably be happier if you disengage with such advocacy, and it would probably create far fewer headaches and unpleasantness for the rest of us.

golden June 12, 2013 at 5:41 am

Can I ask,

What are the differences between the CCC and ICC criteria?

why dont people feel the ICC criteria is achieavable ? (or appropriate)

Sasha June 12, 2013 at 5:45 am
Ember

That's the judgement that we're being asked to make. Will this initiative improve patients' lives? We disagree in our assessment.

I'm surprised. I thought you were arguing for the ICC over the CCC in the petition, not for the status quo.

Are you saying, then, that you'd prefer the disease to continue to be called CFS rather than ME and that you'd prefer the CDC to continue using their current, vague criteria rather than adopting the CCC? Because that's all that's on the table. That's the initiative that has the chance to improve patients' lives.

I thought your basic point was that you would prefer the petition to call for the adoption of the ICC rather than the CCC but I can't see where you want your arguments to now lead in practice. Do you really want this group of advocates to now announce a re-consultation with an even wider group, announce the suspension of the current petition (as they'd have to) and then, even if the ICC comes out on top, launch a new petition asking for the ICC rather than the CCC? What credibility would such a petition have in the eyes of the CDC? What credibility would our community have? What about all the patients now arguing for the CCC because they see it more realistic? What credibility would any of our advocates be left with for any future advocacy action after such a shambles?.

I see the pursuance of your position as disastrous. It's one thing to wish that things had been different but another to persist in trying to change them after the fact when that would have damaging consequences.

Firestormm June 12, 2013 at 5:47 am
golden

Can I ask,

What are the differences between the CCC and ICC criteria?

why dont people feel the ICC criteria is achieavable ? (or appropriate)

Ever heard the analogy: 'can of worms'? :) Only kidding. Your question gets to the nub of things but will take a while to debate 'which one is better' and 'achievable' if indeed either really are.

Personally, I surrender :) Always liked Status Quo myself. Was a bit of a 'rocker' in my youth. Some also say I like sitting on the fence and letting others decide my 'fate' – but it doesn't half leave you with a sore bum :) :)

Sorry. No offense folks….

Bob June 12, 2013 at 5:59 am
Mark

Very much a non-answer, yes Bob.

I'm not completely pessimistic about the systematic review though. I think something useful might come out of that, and from the other initiatives (like the CDC multi-site study). I find it quite understandable that the federal agencies feel the need to proceed in that way, and respond to these requests with the kind of tools they have, and nobody (I think) disagrees with Unger about the importance of finding biomarkers and other evidence to support eventual definitions. The problem as I see it is all the ongoing harm that's caused while they're working through all that, when there is already more than ample evidence of that harm and it's clear that short-term solutions to the problem of the "wastebasket" they've created for us are available now. (And of course we have no real basis for confidence that they'll do a good job of it this time, and plenty of reasons to fear that they're still determined to do it in a way that completely misses the point).

So I'm not blindly optimistic about what the systematic review will throw up, but I found a few of the comments about it at CFSAC fairly promising. One key point that was stressed is that really what it will tend to do is identify the gaps in the research; the key issues, the unknowns, the things that need to be clarified – and that this will then be used to guide what research should be done next. It's quite interesting to think about what that might highlight. If it concludes that the research so far doesn't amount to much, then it has to also conclude that much more research is needed. If it finds issues like NK cells and other immune abnormalities inconclusive, then it pretty much has to say what needs to be done to resolve those questions. And assuming it reviews both of the halves of the literature that you describe, Bob, then it would seem to me that the picture you have sketched is accurate: there are two camps, one researching one broad definition and CBT, and the scientists researching the biology of the disease using a narrower definition. One possible conclusion from that picture that might seem to leap out is that the two should be seen as separate entities, and separated, and that the best candidates for tests that seem to distinguish the disease need to be studied with large multi-site studies.

So I think it's quite possible that some useful conclusions may come out of the review. Oh, and if the review takes a close look at PACE (the study, not the spin), with no axe to grind, asking what it tells us about which subgroups are helped by which treatments (allegedly a key question for the review) then they may well come out of that with some rather scathing conclusions. I'm not blindly optimistic, but I don't assume a pessimistic conclusion either.

My main problem with all this is that this is an incredibly slow process, and while it's fine for them to go down that road, they need to make interim changes now. The letter and petition are aimed at what we think is the most realistic shot for a strong campaign to demand those changes, and I don't personally imagine that anything that happens now could be the final word on the case definition. I think pretty much everybody now recognizes that as soon as there's been proper, thorough investigation of biomarkers and other evidence-based diagnostic metrics, the emphasis around case definition will shift from the existing definitions to new and more 'evidence-based' criteria, so I personally see the CCC (or indeed the ICC) as inevitably short-term solutions while that other work is being done. I think that the emphasis around case definitions will increasingly move towards biomarkers and objective metrics in the coming years, and anything that happens now is bound to evolve as that evidence comes in. But in the meantime, we need recognition of something considerably better than Fukuda, especially to help make that research on metrics more meaningful and to reduce the number of patients with PEM or PENE who are being told to exercise and ending up bedbound as a result.

Interesting thoughts, thanks Mark.

I haven't yet seen the section of the CFSAC meeting where they discussed the systematic literature review. I'm waiting for the videos to be posted online. But, based on past history of CFS, and my limited understanding of systematic reviews, I'm not optimistic. I think that systematic reviews tend to be very conservative, by their nature, and not at all forward looking or radical. They also don't always necessarily discriminate bad research from good research, or certainly not in robust terms. I don't think we should expect much from it. But I'll be delighted if I'm proved wrong.

golden June 12, 2013 at 6:20 am
Firestormm

Ever heard the analogy: 'can of worms'? :) Only kidding. Your question gets to the nub of things but will take a while to debate 'which one is better' and 'achievable' if indeed either really are.

Personally, I surrender :) Always liked Status Quo myself. Was a bit of a 'rocker' in my youth. Some also say I like sitting on the fence and letting others decide my 'fate' – but it doesn't half leave you with a sore bum :) :)

Sorry. No offense folks….

Oh!

Well what do you do with a can of worms?

Find a nice meadow, and release them to make rich soil so that the plants grow strong and well :)

I only interjected so I could make an informed decision to sign the petition or not….

So far, I think all points have been well raised . But I am not aware of all the goings on.

I dont think debating should be a cause for concern. But also , even if the petition was suspended and updated – i think this is admirable not shameful.

Sometimes its a bit embarrassing (pasty tax) etc. sometimes enlightening – 'we have listened to the people and are changing appropriately' …. So I wouldn't worry about losing face.

Personally , I find the WORST problem to be a 'psychiactric definition by default' -

And I think this fundamentally creates all this label chaos…

As for 'compromise' – sometimes its OK and sometimes it really does harm.

Mark@

I said to my friend – there is a new campaign that states Fatigue is nothing a disease …

And he nearly blew my head off in my defence ….

It took me ages to try to explain to him it was for my benefit – he would not agree .

You make very good points. –

I remember the worst abusive doctor i ever had the misfortune to seek help from.

I was very flexible in those days , and I stated "I can see the problem with putting names to things " as we discussed labels . (He wrote this in my medical notes in fact. He was agreeing . Then next to it he wrote "Depression".

This was ridiculous. Depression by default – soon after -another Doctor clearly stated M.E.

MeSci June 12, 2013 at 6:52 am
taniaaust1

Pain isnt necessarily for a diagnoses under the Canadian CFS criteria defination if you had an infectious illness type onset.

I don't think I had, unless it started a lot earlier and at a very low level. Mine (at least when it became obvious) followed prolonged stress, over-exertion, depression, diarrhoea, vomiting and malnutrition.

alex3619 June 12, 2013 at 9:28 am
MeSci

I don't think I had, unless it started a lot earlier and at a very low level. Mine (at least when it became obvious) followed prolonged stress, over-exertion, depression, diarrhoea, vomiting and malnutrition.

Hi MeSci , all conditions which can cause dormant pathogens you are already carrying to reactivate as your immune system becomes stressed. I am very mindful of a paper last year that showed every pathogen we are considering might trigger ME infects two things: the gut and B cells.

Enid June 12, 2013 at 9:53 am

I must say as a non scientist that to idiots even like me that continued pressure on the immune system (ie persistant chronic viral/bacterial infections) must wear down. Fatigue is common to all illness – about time they sussed this one out.

Firestormm June 12, 2013 at 10:36 am
Angelina LeBaron

Hello Firestorm,

The phrase "fatigue is not a disease" came from Erica Verrillo. See ProHealth post: http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=18131

Thanks. Very kind. Sorry I haven't acknowledged before :)

Mark

Answered by someone else above (thanks!) but as to the title of the article, it's taken from the title of the petition.

I find the point that golden makes – that this might be a risky slogan, because it could be turned around against us – quite interesting and thought-provoking. I've been reflecting on that, and my thought is that in the end this just illustrates what a good issue it is to highlight. What we're really saying here is: This is a disease, not (just) fatigue. It's a starting point for thought about the issue, and yes anybody could take it in either direction, but if somebody were to say "yes, fatigue is not a disease, it's just fatigue, so you shouldn't call it a disease" then the answer is easy: list all your other symptoms and say "exactly, I don't have fatigue, I have a disease with many symptoms, so the name is completely inappropriate for me (and for M.E.)".

I wonder whether any good slogan is open to cynical misinterpretation to mean the opposite of what it says. I think maybe the value of any slogan is that it opens up a sharp and important question and makes it clear what the issue is, but slogans in themselves never prove anything or win arguments.

Having said all that, "This disease is not 'fatigue'" might be better.

Hmmm…

For the record I'd assumed 'fatigue is not a disease' came from Unger given it was in the title of this article; sorry about that dude.

You know I'd written some bumf about my ruminations on this phrase but then deleted it all to spare you further pain ;)

Let me just say that I disagree with some of the thinking over this phrase and the way it has been used.

Patients in general do not like the word fatigue because the single word does not sum-up all that they are experiencing. How can anyone encapsulate all of 'this' in a single word? How dare they.

Is 'chronic fatigue' any better? Hmm… if 'fatigue' is experienced by someone with MS as a symptom caused by the inflammation of the myelin sheath – then is this a satisfactory description when applied to someone with – I don't know – cancer?

And so 'our' chronic fatigue is actually far worse than that experienced by someone with only cancer-induced-fatigue. Hmmm….

"This disease is not just fatigue!"

Any better? You know there are some who believe they do not have 'fatigue' at all. No exhaustion. But still have ME. Interesting, don't you think?

Fatigue is not a sign it is a subjective symptom – though probably not one that patients actually use: so they might say 'exhausted' and a doctor interprets this as 'fatigue'.

The issue here is also that fatigue is not specific – it doesn't allude to a cause. And it can't – at least not yet. Although patients would rather see 'immune dysfunction' or something even 'brain inflammation' rather than the fatigue that they feel. Interesting…

As a patient I'd like to have something that labels me with a word people recognise as something serious – a reflection of my inability to function at normal levels; a reflection of my struggle; my pain. People who don't know me.

I'd really like people to ask me 'what's wrong?' and for me to be able to tell them my diagnosis and for them to say 'well you are coping remarkably well. I've heard of that. Very nasty.'

A word like 'cancer' would do it. Of course I have no idea what it's like to live with cancer or to live with the effects of chemotherapy. But a name like cancer carries connotations that a word like 'fatigue' doesn't.

However, our label is not just 'fatigue' it is Chronic Fatigue Syndrome. Like it or not. And fatigue is not a disease but CFS is. To the extent that it is currently reflective of patients who present with a cluster of symptoms – one of which is 'fatigue' as defined by whatever criteria a doctor cares (or doesn't care) to use.

Unfortunately, few diseases carry the connotations that cancer does and CFS is one of them. But CFS as a name could be improved but then so could understanding – through education. The name will be changed as and when people are phenotyped I would imagine. You'll see them 'drop-out' into other small pots.

So this is really about how doctors diagnose their patients – if you read that lady's article from which the quote appears; isn't it? That they shouldn't 'simply' diagnose someone because of their reported or interpreted 'fatigue-state'.

That there's more to this diagnosis – this disease – than simply fatigue. And there is.

Ha! And I said I was going to spare you :) Promise my earlier draft from yesterday was worse :nerd:

Nielk June 12, 2013 at 11:24 am
Firestormm

As a patient I'd like to have something that labels me with a word people recognise as something serious – a reflection of my inability to function at normal levels; a reflection of my struggle; my pain. People who don't know me.

I'd really like people to ask me 'what's wrong?' and for me to be able to tell them my diagnosis and for them to say 'well you are coping remarkably well. I've heard of that. Very nasty.'

Yes, I think that we would all like that , but I think the issue here is much more grave and dangerous. The problem as I see it with the current name of CFS is that the medical community has such a dismissive way of dealing with the patients it labels, that it borders on dangerous.

Because of my CFS diagnosis, my local GP thinks of me as a complainer and exaggerator. When I tell him that I have been bed bound for months, he gives me a smirk and thinks of what new antidepressants he can shut me up with. When 6 months ago, I came in with scary new symptoms of numbness in my lips and tongue, he laughed it off as a sign of stress. Knowing better than that, I followed up with a neurologist who took an MRI of the brain. They found I had a brain tumor for which I needed radiation therapy.

I spoke about this in my CFSAC testimony. Very few doctors will take this illness seriously with the current name of Chronic Fatigue Syndrome. This is where the viscous cycle begins. Unger says, before we can change the name or choose a set of criteria we need studies, research, biomarkers..etc. But, how can we have the proper studies and research when so few are taking this illness seriously or when there is no funding for us available. If we had a proper name and a proper set of criteria, it will naturally follow with more interest and funding……

MeSci June 12, 2013 at 1:08 pm
alex3619

Hi MeSci , all conditions which can cause dormant pathogens you are already carrying to reactivate as your immune system becomes stressed. I am very mindful of a paper last year that showed every pathogen we are considering might trigger ME infects two things: the gut and B cells.

I expect all people are carrying inactive pathogens from past infections, and that the difference with ME is additional stressors or combinations of stressors.

It still doesn't account for those of us who get very little pain so would seem to fall through the CCC definition. Unless I have missed something. My IQ is rather lower than usual!

Mark June 12, 2013 at 3:10 pm

A few recent posts wondering about fatigue and pain have reminded me of Rayhan's thought-provoking presentation at IiME (see http://phoenixrising.me/archives/17049). A couple of them on this thread, so I'll just briefly summarize the idea.

In GWI, they seem to be finding two groups of post-exercise response: post-exertional fatigue and post-exertional pain. They found correlations between those findings and their brain scans: it appeared that those with post-exertional fatigue had increased compensatory brain activity in activity-related areas of the brain, whereas those with post-exertional pain had increased compensatory brain activity in pain-related areas of the brain. It's a fairly small study, and not published quite yet I think, but it suggests an intriguing hypothesis. Their basic idea from these findings is that the fundamental problem is some area of the brain that is damaged, and under physical stress, the brain compensates for that by using other areas of the brain; if it uses 'pain areas' you get post-exertional pain, and if it uses 'fatigue areas' you get post-exertional fatigue. A very rough and crude description on my part, but I think that's the basic idea. Since seeing that presentation, I find that I thinking about it quite a bit: the distinction between fatigue and pain as two kinds of downstream symptoms, and the idea that these different symptoms might stem from a common source of dysfunction, might make a lot of sense in terms of understanding some of the more mysterious aspects of the heterogeneity of ME/CFS.

alex3619 June 12, 2013 at 3:20 pm

Hi Mark, even if that describes much of the pathophysiology it does not mean the cause is in the brain. The brain could be compensating for peripheral damage, or even just deranged peripheral signals (including small fiber polyneuropathy).

In the case of ME there is now ample evidence of CNS dysfuction, including lesions, and also peripheral dysfunction. It might however help explain some of the range of symptomology in ME, and also some of the data coming from studies like the Light's exercise research. Presuming of course that similar findings can be made in ME, which might not be the case.

One of the things I keep asking myself is what if many of these disorders are the same disorder, but they involve so many systems that individuals vary greatly in their response? Such would then appear to be multiple syndromes: fibro, ME, IBS, MCS, GWI etc. There would also be considerable overlap between syndromes, which is what we also see.

If Rituximab pans out then most theories of ME are dead or dying, at least with respect to the responding subset. Every theory will have to take into account why depletion of B cells results in a cure or substantive remission.

Alex.

Sasha June 12, 2013 at 3:41 pm
Mark

Their basic idea from these findings is that the fundamental problem is some area of the brain that is damaged, and under physical stress, the brain compensates for that by using other areas of the brain; if it uses 'pain areas' you get post-exertional pain, and if it uses 'fatigue areas' you get post-exertional fatigue.

Thanks for that summary – unfortunately I was experiencing post-exertional stupidity o_O when I read about his work and couldn't get my head round it so this is most helpful!

rlc June 12, 2013 at 4:39 pm

Hi Golden, RE

Can I ask,

What are the differences between the CCC and ICC criteria?

The main differences between the CCC and ICC criteria are, that the CCC is a criteria for ME/CFS it states that ME and CFS are the same disease! It only states that some more symptoms should be required for a diagnosis than are included in the CDC Fukuda definition.

A review of faults in the CCC can be found here http://www.hfme.org/canadianreview.htm

This makes the entire point of the letter to Kathleen Sebelius secretary of DHHS completely redundant, because they are asking for ME to be seen as a separate disease to CFS, and are asking for the use of the CCC, but the CCC says that ME and CFS are the same disease.

Which is why I urge people not to sign this petition, because it will only continue the false view that ME and CFS are the same disease.

The principle author of the CCC is the same as that of the ICC, in the ICC they corrected the mistakes of the past, and stated that it is a definition for ME only, and stated that ME is not CFS.

Another main difference between the CCC and the ICC, is that the CCC states as do the CFS definitions such as Fukuda that adult patients must have the symptoms for six months before they can be diagnosed.

Making patients wait six months before they can be diagnosed is from a medical and patients suffering point of view in my opinion complete madness!!

The ICC has corrected this and doesn’t require patients waiting for six months before they can be diagnosed.

A more detailed account of some of the faults in this petition can be found here http://www.mecfsforums.com/index.php/topic,16318.0.html

My personal opinion is that the use of the CCC, will be disastrous for ME patients. Because it says that it is the same disease as CFS, and the only real difference between it and Fukuda is that a few extra symptoms are required. By continuing the wrong belief that ME and CFS are the same disease it only plays into the hands of the likes of the CDC, it gets them off the hook for not investigating ME.

However these are my opinions and I do not wish to try and force them on others.

I would though suggest that every one considering signing this petition makes themselves very acquainted with the real facts before signing it. Unfortunately the US orgs have followed their usual protocol of asking for peoples signatures without consulting people first, which makes people feel rushed to sign it without a full knowledge of the facts.

My recommendation to people because this is such an important matter, is that they take the time to read and fully understand the letter from the US CFS orgs to the Secretary of the DHHS Kathleen Sebelius, the CCC, the ICC, and the International Association for CFS/ME Primer which is being recommended by the US orgs in their letter. And once people have acquired a full understanding of these documents they can make the discussion for themselves, without in my opinion being railroaded into signing it by the US CFS orgs when people don’t have all the fact.

If people do not have the energy for reading all these often very lengthy and medically technical documents, I suggest that they simple abstain from voting, rather than risking signing a petition that could potentially have a very detrimental effect on their chances of ever getting effective treatment.

Hope this helps

All the best

urbantravels June 12, 2013 at 5:01 pm

I say we go back to calling it "atypical polio" and be done with it.

urbantravels June 12, 2013 at 5:06 pm

Or we can just use "Akureyri disease". It will baffle almost everyone – the population of Iceland is only 300,000, and the rest of the world won't recognize the name or have any already-formed prejudice about it. It will sound quite impressive. But we'll have to learn how to pronounce it first.

SOC June 12, 2013 at 5:15 pm

Okay, maybe I'm oversimplifying the matter, but sometimes it helps to look at the forest and ignore the trees.

DHHS needs to understand that there's a lot of us (with supporters) who are seriously concerned about the problem of the name CFS and the use of ridiculously broad criteria like the CDC Empiric or Oxford. The likelihood that anything will happen exactly as requested in the petition is nil. The real benefit of this petition is most likely to be the whack upside the head that some individuals in positions of authority will get — a realization that there are a lot of us and we mean to start knocking on their doors.

This is our own version of "I'm mad as hell and I'm not going to take it any more!" It's our line in the sand. This is about standing together and making ourselves heard. It's political, not scientific. The details are irrelevant. Does anyone really expect the DHHS to say, "Oh yes, you're exactly right, nail on the head. We'll do exactly as you say."? Of course not. The details are going to be argued and debated to death after the petition is read however we write it. What is important is that we are seen and heard as a community to contend with. For that we need to forget our differences and get ourselves heard. This petition can do that for us if all of us unite and sign this petition as a message to DHHS that we are here and we intend to be heard.

rlc June 12, 2013 at 5:54 pm

Hi SOC, RE

This is our own version of "I'm mad as hell and I'm not going to take it any more!" It's our line in the sand. This is about standing together and making ourselves heard. It's political, not scientific. The details are irrelevant.

I was under the impression that one of the things that people are as mad as hell about, was the continual attempts to ignore the existence of ME, and trying to say that ME is just another name for CFS.

So I don’t see that asking for a Definition the CCC that says that ME and CFS are the same disease is going to help the problem.

Personally I think people should be getting as mad as hell with the US CFS advocacy groups, who are taking money from ME patients in the form of donations, not even consulting with the patients and then telling the US government that they represent us, and that we would like the US government to recognize that ME is the same disease as CFS, which is what the CCC says.

Maybe people should be drawing a line in the sand with the US CFS advocacy groups.

All the best

Mark June 12, 2013 at 6:50 pm
rlc

I was under the impression that one of the things that people are as mad as hell about, was the continual attempts to ignore the existence of ME, and trying to say that ME is just another name for CFS.

So I don’t see that asking for a Definition the CCC that says that ME and CFS are the same disease is going to help the problem.

The letter calls for the CCC case definition to be used and called "ME", and CFS to be disbanded. Which is pretty much the opposite of what you describe there. I see why you find that a confusing approach when the CCC, at the time, called the thing it defined "ME/CFS", but I don't personally see the name as being as important as the definition, and I don't see any particular problem with now re-naming it as an ME definition rather than an ME/CFS definition. Since the letter itself is calling for ME to be used and CFS to be disbanded, it's clearly not saying that ME and CFS are the same disease.

Personally I think people should be getting as mad as hell with the US CFS advocacy groups, who are taking money from ME patients in the form of donations, not even consulting with the patients and then telling the US government that they represent us, and that we would like the US government to recognize that ME is the same disease as CFS, which is what the CCC says.

Maybe people should be drawing a line in the sand with the US CFS advocacy groups.

"Asking the US government to recognize that ME is the same disease as CFS" is quite obviously the opposite of what the letter to the DHHS says, as anyone can see readily in black and white by looking at the letter. Calling for the use of the CCC as case definition is not the same thing.

I've never understood the mentality in politics whereby a minority of people on one end of a spectrum of opinion spend most of their time and energy attacking and undermining the people whose opinion is closest to their own, thereby undermining any attempt at opposition to the people at the other end of the spectrum who are supposedly their enemies. It's partly explained by the traditional tactics of the security forces, who have always infiltrated the extremes both to gain intelligence and to undermine the whole movement (for example see how Mark Kennedy acted as agent provocateur and tried to encourage peaceful activists to adopt more violent tactics, thereby convincing them he was genuine and undermining their cause at the same time). Given what's been said in the UK about the security forces watching ME activists and considering them dangerous, it would be surprising if the extremes of the ME activist scene were not infiltrated, but I don't think that can explain the whole phenomenon.

I personally think there are some genuine issues which can be improved in terms of consultation – this is a new exercise in collaboration for our community and there is always room for improvement – but the way to do that is to get involved constructively. Not to conduct negative campaigns about every flaw you can find in those closest to your own position, but to work with people to point out where there are problems and try to improve things. If you take the negative campaigning route, then it's hopelessly unrealistic to imagine that'll get you a seat at the table and encourage people to consult you more: quite the opposite and that's the root of many of our problems. And it works the same way all the way up and down, by the way – that's life.

The analogy that keeps buzzing round my mind the last couple of days goes something like this: If I'm driving a bus of people up from London to Glasgow, with a plan to go to Edinburgh when I can arrange it, and I stop to pick up a hitcher who says he desperately, urgently wants to get out of London because he hates it and he wants to go to Edinburgh, and then I tell him I'm going to Glasgow and he's welcome to a free ride, and he then gets really angry with me and says he wants to go to Edinburgh, not Glasgow, and he'd rather stay in London than go to Glasgow, and starts throwing things at the bus…then I'm going to wonder whether this guy really wants to get to Edinburgh, or whether he just wants to complain about not being there.

I can understand anyone not signing the petition if they don't agree with it, I can understand if they want to set up their own petition calling for the ICC instead (and if they get masses of signatures they could easily prove their point), and I can understand all the concerns about the consultation model, which we do need to develop, but what I can't understand is the apparent belief of some people that 'advocacy' consists of attacking and trying to destroy everything in sight, starting with the people closest to you. My suggestion: accentuate the positive: do your own thing, build your own positive movement, do something constructive and PR will surely support it, and remember the old and very wise saying that it's better to light a candle than to curse the darkness.

snowathlete June 12, 2013 at 6:54 pm
Mark

snowathlete: Great post, thanks for that. Worth a response in some detail I think…

So can I, actually, even though I've been arguing one side on this thread. I think there are some valid issues there, but the practical question right now is whether to get behind this initiative or not. On balance I'd say there's much more good than bad in this, and while there's room for improvement in future, the most important thing to me is for as many people as possible to get behind a positive initiative, even if it doesn't give everything that everyone wants

I agree. I signed the petition and I did so because I think it takes us forward.

Mark

Crucial point. The word 'consensus' is key for me: it implies a degree of flexibility and compromise. Getting lots of people together gives you the potential to achieve something. As a community, we sometimes spend far too much time focusing on the details that we don't like and not enough getting behind positive, though imperfect, projects. There's always something there to be found to criticize in anything; nothing's perfect. But we need a mass movement if we're going to apply pressure effectively, and a mass movement has to unite a lot of subtly different perspectives under one 'big tent'. I believe that realization is dawning on a lot of people in the ME/CFS world and we're all starting to work together a lot more effectively. It's very hard work to make that happen, but it is happening.

Why use words when an emoticon will do? :thumbsup:

Mark

Another crucial point. The landscape is always changing, and you build gradually on what came before. I'm personally not really expecting the details of the letter to all be implemented without further discussion, that doesn't seem likely to me no matter what you ask for, and even if it they were, it wouldn't be the end of the story or the end of campaigning. The point for me is to apply pressure and set out a clear vision of the direction you want to go. One way or another we have to get away from broad and useless case definitions and we need that as soon as possible, in order for that case definition to then evolve in a meaningful way. The CCC obviously isn't the final word, neither is the ICC. The point is to make progress rather than standing still; it's a process and a conversation, not something set in stone for all time.

:thumbsup:

Mark

The pressure may seem more positive from where you're sitting them where I'm sitting, to be honest :D ;

Thats a fair point! :D

Mark

I haven't really learned about any problems that I wasn't already well aware of and trying to work on, what I need is ideas and solutions and time and help to implement them. But I honestly do agree with you that some of Ember's questions are quite appropriate, and it's right to ask them. I wouldn't have spent so much time trying to answer them if I didn't, and I think there are some points in there which need some work.

Particularly in terms of how Phoenix Rising interacts with this whole process, that's the main thing that needs work, for me – there is a big and very important discussion to be had there and I believe we have the potential to contribute a lot in that area. I really don't want this thread to be about all that, because right now we want to focus on the petition and the campaign itself, rather than navel-gazing about how we make decisions as a community. But we honestly do want to have that discussion on how we can find a way for the community to engage with this work – honestly, the board doesn't want to have to make these kind of decisions on its own. The big problem there is that most of the work in these kind of initiatives just doesn't make much sense as open, public discussions. When you see letters signed by loads of prominent people and sent to newspapers, or governments, you don't see those letters being discussed and thrashed out in public before they're sent; most of the time that kind of process would undermine the whole effort. For impact, you sometimes need those things to be unveiled like a press release. Petitions are different; everyone can start them and everyone's free to sign up, or not. So part of the problem for PR is that we don't have elected representatives who can then work on advocacy efforts in confidence with a range of other groups. Other groups tend to work rather differently and they don't have public forums like ours for this stuff, so we're in a rather unusual position. We want to work with other groups, and our members have said they want us to do that, but the details do get complicated. We're still trying to figure out how all that might work.

And the whole question of CCC vs ICC is a totally legitimate question. That wasn't a straightforward or immediate question, and there's a range of views on it. In fact, personally my first instinct was for the ICC, but I was persuaded by the argument that the CCC has the benefit of a longer history of being used in practice – both clinically and for research – and the ICC would need more research, validation and momentum to be a practical target for this particular campaign. In the end, it's not just my point of view though, it's what the broad consensus is. I think part of the problem here is that for some in our community it feels strange that the conclusions of more than 6 months work kind of appear from nowhere, and the discussions that we now suddenly begin are the same ones that have been going on behind the scenes for some time. That's strange for us, because as I say, we're unusual in having this forum model of membership (and no formal membership or subscription scheme, at least not yet); it's not so strange for the other groups involved. I'd like to think that if we'd discussed all this openly we'd have all reached a consensus that everybody can unite behind and there'd be no more arguments or dissent at this point – but realistically I rather doubt that would ever be the case. There are always people with opposing views who just aren't ever going to compromise; you can't please all the people all the time, as hard as you may try…

I do think we've tried really hard to answer people's questions; I know I have and it's taken a lot out of me at a very busy time. Some of them have been really tough to answer, either because I didn't know all the answers on points of detail about the process, or because I've needed to check with others on what aspects were confidential or needed confirmation. It's also never easy to answer on behalf of a group, on behalf of a consensus process, and explain the rationale for decisions, especially when your individual answers are being taken as if they represent the opinion of the whole group, as if there were some simple and well-defined 'groupthink' opinion rather than the result of a process. And there's been CFSAC, and Invest in ME, and lots more besides going on at the same time, but people don't see all that other work and often want answers to their questions right away.

A lot of good points. I think its a real challenge and its more obvious here for the reasons you mentioned, than it is for many of the other organizations, and i think thats a strength that PR brings to the group. I also think that what these challenges demonstrates is that a) its an important topic that people want to talk about, so the right sort of thing to major on in advocacy campaigning, and b) although this forum isnt totally representative, it is an open public forum so a lot of the views from the community are expressed here, and so its vital for ALL the orgs who are involved to take particular notice of that because ultimately all these orgs need to have as much public support from the wider community as possible in order to be sucessful in their efforts, and of course to reflect most accurately, the consensus within the community. I'm certain that PR recognizes that, its clear from what you're saying and hopefully the other orgs get it as well.
In the future, I guess id hope to see people from the other orgs involved here in such discussions because its good practice i think, and as you pointed out, it is a lot of work for one or two people to reply to all the inevitable questions and concerns, and it doesnt very well reflect the fact that it was a concensus decision that was reached, not just you or medfeb, for example. Thanks for doing so much of that this time around, btw (we dont say it often enough)!

Mark

So your analogy with Unger's response to the community is a good one, but I'd just add that medfeb and I are just individuals too, in the context of the advocacy group, and indeed Unger is an individual within her own context as well; none of us have the power to make everything the way we want it to be, and none of us can fully represent the opinions of everyone in the group, even if we're seen as speaking on behalf of the group.

As above, that's not just up to me, but I do want that engagement and that chance for input as much as possible. If we'd had a better response to our appeal for people to join an advocacy group, we'd have set that up and those people would probably have been involved in this process, so in that sense there was an opportunity to be involved which wasn't taken up. We did join this particular process a bit late in the day, and it has never been a public discussion for the reasons I mentioned above. It is really hard to figure out how it ever could be, but believe me, we are all listening to the points made and trying to figure out a way to get that involvement. I will say one thing though: there has never been any barrier to people contacting me and offering to get involved in the work on this or on anything else. The people who do all this stuff are the people who have volunteered to do that work, and we do want lots more people to join the team and help out with that. Very few people seem to want to be involved at that level; they generally want to spend a few minutes making comments or suggestions but don't have the time and energy to think through all the ins and outs, but when you're spending 6 months discussing complex issues with a large number of other representatives, a degree of commitment is necessary to work through all those issues. But anyway, figuring out a way to canvas opinion without compromising embargoes and confidentiality, and how to give a clear route to engagement in this process for PR members, is very much on the agenda.

Indeed – people should get involved in the actual core of things if they can, and some people can im sure. Thats how we will get a stronger voice and be more effective as a community. I think weve seen the benefits of that from a number of people in the community who are doing this work already, and I hope it encourages more people to get involved and help out.

Mark

Absolutely, and amen to that! If you want to work as part of a team, that's an essential requirement.

:thumbsup:

snowathlete June 12, 2013 at 7:26 pm
Firestormm

As a patient I'd like to have something that labels me with a word people recognise as something serious – a reflection of my inability to function at normal levels; a reflection of my struggle; my pain. People who don't know me.

I'd really like people to ask me 'what's wrong?' and for me to be able to tell them my diagnosis and for them to say 'well you are coping remarkably well. I've heard of that. Very nasty.'

I can relate. What would you pick if you got to pick the name for yourself?
I mean, let's just pretend for a second that the CDC phone you up tomorrow, after reading this and say, "You know what Firestorm, you're absolutely right! Sorry for dicking around these past decades and treating you all like dirt. We're serious about this now. It's going to be on every news chanel tonight, and we're increasing funding 10 zquillion percent. But, we arent sure what you call it – what do you reccomend?"

rlc June 12, 2013 at 7:38 pm

Hi Mark, RE

The letter calls for the CCC case definition to be used and called "ME", and CFS to be disbanded. Which is pretty much the opposite of what you describe there.

I've never understood the mentality of people who have no medical training whatsoever who think that they can redefine a definition like the CCC and say that they have decided that it should be called a ME definition, when it is not a ME definition it is a definition of ME/CFS, it very clearly states that ME and CFS are the same disease.

Do you think that you are better qualified then Dr B. Carruthers?? Maybe you would like to explain to him why you are so much more knowledgeable than him and have the right to redefine what disease is defined by the CCC.

And as for your extended waffle trying to make out that you and the US CFS orgs are the victims and making personal attacks against people and comparing them to

the traditional tactics of the security forces

This is highly offensive and abusive and I have reported it

It seems to me that it is you who is using “traditional tactics of the security forces” to try and stop anyone from expressing decent against this US CFS orgs plan. By trying to imply that anyone who doesn’t like this plan is against trying to achieve something good for ME patients.

Do not bother to reply I have better things to do with my time!

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