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Patients to DHHS: Fix the Broken ME/CFS Case Definitions NOW!

change-request-form-hiOn May 12 – International Awareness Day for ME/CFS/FM/MCS/etc – Phoenix Rising joined with 8 other US ME/CFS patient organizations and 26 independent patient advocates to call on the Department of Health and Human Services (DHHS) to finally fix the problem of the many and diverse case definitions associated with our disease. In a letter to Secretary Sebelius, Dr Howard Koh, Dr Thomas Frieden and Dr Francis Collins, we explained our concerns about the current definition activities of the DHHS in relation to “Chronic Fatigue Syndrome”, and listed the steps we believe must be taken to rectify the situation.

You can read our letter to the DHHS here.

The signatories on the letter are:

Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivity Coalition of Chicago, CFS/Fibromyalgia Organization of Georgia, Inc., MAME (Mothers Against Myalgic Encephalomyelitis), PANDORA (a.k.a. CFS Solutions of West Michigan), Phoenix Rising, The Fibromyalgia-ME/CFS Support Center, Inc., Rocky Mountain CFS/ME and FM AssociationSpeak Up About MEWisconsin ME/CFS Association, Inc., Bobbi Ausubel, Rich Carson, Lori Chapo-Kroger, R.N., Kati Debelic, R.N., Mary Dimmock, Pat Fero, MEPD, Joan Grobstein, M.D., Jean Harrison, Eileen Holderman, Suzan Jackson, Jill Justiss, Mindy Kitei, Michele Krisko, Denise Lopez-Majano, Mike Munoz, Matina Nicolson, Donna Pearson, Leela Play, Justin Reilly, J.D., Mary Schweitzer, Ph.D., Meghan Shannon MS MFT, Marly Silverman, Rivka Solomon, Tamara Staples, Charlotte von Salis, J.D., Michael Walzer.

For those of you who wish to sign this letter and become a part of this important initiative, we will provide a mechanism to do that within a few weeks and will send out additional information at that time.

Why have we written this letter?

Of all the issues that we face today, the one issue that has created the most problems is the diverse case definitions associated with our disease. This single issue has severely impacted research, drug development and clinical care and misled the medical community on the very nature of this devastating disease, causing many doctors to not believe that their patients are really sick. Until this issue is addressed, patients will continue to pay the price. This must stop now.

Today, the CDC states that there are at least 5 different definitions for “CFS”. Three of these definitions – the Canadian Consensus Criteria, the ME International Consensus Criteria and the Pediatric Criteria – require hallmark criteria like PEM/PENE and neurological, immunological and energy production impairments. Unfortunately, two of the most commonly used definitions, Fukuda and Oxford, do not require these hallmark criteria. In fact, Oxford only requires 6 months of disabling fatigue – no other symptom – and allows primary psychiatric disorder.

The result? Myalgic encephalomyelitis, the disease seen in outbreaks throughout the twentieth century and recognized by the World Health Organization in 1969, has disappeared, and in its place we are left with “CFS”, an amorphous umbrella of unrelated fatiguing conditions including, according to the literature, depression, deconditioning, medically unexplained chronic fatigue, and for some researchers and clinicians, fatigue due to “excessive rest” or “false illness beliefs”. In clinical practice, the diagnosis of CFS is given to a heterogeneous mix of patients – those with ME, those with the varied fatiguing conditions listed above, and those who were misdiagnosed or whose doctors use the diagnosis of CFS as a catch-all for unexplained fatigue. And in 2012, an American Family Physician article proclaimed that Oxford and Fukuda are the appropriate definitions for “CFS” and further stated: “[CFS] patients with poor social adjustment, a strong belief in an organic cause for fatigue, or some sort of sickness benefit (i.e., financial incentive) tend to have worse responses to [cognitive behavioral] therapy.”

Exactly what disease are we talking about here?

Patients have paid dearly for the proliferation of these overly broad and non-specific definitions – bedbound or homebound, unable to work or take care of their families, suffering for 10, 20, 30 or more years from the myriad symptoms that plague their bodies, unable to get adequate medical care and ultimately more likely to die prematurely from cancer, cardiovascular disease and suicide. 

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

What are we asking for?

Our letter to the DHHS asks them to:

  1. Adopt a disease-appropriate case definition for ME now, utilizing the Canadian Consensus Criteria as recommended by DHHS’ own advisory committee CFSAC, and train doctors with appropriate medical guidance.
  2. Stop using the terms “CFS” and “Chronic Fatigue Syndrome” along with the non-specific definitions like Fukuda and Oxford and the medical education material based on these definitions.
  3. Manage the adoption of the Canadian Consensus Criteria to ensure that insurance and disability do not lapse and that no patients fall through the cracks.
  4. Fully engage ME stakeholders in the planning and execution of the adoption of the Canadian Consensus Criteria.

Is this the right thing to do?

You may ask whether we really know enough about the disease or whether we need more study before we change definitions. Certainly, with more study, we can better operationalize the definition and validate biomarkers to make patient diagnostics easier. But in the meantime, we know that PEM/PENE is a hallmark symptom that reflects a distinctive biological pathology and we must utilize a disease definition that requires that symptom.

Some of you may prefer the ME International Consensus Criteria over the Canadian Consensus Criteria. The ME-ICC certainly has some excellent features. But practically, the Canadian Consensus Criteria has been used clinically and in research for a decade. Studies have been done with it. The U.S. government has posted the IACFS/ME Primer, based on the Canadian Consensus Criteria, on DHHS’ Guidelines.Gov. This is more likely to be acceptable to DHHS and is a reasonable first step, especially when considered against the alternative of continuing to use Fukuda while more study is done.

What about dropping the name “CFS”? You may be concerned that this means we will lose the literature base that has provided insights into the pathology of ME. Admittedly, some of the best articles used the term “CFS”. And so do some of the worst. The point is that the literature base is a mess because multiple diverse and unrelated definitions have inexplicably been allowed to use the very same name for years. We all should stop using the term “CFS” because it no longer has any real meaning.

Finally, what about the name ME? Does it really describe the disease? Is there a better name? That is a question that science will need to decide over time, something that has happened in many other diseases. But what is clear is that “chronic fatigue syndrome” will never be an appropriate name and should never have been established as the alternative or synonym for ME.

Patients have borne the brunt of the failure to address the definitional issues for the last thirty years. We cannot wait for more study to finally stop the harm being done to patients, especially given that more study with non-specific definitions will only perpetuate the problem. The time to address this problem is now.

Questions and Answers

We realize that patients, carers and advocates may have a number of questions about this initiative, and we hope that the following questions and answers will address any concerns you may have.

1. We can not abandon the patients that have been incorrectly given a “CFS” diagnosis.

This is very true. It is critical that implementation of this change is carefully managed so that these patients are re-evaluated and given a correct diagnosis. If unexplained conditions remain, it will be necessary to perform the studies needed to understand these conditions and establish more appropriate names and definitions.

2. We can not afford to have our disability or insurance impacted.

Yes, this is very important. It will be important to have a carefully thought out implementation plan that manages this to ensure that patients do not lose disability or insurance benefits.

3. The vast majority of the 6000 articles in the literature use the name “CFS”, not “ME. If we stop using the name “CFS”, we will lose all that literature.

Currently, when the search term myalgic encephalomyelitis is used, the CFS literature is returned. This will not change. But that literature base contains both articles relevant to ME and also a significant number of articles about “CFS” and child abuse, false illness beliefs, deconditioning, etc. This creates significant confusion for anyone trying to use that literature. For that reason, the non-specific term “CFS” should be abandoned by the U.S. and more specific terms like ME used going forward.

4. We have more important issues to deal with such as funding, and attracting new doctors and researchers.

It is critical that we have more funding but if we don’t fix the definition issue first, we will continue to study the wrong disease and have progress impeded by poor definitions. The resultant confusion will make it difficult to attract young researchers and doctors who will not see career opportunity in “CFS”.

5. Research centers have recently been established and if we stop using the name “CFS” we will confuse our donors.

It is true that a number of research institutes have recently been opened and some of them use the term “”CFS” or even “CF”. But the donors to these institutes today have a personal connection to the disease. They will continue to fund. Attracting additional funders, however, will be negatively impacted by the confusion around the disease. The sooner we can resolve this issue, the better in the long run.

6. CFS biobanks have been established using Fukuda and we don’t want to lose those samples.

The biobanks that have only been characterized by the Fukuda definition could contain a mix of patients with the hallmark criteria of ME and those who do not have these hallmark criteria. Using these mixed samples will continue to confound research. It is important that we have a well-characterized set of samples in the biobank and know which samples are from ME patients.

7. ME may not be the right name. Shouldn’t we wait for the science to figure out what the right name is?

It is possible that with further study, we will determine a better name than ME and it will naturally evolve. But ME, adopted by the World Health Organization in 1969, is the best placeholder until that time and avoids the serious issues caused by the use of the term “CFS”.

8. The best course is to tighten up the “CFS” definition, not get rid of it. Then we can keep the literature base, the biobanks, etc.

There are two problems with this approach. First is the long history of the term “CFS”, which is non-specific and now widely associated with diverse conditions, especially including psychiatric issues. This has severely tainted the term and made it clinically meaningless. Second, the term “CFS” is used for those studying patients that meet Oxford criteria (essentially chronic fatigue) and we have little control over that continued usage.

9. Lenny Jason recently published a paper that reports that the ME-ICC and the Canadian Consensus Criteria include more psychiatric co-morbidities than the Fukuda and recommends that more study be done. Does that mean we should wait to recommend any criteria until then?

  • Dr. Jason’s paper did find that the ME-ICC found more psychiatric co-morbidity than Fukuda. But Dr. Jason acknowledged the need for more study because this one used a questionnaire designed for Fukuda CFS, and that they were unable to assess one of the key ME-ICC criteria because data on this criteria was not available. Further, the study did not look at homebound or bedbound patients.
  • But what is also significant in Dr. Jason’s study is that ME-ICC identified a much tighter group of patients (39 compared to 113 for Fukuda) with more of the functional impairments and physical, mental and cognitive problems seen in ME-ICC patients than in those meeting the Fukuda criteria.
  • Clearly additional study is needed to operationalize the definition and to improve how it characterizes the disease, especially around subtypes. But continuing to use the 19-year-old consensus-driven Fukuda definition – which is also not operationalized and does not describe subtypes – in the meantime is not going to advance that knowledge and will only continue to hurt patients.
  • The Canadian Consensus Criteria has been used clinically and in research for over 10 years and better represents the disease. Using the CCC now will allow us to begin to make forward progress in research and identifying treatments, and begin to address the disbelief in the medical community. 

10. Is this the same thing as the Name Change initiative?

No. This is first and foremost about the definition being used – adopting a definition that effectively describes the disease and stopping the use of the definition – and name – that have created so much confusion and so many problems.

11. Why CCC and not ME-ICC?

The CCC has been used clinically and in a number of studies, providing the experiential foundation for its use. It is expected that as additional data is obtained, this definition will evolve. This must be done in partnership with the experts who developed the ME-ICC and the CCC.

 

We hope and believe that this initiative will be welcomed by the majority of the patient community, and we hope that the questions above have addressed any concerns. Of course there is always room for debate over details, but very few if any of us are happy with the existing definitional mess, and this letter represents a consensus amongst 9 patient organizations and 26 independent advocates on the best path towards change. As such, we encourage the community to get behind this initiative and seize this opportunity to resolve the problem of the broken case definitions used for our disease.

 

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{ 239 comments… add one }

  • Sasha May 14, 2013, 7:13 pm

    Well, I'm behind it! Great stuff.

    I'm sure there are areas where people might disagree but like just about every complex issue, I think it's best to focus on the big wins – huge wins – we'll get if we get behind this and not on side-issues.

    The use of the Oxford criteria here in the UK has been catastrophic – catastrophic – and we've got to get back to a tighter defintion.

    Well done to those who have worked on this. We're immensely stronger when we stand together and speak as one voice. I'm glad to see our advocates and advocacy organisations working together on this important issue. We need to see more of this.

    It was worth having insomnia! (2 am here).

  • HowToEscape? May 14, 2013, 9:14 pm

    The placement of #2 in the list is going to raise many cynical eyebrows. It's true, but considering that
    i) that people are scamming off disability is a common trope
    ii) it got that way bc there is a subculture which proudly does exactly that. e.g., a co-worker of mine who fell down stairs at his house while drunk and arranged to get it written up as a work injury, etc etc
    iii) thus primed to see a zebra in the shadows, people unfamiliar with our disease will see a zebra in the shadows.

    I think we have to be very careful to lay out information first. It then becomes clear, or at least visible that outcomes are much worse when we are struggling with insurance/disability to maintain a shadow of former income. I might have been able to get back to work had the insurance been working with me instead of against me; having a zero income, being homeless etc appears to have set off a permanent entrenchment of the disease.

  • alex3619 May 14, 2013, 10:49 pm

    I agree with this proposal, at least in general. I have yet to give it a detailed analysis. However I can see the counter-argument: but the CDC are already working on this! They have made progress! You are not prepared to give them time to finish? We have to be prepared for these kinds of arguments.

    Has anyone considered a broader petition to have this request acted on? Something everyone can sign?

  • Tally May 15, 2013, 12:18 am

    This is wonderful! I completely agree with everything stated here and it makes me happy to see the patient organizations working together.

    I sincerely hope that even those that might have a few disagreements decide to support it anyway. We need to stand together if we hope to make any progress.

    The situation is so terrible, so we should start moving forward and not worry that it might not be perfect. We are so far away from perfect anyway.

  • Valentijn May 15, 2013, 1:19 am
    HowToEscape?

    The placement of #2 in the list is going to raise many cynical eyebrows.

    I think the concern isn't that CF patients will lose related disability/insurance benefits, but rather that the change of name might result in bureaucratic confusion where patients newly diagnosed with "ME" won't have a recognized disease, and/or patients with an old diagnosis of "CFS" will have a disease which no longer exists.

    Given the propensity for benefits agencies and especially insurance companies to bungle things in a way which is profitable for themselves, a name/definition/classification change needs to be carefully planned, implemented, and monitored.

  • Mark May 15, 2013, 6:01 am
    alex3619

    Has anyone considered a broader petition to have this request acted on? Something everyone can sign?

    Yes, that's under consideration, there has been quite a bit of discussion about that. I think it's fairly likely there will be one in the fulness of time, but for now, this thread is a good place for our members to indicate their support and express their views on the subject in general.

  • Enid May 15, 2013, 6:05 am

    Actually say ME/CFS here in the sticks everybody's eyes glaze over, or much feet shuffling, A proper name more descriptive since we know the essential pathologies – Immune system, Endocrine system, Neurological system. NEI (not too catchy) perhaps, and ME thoroughly discredited by the psyche lobby here in the UK. As far as I'm concerned the Immune system crashed, research findings confirm – why – this is whatever the viral/bacterial overload compromised. A bit of Sherlock Holmes perhaps but the essential is to my mind something overcoming the Immune system.

  • Bob May 15, 2013, 6:21 am

    I personally support this letter, but I know, from talking to various patients over a number of years, that this issue raises major concerns for some CFS patients. Some CFS patients have had a CFS diagnosis for a long time, are comfortable with it, and familiar with it. They and their doctors may not be familiar with the term 'ME', may not be familiar with the differences between CFS and ME, or may not be familiar with the details of the science or the politics that has played out in relation to this disease over the decades. Or some patients simply do not agree that ME is a discrete entity, and are of the opinion that not enough science has been carried out to scientifically separate CFS from ME. And then of course, some patients currently diagnosed with CFS, may not experience Post Exertional Malaise, or neurological symptoms etc.

    I think some patients will find it threatening to have the term 'CFS' withdrawn, and maybe rather worried and even frightened about having such a change implemented. Some CFS patients might worry: "Where does it leave me if I can no longer have a CFS diagnosis?"

    So I appreciate the leadership in this area and, in my opinion, it's certainly an essential issue that needs to be addressed, as an urgent priority. But, in my opinion, any clinical changes need to be designed and implemented with much thought, and great care and sensitivity, making sure that no patients feel frightened, neglected or abandoned as a result of any changes. If great care is not taken then there may even be a backlash against this move, from some very worried CFS patients, which the government authorities will find confusing. A patient backlash against an insensitive implementation of new policy could be counter-productive in terms of achieving the desired long-term goals.

    So this project has my personal support but as long as it is implemented with care, compassion, consideration, and sensitivity towards all patients.

    What I think can be safely implemented immediately, without any consultation necessary, is that all government-funded research should be expected to use a CCC cohort, alongside any other cohorts that the researcher requires.

  • Enid May 15, 2013, 6:53 am

    What one is comfortable with whatever the title. ME for want of no better name then but well describing – now a dustbin term.

  • snowathlete May 15, 2013, 7:54 am

    Broadly speaking, I agree with this and I'm pleased to see it happening. Am I right to suspect that this group of organizations that are collaborating together, is growing and reaching out to other like-minded organizations?

    And is there a method in place by which new organizations can add their signature to this letter? And subsequent collaborative efforts like this?

  • alex3619 May 15, 2013, 9:00 am

    I do think the name is less important than the definition and the actions. The name ME is already co-opted by psychobabble. Most doctors probably think or suspect its hysteria/somatization/functional, especially in the UK. The trashing and distortion of the label ME began 18 years before the term CFS was created. The term CFS was simply a further step.

    Getting a good definition in use in both research and clinical practice is thus the real goal until the science advances, and doing it in a way that causes minimal problems. Of course those definition all happen to be ME definitions. What a name change does though is send a message, and one that might be very worthwhile to get out there.

  • Enid May 15, 2013, 9:44 am

    I wonder if it not too confusing for the average Doc, unable to rise above (like in their textbooks) – a combination of symptoms – they are educated to one simple "organ" dysfunction only. Well I must say all my (failed) investigations (they couldn't understand), it is accepted one has to be rather brighter than your average Doc (including those who choose psychiatry) to enter the fields of neurology, immunology, virology etc.

  • Mark May 15, 2013, 11:10 am
    Bob

    I personally support this letter, but I know, from talking to various patients over a number of years, that this issue raises major concerns for some CFS patients. Some CFS patients have had a CFS diagnosis for a long time, are comfortable with it, and familiar with it. They and their doctors may not be familiar with the term 'ME', may not be familiar with the differences between CFS and ME, or may not be familiar with the details of the science or the politics that has played out in relation to this disease over the decades. Or some patients simply do not agree that ME is a discrete entity, and are of the opinion that not enough science has been carried out to scientifically separate CFS from ME. And then of course, some patients currently diagnosed with CFS, may not experience Post Exertional Malaise, or neurological symptoms etc.

    I think some patients will find it threatening to have the term 'CFS' withdrawn, and maybe rather worried and even frightened about having such a change implemented. Some CFS patients might worry: "Where does it leave me if I can no longer have a CFS diagnosis?"

    So I appreciate the leadership in this area and, in my opinion, it's certainly an essential issue that needs to be addressed, as an urgent priority. But, in my opinion, any clinical changes need to be designed and implemented with much thought, and great care and sensitivity, making sure that no patients feel frightened, neglected or abandoned as a result of any changes. If great care isn't taken then there may even be a backlash against this move, from some very worried CFS patients, which the government authorities will find confusing. A patient backlash against an insensitive implementation of new policy could be counter-productive in terms of achieving the desired long-term goals.

    So this project has my personal support but as long as it is implemented with care, compassion, consideration, and sensitivity towards all patients.

    What I think can be safely implemented immediately, without any consultation necessary, is that all government-funded research should be expected to use a CCC cohort, alongside any other cohorts that the researcher requires.

    We're very mindful of those concerns, Bob, hence the lengthy explanation of the letter and the questions and answers. You're absolutely right to emphasize that the implementation requires a great deal of care to address the concerns you've mentioned, and we will be taking great care over that. Phoenix Rising, in particular, is very mindful that the objectives of the non-profit cover "ME/CFS", which I take to mean that we have an obligation to defend the interests of everybody who currently has an ME, CFS, or ME/CFS diagnosis. We're certainly not prepared to abandon "CFS but not ME" patients and leave them with no diagnosis and no medical cover. As far as clinical application goes, there will have to be a plan as to what happens to those patients.

    But as Julia Newton's research found, something like 40% of ME/CFS patients (in the UK at least) actually have another undiagnosed illness. That's just one study, but even in that study the true figure could be even higher of course, and we know from our own experience that missed diagnosis in the ME/CFS population is a huge problem. So if that's typical of the situation of patients under the "CFS" umbrella, then how can we ever hope to get effective research results from a mixed cohort like that? While such mixed cohorts remain, confusion and contradictory research results are inevitable. So I agree with you: the mandatory use of CCC for research that purports to study "ME" is the first and most important focus. Going beyond that, though, to the clinical definition, it's just as unhelpful to allow for an umbrella-type "CFS" diagnosis that leaves patients with other (sometimes life-threatening) conditions in limbo. That does no service to those patients either. It's long past time to throw away that waste-basket…

  • Mark May 15, 2013, 11:15 am
    snowathlete

    Broadly speaking, I agree with this and I'm pleased to see it happening. Am I right to suspect that this group of organizations that are collaborating together, is growing and reaching out to other like-minded organizations?

    I think that's a reasonable assumption. :) It's a fairly loose 'coalition' at the moment but I expect it to grow and take shape, perhaps a somewhat more formal structure, in the course of the next year or two. Time will tell…

    And is there a method in place by which new organizations can add their signature to this letter?

    As I mentioned above, mechanisms for some kind of petition are under discussion, but this particular letter has been written and delivered so in that sense it's completed. I guess anybody who wants to is free to contact the recipients of the letter and express their support for it…

    And subsequent collaborative efforts like this?

    I think that one's a pretty safe bet. :)

  • Mark May 15, 2013, 11:21 am
    alex3619

    I do think the name is less important than the definition and the actions. The name ME is already co-opted by psychobabble. Most doctors probably think or suspect its hysteria/somatization/functional, especially in the UK. The trashing and distortion of the label ME began 18 years before the term CFS was created. The term CFS was simply a further step.

    Getting a good definition in use in both research and clinical practice is thus the real goal until the science advances, and doing it in a way that causes minimal problems. Of course those definition all happen to be ME definitions. What a name change does though is send a message, and one that might be very worthwhile to get out there.

    Spot on Alex. I don't think it's a good idea to get too hung up on the name: the important issue here is the case definition behind the name, and that's what the letter aims to focus on.

    You've put it so succinctly here that I'll repeat this sentence from your quote, for emphasis:

    Getting a good definition in use in both research and clinical practice is thus the real goal until the science advances, and doing it in a way that causes minimal problems. Of course those definitions all happen to be ME definitions.

  • medfeb May 15, 2013, 7:42 pm

    Getting a good definition in use in both research and clinical practice is thus the real goal until the science advances, and doing it in a way that causes minimal problems. Of course those definitions all happen to be ME definitions.

    Alex and Mark – I agree – the name is nothing without getting a definition that describes the hallmark symptoms of the disease. Whatever name is used, if it becomes associated with the diversity of definitions associated with CFS today, its going to cause confusion.

    And is there a method in place by which new organizations can add their signature to this letter?

    Snowathlete and Mark – The intent is to provide a mechanism for others to sign onto this letter and then we will resend the letter with the additional signatures. We just need to figure out the easiest/best way to do that. Will let you know as soon as its in place.

    But as Julia Newton's research found, something like 40% of ME/CFS patients (in the UK at least) actually have another undiagnosed illness.

    That's interesting and seems to be reinforced by some other studies. There's also the large Nacul study done in England that found a prevalence for Canadian Consensus Criteria patients that was roughly half of Fukuda CFS patients. And Maes' examined Fukuda CFS patients and found that roughly half had PEM while the others did not. Finally, a recent study by Vincent found that only 36% of CFS patients examined had PEM although she said it could be a methodological issue.

    The challenge is that there is no way to know what that 50% is once you pull of patients that meet CCC – especially if Oxford was used. Some probably have a known medical disease and have been misdiagnosed. But others may have some condition that has not been effectively studied yet. They need to be correctly diagnosed or studied further for the disease they have

  • Mark May 15, 2013, 8:21 pm
    medfeb

    That's interesting and seems to be reinforced by some other studies…The challenge is that there is no way to know what that 50% is once you pull of patients that meet CCC – especially if Oxford was used. Some probably have a known medical disease and have been misdiagnosed. But others may have some condition that has not been effectively studied yet. They need to be correctly diagnosed or studied further for the disease they have

    Here's that study – some clues here maybe:
    http://www.ncbi.nlm.nih.gov/pubmed/21132135

    http://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdf

  • Ember May 16, 2013, 11:59 am

    Can anyone comment on the process? Who had input? Were any medical or policy experts consulted? What does the endorsement by Phoenix Rising mean?

  • Mark May 16, 2013, 3:07 pm
    Ember

    Can anyone comment on the process? Who had input? Were any medical or policy experts consulted? What does the endorsement by Phoenix Rising mean?

    medfeb can describe the process better than I can, because Phoenix Rising only got involved in the drafting process partway through. As far as I understand it, the concept and then the letter was discussed extensively amongst the signatories over a period of some months, revised several times in response to comments, and participants then decided whether to sign the final draft.

    The Phoenix Rising board decided (unanimously) to sign the letter. Based on previous discussions on the forums over the last few years, I felt that most of our members agree with the objectives set out in the letter (for example, a long thread discussing case definitions some time ago found almost unanimous support for campaigning for the use of the CCC for research, amongst members with a variety of different opinions on other matters), and many members have said in the past that they want Phoenix Rising and other ME/CFS organizations to work together and speak with a strong voice. So my opinion was, and is, that most of our members would want Phoenix Rising to sign this letter.

    However, the board is mindful that Phoenix Rising does not yet have 'democratic' processes in place for board membership or advocacy decisions, and as we have stated before, we are committed to putting such processes in place: that is what the board wants to do. Believe it or not, we actually don't want to take these decisions, we want to enable our members to do so. In the future, the aim is to establish an Advocacy Team, and I expect that in future it will be that team (or a subgroup of it) who will take part in such discussions and make decisions on whether to sign any letters presented to us. Moving to that model is not as simple or straightforward as some might imagine, but we are determined to do that, and we look forward to Phoenix Rising co-operating closely with other organizations and individual advocates in the future, as we have done here. I don't want to sidetrack this thread with that discussion of PR internal processes, though; that's something we're working on and we should focus on the letter itself here.

    Meanwhile, I believe that we have taken a decision that most of our members will agree with, and I hope that our members will sign the letter when a mechanism to do that becomes available in a few weeks time.

  • Sasha May 16, 2013, 3:36 pm
    Mark

    I hope that our members will sign the letter when a mechanism to do that becomes available in a few weeks time.

    So ordinary individuals will also have a chance to sign (did I miss this!)?

    If so, great! The more the merrier. This is an absolutely crucial issue.

  • taniaaust1 May 16, 2013, 4:04 pm

    Ive always said and thought that changing the definition was the most important thing to get ME science on trait whether its called ME or something else. This article I thought was great, thank you for it.

    Its truely thought about everything eg those who dont have ME but have CFS tend to not understand why its important for ME to be separate from CFS so its important as the article did, to explain things. (I think having ME people mixed in the CFS group used as a security blanket for some as they dont understand how such a split would also be in their own advantage not just in the advantage of those who have ME).

    Those with CFS, we need to always make sure that patient group wont be abandoned when ME is clearer defined from CFS. (In reality that will be around 60% of ME/CFS still being classifed as CFS, so it will be the minority of the group being separated out by a new definition). Sure more then half of that CFS group have been misdiagnosed but a percentage of that group who's not left with the ME defination, will have illnesses not even discovered yet so will need help to continue on the fight for funding and study… hence I cant see the name CFS ever going away even when the time comes in which the name does change back officially to ME or something new.

    Anyway.. first things first.. the step into the right direction is to make it clear that CFS isnt a minor illness and use a good defination which dont just include people who are only tired!! CFS will never be viewed as a serious illness while that is being done.

  • taniaaust1 May 16, 2013, 4:10 pm

    I forgot to say.. I support the move into using the Canadian Consensus Definition….. its close to the ME one anyway and as article said.. it will make a needed change far easier to impliment and its change what is urgently needed (we dont want to spent the next 10 years fighting with no change). Once good research is done using that defination.. it will make it easier to maybe move back to using ME or to a name change then.

    . Its very good thou that that international ME definition is sitting there.. awaiting for its time to come (maybe it would only take a few years during studies using the CCC definition for the international ME thing to become accepted when people see how will it fits).

  • taniaaust1 May 16, 2013, 4:12 pm

    sorry for all the whole word mistakes in my posts.. I wish there was an edit on this.

  • Bob May 16, 2013, 6:09 pm
    taniaaust1

    sorry for all the whole word mistakes in my posts.. I wish there was an edit on this.

    Maybe I've missed your meaning, tania, but there is an edit function on the forum, and a delete function.

  • Mark May 18, 2013, 7:04 am
    Sasha

    So ordinary individuals will also have a chance to sign (did I miss this!)?

    If so, great! The more the merrier. This is an absolutely crucial issue.

    You didn't miss it, that's now been added to the article as a clarification:

    For those of you who wish to sign this letter and become a part of this important initiative, we will provide a mechanism to do that within a few weeks and will send out additional information at that time.

  • Ember May 18, 2013, 1:15 pm
    Mark

    medfeb can describe the process better than I can, because Phoenix Rising only got involved in the drafting process partway through….

    Meanwhile, I believe that we have taken a decision that most of our members will agree with, and I hope that our members will sign the letter when a mechanism to do that becomes available in a few weeks time.

    I agree with much of the content of the letter, but I wouldn't sign it myself for a couple of the reasons already mentioned. One is that it reaches too far; the other is that it doesn't reach far enough.

    I think that the letter overreaches in expecting DHHS to dismantle a syndrome that's listed in the ICD-10-CM. Some of the signators have themselves argued that CFS needs to be classified as a neurological illness alongside ME.

    I think that the initiative misses the mark too by focusing on an inferior definition and primer. The ICC and ME Primer reflect an additional decade of research and clinical expertise. The letter describes the CCC as a definition “that can readily be further evolved in partnership with ME experts as additional data, knowledge and experience is gained, and as the definition is further operationalized and biomarkers are validated.” A decade in, this initiative doesn't engage that evolution and partnership.

    I prefer the example set by Invest in ME:

    A new standard for guidelines has been published by a leading group of international researchers…. The authors conclude that they –

    “believe the International Consensus Criteria will help clarify the unique signature of ME” and they state unambiguously that “individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for (Health and) Clinical Excellence (NICE) criteria for chronic fatigue syndrome”….

    We have for a long time stated that we support an evolutionary development and improvement of the Canadian Guidelines….The International Consensus Criteria are welcomed and we fully support these new criteria.

    The ICP authors also state, “Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”

  • snowathlete May 18, 2013, 4:32 pm

    I guess it might be felt by some that the ICC is too new and insufficiently tested. Still it might have been a good bargaining tool to have suggested its adoption as a preference and the CCC as an alternative.

  • Sasha May 19, 2013, 3:56 am

    I don't ever expect to see the perfect advocacy letter that accurately expresses all my opinions and that I agree 100% with – I'm happy to sign up to something that is 70% or 80% there.

    We're too large a community and the issues too complex to ever get such a thing. I think our best strategy is to get behind something that has already been thought through by a lot of us and has got broad consensus and, if implemented, would improve our situation. Our situation now is appalling. We can't wait for perfection.

  • Mark May 19, 2013, 9:45 am
    Sasha

    I don't ever expect to see the perfect advocacy letter that accurately expresses all my opinions and that I agree 100% with – I'm happy to sign up to something that is 70% or 80% there.

    We're too large a community and the issues too complex to ever get such a thing. I think our best strategy is to get behind something that has already been thought through by a lot of us and has got broad consensus and, if implemented, would improve our situation. Our situation now is appalling. We can't wait for perfection.

    I agree Sasha. One of the best managers I ever had used to tell me "the best is the enemy of the good". It was hard for me to accept that. I think the expectation is that use of the CCC may eventually evolve into use of the ICC if the ICC gains momentum; at the moment it's still quite a young definition and I think that's why the group settled on the CCC as a more realistic objective for now.

  • Mark May 19, 2013, 10:02 am
    Ember

    I think that the letter overreaches in expecting DHHS to dismantle a syndrome that's listed in the ICD-10-CM. Some of the signators have themselves argued that CFS needs to be classified as a neurological illness alongside ME.

    Discussion of what some of the signators have argued in the past in a different context doesn't seem particularly relevant to me as regards whether one supports this particular letter or not. Campaign objectives always have context and timing – and often a degree of compromise to achieve what's achievable – and that landscape is always changing.

    In the context of this proposed move to the use of the CCC to define ME, surely it's appropriate and necessary that "CFS" be dismantled, since we know that the group that has "CFS" but not CCC-defined "ME" is a very heterogeneous group, and even if there is any subset of that group that has the same currently undefined neuro-immune illness, it's a very small percentage of that group; the research shows that a majority of that group have other undiagnosed known conditions (as discussed above). If one's opposed to the wastebasket concept – a definition that lumps together people with missed diagnoses and anything that is currently medically misunderstood into one group that can never be properly researched by definition – then surely one should say so? The broad definitions of "CFS" help no one (except perhaps psychologists and authorities trying to save money by ignoring emerging illnesses); surely we're all agreed on that?

  • Ember May 19, 2013, 7:55 pm
    Mark

    Discussion of what some of the signators have argued in the past in a different context doesn't seem particularly relevant to me as regards whether one supports this particular letter or not. Campaign objectives always have context and timing – and often a degree of compromise to achieve what's achievable – and that landscape is always changing.

    For those of us being informed about the letter after the fact, this thread provides the only opportunity for open discussion. We do well to ask whether our “compromise” message is credible and sound, especially if we're out of step with the ME experts.

    Almost a year ago, fourteen ME/CFS organizations and 19 individual advocates send a joint letter to DHHS stating, “It is long past time to subset Fukuda-defined patients and actively consider the existing 2003 Canadian Consensus Criteria (CCC) or 2011 International Consensus Criteria (ICC) for those patients who suffer from the hallmark post-exertional malaise.” The 2012 joint letter asked for the adoption of the term ME/CFS: “Many experienced clinicians and researchers recognize the equivalency or close similarity of ME and CFS based on the growth in scientific understanding and have adopted the term ME/CFS. All of DHHS should follow the NIH’s lead and adopt the term ME/CFS." The letter asked too that CFS be reclassified as a neurological disease: “It is crucial that NCHS ensures that the ICD-10-CM classification of CFS is aligned with WHO’s neurological classification before ICD-10-CM rolls out.”

    This year's joint letter requests the adoption of the CCC (ME/CFS) definition and the ME/CFS Primer exclusively, though the name requested is now ME. CFS is to be dismantled, and DHHS is charged with responsibility for ensuring that no harm ensues. The ICC authors are cited often, but not with respect to implementation. The joint letter states:

    In keeping with President Obama's commitment to Open Government, the key stakeholders – ME patients and ME experts – must be engaged in full and open partnership to plan for and ensure implementation of this change. We are the ones that best understand this disease and will provide valuable input to these activities.

    Our credibility depends on our partnership with ME experts. The International Consensus Panel writes that “the panel is not dismissing the broad components of fatiguing illnesses…. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.” Is this statement consistent with the joint letter's plan for change? If CFS were to be dismantled prematurely, would those patients who don't meet the CCC be diagnosed with CF or would they perforce be included in an expanded or "empirical" version of ME?

    I appreciate that Phoenix Rising got involved in the drafting process partway through. But it should be possible to learn more about the process. Who actually had input? Were any medical or policy experts consulted?

  • rlc May 19, 2013, 10:28 pm

    Excuse me if I have missed something, were the members of PR and the greater community asked in anyway if they were in favour of this? Or if they would like some input?

    Or is this just a repeat of the behaviour exhibited in the misguided attempts to change the WHO code for CFS?? Which was done behind the members and patient community’s backs. Which judging by the silence on the issue failed, as predicted.

    If this is another case of PR and the other US orgs going behind the backs of the members of PR, the patient community and people who give them donations, as was the case with the attempts to change the WHO code, I must admit to being somewhat disappointed (again).

    Having seen on several occasions that it is a waste of my time trying to explain, why these kind of plans not only won't work, won't be accepted and only succeed in portray the people who formulate these plans in a bad light, I won't bother to spend too much time explaining it.

    For members reading, this plan won't be accepted because the CCC is Canadian, and the CDC is already working on its own new definition. Therefore the US government will only want to use the new CDC definition, as using the CCC would be a public admission that the CDC is incompetent in this field.

    Nobody should be wanting the CCC because its own authors have rejected it, and have come up with the ICC instead, plus the CCC has a very incomplete set of tests to rule out other diseases, and has so many multiple choice symptoms that it doesn’t really define any disease, let alone ME. Hence the attempts to fix it with the ICC. The CCC also does not say that ME is a separate disease to CFS, it combines the two conditions and calls them ME/CFS, so using it will defeat the purpose of trying to get rid of the CFS name.

    It should also be noted that PEM is not a hallmark of ME according to the historical literature. PEM is a common symptom found in numerous conditions, and in no way is it helpful to separate ME patients from other diseases.

    ME acquired its name Myalgic because one of the symptoms as well as muscle pain, was post exertional TESTABLE MUSCLE WEAKNESS, not post exertional malaise.

    If people actually want to solve this problem properly, they need to recognise that the problems are not caused by what name is used, or what definition is used. The problem is and has been since CFS was invented in 1988, that none of the definitions including the CCC and ICC have complete differential diagnosis lists, to rule out other diseases, or complete testing lists for these diseases, with up to date reference ranges. Which means that no matter what definition researcher’s use they end up with mixed cohorts and the research is corrupted and goes nowhere. Try asking the US government to fix that problem and we might start getting somewhere.

    Anyway if I ‘m right in my belief that that patient community and PR members have not been consulted in this.

    To the PR team, please in future have the common courtesy, to let the people who through their donations allow you to have a PR to be a team member of know what you are doing. You may find that their input is more than useful. As in this case save you from wasting your time. Why do the US CFS orgs feel this need for secrecy? No harm would be done if the politeness was done to inform people of these kinds of things before hand.

    Anyway I have said all I need to say, as you may have guessed I won’t be signing this.

    All the best

  • Bob May 20, 2013, 6:41 am

    rlc, I agree with some/many of your points, but not your overall conclusions.

    The way i see it is that, as patients, and patient advocates, we have three overall options, in terms of advocating for change:
    1. Do nothing.
    2. Advocate for specific changes, or
    3. Attempt to push the government organisations in a general direction.

    With specific changes, patients are never going to agree about all of the specifics. There are always going to be disagreements.
    However, the vast majority of us can probably agree about the direction of travel in which we want the government to travel.

    With this letter, even if we don't all agree on the specifics, if nothing else, it makes the government organisations aware of some of the issues that concern patients, and it makes them aware that there are strong feelings about these issues. As such, it helps push the government organisations in a direction of travel.

    (When I refer to 'issues', I mean, for example, the heterogeneity of CFS, and the need for research into subgroups. Also the widespread dissatisfaction felt about the name 'CFS'. etc. etc.)

    The letter puts pressure on the government health departments to take the issues seriously: to consider the issues, to engage with the patient community about the issues, and to investigate the issues with a view to making changes.

    Sure, the CDC, and other government organisations, probably won't adopt the CCC overnight (if ever), but the CDC could at least insist that the CCC is used in all government-funded research (which IMO can only be beneficial for everyone, and a step in the right direction).

    The letter puts pressure on them to treat subgroups and subsets as a priority, however subgroups are defined. We need better defined subgroups, which will hopefully start to emerge with continued research, but there's no harm in pressing the CDC to make subgroups a priority.

    As long as they are aware that CFS is a heterogeneous condition, and that it requires a serious and urgent investigation of subsets, and research into subsets, then IMO that's a good thing.

  • Bob May 20, 2013, 6:46 am
    rlc

    It should also be noted that PEM is not a hallmark of ME according to the historical literature.

    Early ME literature evolved over time. The early definitions of ME were modified, by the original authors, and were not set in stone. As such, I'm not sure how helpful it is to rely on historical literature. Perhaps it's best to work with the most recent literature.

    rlc

    PEM is a common symptom found in numerous conditions, and in no way is it helpful to separate ME patients from other diseases.

    I question your assertion that PEM is a common symptom found in a number of conditions.
    I have yet to hear of any other conditions in which PEM* is a symptom.

    * I'm referring to post exertional malaise, as opposed to post exertional fatigue: Specifically prolonged PEM which isn't relieved by rest. As far as I am aware, no other condition has the same symptom.

  • alex3619 May 20, 2013, 6:57 am

    I agree with a lot of the points made here on this thread. First, I approve of the letter, and I will sign it when that option is available. Second, I don't think it will achieve much. What it might do is send a message, and get people thinking, begin to create momentum toward real change. The ICC is a better choice, but it would not be acceptable just yet.

    At this stage I think the CDC will push for its own new definition. We will have to see how robust and validated that is, but here is the catch: its still years away, and then it will have to be studied, and only then will we be able to really advocate for or against it.

    There is no question that more robust research criteria will assist research outcomes. They may also assist clinicians in prescribing more appropriate treatments.

    The biggest thing arising from all this will be that it will demonstrate that we have the desire to clearly separate ME and CFS, and even CF, in a focussed way. The more who co-sign the letter, the clearer it will be. It may also assist construction of future agendas at meetings, and sets the stage for potential progress. Whether there is real progress will depend in part on future advocacy.

    I really think the CDC will stall and push for everyone to wait for their definition. Since they are now using measures like VO2max, its even possible they might make some serious advances. Given their history I am not holding my breath in hope, but I cannot say they will fail either, and they are not doing this alone. Maybe the CDC will finally begin to address the issues arising out of the numerous ME epidemics that have almost been forgotten. If not, we will be watching, and we will not be happy with the CDC. They have to get it right, its long past the time for distorted and biased agendas in the science of ME – we need clear objective advances.

    The fact is though that any doctor can choose to make a diagnosis of ME, right now. They choose not to, though largely I think because they are unaware of the last half century of ME research. If all this letter does is advance that awareness a tiny bit, thats enough. If it does more than that, its a bonus. If it does even more thats better than a birthday present.

    On PEM, while many conditions have exercise intolerance and post exertional fatigue, the nature and extent of the energy crash in ME appears to be unique to ME. Exercise science gives us the tools to show this. With a push to validate repeat VO2max testing for measurement of ME we might even wind up with a diagnostic biomarker. Not everyone with CFS or CF will have ME though.

    There are now several potential diagnostic biomarkers for fibro too. Things are changing, and for the better, and the time for unproven unscientific hypotheses such as used in psychogenic medicine is drawing to a close.

  • Ember May 20, 2013, 1:58 pm
    alex3619

    The ICC is a better choice, but it would not be acceptable just yet….

    The biggest thing arising from all this will be that it will demonstrate that we have the desire to clearly separate ME and CFS, and even CF, in a focussed way. The more who co-sign the letter, the clearer it will be.

    Is a decade-old Canadian-based document that is in the process of being superseded likely to be more acceptable than the ICC? Do patients find it more acceptable?

    If patients want to demonstrate that we have the desire to clearly separate ME and CFS, and even CF, in a focused way, then why don't we demonstrate just that? Do we really see no danger in having CFS dismantled at this stage?

    Why are we asking that the term ME be assigned to the CCC? The authors of the ICC have asked that a CCC (ME/CFS) diagnosis be left in the broader CFS classification. The ME-ICC is intended to be more restrictive. Why counter that intent?

  • Nielk May 20, 2013, 2:57 pm
    Ember

    Is a decade-old Canadian-based document that is in the process of being superseded likely to be more acceptable than the ICC? Do patients find it more acceptable?

    If patients want to demonstrate that we have the desire to clearly separate ME and CFS, and even CF, in a focused way, then why don't we demonstrate just that? Do we really see no danger in having CFS dismantled at this stage?

    Why are we asking that the term ME be assigned to the CCC? The authors of the ICC have asked that a CCC (ME/CFS) diagnosis be left in the broader CFS classification. The ME-ICC is intended to be more restrictive. Why counter that intent?

    What is the characteristic difference between the CCC – CFS definition and the ICC-ME definition?

  • alex3619 May 20, 2013, 3:41 pm

    The primary difference between CCC and ICC in this context is not based on the definitions, but on the politics. The CCC is already widely adopted, its also better characterized in the literature due to continued use. The ICC will get there. I see the CCC as an interim measure until the weight of support is there for the ICC, or the definition after the ICC whatever that is. This is not just a scientific game, its a political one. Its also about long term strategy.

    We should also not be confused by the term CCC CFS – its an ME definition, always was.

  • Ember May 20, 2013, 5:09 pm
    Nielk

    What is the characteristic difference between the CCC – CFS definition and the ICC-ME definition?

    The “characteristic” difference between the CCC (ME/CFS) and the ICC (ME) definitions probably lies in the cardinal feature of the disease. Valentijn posted here the difference between PEM (ME/CFS) and PENE (ME) in reported responses to exercise. I pointed out earlier here that PENE, unlike PEM, is defined as having prominent symptoms primarily in the neuroimmune regions.

    A while back, I commented too on a key difference between the ME/CFS Guidelines (by CCC authors) and the ME/CFS Primer (by IACFS/ME authors) here. I notice that Wildaisy has also commented here more recently. The ME/CFS Primer is much softer than are the ME/CFS Guidelines on CBT/GET. The ME Primer, by contrast, doesn't mention these as possible treatments for ME.

    The politics surrounding the definitions and primers is its own story, with CFS (including ME/CFS) focusing more on fatigue. CFS (including ME/CFS) definitions generally require that there be six months of fatigue for a diagnosis.

  • snowathlete May 21, 2013, 8:47 am
  • Bob May 21, 2013, 9:00 am
    snowathlete

    Somewhat related: Case definitions and diagnostic criteria for Myalgic Encephalomyelitis and Chronic fatigue Syndrome: from clinical-consensus to evidence-based case definitions.

    I haven't got access to the whole paper, so I've only read the abstract, but it seems that it could be a useful contribution to the debate.
    I would be happy if the CDC made a start with subgrouping Fukuda CFS in the way outlined in the following extract from the abstract:

    "Maes et al. performed pattern recognition methods and concluded that CFS patients (according to Fukuda's criteria) should be divided into those with CFS or ME, on the basis that people with ME display a worsening of their illness following increases in physical or cognitive activity."

  • Valentijn May 21, 2013, 9:33 am
    Ember

    The “characteristic” difference between the CCC (ME/CFS) and the ICC (ME) definitions probably lies in the cardinal feature of the disease. Valentijn posted here the difference between PEM (ME/CFS) and PENE (ME) in reported responses to exercise.

    I think the PEM/PENE differences between the CCC and ICC are pretty minimal. Basically the ICC is more recent so had more research-based abnormalities to list associated with it versus normal response to exertion. But the same research is there regardless of whether the CCC or ICC is used, so long as PEM/PENE is being prominently featured.

  • Bob May 21, 2013, 9:35 am

    Another related paper has just been published by the Australian team (Staines & Marshall-Gradisnik etc) recommending that the CCC and ICC are used in "prevalence research":

    The adoption of chronic fatigue syndrome/myalgic encephalomyelitis case definitions to assess prevalence: a systematic review.
    Johnston S,Brenu EW,Staines DR,Marshall-Gradisnik S
    http://www.ncbi.nlm.nih.gov/pubmed/23683713

  • Ember May 21, 2013, 11:33 am
    Valentijn

    I think the PEM/PENE differences between the CCC and ICC are pretty minimal.

    As a fatigue state, PEM seems to be implicated in a number of diseases, whereas PENE is defined as a neuroimmune response. The ICC authors note:

    Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day. The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion and with reduced ability to undertake the same activity within the same or several days.

    The ICC symptom clusters focus on PENE: (1) PENE, (2) neuorological impairments, (3) immune, gastro-intestinal & genitourinary impairments, and (4) energy metabolism/ion transportation impairments. The CCC clusters focus on fatigue: (1) fatigue, (2) post-exertional malaise and/or fatigue, (3) sleep dysfunction, (4) pain, (5) neurological/cognitive manifestations, (6) autonomic / neuroendocrine / immune manifestations, and (7) at least six months of illness.

    Being more restrictive, ME is less a diagnosis by exclusion. Compare the ICC and CCC exclusions:

    Excusions (ICC): Primary psychiatric disorders, somatoform disorder, substance abuse & paediatric 'primary' school phobia.

    Exclusions (CCC): Addison's disease, Cushing's Syndrome, hypothyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes melitus, and cancer…treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse.

  • Bob May 21, 2013, 12:13 pm
    Ember

    As a fatigue state, PEM seems to be implicated in a number of diseases, whereas PENE is defined as a neuroimmune response.

    PEM is not a "fatigue state". There is a difference between fatigue and malaise.

    But even in terms of 'fatigue', I'm not sure if there are any other diseases which feature post-exertional fatigue in the same way as ME does. i.e. prolonged severe fatigue (assuming that 'fatigue' is a feature of 'malaise', for the sake of discussion) as a delayed reaction to minimal exertion, which is not relieved after normal rest.

  • Ember May 21, 2013, 12:24 pm
    Bob

    PEM is not a "fatigue state". There is a difference between fatigue and malaise.

    Can you clarify further? The second cluster in the CCC is "Post-Exertional Malaise and/or Fatigue." When I say that PEM "seems to be" implicated in a number of diseases, I'm simply responding to numerous comments that I've read on this forum. I haven't heard it claimed that PENE, the cardinal feature of ME, features in the same way in other diseases.

    If it helps, here are the definitions of PENE (ICC) and PEM and/or Fatigue (CCC):

    A. Postexertional neuroimmune exhaustion (PENE pen-e): Compulsory

    This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:

    1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
    2. Postexertional symptom exacerbation: e.g.acute flu-like symptoms, pain and worsening of other symptoms.
    3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
    4. Recovery period is prolonged, usually taking 24h or longer. A relapse can last days, weeks or longer.
    5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

    2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patients cluster of symptoms to worsen. There is a pathologically slow recovery period – usually 24 hours or longer.

  • Bob May 21, 2013, 1:36 pm

    Ember. Thank you for the info re the CCC. I didn't realise that a patient could have post-exertional malaise or fatigue, for the CCC. I thought the CCC required post-exertional 'malaise'. So thank you for highlighting that.

    I wonder how many others haven't noticed that.

    Ember
    Bob

    PEM is not a "fatigue state". There is a difference between fatigue and malaise.

    Can you clarify further?​

    It's an interesting issue to explore…
    I've always considered there to be a subtle qualitative difference between fatigue and malaise.
    And I've always considered 'fatigue' to be a feature of 'malaise'.
    For 'malaise' I think of flu.
    For 'fatigue' I think of how it feels to be exhausted from exercise.
    Thinking about it now, I wonder if it is possible to easily distinguish the two, if at all.
    Perhaps there is a subtle difference.

    On google, 'malaise' is defined as: "A general feeling of discomfort, illness, or uneasiness whose exact cause is difficult to identify."

    I don't know how much research has been carried out to distinguish 'malaise' from 'fatigue' in CFS/ME patients.
    But, as you've been pointing out, the ICC defines PENE quite specifically.

    Ember

    When I say that PEM "seems to be" implicated in a number of diseases, I'm simply responding to numerous comments that I've read on this forum. I haven't heard it claimed that PENE features in other diseases.

    I've yet to hear of any disease, or illness, which features PEM or post-exertional fatigue in the same way that CFS/ME does. I think it is unique to CFS/ME. (i.e. prolonged severe fatigue as a delayed reaction to minimal exertion, which is not relieved after normal rest.)

  • Ember May 21, 2013, 1:42 pm
    Bob

    I've yet to hear of any disease, or illness, which features PEM or post-exertional fatigue in the same way that CFS/ME does. I've often asked.

    When I had cancer, I was excluded under the CCC. I wouldn't have been excluded under the ICC.

  • Bob May 21, 2013, 1:53 pm
    Bob

    I've yet to hear of any disease, or illness, which features PEM or post-exertional fatigue in the same way that CFS/ME does. I've often asked.

    Ember

    When I had cancer, I was excluded under the CCC. I wouldn't have been excluded under the ICC.

    And I've often heard of people with cancer being wrongly diagnosed with CFS/ME.
    Cancer can feature severe fatigue, but my argument is that the fatigue, or malaise, that cancer patients experience, is qualitatively different to the PEM that CFS/ME patients experience. I believe that the two are distinguishable, and I've never heard any experts argue that they are indistinguishable.
    If the CCC is not able to distinguish between cancer patients and CFS/ME patients, then perhaps it's not adequate.
    (BTW, I've never argued that the CCC are superior to the ICC.)

  • Ember May 21, 2013, 2:16 pm
    Bob

    If the CCC is not able to distinguish between cancer patients and CFS/ME patients, then perhaps it's not adequate.

    No, the CCC isn't adequately to distinguish ME/CFS from cancer. As an aside, I considered the likelihood that I was immuno-compromised in deciding whether or not to undergo radiation. I walked out when my GP told me not to think like that because ME/CFS is a syndrome, in any case, and not a disease. That scene wouldn't have happened had the ICC been published at the time.