International experts speak out against the IOM contract to determine clinical diagnostic criteria

September 24, 2013

Mary Dimmock reviews a most welcome announcement from our expert clinicians and researchers who have urged HHS to adopt the Canadian Consensus Criteria and save money by cancelling the contract with the Institute of Medicine…

Mary Dimmock

Mary Dimmock

On September 23, 2013, the US Department of Health and Human Services announced that it had entered into a contract with the Institute of Medicine (IOM) to begin work to develop “clinical diagnostic criteria” for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

But wait, there’s more…

Stop the press!

On the same day, 35 of the leading international researchers and clinicians in the field of ME/CFS have written an open letter to Secretary Kathleen Sebelius to announce that they have reached a consensus on adopting the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS.

Our experts called for HHS to follow their lead by using the Canadian Consensus Criteria as the sole case definition for ME/CFS in all of HHS’s activities relating to the disease, and strongly urged HHS to abandon its plans to reach out to groups like the Institute of Medicine to develop clinical diagnostic criteria.

Acknowledging that the case definition will be refined as science advances, the authors unambiguously endorsed the CCC as the baseline criteria, stating:

“The expert biomedical community will continue to refine and update the case definition as scientific knowledge advances, for example, this may include consideration of the 2011 ME International Consensus Criteria … As leading researchers and clinicians in the field, however, we are in agreement that there is sufficient evidence and experience to adopt the CCC now for research and clinical purposes, and that failure to do so will significantly impede research and harm patient care.”

Just as directly, the authors stated their strong opposition to the IOM initiative, stating:

“We strongly urge [HHS] to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for ME/CFS. Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease. Worse, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.”

Wow! Could our experts have spoken any more clearly, loudly and collectively?

More than any other issue, HHS’ decades long failure to adopt a definition that actually reflects our disease has confounded research and forestalled drug development. It has caused doctors to dismiss their patients’ illness or attribute it to depression. It has bred the widespread stigma and misunderstanding that ME/CFS patients face every day. By its actions, HHS has abandoned ME patients to lives of terrible debility and suffering with no treatments, no care and no hope that anything will ever change. In the face of such suffering, some patients have chosen suicide.

Compounding its mistakes, HHS unilaterally entered into a contract with the Institute of Medicine (IOM) to develop clinical diagnostic criteria and has repeatedly stated its intent to use non-experts to define our disease. We need only look to the Gulf War Illness experience with the IOM and the resulting “Chronic Multisymptom Illness” to know that this would be disastrous.

But today, thanks to our experts, the time for pretending ME/CFS doesn’t exist is OVER! The time for burying this devastating disease inside of an illegitimate collection of unexplained fatiguing illnesses is OVER! To quote advocate Tom Hennessey, “NO MAS!”

HHS can no longer claim that there is a lack of consensus amongst disease experts. As with every other disease, it is time for HHS to follow the lead of our disease experts and adopt the Canadian Consensus Criteria for research and clinical purposes. In particular, HHS must now stop wasting taxpayer dollars on misguided efforts that, in the words of the letter authors, “threaten to move ME/CFS science backwards.”

For patients who have suffered through years of studies into “false illness beliefs” and maladaptive coping styles, this is finally a way out of the morass, an escape route from all those wasted years. As the authors stated, adopting the CCC will “jump start progress and lead to much more rapid advancement in research and care for ME/CFS patients.” It gives hope that our disease will be treated as the terrible disease that it is and that progress will now come quickly. It gives hope that we will soon rise up from our beds!

This letter is both remarkable and historic for the ME/CFS community

But what does this letter mean in terms of the Institute of Medicine contract that Health and Human Services has just signed? Typically, like most contracts, government contracts have mechanisms built into them to allow the contract to be cancelled when the contract no longer makes sense.

Now that the ME/CFS experts have spoken, the path forward is clear. It does not make sense to waste money and time redefining the disease when the experts have now agreed upon the immediate adoption of the Canadian Consensus Criteria.

We need to send two strong messages to HHS:

  • First, HHS needs to immediately adopt the CCC as the sole definition for ME/CFS as the experts have called for.
  • Second, HHS needs to cancel the IOM contract, which is completely unnecessary, wasteful and a step backwards scientifically.

And, we need to forcefully engage our congressional leaders on this issue.

Further information along with the actions to take with congressional leaders will be provided by Mary tomorrow.

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Sources:

Sept 23, 2013 open letter from ME/CFS researchers and clinicians to Secretary Sebelius – here.

Sept 23, 2013 CFSAC announcement on the Institute of Medicine contract – here.

84 comments

{ 84 comments… read them below or add one }

beaker September 24, 2013 at 2:30 am

yay ! I await Mary's instructions.
Let's hope they are heard. Let's make sure they are heard.
ed:
Make that a "we" instead of "they" !

Roy S September 24, 2013 at 2:35 am

Thank you Mary.

I've been thinking of the following for quite a while.

An advisory committee for AIDS at least discussed resigning en masse to protest poor response of the US government. Sorry for the dim memory but I think it was 1991 during a relatively short relapse for me while living on Capitol Hill. I haven't been able to find information on it online. It seems like the name of the woman chairing the committee was something like Dr. Osborn.

Perhaps the CFSAC should consider doing that now after three decades of government screwups and 20+ years of being ignored.

Back then on Capitol Hill I endeavored to be the model of diplomacy in representing the patient community. After seeing what has transpired since then I think we need less diplomacy sometimes and more healthy activists all the time.

Nielk September 24, 2013 at 6:44 am

Thank you Mary for this very important article!
A special shout out to Russ for working so hard to rush this through:)

This is huge news.

Since the beginning of this proposed action on August 29th, I have been thinking what are our clinicians thinking about this? Where do they stand? Do they want this action to go through?

The whole world can clearly see their answer. I am so impressed that they have taken time out of their busy lives and worked on this in the background in unity and presented it to the secretary of health.

I have been feeling very dejected about the fact that HHS seemed to follow their agenda no matter what. I know that many of you were excited about HHS' e-mail of yesterday where they state that they have heard us and we will have a voice in the process. Are we going to have the same voice as we have had at CFSAC for the past ten years? We have repeatedly begged them to adopt and recognize the CCC and work from there for the past ten years and what was their answer? "It is too complicated for physicians to follow". I think that the IOM which by the way never in it's experience were charged with creating diagnostic criteria for disease (except currently for GWI), will just give HHS a larger platform to work their agenda.

I was telling a friend yesterday that we really have no leverage when it comes to impressing HHS. All we can do is send e-mails to them and/or congress. Why should they listen? Our leverage has just come in the form of this letter from our physicians and researchers! No one else can know this disease better that the signed 35.

Denise September 24, 2013 at 7:16 am

Thanks to Mary for the review, thanks to PR for rushing this news to us, thanks to the signers!
Looking forward to the next steps for us to take!

snowathlete September 24, 2013 at 8:19 am

Very pleased to see this, I think it is the correct approach, so well done to them and others behind the scenes who helped organize it. Hopefully we will continue to see more of the same going forward in other important matters.

LaurelW September 24, 2013 at 8:38 am

I was very pleased to see the list of signers–it includes every doctor and researcher I can think of that are in the field–quite a long list. If the government doesn't listen to this, they're fools and obstructionists.

concepcion September 24, 2013 at 8:40 am

Fantastic! It is such a relief to see the ME/CFS medical experts taking the lead and being so supportive of their patients.

Sasha September 24, 2013 at 9:04 am

I agree – it's great that our clinicians and researchers have got together to do this. I hope they might become more involved in advocacy as an expert group in future. We desperately need their help and they are uniquely positioned.

cruzgirl September 24, 2013 at 9:09 am

wow, great start to my day seeing this letter from all of our wonderful researchers and doctors. I can't wait to see what happens next. Sign me up with any follow through letters we may need to sign and send. Lets put money into research.

Nielk September 24, 2013 at 9:26 am

I just want to add here that we are in this mess of a crossroads here because HHS did not consult with anyone – not CFSAC, patient advocates nor our clinicians and researchers BEFORE embarking on this "secret" action.

medfeb September 24, 2013 at 10:47 am


Nielk

Thank you Mary for this very important article!
A special shout out to Russ for working so hard to rush this through:)

This is huge news.

Since the beginning of this proposed action on August 29th, I have been thinking what are our clinicians thinking about this? Where do they stand? Do they want this action to go through?

The whole world can clearly see their answer. I am so impressed that they have taken time out of their busy lives and worked on this in the background in unity and presented it to the secretary of health.

I have been feeling very dejected about the fact that HHS seemed to follow their agenda no matter what. I know that many of you were excited about HHS' e-mail of yesterday where they state that they have heard us and we will have a voice in the process. Are we going to have the same voice as we have had at CFSAC for the past ten years? We have repeatedly begged them to adopt and recognize the CCC and work from there for the past ten years and what was their answer? "It is too complicated for physicians to follow". I think that the IOM which by the way never in it's experience were charged with creating diagnostic criteria for disease (except currently for GWI), will just give HHS a larger platform to work their agenda.

I was telling a friend yesterday that we really have no leverage when it comes to impressing HHS. All we can do is send e-mails to them and/or congress. Why should they listen? Our leverage has just come in the form of this letter from our physicians and researchers! No one else can know this disease better that the signed 35.

Neilk said "Are we going to have the same voice as we have had at CFSAC for the past ten years? We have repeatedly begged them to adopt and recognize the CCC and work from there for the past ten years and what was their answer? "It is too complicated for physicians to follow". I think that the IOM which by the way never in it’s experience were charged with creating diagnostic criteria for disease (except currently for GWI), will just give HHS a larger platform to work their agenda."

My thoughts exactly. My concerns have not changed and now that the experts have spoken, why would HHS pursue this initiative.

readyforlife September 24, 2013 at 11:09 am

So am I reading this correctly?? The IOM contract is still going through but they have to "use a process with stakeholder input, including practicing clinicians and patients" And it's going to take them 18 months to do this? I was hoping that in the next year we would have some huge break through with a medication to help us. And it's going to take them 18 months just to come up with a Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?

The bright side I guess is that they will collaborate with CFS/ME patients, researchers and clinicians. And have faith they will not do something behind our backs….again.

As I read the letter from HHS announcing the IOM study a few things pissed me off. I didn't like how pleased they are and how they bring up that the study grew out of the 2012 CFSAC recommendation.

We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month.
I'm so glad they are pleased with themselves after what they put us through and tried to sneak behind our backs.

This study grew out of the 2012 CFSAC recommendation to the Secretary to convene a workshop to “reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS.” Because the use of and audience for case definitions for research and clinical care are very different, HHS decided that separate processes were needed to develop them.

This is their way of saying you asked for it. Yes but we didn't ask for them to lie and go behind our backs and choose a definition with out our community being involved.

HHS is proud to be making this investment in ME/CFS. We have heard the advocates’ concerns and trust that many have been addressed by the information provided in this email. It is our hope that a widely accepted clinical definition and a clear distinction from case definitions for clinical trials and research will aid in advancing clinical care, drug development, and basic translational research for ME/CFS.

Now they state how proud they are. Pleased and Proud. Well i'm SICK AND TIRED!!!! I want to trust in them but it's going to be really hard to do.

To all the hardworking cfs/me advocates/patients within our community that push for change and make sure that nothing slips past us…..THANK YOU.

Readyforlife

Sasha September 24, 2013 at 12:01 pm

Blog post from Jennie Spotila on the latest developments:

http://www.occupycfs.com/2013/09/24/the-experts/

Chris September 24, 2013 at 12:01 pm

Great news–and all our thanks to the great doctor/researchers who have been doing their best for us for years, and now come up with a strong and united voice that will–we hope–be impossible to ignore. This is real collaboration! Chris

Sasha September 24, 2013 at 1:56 pm

Article on this by Cort on Health Rising:

http://www.cortjohnson.org/blog/201…and-blasts-federal-efforts-create-definition/

Otis September 24, 2013 at 2:34 pm


aimossy

there is another letter up on research1st.
well done you PR ninjas!:ninja:

However, the CAA has stopped short of rejecting the IOM contract and endorsing the CCC. They had a huge opportunity to stand beside the researchers and clinicians who said "No. We the experts already solved this problem. Spend the money on research instead of on unqualified people groping around in the dark.". And the organization with Research First as their slogan is supporting the IOM process. Just once I'd like to see a bold statement come from the CAA.

Roy S September 24, 2013 at 2:49 pm

There are some blogs on the subject listed here although not all ME bloggers are on this list.
http://mecfsblogroll.blogspot.com/

Firestormm September 24, 2013 at 3:23 pm

I guess one of the things we have to ask ourselves is how long it is likely to be until any research can lead to an improvement on the CCC. You might say, for example, that if the Rituximab trials work out, then that could blow all existing criteria out of the water; on the other hand if they don't work out – or only do for a minority – and the evidence for ME being an autoimmune disease is not forthcoming: to what degree is the CCC adequate. Is it enough of an improvement on what you have now in the US – the CDC definition – to bring things together and move us forward.

Personally, I am still at a loss to explain the need for a differing clinical and research criteria when we are where we are i.e. with a disease based solely on exclusion of other more demonstrable conditions and symptomology. NICE in the UK when reviewing all the criteria they did – and at the time (mid 2000's) found that the CCC lacked methodology when compared to other criteria. I don't know what process the IOM and DHSS want to apply to their review: but something needs to happen. Something needs to be agreed as a way forward.

Ecoclimber September 24, 2013 at 3:24 pm

Why this is important to notify your representative

The Institue of Medicine, IOM, redefined another illness GWI or GWS which is similar to ME/CFS in 2013. The veterans have a strong lobby in Congress

Even though the IOM stated that these men and women were exposed to biological and chemical toxins, depleted uranium, particulate matter and infectious agents and the IOM acknowledge them as contributors, and it found it found most compelling the scientific evidence that the prime culprits were neurotoxins — in overused insecticides, experimental anti-nerve gas pre-treatment pills, and sarin plumes from the Air Force’s bombing of an Iraqi weapons plant!

The committee evaluated all treatments for which there was evidence, including prescription medicines and alternative therapies. On the basis of the voluminous evidence it reviewed, the IOM committee cannot recommend one single therapy to manage the health of veterans with CMI and, further, rejects a one-size-fitsall treatment approach. Instead, the committee endorses individualized care management plans.

The committee notes that the best available evidence from studies of treatments for CMI and related health conditions demonstrates that veterans who have CMI may benefit from such medications as selective serotonin reuptake inhibitors and serotonin norepinephrine reuptake inhibitors, and from cognitive behavioral therapy, which has been shown to reduce symptoms.

Other interventions and approaches hold promise for treating CMI but lack robust scientific evidence of their effectiveness. For this reason, the VA should fund and conduct studies of interventions, such as biofeedback, acupuncture, St. John’s wort, aerobic exercise, motivational interviewing, and multimodal therapies.

So you now know what the outcome will be for ME/CFS if you don't contact your respresentative! Need I say more?

Eco

Andrew September 24, 2013 at 3:39 pm


Otis

However, the CAA has stopped short of rejecting the IOM contract and endorsing the CCC. They had a huge opportunity to stand beside the researchers and clinicians who said "No. We the experts already solved this problem. Spend the money on research instead of on unqualified people groping around in the dark.". And the organization with Research First as their slogan is supporting the IOM process. Just once I'd like to see a bold statement come from the CAA.

Looks like the CAA has not changed.

alex3619 September 24, 2013 at 4:37 pm

One strategy for silencing advocacy is to co-opt any willing advocates or organizations that are threatening to create waves. You get their cooperation, offer small things in return, and continue with your agenda. It works for environmental advocacy, and a book was written about it I think, from the PR company that does this for a living.

Nielk September 24, 2013 at 4:48 pm


alex3619

One strategy for silencing advocacy is to co-opt any willing advocates or organizations that are threatening to create waves. You get their cooperation, offer small things in return, and continue with your agenda. It works for environmental advocacy, and a book was written about it I think, from the PR company that does this for a living.

So it seems, Alex that HHS has read this book.

shannah September 24, 2013 at 4:56 pm

Dr. Kogelnik's endorsement is conspicuously missing – also a couple of others. Anyone know why?

Otis September 24, 2013 at 5:00 pm


Firestormm

I guess one of the things we have to ask ourselves is how long it is likely to be until any research can lead to an improvement on the CCC. You might say, for example, that if the Rituximab trials work out, then that could blow all existing criteria out of the water; on the other hand if they don't work out – or only do for a minority – and the evidence for ME being an autoimmune disease is not forthcoming: to what degree is the CCC adequate. Is it enough of an improvement on what you have now in the US – the CDC definition – to bring things together and move us forward.

Personally, I am still at a loss to explain the need for a differing clinical and research criteria when we are where we are i.e. with a disease based solely on exclusion of other more demonstrable conditions and symptomology. NICE in the UK when reviewing all the criteria they did – and at the time (mid 2000's) found that the CCC lacked methodology when compared to other criteria. I don't know what process the IOM and DHSS want to apply to their review: but something needs to happen. Something needs to be agreed as a way forward.

I'm not going to delve into the clinical vs. research part of this but I do find the question of "what's good enough?" an interesting question. I would bet a disability check that nobody that signed the letter believes the CCC is perfect. I'm a believer in the 80% solution. This is coming from an anal perfectionist. It's taken me a long time to soften up to get to this point of view – in the macro. Because of unknowns, it's not really worth polishing something in an attempt for perfection because change will happen and evolution will happen naturally, usually faster than you can polish.

I think this is what happened with the IOM. The majority put their heads together and realized that talking a step backward to something like the Empiric definition (and who knows what the IOM will do to us) would take us from the 80% solution (CCC) to something twice that bad (40%) or worse! So they're attempting to drive a stake in the ground in an attempt to preserve the progress we've made and to allow those who spend all day every day working on the problem (i.e. not the IOM) to continue to refine the solution as we learn more.

Otis September 24, 2013 at 5:04 pm


shannah

Dr. Kogelnik's endorsement is conspicuously missing – also a couple of others. Anyone know why?

This thing played out pretty fast. I'm pretty surprised and impressed at how many they got on board so quickly.

WillowJ September 24, 2013 at 5:14 pm


shannah

Dr. Kogelnik's endorsement is conspicuously missing – also a couple of others. Anyone know why?

At this point, no one seems to know for sure but it could be simply lack of time. Montoya is also missing, as are some others.

ETA: I have now found Dr. Montoya's name on the list!

WillowJ September 24, 2013 at 5:19 pm


Firestormm

I guess one of the things we have to ask ourselves is how long it is likely to be until any research can lead to an improvement on the CCC. You might say, for example, that if the Rituximab trials work out, then that could blow all existing criteria out of the water; on the other hand if they don't work out – or only do for a minority – and the evidence for ME being an autoimmune disease is not forthcoming: to what degree is the CCC adequate. Is it enough of an improvement on what you have now in the US – the CDC definition – to bring things together and move us forward.

Personally, I am still at a loss to explain the need for a differing clinical and research criteria when we are where we are i.e. with a disease based solely on exclusion of other more demonstrable conditions and symptomology. NICE in the UK when reviewing all the criteria they did – and at the time (mid 2000's) found that the CCC lacked methodology when compared to other criteria. I don't know what process the IOM and DHSS want to apply to their review: but something needs to happen. Something needs to be agreed as a way forward.

I agree it's a good point that things could change soon and that may be a good reason to postpone a new definition (particularly two/three new definitions, as CDC is also doing one), but I don't think that's a good reason to continue to use Oxford, Empirical, or even Fukuda in the meantime. We could use an existing, more specific, definition now, and make a new definition later when we have more info.

I don't trust NICE's conclusion. I think the main differences are 1) whether government was involved. and of course 2) how much say the actual experts had, thus, comparative specificity.

Ecoclimber September 24, 2013 at 5:36 pm

Montoya's name is on the list

Otis September 24, 2013 at 6:14 pm


alex3619

One strategy for silencing advocacy is to co-opt any willing advocates or organizations that are threatening to create waves. You get their cooperation, offer small things in return, and continue with your agenda. It works for environmental advocacy, and a book was written about it I think, from the PR company that does this for a living.

This is a variation on the theme but it's evolved. This organization hasn't represented a real threat to the establishment in a long, long time. They are the establishment. They sold their soul a long time ago. They put on the face of a research org and suck in donations. There's a book in this one too. Hillary wrote part of it.

They churn out doublespeak faster than the US government which in a way is impressive. Before the letter opposing the IOM contract was announced the CAA announced it would not oppose the IOM, which is to say it supports it.

In their words:

The CFIDS Association believes that any review of current clinical diagnostic criteria should include requirements to validate and operationalize the Canadian criteria. Further, the clinical case definition must be useful in primary care as well as tertiary care settings. Diagnostic criteria that define core symptoms will increase the diagnostic certainty, increase the likelihood of identification and validation of biomarkers and can provide the guidance needed to develop safe and effective treatments for ME/CFS – which is central to our mission to make ME/CFS understood, diagnosable and treatable.

For any of you who have listened to Dr. Unger (while sticking pencils in your eyes) these words probably sound amazingly familiar. In other words, let's study the problem until all patients alive today are freaking dead.

Rewind a couple of years. Presto chango, one Jedi Mind Trick later and the CAA is just doing research. They haven't had to answer any hard questions from advocates in years. What an amazing slight of hand. Now they're in the business of telling DHHS how they think a criteria should be selected/developed.

Well, GAME ON, CAA. I'm with the signatories of the letter opposing the IOM.

Bob September 24, 2013 at 6:56 pm

There's so many names on the list, it's hard to remember who's signed, and who hasn't.

Here's the full list of signatories:

Dharam V. Ablashi
Lucinda Bateman
David S. Bell
Gordon Broderick
Paul R. Cheney
John K.S. Chia
Kenny L. De Meirleir
Derek Enlander
Mary Ann Fletcher
Ronald Glaser
Maureen Hanson
Leonard A. Jason
Nancy Klimas
Gudrun Lange
A. Martin Lerner
Susan Levine
Alan R. Light
Kathleen C. Light
Peter G. Medveczky
Judy A. Mikovits
Jose G. Montoya
James M. Oleske
Martin L. Pall
Daniel Peterson
Richard Podell
Irma Rey
Christopher R. Snell
Connie Sol
Staci Stevens
Rosemary A. Underhill
Marshall V. Williams

International Signatories

Birgitta Evengard
Sonya Marshall-Gradisnik
Charles Shepherd
Rosamund Vallings

Andrew September 24, 2013 at 7:52 pm

The problem with all the UK efforts (such as NICE and Oxford) is they review the range of existing criteria and form a new one. This process assumes that the existing criteria are targeting the correct patient group. But they never question the fatigue-centric model. They take for granted that it's correct and proceed from there.

An illness should be defined by the manifestations of the illness within the patient population, not by the name someone came up with years ago.

WillowJ September 24, 2013 at 9:11 pm


Ecoclimber

Montoya's name is on the list

Thanks. I just noticed this and came back to correct my post. Found your correction, too (which was a lot more timely!) And Bob's.

parvofighter September 24, 2013 at 10:00 pm

Mary, thank you for this important review. Here's a perspective on the perils of democracy in medicine, and possible context for the CAA's baffling stance on the IOM contract.

"THE BEST ARGUMENT AGAINST DEMOCRACY IS A FIVE-MINUTE CONVERSATION WITH THE AVERAGE VOTER."

This quote by Winston Churchill precisely sums up the problem with using a “consensus-building methodology” amongst a group of ME/CFS virgins… scientists who have little credible experience in M.E. clinical practice nor research, such as the IOM group. The voting process will merely stoop to the masses – not necessarily to the right answer.

Touting “consensus-building” for the development of ME/CFS criteria as a good thing is tantamount to saying, “We will let the majority rule”. One need only look at the ten-fold epidemiological expansion by the Fukuda criteria, to understand that if a vote were taken amongst scientists working on the hodgepodge definition known as “CFS”, the M.E. voices would be obliterated by the din of the Average Joe: the fatigued, sedentary, out-of-shape CFS patients, many of whom who may indeed do swimmingly well with CBT and GET. No doubt the NICE folks are slathering over the opportunity to talk about "CFS" epidemiology.

But there are already hundreds of millions of dollars spent on depressed, out-of-shape patients; this is an exercise in redundance. The yawning chasm in funding and care is for neuro-immune patients with the constellation of post-exertional pathology known as ME/CFS.

In other words, when you take the wrapping off those shiny words: “Consensus-building Methodology”, the only credibility that remains is that afforded by the voters you have put together. In the case of the IOM, that amounts to, “Not Much”. This process would be akin to taking a poll of current practice in ME/CFS "treatment". The majority of practitioners (and I’m not talking about ME/CFS specialists such as Drs Peterson, Kogelnik, Fluge, Mella, & Montoya) are out to lunch, uninformed, stale, and often outright dangerous to their patients, by either ignoring the patient (or telling them to ignore their pathology), or by routinely prescribing exercise without qualification (i.e. without following Anaerobic Threshold limits), for a patient population for which this prescription is outright dangerous. As Winston Churchill would suggest, put a bunch of uneducated, inexperienced voters together in a room, and you deserve the cr@p you paid for.

So YES, let’s save the money from this exercise in futility: the IOM contract. And why not direct these funds to people who know what they’re doing – the signatories on the letter to Kathleen Sibelius.

A WORD ON MARKET SHARE
One final thought: when considering which parties did not sign the letter, I agree that many credible voices may have been merely swamped by their day-to-day work on ME/CFS; after all, the turnaround on the writing of this letter was nothing short of miraculously fast. However some voices – particularly those who have positioned themselves as “the voice of the ME/CFS community” may have some ‘splaining to do. Consider that funding for research organizations is heavily influenced by the number of people afflicted with a given disease. If you mash together “CFS” – fatigue from just about any cause – with ME/CFS, you end up with somewhere near a 10-fold expansion of your “influence” – and potentially a risk of a ten-fold reduction in budgets, should the focus shift from idiopathic fatigue-of-any-origin to the post-exertional, neuro-immune entities that fall under ME/CFS.

Just sayin’: if you’re wanting to understand why the CAA supports the IOM contract, one avenue of enlightenment is to Follow the Money.

medfeb September 25, 2013 at 3:59 am

Parvofighter

You make great points. We know this letter happened quickly since the IOM wasnt announced til August 27 and that these are all very busy people. And the situation with HHS' plans with IOM kept changing so quickly which must have complicated pulling this together. There can be a number of reasons why any one person didn't sign. Short of having a discussion with each individual, we cant possible know

But to me the key thing to focus on is how many did sign. That is nothing short of remarkable and I am so appreciate that they were willing to take this collective stand.

Regarding CAA's position, I cant speak for them. But their announcement stated that "any review of current clinical diagnostic criteria should include requirements to validate and operationalize the Canadian criteria". CAA would not have taken this position if they were truly focused on fatigue from any cause.

Nielk September 25, 2013 at 7:46 am

There is some major problem with this fiscal picture:

-Ian Lipkin announcement that NIH has no funding for his pathogen study.

-HHS announces they have a million dollars just laying around to play public charade.

Andrew September 25, 2013 at 8:50 am

I have a quandary here but I don't want it to be taken as a statement against what they experts did. I'm actually thrilled with what they did. They not only spoke out against this IOM process, but also conveyed that they are going to continue using the CCC and possible advancing it via the ICC.

But here's my quandary. If we (as activists) boycott the IOM, we are leaving the process completely in the hands of a) people who know nothing about ME/CFS and b) organizations like the CAA who always seem to be not on our side. And when it is all over, the government can say they gave patients the opportunity to speak and included a major ME/CFS organization. OTOH, if we do involve ourselves, at least we have a chance to give input. Problem is, though, have you ever seen a single instance where this type of project actually used patient input. Usually it is nothing more than a pat on the head, and then they do what they want anyway.

Rich D September 25, 2013 at 9:58 am

I would like to at least point out one important point about where all this may be coming from – the need for an "objective" measure. In other words, the CCC can basically be imitated by anyone wanting to claim they have CFS. As a CFS sufferer, believe me, I understand the complexity of the issue, having recently been burned by my own PCP. But we should at least keep in mind that institutions may have a fundamentally sound reason to search for such criteria. Not that I am taking sides here, just trying to keep us all from looking at HHS as the enemy. That is not productive, even if we think they are wrong.

Bob September 25, 2013 at 10:37 am


Andrew

I have a quandary here but I don't want it to be taken as a statement against what they experts did. I'm actually thrilled with what they did. They not only spoke out against this IOM process, but also conveyed that they are going to continue using the CCC and possible advancing it via the ICC.

But here's my quandary. If we (as activists) boycott the IOM, we are leaving the process completely in the hands of a) people who know nothing about ME/CFS and b) organizations like the CAA who always seem to be not on our side. And when it is all over, the government can say they gave patients the opportunity to speak and included a major ME/CFS organization. OTOH, if we do involve ourselves, at least we have a chance to give input. Problem is, though, have you ever seen a single instance where this type of project actually used patient input. Usually it is nothing more than a pat on the head, and then they do what they want anyway.

It is a difficult issue to grapple with, isn't it.

For example, should we now continue our advocacy efforts by recommending that our favoured experts are nominated to the committee?

the IOM committee will include approximately 15 members with expertise in the
following areas: epidemiology; clinical medicine/primary care and other health
care fields, particularly with expertise in ME/CFS, including neurology,
rheumatology, immunology, pain, infectious disease, behavioral health,
cardiology, endocrinology; and scientists and physicians with experience in
developing clinical case definitions. The IOM will ask interested parties,
including expert clinicians, researchers and patient advocates, to make
suggestions for nominees to the committee.
https://dl.dropboxusercontent.com/u/89158245/CFSAC Sept 23 2013 IOM announcement.pdf

Nielk September 25, 2013 at 11:08 am


Rich D

I would like to at least point out one important point about where all this may be coming from – the need for an "objective" measure.

You are right, Rich, in stating that we need an "objective" measure for this disease. That is the aim of all the research that is out there – finding the elusive objective measure.

Some might say that this has somewhat been achieves by the two day exercise testing to prove post exertional maliase (PEM). We certainly need more though.

But, this is a catch 22

In order to achieve quality in research we need an effective diagnostic criteria to better select a "tight" patient population. If we don't obtain this better selection of patients in studies, the outcomes will reflect what we have seen as the psych slant on this. We will get more recommendation for GET/CBT, anti-depressants and the like. This in turn will guaranty to produce conflicting and explainable results to impede the validation of objective markers.

This impediment is the real danger of letting an inexperienced IOM produce diagnostic criteria

Dr. Kenneth Shine, former IOM president who is the was heard stating he could not recall when the IOM was last charged with defining a disease.

In other words, the CCC can basically be imitated by anyone wanting to claim they have CFS.

It is the outdated CDC, Fuduka criteria which mostly overlaps with depression. The CCC has PEM as a hallmark symptom. Most patients who suffer from idiopatic fatigue do not suffer from PEM.

Is the CCC perfect? I don't think anyone is saying that. It is certainly a great improvement on Oxford or Fuduka. The clinicians and researchers in their letter agreed to take the CCC as a starting point and then work on improving on it.

As a CFS sufferer, believe me, I understand the complexity of the issue, having recently been burned by my own PCP. But we should at least keep in mind that institutions may have a fundamentally sound reason to search for such criteria.

(my bold)

This is my personal greatest fear – that patients will just blindly trust that "institutions" will do the right thing. If we don't learn from history, where are we? It has been almost 30 years, since the outbreak in Lake Tahoe. Where are we as patients with the care of HHS, NIH and CDC? You state that you have been burned by your own PCP. I have been burned by mine ten years ago! This caused me to become more severely affected and to lose my job. I am totally disabled now. Whose fault is this? I can't really blame my GP. He has been taught by the CDC toolkit as to how best DAMAGE me. The NIH has less funding for this severe illness of one million Americans than most diseases. NIH has no funding for important studies like the Ian Lipkin study to find pathogens which could lead to biomarkers.

Not that I am taking sides here, just trying to keep us all from looking at HHS as the enemy. That is not productive, even if we think they are wrong.

In my opinion, if we just let HHS to their own devices without any actions from patients, advocates, clinicians and experts, we would all be either drugged up on anti-depressants or in nursing homes due to the damage from exercise.

Iquitos September 25, 2013 at 2:07 pm


Otis
aimossy

there is another letter up on research1st.
well done you PR ninjas!:ninja:

However, the CAA has stopped short of rejecting the IOM contract and endorsing the CCC. They had a huge opportunity to stand beside the researchers and clinicians who said "No. We the experts already solved this problem. Spend the money on research instead of on unqualified people groping around in the dark.". And the organization with Research First as their slogan is supporting the IOM process. Just once I'd like to see a bold statement come from the CAA.

As usual. The CAA always puts it's finger to the wind to see how to respond to anything and then tries to run to the head of the parade once they figure it out.

"Just once I’d like to see a bold statement come from the CAA."

Not going to happen.

Otis September 25, 2013 at 2:34 pm


medfeb

Parvofighter

Regarding CAA's position, I cant speak for them. But their announcement stated that "any review of current clinical diagnostic criteria should include requirements validate and operationalize the Canadian criteria". CAA would not have taken this position if they were truly focused on fatigue from any cause.

I agree with Parvo on this one but for me it's a secondary issue relative to the moves of recent days. Although if they eventually have a say in the definition we'll definitely see that issue arise.

They've used words like this in an attempt to not alienate the signatories of the letter while simultaneously publicly supporting the IOM contact. If their nose were any further up the Secretary's butt they could see out her belly button. The CAA is very much a political entity. Watch the actions. Ignore the words. When the cards start flying at the IOM game, I expect the CAA to have a seat at the table with a nice stack of chips.

Let's hope our docs and researchers get heard and are able to scuttle the IOM contact or it could get ugly.

Nielk September 25, 2013 at 4:06 pm

See this new thread for an alert on advocacy action' http://forums.phoenixrising.me/inde…opt-the-ccc-cancel-the-iom.25473/#post-390297

Hope123 September 25, 2013 at 4:34 pm

Quick comments:

1) The initial letter was NOT sent to all clinicians and researchers but is being spread further now so there may be more signatories in the future. If your favorite clinician doesn't sign, you should ask them why.

2) There's nothing wrong with both opposing the IOM contract and then bombarding them with comments if they decide to go with it anyway. I see no contradiction in asking for an cancellation now but working within the confines of what we have once we get there. We've been doing that all along anyway.

Otis September 25, 2013 at 5:18 pm


Hope123

Quick comments:

1) The initial letter was NOT sent to all clinicians and researchers but is being spread further now so there may be more signatories in the future. If your favorite clinician doesn't sign, you should ask them why.

2) There's nothing wrong with both opposing the IOM contract and then bombarding them with comments if they decide to go with it anyway. I see no contradiction in asking for an cancellation now but working within the confines of what we have once we get there. We've been doing that all along anyway.

Good points.

The second one is interesting. I too think the stand that the initial 35 took made a double statement. "You can't ignore us one way or the other." But I think that makes their push to cancel the contract all the stronger.

I'm not sure how much flexibility will be shown be any one of the group given how strongly worded the letter was. I think they'll insist on using the CCC as the starting point and very strong evidence for ANY deviation. I don't see the signatories going along with some clean slate fishing expedition trying to cast a harpoon into every idiopathic chronic fatigue whale around**. So I'm not sure how much patience with the process will be shown by the signatories.

I have wondered, if some clinicians/researchers didn't sign in order to have a strategic reserve of like-minded people (without or without such discussions with the group of signatories) in the event the IOM contract goes forward. I tend to doubt it. I think this was an all hands on deck exercise given the time allowed, but nonetheless this wrinkle intrigues me.

* * No whales have been harmed in the writing of this post. If I could go outside I'd hug a tree, I would. Of is that wood? :confused:

Rich D September 26, 2013 at 10:10 am


Nielk
Rich D

I would like to at least point out one important point about where all this may be coming from – the need for an "objective" measure.

You are right, Rich, in stating that we need an "objective" measure for this disease. That is the aim of all the research that is out there – finding the elusive objective measure.

Some might say that this has somewhat been achieves by the two day exercise testing to prove post exertional maliase (PEM). We certainly need more though.

But, this is a catch 22

In order to achieve quality in research we need an effective diagnostic criteria to better select a "tight" patient population. If we don't obtain this better selection of patients in studies, the outcomes will reflect what we have seen as the psych slant on this. We will get more recommendation for GET/CBT, anti-depressants and the like. This in turn will guaranty to produce conflicting and explainable results to impede the validation of objective markers.

This impediment is the real danger of letting an inexperienced IOM produce diagnostic criteria

Dr. Kenneth Shine, former IOM president who is the was heard stating he could not recall when the IOM was last charged with defining a disease.

In other words, the CCC can basically be imitated by anyone wanting to claim they have CFS.

It is the outdated CDC, Fuduka criteria which mostly overlaps with depression. The CCC has PEM as a hallmark symptom. Most patients who suffer from idiopatic fatigue do not suffer from PEM.

Is the CCC perfect? I don't think anyone is saying that. It is certainly a great improvement on Oxford or Fuduka. The clinicians and researchers in their letter agreed to take the CCC as a starting point and then work on improving on it.

As a CFS sufferer, believe me, I understand the complexity of the issue, having recently been burned by my own PCP. But we should at least keep in mind that institutions may have a fundamentally sound reason to search for such criteria.

(my bold)

This is my personal greatest fear – that patients will just blindly trust that "institutions" will do the right thing. If we don't learn from history, where are we? It has been almost 30 years, since the outbreak in Lake Tahoe. Where are we as patients with the care of HHS, NIH and CDC? You state that you have been burned by your own PCP. I have been burned by mine ten years ago! This caused me to become more severely affected and to lose my job. I am totally disabled now. Whose fault is this? I can't really blame my GP. He has been taught by the CDC toolkit as to how best DAMAGE me. The NIH has less funding for this severe illness of one million Americans than most diseases. NIH has no funding for important studies like the Ian Lipkin study to find pathogens which could lead to biomarkers.

Not that I am taking sides here, just trying to keep us all from looking at HHS as the enemy. That is not productive, even if we think they are wrong.

In my opinion, if we just let HHS to their own devices without any actions from patients, advocates, clinicians and experts, we would all be either drugged up on anti-depressants or in nursing homes due to the damage from exercise.

I didn't say we shouldn't take any actions, I'm just pointing out that as frustrated as we all may be, it doesn't serve us to make the HHS into the enemy. I don't think they are out to get us, they are just not well informed. Let's not impugn their motives.

Otis September 26, 2013 at 1:02 pm


Rich D

I didn't say we shouldn't take any actions, I'm just pointing out that as frustrated as we all may be, it doesn't serve us to make the HHS into the enemy. I don't think they are out to get us, they are just not well informed. Let's not impugn their motives.

This is just a discussion in a little corner of the 'net and you're going to chastise someone for questioning DHHS's motives? Funny, I saw references to actions in that post, not motives.

What of the motives of CDC starting in the 80s? Are those out of bounds too?

The fact of the matter is that DHHS is taking a very dangerous course of action, and ignorance is not an excuse. They have expertise at their disposal. The Secretary ignores it with great skill. She did the same with patient/advocate objections to the IOM prior to contract being awarded. When she started getting objections, she took it off the books and made it a private matter. So for the sake of examining motive, I can't possibly see this as above-board and benevolent even if I give it the absolute the most benefit of the doubt.

And then there's the action itself. Letting a contract to an unqualified group who so completely sold down the river our own veterans – with so many parallels to our own struggles (AND they had served their country) – have this contract for ME is chilling.

Personally I'm speaking out because I'm very concerned about the likely outcomes of an IOM-driven definition. Having said that, given DHHS's history with this illness and/or actions with this IOM contact alone, I don't blame anyone who distrusts DHHS' motives or feel they've made themselves the enemy based on their actions. All sample correspondence I've seen has been perfectly cordial. We can do that despite perhaps thinking differently.

We don't have to be angry to take action but the action is really important. The link NeilK posted above is a great place to start. Please support the original 35 signatories who knew it was time to take a stand.

Christian Godbout September 27, 2013 at 4:45 pm

Who is the # 1 advocate (or any other person concerned) who will be the first to know of the HHS' reaction and decision regarding the experts' letter, and capable of informing us here? Who is in the absolute front row among us?

Otis September 27, 2013 at 6:16 pm


Christian Godbout

Who is the # 1 advocate (or any other person concerned) who will be the first to know of the HHS' reaction and decision regarding the experts' letter, and capable of informing us here? Who is in the absolute front row among us?

I'm not sure there's a singular answer answer to that question. If I want the latest news I go to twitter. #mecfs and #neurome are probably the best hashtags. If you want a head start with who you might want to follow I'm @OtisQuila and see who I follow. I tend for follow people who are posting news and research and not so much conversational types. There's nothing wrong with that but I like to use twitter as a quick info source.

Roy S September 28, 2013 at 12:39 am

This blog is troubling. Can anybody confirm this?

http://thoughtsaboutme.com/2013/09/…g-signatories-to-withdraw-endorsement-of-ccc/

justinreilly September 28, 2013 at 2:06 am


Roy S

This blog is troubling. Can anybody confirm this?

http://thoughtsaboutme.com/2013/09/…g-signatories-to-withdraw-endorsement-of-ccc/

Roy, I agree, but think "troubling" is the understatement of the century.

I have contacted CAA on their blog and by email and asked for immediate confirmation, and if true, for an explanation. If and when I hear I will post here.

Firestormm September 28, 2013 at 4:11 am

If the contract proceeds – which I think it will – it will be interesting to hear from the experts what their thoughts are now. They wrote the letter and requested signatures before it was known that the contract had been granted. Unfortunate perhaps that the two crossed – both being published on the same day: but we are where we are. So where do we go now? Isn't there a webinair in November? I think so – though perhaps we'll hear more before then. Let's face it something like this review has been called for and was on the cards for many many years. Might be time to try and make the best of it and prepare to give evidence/form collaborations/present a united front by detailing what is wanted and why…

beaker September 28, 2013 at 5:08 am


justinreilly

Roy, I agree, but think "troubling" is the understatement of the century.

I have contacted CAA on their blog and by email and asked for immediate confirmation, and if true, for an explanation. If and when I hear I will post here.

The very thought that it would NOT surprise me IF it were true is very sad in and of itself. I was willing to be open after Kim left.
ED: I will reserve judgement until it is confirmed or denied.

justinreilly September 28, 2013 at 8:57 am
Iquitos September 28, 2013 at 9:38 am


beaker

The very thought that it would NOT surprise me IF it were true is very sad in and of itself. I was willing to be open after Kim left.
ED: I will reserve judgement until it is confirmed or denied.

Kim left but Suzanne Vernon remains. If you take a look at most of the phony research Bill Reeves and Co. did, her name is on most of it. It's extremely disengenuous that she is now the "scientific advisor" for this bogus organization. It has not changed its stripes.

At best CAA is simply a cash cow for those it employs.

At worst it's simply a front for the government policy of denigrating, deceiving or ignoring us, whichever seems to be most effective at the time.

readyforlife September 28, 2013 at 1:45 pm

Does anyone know who wrote this letter and had all the Doctors and researchers sign it?

Nielk September 28, 2013 at 6:57 pm


Firestormm

If the contract proceeds – which I think it will – it will be interesting to hear from the experts what their thoughts are now. They wrote the letter and requested signatures before it was known that the contract had been granted. Unfortunate perhaps that the two crossed – both being published on the same day: but we are where we are. So where do we go now? Isn't there a webinair in November? I think so – though perhaps we'll hear more before then. Let's face it something like this review has been called for and was on the cards for many many years. Might be time to try and make the best of it and prepare to give evidence/form collaborations/present a united front by detailing what is wanted and why…

Why would one think that the 35 experts would look kindly on the fact that HHS sneaked this contact by us and presented it as fact? They are obviously and very clearly opposed to it. Do we think that they will just change their mind since it has been accomplished already?

This is not the review that has been called for. A review within the umbrella of CFSAC has been asked for. The IOM has an established way of how they select their panels and they do not sway by what patients or experts think. If we go by the way they selected their panel to review GWI, I think we will much more likely see behavior experts than any ME/CFS experts.

It will be too late then to do anything about this. It will give a platform for them to give legitimacy and government approval for GET/CBT. Are we willing to take that chance?

Nielk September 28, 2013 at 7:48 pm


readyforlife

Does anyone know who wrote this letter and had all the Doctors and researchers sign it?

I have asked CAA to make their letter public, in the merit of transparency.

Nielk September 29, 2013 at 7:29 am

A & A about experts letter to HHS. http://www.prohealth.com/library/sh…tter&utm_campaign=twitter_article&LIBID=18381

Nielk September 29, 2013 at 12:44 pm
Ecoclimber September 29, 2013 at 1:37 pm

  1. In my opinion, the CFIDS is not an organization that represents the ME/CFS community. I've been reluctant to say anything to date but must step in memory of Tom Hennessy RIP whose phone in memorial service is today at 4:00pm EDT. 1:00pm PDT. He would have spoken out concerning this issue.
  2. The huge salaries the corporate executives receive is appalling when there is very little funding for ME/CFS research from this organization. This in of itself, raises a Red flag with me.
  3. Their rating with Charity Navigator is only 2 stars and their financial rating of 39.70 is another big flag http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=6512
  4. What have they accomplished over the last twenty years or more?
  5. Their lack of using scarce resources for critical research is big in my books
  6. Their lack of timely and proactive communication with the ME patient community is another. Their web site has outdated information and current information is seriously lacking.
  7. I am puzzled on what they accomplish in their day to day operations. It took me only 2 days to get a researcher on board, fund research on a major discovery back in 2009.
  8. There is no accountability, no review process based on their performace. Having been a management consultant within worldwide organizations of Fortune 100 companies at the excutive level, I do have a bit of insight into this matter.

Ecoclimber September 29, 2013 at 3:08 pm


Nielk

The need for lobbying congress by Llewelyn King. http://www.thestate.com/2013/09/29/3006173/king-the-importance-of-getting.html

Tom Hennessy was very forthright in stating advocacy issues and problems concerning efforts with lobbying Congress, in an interview he gave to Cort Johnson on here. Tom being his usual self told it like it is and his account is accurate. As you know, there are powerful forces arrayed against the ME/CFS and similar patient communities from the health, medical, disability insurance industry and the APA. His father was a lobbyist for Getty Oil so he had first hand knowledge and expertise on how things were run on the 'Hill'

As I stated in an earlier post, Congress is in sequester. Funds are tight. The National Debt is at an all time high. Top research labs across America are facing extreme shortages in funding for critical research projects.

To educate the patient community on how things are really run in Congress, I will make a few things clear. I had a close relative who was at the highest level of a former Presidential administration for eight years afterwards he was a lobbyist on the 'Hill'. If someone came to him with a specific request, all he had to do is make one phone call. The head of whichever department he called would jump into action to make sure his order was carried out.

The influence to get bills proposed, bills supported and passed are unfortunately based on how much money and how much influence special interest groups can provide Congressional members for their relection campaigns. These members are wined and dined, taken on special junkets to get the ear of members of Congress to press for legislation that will benefit their particular interest group or oppose legislation or funding that would be detrimental to their interests. Favors are called in on behalf of these groups. There are hundreds of lobbyists for each interest group working full time for their cause. Many were members of Congress who have many friends in Congress.

This is how the system works. The special interests groups arrayed against various patient communities are formidable. Hundreds of millions of dollars are spent per annum on Congressional lobbying by these groups. http://www.opensecrets.org

Unfortunately, the ME/CFS communities do not have the funds to lobby Congress successfully for their cause. Behind the scenes, the system is in place on how DHHS will treat this illness. The CFSAC annual meeting is more or less a HSS dog and pony show. All one has to do is look at the demeanor, attitude and questions asked by these officials and the acomplishments of the board over the last few decades.

The action of HHS to award a contract to define the criteria of this illness by esteem members and representatives of the IOM, is ludicious. We have seen the IOM results of the treatment criteria on the GWI to know the outcome for ME/CFS. It is disheartening at best, considering the fact that the veteran organization consisted of a very powerful lobbying group.

Based on his knowledge and experience, Tom knew the best formula or strategy to counteract the lobbyists and special interest groups on the 'Hill'. It was to form a broadbase coalition group to represent those patient communities that have a difficult time in obtaining research grants. Mikovits attempted to tie these groups together. I believe that the correct strategy to use is to form a broad based coalition among chronic, neuroendocrine, and autoimmune patient communties.

I also believe that future funding will have to be provided by donations from private foundations and patient organizations.

Eco

alex3619 September 29, 2013 at 6:38 pm

Yes Ecoclimber , we need a broad based coalition for very specific goals. I was going to blog on this, but all my blogs have been on hold till more of my brain comes back online. Such a group would not try to do everything for every disease, but would focus on common elements. It would give us more numbers, more power, more money, and more people who can think and act without going into a meltdown. If such a group had an online information source that was comprehensive and accurate, it would then counter spin from organizations like the SMC.

August59 September 29, 2013 at 8:26 pm

I know Debbie and Glen Hutchins are very busy with their non profit organization trying to raise funds for CFS, since they are directly effected by this disease.

I know they are well versed in the disease and they obviously (or was) of considerable financial wealth. I wonder if they would be interested in being our voice on Capital Hill and present the funding that they have put for forth privately and what it has been able to achieve with what Dr. Lipkin and group has already found which is an obvious constant immune and inflammation attack on our bodies. Hopefully this would help in obtaining additional federal funding.

What information that Dr. Lpkin and the CFI can get in front of this IOM group, if we can't stop it might prove to be a good thing in their conferences to develop a disease definition. I know Dr. Lipkins name was on letter sent to Ms. Sebillus.

Just a thought that took me 2 hours to write this little bit and I'm sure the wording is probably wrong, but put parts of it in your own words and a lot more may possibly come out of it.

I appreciate all of you very much and I don't think I would still be alive if it wasn't for all of you. Thanks

beaker September 29, 2013 at 9:25 pm


August59

What information that Dr. Lpkin and the CFI can get in front of this IOM group, if we can't stop it might prove to be a good thing in their conferences to develop a disease definition. I know Dr. Lipkins name was on letter sent to Ms. Sebillus.

Just a thought that took me 2 hours to write this little bit and I'm sure the wording is probably wrong, but put parts of it in your own words and a lot more may possibly come out of it.

I appreciate all of you very much and I don't think I would still be alive if it wasn't for all of you. Thanks

Thank you for spending your valuable energy writing this post.
Dr. Lipkin was NOT one of the signatories of the letter though. Maybe you left out the "not" I do stuff like that all the time. No worries either way.

It would be nice if doctors who are and/or have been involved in ME/CFS and did not sign because they were not contacted in time/able to reply in time, or were not contacted to sign for whatever reason, would follow up as Dr. Lilly Chu did — w/ a letter of their own supporting the position of the other physicians. ( See thread "CFIDS Association asking expert signatories….." for her letter.
If you know how to contact any doctors and/or researchers ( no matter how big or little their involvement w/ ME/CFS ) who did not sign to ask them to write a letter — even just a couple sentences stating their support — that would be wonderful.

August59 October 1, 2013 at 3:33 am

I'm not sure what the time line is on this IOC endeavor is, but it would be nice if CFI and Dr. Lipkin could publish at least the portion of the studies that indicate cytokine and chemokine activity that indicates immune system and inflammatory systems being constantly active with a unique indication of change at approximately the 3 year mark. While there is a change it doesn't indicate a change towards healing and the activated immune system is still in place along with activated inflammatory system. My professional opinion would lead me to encourage not using treatments such as biofeedback, acupuncture, St. John’s wort, aerobic exercise, motivational interviewing, and multimodal therapies As this could in turn harm the patient instead of help them. The 2 day exercise test that has been used to establish PEM has already proven the effect on energy within the mitochondria continues to wane long after completion of the first day of exercise, therefore making use of a 1 day exercise test a complete waist of funding money, but also the patients and researchers time. A decision to use a 1 day study when the support for the 2 day study is supported by the patients shows a total lack of managerial and supervisory skills.

Did Dr. Lipkin make any statements as to when they were going to test the house/bedbound patients samples. I know he said they had came up with a way to get the samples by use of "house nurse" if that's the right words. I would be real interested to see what their various samples turn up.

I sure wish Dr. Lipkin would have signed the letter, but he is busy. I'm also concerned about the funding getting to them with the government shutdown in place!?

Firestormm October 1, 2013 at 5:01 am
Hermes October 3, 2013 at 6:45 pm

HHS and IOM contract – New Strategies
The main lesson from all of this is the American political system (and European political systems) is based on money, campaign contributions, lobbying and wealth centred networks. This sets the agenda and pre-determines all outcomes. The proof of this lies in the fact that our emails, letters and phone calls to Congressmen and Senators and to the HHS Secretary and to NIH and CDC were ignored and fobbed off. It is now very obvious that HHS Secretary Sebelius has been briefed for the last few weeks and months by "advisors". The agenda of these "advisors" is not entirely clear yet. But extrapolation from the Gulf War committee of the IOM gives us some clues. It strongly suggests, but does not conclusively prove, that these "advisors" desire a certain outcome. One which reduces payment liabilities for health insurance companies (to ME patients), reduces government payments for diagnostics and treatments (for ME patients) through Obama-care, reduces government disability payments, maintains the income and bonuses of psychiatrists and psychologists, maintains their somatic syndromes nonsense, increases profits for big (psychiatric) drug companies, and one which continues the lie first formulated by Dr. Straus and then continued by Dr. Reeves of CFS being a so called "fatigue illness", thus preserving the reputation of the NIH and CDC and preserving the careers and status of those in the NIH and CDC. Self interest at every level.

To achieve their desired outcome these "advisors" have conducted their affairs in secret behind the backs of CFSAC and patients and ME / CFS organisations. They then lied about the IOM contract. The "advisors" have adopted a divide and conquer approach ; this was successfully used to build empires in the past. This divide and conquer approach works as follows. They will recruit 1 or 2 ME doctors / researchers and enlist 1 or 2 representatives of one or two big ME organisations in the USA. They will form a small minority on the IOM panel. The IOM will use them to claim that the IOM is inclusive and open to the views of patients, when in reality they will be used as traitors,. The others on the panel will be carefully selected and will all be "yes men" and be told informally that their careers will depend on supporting the "right outcome". The IOM will claim that these people are "independent". They will represent a few fields including immunology, neurology, psychology, psychiatry and physiotherapy and primary care nurses.

The "investigation" itself will be guided carefully by IOM. This guidance will proceed in a certain direction – psychiatry based. As part of their "investigation" they will look to Britain and see whats happening there. The NICE clinics will be examined. CBT and GET will be included in the IOM's "analysis". They will ignore the scientific evidence into the biological causes of ME / CFS and claim there is contradictory evidence, no biomarkers, and no replication studies to verify anything. The "investigation" will presume that there are no biological treatments for ME / CFS and especially no "evidence based" treatments based on double blind placebo controlled trials. How convenient for them that NIH and CDC refused research funding in this area and the FDA blocked certain medicines for ME / CFS. From this they will decide that nothing can be done for ME / CFS patients and that CBT and GET offer the best way to "manage symptoms". The new definition will be a regurgitation of the Fukuda criteria with some some vague language about possible (though not proven) immune dysfunctions, possible (though not proven) infections at some stage of the illness and possible subgroups, with recommendations for further research, which of course will not be funded. The final outcome, which was determined before the investigation began, will be much the same as the vague, psychology centred "multi-system illness" invented for Gulf war syndrome.

The objectives of Secretary Sebelius' "advisors" will be achieved ; this being
an outcome which reduces payment liabilities for health insurance companies (to ME patients), reduces government payments for diagnostics and treatments (for ME patients) through Obama-care, reduces government disability payments, maintains the income and bonuses of psychiatrists and psychologists, maintains their somatic syndromes nonsense, increases profits for big (psychiatric) drug companies, and one which continues the lie first formulated by Dr. Straus and then continued by Dr. Reeves of CFS being a so called "fatigue illness", thus preserving the reputation of the NIH and CDC and preserving the careers and status of those in the NIH and CDC. Self interest at every level.

(Show this to Dr. Lucinda Bateman)

Chris October 3, 2013 at 7:21 pm

Hermes, this is superbly written and to me totally convincing–many thanks. I can only add a reminder of the statements that Dr. Unger at the CDC apparently made, to the effect that GE was "non-negotiable," and her point blank refusal to consider a two day exercise test, which might make GE look rather unconvincing. I wonder if anyone told her off for almost blowing the cover off?

I can also add a remotely analogous situation here in Canada that is still ongoing; Health Canada, a government bureaucracy, "regulates" the level of permissable RF and EMF emissions via something called Safety Code 6, which is up for a mandated review. So they announce with fanfares that the task will be given to an "independent" entity, the Royal Society of Canada, "because they have stringent conflict of interest policies." They, like the OIM, are to be the cover. It turns out that the committee first chosen by the RSC contains several members who appear on Health Canada videos defending the status quo, and decrying or denying that there is any research showing damaging biological effects below the thermal level–totally untrue. A fuss was raised, and as of now 3 members, including the chair, have stepped down and been replaced. A Freedom of Information request also revealed that Health Canada intended to control the committee very tightly, providing their own very limited choice of documents to be considered, and so on. Despite the embarrassments we caused them, I have no doubt at all that the "fix is in," and that the result will be a simple endorsement of the appallingly lax current "regulated" allowance. There is too much money at stake in the cell phone and "smart" meter businesses to allow the mere ill health of a few hundred thousand humans to interfere.

I suspect that there are many of these "indpendent" and rather mysterious organizations that exist largely to give a cover of independent verification to prearranged decisions. I have the highest regard for Lucinda Bateman–wish I had access to her as my doctor–but fear she may have been misled; I can only hope that her good will and expertise will have a positive effect on the IOM deliberations. Chris

alex3619 October 3, 2013 at 7:35 pm


Chris

Hermes, this is superbly written and to me totally convincing–many thanks. I can only add a reminder of the statements that Dr. Unger at the CDC apparently made, to the effect that GE was "non-negotiable," and her point blank refusal to consider a two day exercise test, which might make GE look rather unconvincing. I wonder if anyone told her off for almost blowing the cover off?

This is something I am worried about. Should the CDC not use a 2 day CPET test, our best test, should the IOM produce a report similar to what it did for GWS despite all our advocacy, then we need to get behind backing our researchers with independent funding. At that point only the advancement of the science will help.

So why does the CDC refuse to use a 2 day CPET? Their stated reasons are blatantly ludicrous.

However if we can stop or mitigate these HHS failures, then we might have restored some reason into this whole process.

justinreilly October 4, 2013 at 3:01 pm


Sasha

I agree – it's great that our clinicians and researchers have got together to do this. I hope they might become more involved in advocacy as an expert group in future. We desperately need their help and they are uniquely positioned.

I totally agree!

justinreilly October 4, 2013 at 7:22 pm


Firestormm

I guess one of the things we have to ask ourselves is how long it is likely to be until any research can lead to an improvement on the CCC. You might say, for example, that if the Rituximab trials work out, then that could blow all existing criteria out of the water; on the other hand if they don't work out – or only do for a minority – and the evidence for ME being an autoimmune disease is not forthcoming: to what degree is the CCC adequate. Is it enough of an improvement on what you have now in the US – the CDC definition – to bring things together and move us forward.

Personally, I am still at a loss to explain the need for a differing clinical and research criteria when we are where we are i.e. with a disease based solely on exclusion of other more demonstrable conditions and symptomology. NICE in the UK when reviewing all the criteria they did – and at the time (mid 2000's) found that the CCC lacked methodology when compared to other criteria. I don't know what process the IOM and DHSS want to apply to their review: but something needs to happen. Something needs to be agreed as a way forward.

Not exactly sure I understood all your points. But I will say that Fukuda, Reeves, Oxford and NICE are doing a huge amount of damage every day. CCC is obviously vastly superior to all of them, especially the latter three which are just laughable. This is why HHS must adopt CCC immediately. Of course, CCC can and should be improved on, but for now, lets please focus on getting CCC adopted ASAP.

I would also ask that anyone who is a patient of or knows anyone who writes journal articles, whether reviews or on their original research, please ask them to use CCC (in addition to, if they want, Fukuda).

Thanks for considering.

justinreilly October 4, 2013 at 7:44 pm


Otis

I'm not going to delve into the clinical vs. research part of this but I do find the question of "what's good enough?" an interesting question. I would bet a disability check that nobody that signed the letter believes the CCC is perfect. I'm a believer in the 80% solution. This is coming from an anal perfectionist. It's taken me a long time to soften up to get to this point of view – in the macro. Because of unknowns, it's not really worth polishing something in an attempt for perfection because change will happen and evolution will happen naturally, usually faster than you can polish.

I think this is what happened with the IOM. The majority put their heads together and realized that talking a step backward to something like the Empiric definition (and who knows what the IOM will do to us) would take us from the 80% solution (CCC) to something twice that bad (40%) or worse! So they're attempting to drive a stake in the ground in an attempt to preserve the progress we've made and to allow those who spend all day every day working on the problem (i.e. not the IOM) to continue to refine the solution as we learn more.

Wonderfully said!

justinreilly October 5, 2013 at 3:24 pm


Nielk

There is some major problem with this fiscal picture:

-Ian Lipkin announcement that NIH has no funding for his pathogen study.

-HHS announces they have a million dollars just laying around to play public charade.

Right!

And I'll add that:
- there is zero funding for Rituximab trials, or even inexpensive studies on the link between rare cancers and ME!

- the CFSAC meeting this fall has been switched to a tele- or video- conference and had the time for the meeting cut in half supposedly because of budget cuts. I am actually in favor of videoconferencing (at least some of the time) since it eliminates travel time and expenses, however, cutting the meeting in half is unacceptable- they can't even afford a few more hours of videoconferencing and yet they can afford this insane IOM contract?

And we don't know, it could be more. I searched for cost of IOM reports. The only record I could find was of the nine reports done on GWI up to August 2002, which averaged $1.826M each. (Plus a report on geographic differences in health care which cost $8.5M)

And Im very curious why these reports cost so much if the committee members volunteer all their time, the IOM is a non-profit with a development department and a $62M donated endowment and they sell the reports for around $40 in hard copy (though you can download for free). Of course there is staff and other overhead and panelists' expenses are covered, but still $1-1.8M seems very excessive.

justinreilly October 5, 2013 at 3:39 pm


Rich D

I would like to at least point out one important point about where all this may be coming from – the need for an "objective" measure. In other words, the CCC can basically be imitated by anyone wanting to claim they have CFS. As a CFS sufferer, believe me, I understand the complexity of the issue, having recently been burned by my own PCP. But we should at least keep in mind that institutions may have a fundamentally sound reason to search for such criteria. Not that I am taking sides here, just trying to keep us all from looking at HHS as the enemy. That is not productive, even if we think they are wrong.

I certainly agree we need more research on biomarkers. And good evidence of some exist now, perhaps to the point of including in a definition. However, we need the damage caused by Fukuda, Reeves and Oxford ended NOW, which means adopting CCC immediately and then working on improving with biomarkers.

The fact is, HHS IS the enemy because they made themselves the enemy by consistently persecuting us over three decades. That doesn't mean we shouldn't engage with it and it doesn't mean there aren't a minority of people there who are working in good faith for/with us.

justinreilly October 5, 2013 at 6:02 pm


Ecoclimber

Tom Hennessy was very forthright in stating advocacy issues and problems concerning efforts with lobbying Congress, in an interview he gave to Cort Johnson on here. Tom being his usual self told it like it is and his account is accurate. As you know, there are powerful forces arrayed against the ME/CFS and similar patient communities from the health, medical, disability insurance industry and the APA. His father was a lobbyist for Getty Oil so he had first hand knowledge and expertise on how things were run on the 'Hill'

As I stated in an earlier post, Congress is in sequester. Funds are tight. The National Debt is at an all time high. Top research labs across America are facing extreme shortages in funding for critical research projects.

To educate the patient community on how things are really run in Congress, I will make a few things clear. I had a close relative who was at the highest level of a former Presidential administration for eight years afterwards he was a lobbyist on the 'Hill'. If someone came to him with a specific request, all he had to do is make one phone call. The head of whichever department he called would jump into action to make sure his order was carried out.

The influence to get bills proposed, bills supported and passed are unfortunately based on how much money and how much influence special interest groups can provide Congressional members for their relection campaigns. These members are wined and dined, taken on special junkets to get the ear of members of Congress to press for legislation that will benefit their particular interest group or oppose legislation or funding that would be detrimental to their interests. Favors are called in on behalf of these groups. There are hundreds of lobbyists for each interest group working full time for their cause. Many were members of Congress who have many friends in Congress.

This is how the system works. The special interests groups arrayed against various patient communities are formidable. Hundreds of millions of dollars are spent per annum on Congressional lobbying by these groups. http://www.opensecrets.org

Unfortunately, the ME/CFS communities do not have the funds to lobby Congress successfully for their cause. Behind the scenes, the system is in place on how DHHS will treat this illness. The CFSAC annual meeting is more or less a HSS dog and pony show. All one has to do is look at the demeanor, attitude and questions asked by these officials and the acomplishments of the board over the last few decades.

The action of HHS to award a contract to define the criteria of this illness by esteem members and representatives of the IOM, is ludicious. We have seen the IOM results of the treatment criteria on the GWI to know the outcome for ME/CFS. It is disheartening at best, considering the fact that the veteran organization consisted of a very powerful lobbying group.

Based on his knowledge and experience, Tom knew the best formula or strategy to counteract the lobbyists and special interest groups on the 'Hill'. It was to form a broadbase coalition group to represent those patient communities that have a difficult time in obtaining research grants. Mikovits attempted to tie these groups together. I believe that the correct strategy to use is to form a broad based coalition among chronic, neuroendocrine, and autoimmune patient communties.

I also believe that future funding will have to be provided by donations from private foundations and patient organizations.

Eco

Eco, great post. I totally agree- except for the last sentence.

I thinks it will help us to unite as much as possible, both within the ME community and with others similarly situated to ourselves such as GWI, Lyme, etc. patients.

I think we do need to engage private foundations more, just like CAA does to get almost all of its funds. Also, in soliciting private individuals, pleas for medical research are the best, I think. When it comes to patient contributions, however, I strongly feel that all of our money should be going to lobbying congress (and parliament, if it works the same in the UK). We, as patients, with our great disability, will never be able to adequately fund research on our own. However, Congress is able to get NIH to spend the hundreds of millions we need per year on biomed research and congress is also able to whip CDC's CFS program into shape so it helps us, rather than greatly damages us. ALL else can and will flow from that.

alex3619 October 5, 2013 at 7:28 pm

Current trends in the US government lead me to suspect that rather than moving toward a model and treatment of ME and CFS that would benefit us, the government is moving to a contain and manage model (and this is a cyclical process). This is being driven, again only suspicion, by hardline economic ideas that do not solve problems, just limit them in the short term. They then try to contain the problems for as long as possible. With us that has been half a century.

Here is something I posted elsewhere recently:

[omitted]

[There] appears to be an historical cycle. More people get offended by lack of science in psychiatry (and as I am discovering, this is paralleled in economics), then someone comes along and redefines at least some of psychiatry. That redefinition gives the appearance that the arguments against bad psychiatry (not all of psychiatry but a substantial portion) are now addressed. Problem solved, time to move on. Consensus is reached, and psychiatry goes on with new names … but essentially the same content although it often has new twists.

The biopsychosocial movement is an example of this. In the case of BPS they are sustained by crossover with hardline (and counter-factual) economic theories and interests.This is in part why I got interested in the economics of all this.

[some material omitted]

There is a model of successful overthrow of the psychiatric hegemony and the lack of political will though. That model took, iirc, 108 years to come to fruition though. This is of course H. pylori and gastric ulcers. They were noted in Germany in the 1870s or 1880s but nobody believed them. Instead the medical community got behind the new theory that stress is the cause. Then in 1983 Barry Marshal did his now famous experiment on himself, and started down the path to a Nobel Prize.

He was ignored, dismissed, and nearly struck off the medical register as a quack. THAT is the legacy of dogma and conservatism we are fighting with bad psychiatry and bad medicine.

In one detailed historical review written for doctors, they discussed how they were not even permitted to debate this at scientific conferences or the sponsors would all withdraw funding. So how did we go from that, to this?

According to this article, which is discussed in one of my blogs (Here we go round the merry go round) what changed is patient demand. Once a cure was available, a cure not a theory, patients never let it go. They continually bombarded media etc., their doctors, anyone who would listen.[omitted] What is important though is this only had impact after the science was done.

We are in a systemic trap. The science, politics, economics, medical dogma and institutions all combine to slow and dismiss progress. A part of my book is looking at those interactions, but I need to do a whole lot more work and everything is on hold as I cannot sustain deep attention. This year has not been good for me.

Iquitos October 6, 2013 at 2:21 pm

The US government has ALWAYS had a contain and manage model when it came/comes to mecfs. We had brain scans showing punctate lesions similar to those of AIDS patients, MS patients and those with Alzheimers, way back in the early 90s. To me, the only question that remains is WHY? What are they trying to hide or avoid?

In the 80s, Japan called this illness the Low Natural Killer Cell Disease.

Dr Peterson has been using low VO2Max scores and Natural Killer cell tests to diagnose for decades.

Various doctors and researchers have shown mitochondrial damage, immune system damage, unusual response to exercise, etc, etc, etc.

All this physical evidence has been around long enough for anyone who is truly interested in the science to understand that this is not a psychosomatic illness. And yet the CDC has used money sent to the Viral and Rickettsial Diseases branch to fund fake research purporting to prove the illness is caused by childhood sexual abuse and/or inappropriate response to stress, two ideas that are preposterous on the face of it. Why would any scientist interested in the scientific answers that are needed spend scarce resources on bogus research like this unless they had been ordered to do so by those above them in the chain of command? (I suspect this is the reason Dennis Mangan didn't last long at HHS. He is/was too principled to do the bidding of the hidden hand so he had to retire early and is now on our side as a private citizen.)

Sending this illness to the Women's Health closet is another example of how they have tried to marginalize and disappear this illness. Pretending it only happens to women when it is plain to see it affects men and children as well is just another tactic used to dismiss the reality and substitute the myths the US government has dedicated its power and money to.

There are a lot of dots to be connected over the last 30-some years. They add up a continued effort to misinform, disinform, denigrate, ignore, disappear and/or bully patients and researchers who don't go along with the program. Any one of these dots might be thought to be simple stupidity, sexism or economically motivated, by itself. But the dots make a pattern that implies malice, not just stupidity or lack of understanding.

That our real experts (there are no "outside experts") have spoken up is hugely important. They are taking real chances with their futures in research and in medicine. The least we can do is stand up for them and stand behind them.

alex3619 October 6, 2013 at 9:22 pm

Management strategies are not new. What is new is the degree that this one might go. These things are cyclical. During economic crises many in government go looking for targets to slash costs. There was GWS, and now its us. This may not stop with a new definition, or just new treatment recommendations like do nothing, get therapy, exercise, and refuse tests. The US could easily go down the same path as the UK, ignore the science, promote their own unproven ideas, and deny even more to patients. The situation in the US, or anywhere for that matter, is not good for ME patients. It could be about to get a whole lot worse.

The other thing is this is business as usual. The US has been in economic decline for three to four decades now. In large part I think this is because of economic policy. They slash budgets for the wrong things, privatize the wrong things, and fail to invest in things that will make a difference. Its not just me saying that, I read commentary to this effect quite often now, sometimes from leading economic academics.

Its not just the US though. Our new Prime Minister is planning to do things that I think will damage Australia's long term interests. This is driven by two things. Debt and misplaced and disproved economic dogma. Four decades of economic dogma will not die just because its pushing the world toward global economic ruin.

The US is a special case right now due to extreme government debt. There are forces to push budget slashing. They don't care particularly about disabled people, and will slash the budgets that we and others need for research into cures. They also resist changes to healthcare that will deal with rising costs, and refuse to deal with excessive military spending, or to raise taxes. The US is its own worst enemy, and its the American people who suffer most.

Rising disability and health costs are not contained by denial. That leads to medical and social debt, and hence other costs to society and government. Any problems that are getting worse and not being addressed will cost more and more over time. Eventually there will be crises that cannot be denied, covered-up or dismissed. The cost for fixing them then may be very much more than the cost of doing something now.

We have indeed been ignored for nearly four decades now. It started in 1970, in the UK, with an academic hypothesis that ME was mass hysteria. The US followed through the 80s culminating in the definition of CFS in 1988. The CDC then pursued this further, and the Oxford definition was created. Around two decades of research using the Oxford definition has sidelined real advances, and given us no treatments that cure or increase objective functional capacity.

Psychiatry is one of the sacred institutions. It needs an overhaul and to be dragged into the 21st century. Yet I don't think this is going to happen, not universally.

We do need to support our researchers though. We also need to support, and be supported by, other groups that have been targeted or are likely to be targeted.

beaker October 7, 2013 at 1:40 am


alex3619

Management strategies are not new. What is new is the degree that this one might go. These things are cyclical. During economic crises many in government go looking for targets to slash costs. There was GWS, and now its us. This may not stop with a new definition, or just new treatment recommendations like do nothing, get therapy, exercise, and refuse tests. The US could easily go down the same path as the UK, ignore the science, promote their own unproven ideas, and deny even more to patients. The situation in the US, or anywhere for that matter, is not good for ME patients. It could be about to get a whole lot worse.

The other thing is this is business as usual. The US has been in economic decline for three to four decades now. In large part I think this is because of economic policy. They slash budgets for the wrong things, privatize the wrong things, and fail to invest in things that will make a difference. Its not just me saying that, I read commentary to this effect quite often now, sometimes from leading economic academics.

Its not just the US though. Our new Prime Minister is planning to do things that I think will damage Australia's long term interests. This is driven by two things. Debt and misplaced and disproved economic dogma. Four decades of economic dogma will not die just because its pushing the world toward global economic ruin.

The US is a special case right now due to extreme government debt. There are forces to push budget slashing. They don't care particularly about disabled people, and will slash the budgets that we and others need for research into cures. They also resist changes to healthcare that will deal with rising costs, and refuse to deal with excessive military spending, or to raise taxes. The US is its own worst enemy, and its the American people who suffer most.

Rising disability and health costs are not contained by denial. That leads to medical and social debt, and hence other costs to society and government. Any problems that are getting worse and not being addressed will cost more and more over time. Eventually there will be crises that cannot be denied, covered-up or dismissed. The cost for fixing them then may be very much more than the cost of doing something now.

We have indeed been ignored for nearly four decades now. It started in 1970, in the UK, with an academic hypothesis that ME was mass hysteria. The US followed through the 80s culminating in the definition of CFS in 1988. The CDC then pursued this further, and the Oxford definition was created. Around two decades of research using the Oxford definition has sidelined real advances, and given us no treatments that cure or increase objective functional capacity.

Psychiatry is one of the sacred institutions. It needs an overhaul and to be dragged into the 21st century. Yet I don't think this is going to happen, not universally.

We do need to support our researchers though. We also need to support, and be supported by, other groups that have been targeted or are likely to be targeted.

Very well written and sadly all too true. Beyond ME/CFS are incredible challenges to global economy and "healthy" societies — re: social policies, government corruption and policies that undermine the original intent of their respective constitutions, public apathy ( if it doesn't effect someone directly they are less and less likely to get involved or even care. ) , and on and on. It can really get me down.
But how can I dive in and help w/ all that when I am chained to my bed ?
There is too much short term investment for votes , then in long term investment that will make a difference.
For our health ( get these people well and back to work is better than paying disability — if one only views economically)
and an investment in basic science opens up avenues for so much well being of the entire planet.
medicine, climate changes, social policy, hunger, agriculture, pollution, energy, etc….
Invest in us will also help other illnesses down the road, just as we benefit from research into medical research that has come before.
It's all about votes and power and greed.
what happened to integrity ?

But then I come here, or find other groups of people on the net. Strangers who are hungry to do good deeds.
They are out there. It warms my heart when I hear of it or witness it. And I have many times.
If we could only bottle that.

Nielk October 9, 2013 at 6:29 am

I think that many of you might think that how is this contract with IOM going to affect me? If it follows the course of GWI, it will find that ME/CFS fits under the same umbrella as GWI and should be renamed Chronic Multisymptom Illness too or something like it. They will explain that most likely it is the same or similar to PTSD and will advise for clinicians to treat it the same way. They will recommend CBT/GET and/or antidepressants.

Part of the contract calls for disseminating this information to clinicians all over the country. Every doctor in this country will have an official stamp of approval to treat us as psychiatric patients.

In addition, research funding going forwards will only be given to studies with that in mind.

This is already happening; it will only reinforce it and make it much worse.

Why it is that Ian Lipkin’s grant proposal for further studies has been denied? He basically told us at the CDC call that he does not have the funds to continue his research. He (with CDC’s Unger on the line) called for patient demonstration like the act-up of aids patients in the 80’s.

Are we willing to just sit by and let this go on?

Andrew October 12, 2013 at 12:25 pm

I found what appears to be a quote regarding what action was supposed to be taken regarding the ME/CFS definition. Does anyone have the source that might contain this? Here's the quote: “promptly convene (by 12/31/12 or as soon as possible thereafter) at least one stakeholders’ (ME/CFS experts, patients, advocates) workshop in consultation with CFSAC members to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for discussion purposes”.

If this is a correct quote, it demonstrates just how underhanded the HHS is. They have not convened something made up of ME/CFS experts, patients, and advocates in consultation with CFSAC. They have pushed those parties aside and gone to an organization that is none of the above. It in no way meets the request, and to pretend that it does is an insult to us all.

Nielk October 12, 2013 at 7:53 pm

It's from the CFSAC 10/12 recommendation:

CFSAC recommends:
• that you will promptly convene (by 12/31/12 or as soon as possible thereafter) at least
one stakeholders’ (ME/CFS experts, patients, advocates) workshop in consultation with
CFSAC members to reach a consensus for a case definition useful for research, diagnosis
and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for
discussion purposes. (10/12)

In my article here, I point out how deviously they performed a bait and switch game on us!

RUkiddingME October 16, 2013 at 3:12 pm
Hermes November 13, 2013 at 3:21 pm

5 Reports by IOM mentioning ME/CFS and stating their position on ME/CFS from 2000 – 2013

I have only included a brief synopsis of each report and links to relevant pages from the report

Gulf War and Health (2013)

Reeves paper cited and contains several important flaws, including a prevalence figure of 2.54%. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . Page 22 states that ME/CFS is a somatoform disorder, which is a vague psychiatric illness. Page 97 mentions somatic symptoms. The “primary research” source not included. Primary research should have been included and should have contained findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. The psychiatric based NICE guidelines were included in the definition along with the outdated Fukuda definition which is vague and imprecise, but the Canadian Criteria (2003) and Nightingale Critera (2007) and International Consensus Criteria (2011) were ignored and excluded. Psychiatric treatments such as CBT, GET and psychiatric drugs were recommended for ME/CFS. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored.

http://books.nap.edu/openbook.php?record_id=13539&page=22

http://books.nap.edu/openbook.php?record_id=13539&page=97

http://books.nap.edu/openbook.php?record_id=13539&page=98

http://books.nap.edu/openbook.php?record_id=13539&page=99

http://books.nap.edu/openbook.php?record_id=13539&page=100

http://www.nap.edu/openbook.php?record_id=13539&page=120

Gulf War and Health (2010)

Wessely cited and Straus cited. Wessely’s 1998 paper contains several important errors.Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.

http://www.nap.edu/openbook.php?record_id=12835&page=210

http://www.nap.edu/openbook.php?record_id=12835&page=211

http://www.nap.edu/openbook.php?record_id=12835&page=212

http://www.nap.edu/openbook.php?record_id=12835&page=213

http://www.nap.edu/openbook.php?record_id=12835&page=214

Gulf War and Health (2008)

Wessely cited and Straus cited. Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . Telephone and mail shots used as “primary research” source. The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.

http://www.nap.edu/openbook.php?record_id=11922&page=174

http://www.nap.edu/openbook.php?record_id=11922&page=175

http://www.nap.edu/openbook.php?record_id=11922&page=176

http://www.nap.edu/openbook.php?record_id=11922&page=177

http://www.nap.edu/openbook.php?record_id=11922&page=178

Gulf War and Health (2006)

Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.

http://www.nap.edu/openbook.php?record_id=11729&page=161

http://www.nap.edu/openbook.php?record_id=11729&page=1612

http://www.nap.edu/openbook.php?record_id=11729&page=163

http://www.nap.edu/openbook.php?record_id=11729&page=164

http://www.nap.edu/openbook.php?record_id=11729&page=165

Gulf War and Health: Volume 1. Depleted Uranium, Pyridostigmine Bromide, Sarin, and Vaccines (2000)

Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. ME/CFS assumed to be a somatoform disorder.

http://www.nap.edu/openbook.php?record_id=9953&page=343

Quotation from report http://www.nap.edu/openbook.php?record_id=9953&page=343
“ The recognition of a new disease is far from straightforward (Wegman et al., 1997). The simplest statement is that it is a process (Kety, 1974), often taking years. The purpose of the process is to demonstrate that patients are affected by a unique clinical entity distinct from all other established clinical diagnoses. The individual “steps” for gathering and interpreting evidence are not clear-cut. Evidence from biomedical research plays a prominent, but not necessarily exclusive, role in defining and classifying a new disease. Social factors, including culture and economics, influence the recognition, classification, and definition of a new disease (Rosenberg, 1988; Aronowitz, 1998; Wessely et al., 1998).”

This is contradicted by the way that ME/CFS and Fibromyalgia has been recognised and classified by some psychiatrists. Recognising and classifying a new disease is very straightforward for some psychiatrists, they just term it a psychiatric illness and in some cases give it a new definition and classification to suit their own purposes. They even create a competing definition of their own in order to take over an illness. And they conveniently ignore all the biological and biomedical evidence which prove its not a psychiatric illness. Several physical illnesses were wrongly classified as psychiatric in the past, but have since been proved to be physical and biological illnesses not psychiatric.

http://www.nap.edu/openbook.php?record_id=9953&page=350

http://www.nap.edu/openbook.php?record_id=9953&page=354

http://www.nap.edu/openbook.php?record_id=9953&page=355

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