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

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

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?
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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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Ember, earlier in this thread you cited Invest in ME in support of the ICC, and indeed the ICC primer was distributed to conference attendees. But I believe you are misrepresenting the ICC authors and Invest in ME when you cite their support for the ICC as a reason to reject this petition and letter. I will be trying to get comment from ICC contributors and authors on this matter in due course, but if you can get a quote from any of them opposing the letter to the DHHS I'd be most interested to see that. Meanwhile, I do have some quotes from the IiME conference journal from last week which I think illustrate that those supporting the ICC are not also opposing use of the CCC:

Page 6:
"So we need...to adopt the latest ICC or CCC criteria for ME - for research and for diagnosis"

Page 21 (titled Guidelines):
"Invest in ME support the use of either the so called Canadian Consensus Criteria (CCC) or the later version of these guidelines the International Consensus Criteria (ICC). For some time Invest in ME have been responsible for distributing printed copies of the Canadian Consensus Guidelines in the UK...The Canadian guidelines were recently endorsed by the US CFS Advisory Committee. More recently the International Consensus Guidelines (ICC) has been produced and is available in printed form from Invest in ME. Contact info@investinme.org to order."

With this in mind I would be interested if you could supply a referenced quote from any ME, ME/CFS or CFS organization, research or physician saying that they are opposed to the use of the CCC. The quotes from the ICC itself do not indicate that, despite your interpretation of them, and I do not believe that any of these organizations or individuals would support the line you are taking on this.
 
What happens to all the research to date that has been completed on Chronic Fatigue Syndrome using Fukuda? You know all that great research that we actually do approve of - and all that great research that is happening NOW?

How would that be resolved. How can one effectively draw a line and yet still in effect say 'Well, we still think those studies are applicable even though we think they apply to a completely different disease?'

Just one of several/many practical aspects to this kind of 'easy' solution advanced by some folk that never seems to get the consideration it deserves. These are obstacles that 'science' and the 'establishment' will throw up as obstacles in need of consideration.

I'm not having a go at you my friend - merely posing the questions:

What would happen? How could this be resolved to science's satisfaction without any Biomarkers that actually confirm/identify a unique disease?

'tis but one of the reasons why I think we can only hope to get USA to acknowledge 'ME' by moving to 'ME/CFS' as per the CCC proper until such time as science better determines any specific differences and can apply them definitively to patient populations and move us beyond report-based symptom clusters.

And I repeat. This is less about the name than it is the categorisation of encephalomyelitis. As medfeb alluded to above - even if it were called 'Zombism' but had that classifcation - and to some extent, history - there would be similar efforts to drive it's recognition.

Here's another one. What if the science determines a neurological/nervous system categorisation is actually incorrect? What if 'this disease' as applied to the majority of those meeting CCC is far better categorised in the Immune System area - or somewhere else?

There are indeed huge problems with even ME as a category. Its long been compromized.

The old research does not go away because a name or definition has changed. Its still on the record. Lets suppose CFS and ME lead us to a new disease definition called, wait for it, Bluck Disease. I like to use that as a nonsense word, as it takes it a step away from precenceptions, though it does risk people seeing it as silly.

Bluck Disease would still be historically grounded in ME and CFS research. However having a biomaker, lets call it marker X, means that the old research is suspect. Important issues in the old research can then be retested on Bluck patients. The research and old results are not gone, it just needs to be retested.

What about patients? The term CFS isn't going anywhere for a long time, no matter what we do. Nor is the term ME. Bluck Disease would become a new category, placed wherever on the ICD the underlying mechanism puts it .. possibly in immunology. In time the old category for CFS would be deleted as obsolete, but not for years giving the medical system time to adjust to the new disease category.

What happens to patients without marker X? Nothing much will change until we find their issues, be it linked to marker Y or Z, and mechanism B or C.

Science evolves. Definitions evolve. The category CFS will eventually die, and I think so will the category ME. It will however remain in the history books.

One of the issues that has happened with very weak disease definitions is weak scientific results. Those results should strengthen once we have a good objective definition. A good definition can mean better results from smaller studies, reducing costs. Higher replicability of results should occur, meaning the results can be considered more reliable.

For the meantime though whether we call it CFS, ME or Bluck Disease (I wont abbreviate that for obvious reasons) doesn't matter to the public, nor to much of the medical profession. Where it matters are our scientists, and its not the name that matters but the definition, especially if its backed by good diagnostic and treatment biomarkers.

So in a sense, as I have said before, the whole CFS, CFS/ME, ME/CFS and ME debates are side issues from a scientific perspective.

From a political perspective its entirely different. CFS has such a large negative legacy that its a very bad term to use. People who are ill informed on the topic - and thats almost everyone - will jump to conclusions. ME is taken much more seriously. From a public relations perspective the name is more important than the definition.

However the real negative driving force stems from psychogenic medicine. Nothing we do scientifically will change that that unless we have a diagnostic marker X, mechanism A, and cure G (for Good). Even then they will say, ok, Bluck Disease is something else, but we were right about the rest, now let us help these patients who do not have Bluck Disease. The history of psychogenic medicine is all about targeting anything that is not understood, without any objective evidence. They argue that we have no objective proof that CFS or ME exist (while ignoring the science that shows things are physically wrong) because we have no mechanism or biomarker. As i say in my signature, if thats such a big problem doesn't the same argument apply to any psychogenic diagnosis?

More in a while.
 
Psychogenic medicine has a really really bad track record. No objective tests. Very poor science, if indeed it can even be said to be science, which the leading philosophers of science in the twentieth century disputed, including Popper. Not once have they ever been demonstrated right. Numerous times they have been shown to be wrong. Lets call it 20 for wrong, zero for right. What is the ratio? Divide 20 by zero and what do you get?

None of that proves they cannot be right, some time for some disease. Its hard to prove that, and maybe impossible. What can be said is they have no objective case for these diagnoses to exist, or for any of it to be considered either science or part of medicine. Its an unproven collection of hypotheses still awaiting decent science. It does not deserve substantive research funding, or any privilege under law.

If they are so good, and so right, how come the cure rate is dismal? Their defence, of course, is that these problems are part of the difficulty in working with mental illness, the mind is so very difficult to study and mental illness is hard to cure. Or they go the other way, and invoke vague claims that these arguments fall afoul of Cartsian dualism. There is no mind, there is only the Force. Oh, wait, thats a sci fi movie franchise. The problem with all of this is that to invoke their mechanisms they have to invoke what is essentially magic. Trust us, we have an unproven and unprovable idea, and we are doctors, so it must be right.

These are unproven experimental hypotheses. Treating them as anything much more than that is potentially pseudoscience. I have a lot more to say about pseudoscience, but this is not the venue for it.

I have a question of my own. If pseudoscience gets a grip in a branch of applied science, and is protected by conservative institutions and even the law, how do we get rid of it? How do we stop them biasing the agenda? How do we stop the harm this causes?
 
With this in mind I would be interested if you could supply a referenced quote from any ME, ME/CFS or CFS organization, research or physician saying that they are opposed to the use of the CCC.
The International Consensus Panel hasn't opposed the use of the CCC. Rather they have stated that those diagnosed using the CCC “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.” With the CCC thus diagnosing CFS, I've asked why we would be requesting the adoption of such an outdated definition.

I quoted Invest in ME earlier: “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.” If you are claiming that I've misrepresented others, please quote me exactly to support such a claim.
 
The International Consensus Panel hasn't opposed the use of the CCC. Rather they have stated that those diagnosed using the CCC “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.” With the CCC thus diagnosing CFS, I've asked why we would be requesting the adoption of such an outdated definition.

I quoted Invest in ME earlier: “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.”

Ember, I respect your passion and sincerity about this subject, but I agree with Mark that you are over-interpreting things.

The ICC panel may prefer the ICC, but they have not denounced or retracted the CCC, as far as I am aware.

And support for the ICC does not automatically exclude support for the CCC.

Invest in ME are long-term supporters of the CCC, and I haven't seen any statements from them saying that they do not now support the CCC.

And as I pointed out earlier, your claim that the CCC is a 'CFS' criteria is your own interpretation, and it is not the stated position of the ICC panel, as far as I am aware. (Your historic posts clearly show that they always intended it to be an 'ME' criteria, and they haven't issued a categorical statement to change their position.) (I understand your interpretation, but I don't think I agree with it.)
 
And as I pointed out earlier, your claim that the CCC is a 'CFS' criteria is your own interpretation, and it is not the stated position of the ICC panel, as far as I am aware.
I've repeatedly quoted the recently-stated position of the International Consensus Panel:
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.... As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.

For the past three weeks, I've been asking whether any medical experts were consulted concerning the demands, including the implementation plan, put forward in the letter to DHHS. I've asked too whether those frequently cited in the letter were afforded the courtesy of reviewing it before it was sent. Mark now says, “I will be trying to get comment from ICC contributors and authors on this matter in due course....”

The letter to DHHS states, “In keeping with President Obama's commitment to Open Government, the key stakeholders – ME patients and ME experts – must be engaged in a full and open partnership to plan for and ensure implementation of this change.” In view of this statement by the advocates, consultation seems overdue.
 
Morning, I'm a bit tied up today, but will read all the comments and come back to any replies. Just popped in to post this rather interesting article from the BBC that I came across the other day.

While it is in relation to DSM and mental illness specifically; it is also relevant I think to how important receiving a diagnosis and identity for any illness can be for the patient. Just by way of recognition of this fact.

Also I seem to recall that the coding from WHO has a similar importance to the ones received from DSM in terms of healthcare and benefits - though I might be wrong. Anyway, I thought I'd drop it into the thread:

DSM-5: What's in a name? Codifying mental illness
 
Thanks for replying Alex :thumbsup:

...From a political perspective its entirely different. CFS has such a large negative legacy that its a very bad term to use. People who are ill informed on the topic - and thats almost everyone - will jump to conclusions. ME is taken much more seriously. From a public relations perspective the name is more important than the definition...

Do you not feel that 'CFS also known as ...' is now also as ingrained in the medical conscious that even a change to ME will still carry that 'stigma' of 'we are not sure what it is' i.e. the 'it could be all in the mind' meme that many feel stems from the entire psychiatric profession?

I think that you might - from what you have said. What I think people would really like is a disease that is clearly understood, clearly recognised as being something 'physical'.

So - yes - you could call it anything you like (as we both have); it is where it is placed in the medical lexicon and where every-single-medical-professional is forced to acknowledge it belongs; that will matter far more to those that feel this remains an issue.

Like you said, science doesn't really care about that but patients want certainty - now. Or at least less uncertainty, and feel I suppose that an acknowledged name-change to ME would achieve this.

quote="alex3619, post: 361238, member: 786"
...However the real negative driving force stems from psychogenic medicine. Nothing we do scientifically will change that that unless we have a diagnostic marker X, mechanism A, and cure G (for Good). Even then they will say, ok, Bluck Disease is something else, but we were right about the rest, now let us help these patients who do not have Bluck Disease. The history of psychogenic medicine is all about targeting anything that is not understood, without any objective evidence. They argue that we have no objective proof that CFS or ME exist (while ignoring the science that shows things are physically wrong) because we have no mechanism or biomarker. As i say in my signature, if thats such a big problem doesn't the same argument apply to any psychogenic diagnosis?

In the absence of a cure, in the absence of specific drug therapy (or even with it); we as a patient community - and as individuals within it - will need the services of 'mind doctors' to help us cope. These doctors need to be specialists, to have experience of the condition (of the complexities and presentation of those patients with it); and apply their practices in a tailoured and professional manner.

The attitude of those professions (collectively and individually) and their presence will not be affected by a name-change (as you said); but neither will it should our disease be acknowledged as a having a purely 'biological' cause and is subsequently so categorised.

We will still all be living and trying to deal with a ravaged life and they and others will be trying to get us to effectively 'do more', to look differently at things, basically to change our outlook and generally 'interfere'. And they will remain an influence both in our private lives and in the scientific world.

We can't change history but we can help improve upon it and maybe through better education and liaison this can happen.

Be back later if I can. Thanks again :)
 
Hi Firestormm , yes I do think that ME has a huge negative legacy too, stemming from 1970. Indeed I have formed the view that it is largely that negative legacy that led to the creation of the term CFS itself, and the Holmes definition, as well as influencing the substantive lack of attention at the Incline Village outbreak, Londonville, etc.

However there is a difference between saying ME and saying CFS to those who are largely unaware: the media, the public, the doctors who have not made up their mind yet. Its a political thing.

One thing I have said for years though is that the name will not matter for very long. As soon as we change the name the story from the psychobabble cohorts will change, the spin machine will be active, and any advantage will be lost. What makes a sustained difference is the diagnostic criteria.

What will make a huge difference is a reliable diagnostic or treatment biomarker, or a cure. I think there are now reasonable grounds to think we might have these things within my lifetime. There is cause for optimism.

To my mind the name debate is largely a waste of time for advocates, though the diagnostic debate isn't. There are things we should be spending more time on, from assisting funding to medical research to helping those incarcerated against their will because they have ME and somebody thinks they have some unprovable psychobabble diagnosis.

I have stated before that we need psychological support. What we don't need is experimental unproven diagnoses and treatments. Educating doctors is not enough. They have had the potential to be educated on this since before I was born, though the big scientific advances started about a decade ago now, in 2003, with the publication of VO2max testing and Peckerman's work on cardiac insufficiency. Education does very little to chip away at entrenched interests that are being taught and reinforced all the time.

You are quite correct though Firestormm that we can liase and work with psychiatrists who are not heavily bound to psychogenic dogma. Many, and possibly the majority (some claim that but I don't see the evidence) are at least doubtful of psychogenic claims. One of the things I want to push for is greater involvement of the medical profession in working to clean up this mess. How to achieve that on a wide scale is the question.

If the Rituximab trials are highly successful then this could be an important trigger for change, but it will only be the beginning. MS, diabetes, lupus, gastric ulcers - medicine never abandoned babble as the science came out that these were physical disorders. They just move on to the next unexplained disease.

Alex.
 
I've repeatedly quoted the recently-stated position of the International Consensus Panel:

For the past three weeks, I've been asking whether any medical experts were consulted concerning the demands, including the implementation plan, put forward in the letter to DHHS. I've asked too whether those frequently cited in the letter were afforded the courtesy of reviewing it before it was sent. Mark now says, “I will be trying to get comment from ICC contributors and authors on this matter in due course....”

The letter to DHHS states, “In keeping with President Obama's commitment to Open Government, the key stakeholders – ME patients and ME experts – must be engaged in a full and open partnership to plan for and ensure implementation of this change.” In view of this statement by the advocates, consultation seems overdue.

Thanks for confirming what was said in this post Ember and your previous one. I certainly get confused. I know that medfeb mentioned that they had run it past some doctors in the reply on the page 6; but you probably want to hear from Mark.

I hope very much that this meeting at CFSAC (?) will prove frank and comprise some of the authors behind these attempts to better diagnose (and research) the/these diseases.

But you know what I am going to say, so I won't repeat further any previous thoughts; other than to say that I don't personally think we are there yet.
 
I know that medfeb mentioned that they had run it past some doctors in the reply on the page 6; but you probably want to hear from Mark.

I want the advocates to consult with the experts when they can't answer the questions themselves. Otherwise, I find it misleading for them to claim in their letter that “the key stakeholders – ME patients and ME experts – must be engaged in a full and open partnership to plan for and ensure implementation of this change. We are the ones that best understand this disease and will provide valuable input to these activities.”

Mary writes that “the letter was in the works for about 6 months with numerous discussions across a number of organizations and individuals that included a few doctors and a number of long term advocates on how to frame the discussion and on what recommendations to make.” The International Consensus Panel position was published eight months ago. Why was there no consultation with the experts?

Over the course of three weeks, I asked repeatedly whether any medical or policy experts were consulted. Mark responded:
The board members of all the ME/CFS non-profits are very much bound to consider the good of the entire patient population. As a board member of one of those non-profits that signed, it's my responsibility to act not in my own interests, but in pursuit of the non-profit's mission, which is basically to support and advocate for the whole ME/CFS population. I take that responsibility very seriously, and the interests of ME and CFS and ME/CFS patients - everyone - are always what I keep in mind. The same is true of the other PR board members and I am quite sure it is true of the other non-profit board members as well. That is what serving on the board of a non-profit means, there is no other motivation. I don't think we are any less bound than medical or policy experts in that respect.
Mary answered, “You asked if we consulted a policy expert - we did not but we do recognize that there are huge policy issues to be dealt with which is why we included the planning recommendation.”

Here now are the most recent responses: from Mary, “I am sorry that it took me so long to reply to your questions but I did try to answer your questions as best I could. I still need to reply to your post from yesterday;” and from Mark, “I will be trying to get comment from ICC contributors and authors on this matter in due course....” When is it time for the advocates to consult?
 
I signed the petition because I agreed to the fact that it is a step forward but, I do have many questions too. Actually the more I think about it, the more confused I get. Are we saying (by signing this petition) that we want them to accept the CCC and change the name to ME thereby voiding CFS altogether as an illness?

So, what we are saying here is that anyone who does not fit the CCC criteria, will not fit in to any diagnostic illness?

I did check what Ember say the ICC primer for physicians does state that:


2. Remove patients who satisfy the ICC from the broader category of CFS. The purpose of diagnosis is to provide clarity.
The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from
those who are depressed or have other fatiguing conditions. Not only is it common sense to extricate ME patients
from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule
that a disease cannot be classified under more than one rubric. The panel is not dismissing the broad components of
fatiguing illnesses, but rather the ICC are a refinement of patient stratification. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.

They are saying that if you only fit the CCC criteria and not the ICC then you fit into the broader CFS/CF category. Only those who fit the ICC criteria should go by the name ME.

Are we to ignore the ICC?

To me this is a confusing but, critical point. Take for example, Dr. Klimas. She was a principle of the CFS -CCC, the ME-ICC and calls her clinic the "Chronic Fatigue" clinic??????????????

Are we talking about one, two or three separate illnesses here. Is there a very broad pool of ill patients who are suffering from all types of "fatiguing" illnesses? Let's imaging a very large circle with a middle size circle inside and a smaller circle inside of that. The large circle being CF the middle circle CFS and the smallest one ME? If this is the case and we say we want to change the name to ME. what are we really talking about?

The fact that most clinicians, researchers and patient advocates seem to call "it" ME/CFS now means what?

The real point I would like to make is that I too would have liked for us to have had a voice when this was in the making.
 
Hi Medfeb or Mark, there seems to be a feeling that there was not enough consultation with medical experts about this letter. Medfeb you have said

the letter was in the works for about 6 months with numerous discussions across a number of organizations and individuals that included a few doctors and a number of long term advocates on how to frame the discussion and on what recommendations to make.

Could you please provide the names of the few doctors, as this may help to provide some medical legitamacy to the proposal.

Thank you
 
Came across a comment posted on Facebook (IiME page but not by IiME) beneath the ProHealth article and the petition of support:

The petition this article is recommending is pushed by a group that recommends the IACFSprimer and the CCC. The IACFS primer requires CBT and GET even for severely affected ME patients, and the CCC requires a person to be sick for 6 months before diagnosis.

So people should only sign this petition if they want CBT and GET for severe ME patients and for people to be in pain for 6 months before diagnosis--and then, when they are diagnosed, the delay will mean the treatments won't work as well. Be careful what you sign.

I've just been through the Primer and believe the claim above is wrong, and out of context with what was written; indeed the Primer references critiques and indeed critiques itself, GET and CBT as generally practiced.There are many references to exercise throughout the Primer and concerns are raised, about a 'gung-ho' approach, as well as when and where assistance might be afforded. Same can be said about CBT for that matter.

The 'six months before diagnosis' as laid out in the CCC is a fundamental difference from that prescribed in the ICC; from what I can recall. However, the CCC does indicate an earlier diagnosis might be possible, and indicates 3 months for kids.

7.The illness persists for at least six months. It usually has a distinct onset,** although it may be gradual. Preliminary diagnosis may be possible earlier. Three months is appropriate for children.

(There may be a more precise quote in the CCC that I didn't have time to locate)

Personally, I think given the state of play that a period of time is needed before diagnosis during which exclusionary testing should be explored. The number of months - don't know how they arrive at 6 but whatever - also allows for anything else to resolve itself.

Even if the ICC which is presumably preferred by the author of this comment, were to be implemented; I can't imagine that all the testing it lays out would be performed immediately. How practical - how common - is it for a person to experience an illness as complex as our own and receive an instant diagnosis anyway?
 
The petition may well serve the interests of patients diagnosed using the CCC, as may the ME/CFS Primer. The International Consensus Panel advises that patients diagnosed using the CCC "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."

The ME Primer doesn't recommend GET/CBT, and no waiting period is required for the appropriate management and treatment of ME patients.
 
I believe you are misrepresenting the ICC authors...when you cite their support for the ICC as a reason to reject this petition and letter. I will be trying to get comment from ICC contributors and authors on this matter in due course....
Why has there been no apparent hesitation in using statements by ICC authors to support the letter and petition asking DHHS to adopt the Canadian Consensus Criteria? On June 6, Mary wrote:
As Dr. Carruthers stated in the ME International Consensus Criteria, “Research on other fatiguing illnesses, such as cancer and multiple sclerosis, is done on patients who have those diseases. There is a current, urgent need for ME research using patients who actually have ME.” We must have a disease appropriate definition for ME that is separate and distinct from all the other unrelated conditions encompassed by the overly broad, fatigue-focused “CFS” definitions.

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

Advocates have not obtained Dr. Carruthers' permission to use his name in support of their letter or petition to DHHS, and without having consulted with any ME experts, they have no basis as yet for suggesting that experts would participate in the planning and execution of their proposed transition. I would hope that Phoenix Rising would distance itself from these references in the campaign.
 
I have not read all this thread yet, but I noticed the issue of PEM vs PENE and CCC vs ICC. The CCC document is long and is therefore able to include detailed descriptions of post-exertional symptoms, but it seems all that is required to actually meet the criteria for it is some post-exertional fatigue or malaise. Whereas the ICC lists 5 characteristics of PENE, which I assume are all compulsory (?), therefore making the ICC significantly stricter in that regard.
 
I have not read all this thread yet, but I noticed the issue of PEM vs PENE and CCC vs ICC. The CCC document is long and is therefore able to include detailed descriptions of post-exertional symptoms, but it seems all that is required to actually meet the criteria for it is some post-exertional fatigue or malaise. Whereas the ICC lists 5 characteristics of PENE, which I assume are all compulsory (?), therefore making the ICC significantly stricter in that regard.

Morning Bio :)

Out of interest, did the ICC board ever predict what % of the population they expect will actually meet their criteria and therefore what prevalence their version of 'ME' might actually confer? I forget.

Thanks.
 
Ember, you ask some great questions. I would really like to have some answers, especially an answer to this one. It makes no sense that they are using statements about the ICC to ask for the CCC, unless they are purposefully trying to confuse people..

Why has there been no apparent hesitation in using statements by ICC authors to support the letter and petition asking DHHS to adopt the Canadian Consensus Criteria?