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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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I'll provide references for you, Mark. But it's late here, so I'll leave off for now.

As an aside, you write, “You know as well as I do that it's an artificial fatiguing construct that lumps patients with different conditions into one un-researchable bucket, and that the name has negative implications for perception of those so labelled. That's why you want out of it.” Please in the future do me the courtesy of asking rather than assuming that you know my motivation.
 
Have I done due diligence to the best of my ability, Mark? Yes, I have.
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I'm sure we both have.

But I'm not the one with responsibilities for advocating for this population. Since you opened this thread, I've been asking about the due diligence behind this advocacy initiative, and I haven't yet received that reply.
As I've said, I pass that over to medfeb. She's been at CFSAC (and on the way there and back) so that's why you don't have your answer yet. As I've mentioned, there have been physicians and other medical professionals involved in the drafting, as representatives of their organizations, and experienced ME/CFS advocates have signed it, as you can see from the signatories list. I'm assuming your question is asking who was consulted who is not on the list of signatories, and that's what I'm waiting for medfeb to answer.


Why would you accuse me of an appeal to authority when the joint letter contains pages of footnotes making that same appeal?
Well, your previous post, at least, doesn't seem to me to have any argument other than an appeal to authority (the authority of the ICC panel). I've made quite a lot of arguments that don't appeal to authority. Citing references is not the same as appeal to authority; citing references is typically backing up an argument with evidence, which is a very different thing.

I'm not sure which of my statements you most want me to back up, but I'm prepared to do my best to oblige.
Thanks: I guess the main ones would be
- that the ICC panel request that CCC now be considered a CFS definition,
- that the ICC panel disagree with the dismantling of CFS
- that the ICC panel don't believe the CCC is good enough to help the existing scientific understanding to be developed into clear and demonstrable biomarkers

(more accurately, you said the last two are inconsistent with the view of the panel, but I don't understand why).
 
As an aside, you write, “You know as well as I do that it's an artificial fatiguing construct that lumps patients with different conditions into one un-researchable bucket, and that the name has negative implications for perception of those so labelled. That's why you want out of it.” Please in the future do me the courtesy of asking rather than assuming that you know my motivation.
Fair enough, I was assuming all of that, and the last sentence in particular was hasty shorthand; more accurately I'm assuming that's why you want ME patients out of that bucket. I'd also guess that you'd probably put it the other way round and say that you want ME patients in an appropriate (and homogeneous) bucket, but again you're right that's an assumption. I'd be interested to know if any part of those assumptions is incorrect, so please do correct me if I'm wrong on any of that...though I do appreciate this conversation is turning into a bit of a marathon for us both so no hurry from my POV.
 
I believe that we need to campaign for the ME-ICC because it best serves the needs of patients. The joint letter risks harming ME and CFS patients alike.

Hi Ember, I agree completely with you that the ME-ICC best serves the needs of the patients but in reality unfortunately things take a long time to become accepted in medicine. I remember reading one study in which it was found that new scientific findings took (it was a figure) between 13-15 years before they hit mainstream.

ME patients shouldn't have to wait any longer for an appropriate case definition. Our history doesn't suggest that moving incrementally from the CCC to the ICC would ever be easy. If

I agree that we shouldnt have to wait but unfortunately we are currently in a very unfair biased world. At least if things did go with the Canadian consensus defination, at least then ME would be being studied even if it is still being called CFS. We need studies of this patient group more then anything, its even more important then whatever its called.

We shouldn't wait idly by, hoping that the ICC will have its turn. The ICC is an orphan definition for an orphan disease. It's met serious opposition from entrenched interests, and it has no medical or political body paving its way. If patients don't get behind it, another independent panel of experts won't likely dedicate their efforts to our cause.

It's there and will always be there for future use. Maybe thou with some serious study of the canadian consensus patient group even that ME ICC in the next 5 years or so may be behind times when new findings are made (that's if we can get things going forward and be using far better defintions for study).

I dont think anyone who has ME is going to stop pushing towards the direction of the ICC while its relevent even if it may seem to you that many of us are pushing in a different direction right now. (I see it more like walking UP a winding mountain rather then trying to take a much harder maybe impossible path straight up to the goal).
 
The authors of the ICC have asked that the CCC be considered a CFS definition.

Ember have you got a link which specifically says that? Id personally think they still consider many or maybe most who fit the CCC would also would fit the ME ICC defination.

While people arent being taken out of the CCC by having ICC being used (as is currently the case), that means all of the ICC group will be still sitting in the CCC which would make it "mostly" ME still. (this situation would only change if the ICC people got removed from the CCC group and if the ICC says to count the ICC as a CFS defination, they would of been refering to AFTER the ME people had been removed from the group using the ICC definition).

It would make sense thou to call the CCC a CFS defintion IF all the ME people had been removed from that defination by the ICC if it was properly accepted but as it hasnt.. this means the CCC is mostly ME people.

edit.. lol Mark beat me too it, I hadnt seen that he'd asked this question.
 
I see it more like walking UP a winding mountain rather then trying to take a much harder maybe impossible path straight up to the goal).
I wouldn't compare this initiative to walking up a winding mountain, Tania. I think I'd compare it instead to a dead end! Expecting the American government to adopt outmoded Canadian criteria seems bizarre to me. (I say that as a Canadian.) There's something sadly surreal about this initiative. The patients are out of step (again) with the experts.
 
The only possible respect I can see in which there is any benefit to that diagnosis is legal - maintenance of medical insurance, benefits, etc - and I'm very clear that any dismantling of CFS would have to carefully take those concerns into account and ensure that those benefits are maintained.
The boards of the organizations and the individuals who drafted and signed the letter contain plenty of people with relevant medical and industry experience, and plenty of advocacy experience.... Regardless of what the ICC says, I stick with my view that CFS should be dismantled.... I think the letter makes it clear that those considerations must be addressed during the dismantling of CFS.
Can you explain how medical insurance, benefits, etc. will be maintained once the CFS diagnosis is dismantled? I can't imagine DHHS accepting these marching orders:
Include a plan to care for those patients who have received a diagnosis of “CFS” but do not meet the CCC criteria for ME (sic). These individuals should be properly evaluated and diagnosed where possible. If unexplained conditions remain, additional studies will be needed to understand these conditions and establish more appropriate names and definitions. The continued use of the overly broad “CFS” and Fukuda for these patients is not appropriate.
How long will it take to conduct the additional studies needed to understand these conditions and establish more appropriate names and definitions? What will happen to these CFS patients in the interim?

I don't find there to be any medical experts on the boards of these organizations. Dr. Jason may have been consulted, but he's neither a medical nor a policy expert.
 
Thanks: I guess the main ones would be
- that the ICC panel request that CCC now be considered a CFS definition,
- that the ICC panel disagree with the dismantling of CFS
- that the ICC panel don't believe the CCC is good enough to help the existing scientific understanding to be developed into clear and demonstrable biomarkers

(more accurately, you said the last two are inconsistent with the view of the panel, but I don't understand why).
I've had to repeat myself with some of the quotations that I've provided here, Mark.

I quoted the International Consensus Panel earlier in this thread (post #27), indicating that the ICC panel requests that the CCC be considered a CFS definition: “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.”

That statement, published last October, clarified the original ME-ICC recommendation that ME patients should be removed from the CFS criteria. In the same post, I quoted Invest in ME:
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.”
I asked in another post (post #32) whether prematurely dismantling CFS wouldn't be inconsistent with the International Consensus Panel's implementation plan: “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.”

As you know, the CCC is a clinical case definition. The ME-ICC, by contrast, was written by a panel balanced between clinicians and researchers. Dr. Carruthers explained the ICC research rationale during his September 2011 presentation in Ottawa:
While it has always been essential, it has now also become urgent to segregate the subset that we are calling ME more clearly, using the ME International Consensus Criteria, so that researchers can confirm/disconfirm their results using patients who have chronic fatigue of this clearly bio-pathological origin.
The ME-ICC acknowledges its debt to the CCC: “The Canadian Consensus Criteria were used as a starting point, but significant changes were made.” We've discussed in this thread some of those changes, including the replacing of PEM with PENE, along with its 2 consecutive day exercise stress test. “The International Consensus Criteria (Table 1) identify the unique and distinctive characteristic patterns of symptom clusters of ME:”
The primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low threshold of fatigability and symptom flare in response to exertion. This will enable patients to be diagnosed and enrolled in research studies internationally under a case definition that is acceptable to physicians and researchers around the world.
The ME-ICC concludes, “The compulsory critical criteria allow comparable data to be collected in various locations and may assist in developing consistent biomarkers and further insights into the mechanism and aetiology of myalgic encephalomyelitis.”

Dr. Broderick submitted the Panel's “Response to 'A controversial consensus'” in December 2011:
It is precisely the issue of patient cohort heterogeneity...that we hope to address with a more specific criteria and efforts such as this one directed at improving the clinical identification of ME patients specifically. One only has to question why 5 of 15 CFS patients in recent phase II clinical trials of rituximab were unresponsive to treatment to appreciate the need for more specific criteria [3].”
The use of patient sets selected by relevant, well-defined and consistent ICC for ME in research will...advance science, provide greater clarity of understanding and elicit more reproducible scientific results. This will also allow a selection of more homogeneous sets of ME patients, given the current knowledge, which can then be compared with other populations. Whether patients with less severe conditions represent a continuum, faulty diagnosis or different disease entities can only be determined by future studies.
When advances in scientific technology are applied to patients who meet the more specific case definition of the ICC for ME, the current urgent need for identifying and confirming specific biopathological mechanisms and biomarkers will be facilitated, and our improved understanding of the pathophysiology can then be directed towards enhancing treatment efficacy.
Dr. Carruthers' article on the ICC, published in the context of last year's Invest in ME Conference, sounded an optimistic note: “We can finally search for specifically directed remedies. This is the way towards scientific progress after what has been a long delay, indeed a paradigm war- not arguments between results but between opposing assumptions made before beginning observations.”

As a replacement for the CCC, the ICC is intended by its authors to meet an urgent clinical and research need: “We all hope the International Consensus Criteria will improve recognition of Myalgic Encephalomyelitis, promote consistency in diagnosis internationally, and lead to appropriate treatment in a timely fashion.”
 
I agree that the current situation is a bit of a mess, but I also think it is necessary to proceed with caution. CFS is an unsatisfactory title, but ME is worse. The "E" refers to Encephalomyelitis, which is a very specific term that means "swelling of the brain and spinal cord". Has anyone here ever had tests that show this particular symptom? I doubt it. ME is the term that is meaningless.
By coincidence, I have just written a blog post on this very topic...
http://thedamnchronicsituation.blogspot.ie/2013/05/whats-in-name-me-or-cfs.html
 
But saying that the CCC is a 'fatiguing' definition (??) (because the ICC authors now want to call that 'CFS'?) seems a bit much.
You take exception to my having described ME/CFS as a “fatiguing syndrome.” But don't think that my choice of words follows simply from ICC authors' having classified the syndrome as CFS. Look instead at the prominence given to fatigue in the CCC definition itself: (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.

In the ICC, neuroimmune exhaustion is given prominence: (1) PENE, (2) neuorological impairments, (3) immune, gastro-intestinal & genitourinary impairments, and (4) energy metabolism/ion transportation impairments. The ICC represents much more than a change in terminology. It completes a paradigm shift mandating the separation of ME from CFS.

I find it odd that the psychologists, Drs. Jason and Friedberg, support the CCC with its greater emphasis on fatigue, while criticizing the ICC for selecting psychiatric disorders. (Unlike the CCC, the ICC clearly excludes primary psychiatric disorders and somatoform disorder.) The reason that they've given for their criticism is that the ICC includes too many symptoms. But by my count, the ICC requires fewer symptoms than the CCC. I wonder whether the CCC isn't favoured by them instead for the same reasons that the IACFS/ME has called its journal Fatigue.
 
As I've said, I pass that over to medfeb. She's been at CFSAC (and on the way there and back) so that's why you don't have your answer yet. As I've mentioned, there have been physicians and other medical professionals involved in the drafting, as representatives of their organizations, and experienced ME/CFS advocates have signed it, as you can see from the signatories list. I'm assuming your question is asking who was consulted who is not on the list of signatories, and that's what I'm waiting for medfeb to answer.
After two weeks of asking, I have to assume that no answers to my questions about the joint letter will be forthcoming. If I can't get my questions answered about either the process or the content, why should I assume that the early signators to the letter were any better informed? It isn't enough to expect someone else to have asked the questions. And it's undignified for you to be left holding the bag, having to write, “I think that's why the group settled on the CCC.”

The joint letter demands a full and open partnership from DHHS, but the initiative doesn't provide an open partnership itself. It doesn't represent a consensus among patients. Jill McLaughlin presented this dissenting patient view in her testimony to CFSAC. Neither does the initiative represent a coming together of the patients and the experts. It misses a prime opportunity.
 
I find it interesting that the following are authors of both; the CCC and the ICC

Bruce M. Carruthers, MD, CM, FRCP(C)
Kenny L. De Meirleir, MD, PhDNancy G.
Klimas, MDA. C.
Peter Powles, MRACP, FRACP, FRCP(C), ABSM
 
You take exception to my having described ME/CFS as a “fatiguing syndrome.” But don't think that my choice of words follows simply from ICC authors' having classified the syndrome as CFS. Look instead at the prominence given to fatigue in the CCC definition itself: (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.

In the ICC, neuroimmune exhaustion is given prominence: (1) PENE, (2) neuorological impairments, (3) immune, gastro-intestinal & genitourinary impairments, and (4) energy metabolism/ion transportation impairments. The ICC represents much more than a change in terminology. It completes a paradigm shift mandating the separation of ME from CFS.
.

This is what it says for PENE in the ICC

A. Post-Exertional Neuroimmune Exhaustion (PENE penʾ-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:

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. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain
and worsening of other symptoms
3. Post-exertional exhaustion may occur immediately after activity or be
delayed by hours or days.
4.Recovery period is prolonged, usually taking 24 hours 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.

The bolds are mine to point out that even within the PENE characteristics, there is room for physical fatiguing symptoms. That is why I am surprised when proponents of the ME only diagnosis say that ME has nothing to do with fatigue. I agree that it is much more than...but then so is CFS with the CCC criteria.
 
That is why I am surprised when proponents of the ME only diagnosis say that ME has nothing to do with fatigue.
I hope that you're not quoting me as saying that ME has nothing to do with fatigue. I'm not aware of ever having said that. I quoted Dr. Carruthers above in post #88 describing PENE as "chronic fatigue of this clearly bio-pathological origin."
 
Interesting in that I don't feel that the CCC and the ICC are describing two distinct illnesses. I feel that the ICC elaborates on the CCC.
Pointing out overlap between the CCC and ICC panels doesn't prove that the ICC “elaborates on” the CCC. The authors of the ICC themselves explain that the CCC "were used as a starting point, but significant changes were made." I've heard the relationship between the two definitions described as an evolution. The CCC is a transitional definition in what amounts to a paradigm shift.
 
Jill McLaughlin presented this dissenting patient view in her testimony

I was reading Jill's testimony where she states:

ME is a stand alone dx. We do not need two names. ME is a neurological illness based on CNS dysfunction. Fatigue has no more to do with ME than it does with AIDS, MS or cancer.


I think there is a fallacy of equating Chronic Fatigue with the Chronic Fatigue Syndrome criteria of CCC.
 
I think there is a fallacy of equating Chronic Fatigue with the Chronic Fatigue Syndrome criteria of CCC.
Describing the relationship between CFS and CF is difficult at this stage. These two statements by the International Consensus Panel point to that difficulty:

“Whether patients with less severe conditions represent a continuum, faulty diagnosis or different disease entities can only be determined by future studies;”

“As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.”