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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 think I have heard Unger talk about 'ME' as a separate entity, or as a subset of CFS, as if she is open minded to it, but I get the feeling that she is looking for high quality up-to-date empirical research results before she will entertain the idea seriously...

There has been explicit pressure on her to use VO2 Max two-day testing (e.g. at the CFSAC meeting), so perhaps there's a chance she will end up incorporating it into the CDC's research.
Patient groups could take up Dr. Unger's challenge. In November 2011, she wrote, "Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. However, we are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward."

International ME clinicians and researchers advise, “Remove patients who satisfy the ICC from the broader category of CFS.” A cardinal feature of ME (ICC) is PENE, operationalized in the ME Primer by the test-retest cardiopulmonary exercise protocol.
 
Here is a comparison of PEM taken from the CCC and PENE from the ICC

PENE from the ICC

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.

PEM from CCC

1. Post-Exertional Malaise and/or Fatigue: There is an inappropriate
loss of physical and mental stamina
2.rapid muscular and cognitive fatigability,
2.post exertional malaise and/or fatigue and/or pain and
3.a tendency for other associated symptoms within the patient's clus-
ter of symptoms to worsen.
4. There is apathologically slow recovery
period…usually 24 hours or longer.

In my opinion they are almost the same. The PENE version goes into more detail.
They both state that there is physical and cognitive worsening of symptoms. PENE goes more into details as far as the symptoms that could be exacerbated. PEM states that the recovery period is usually 24 hours or longer and PENE goes further in saying that it can be days or weeks.

I don't think that this PEM/PENE issue is what differentiates the CCC from the ICC. The main difference that I see in both criteria is that the ICC does not require the six months of feeling ill in order to get a diagnosis and that it demands a 50% in reduction of previous level of activity. It's this latter that really has the largest impact. Is this just a case of severity? I actually struggle with this definition. What other illness defines it's patient population by the severity of the symptoms? If my migraine headache pain is a 4 on a pain level of 1 to 10, does that mean that it's not a migraine? Furthermore, by it's nature, this illness is very cyclical. I have had periods when I have been bed bound for months and then at other times, I'm able to go out shopping for an hour. Do I suffer from ME part time?
 
In my opinion they are almost the same. The PENE version goes into more detail....

I don't think that this PEM/PENE issue is what differentiates the CCC from the ICC. The main difference that I see in both criteria is that the ICC does not require the six months of feeling ill in order to get a diagnosis and that it demands a 50% in reduction of previous level of activity.
You've left out the introductory statement to the definition of PENE: "This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions." Here's how Dr. Peterson introduced the ICC:
They emphasize post-exertional neuroimmune exhaustion, neurological impairments, immune impairments and problems with energy production and transport impairment. Now to patients none of this makes a whole lot of sense. To physicians it does because it's addressing the pathophysiology. It's addressing why you have the symptoms that you have.
The International Consensus Panel considers 'malaise' to be an inaccurate and inadequate word for the pathological low-threshold fatigability and postexertional symptom flare characteristic of ME:
Postexertional neuroimmune exhaustion (PENE pen′-e)

‘Malaise’– a vague feeling of discomfort or fatigue [41] – is an inaccurate and inadequate word for the pathological low-threshold fatigability and postexertional symptom flare. Pain and fatigue are crucial bioalarm signals that instruct patients to modify what they are doing in order to protect the body and prevent further damage. Postexertional neuroimmune exhaustion is part of the body’s global protection response and is associated with dysfunction in the regulatory balance within and between the nervous, immune and endocrine systems, and cellular metabolism and ion transport [42–46]. The normal activity/rest cycle, which involves performing an activity, becoming fatigued and taking a rest whereby energy is restored, becomes dysfunctional.

Numerous papers document abnormal biological responses to exertion, such as loss of the invigorating effects of exercise [20], decreased pain threshold [47–49], decreased cerebral oxygen and blood volume/flow [50–53], decreased maximum heart rate [54], impaired oxygen delivery to muscles [55], elevated levels of nitric oxide metabolites [56] and worsening of other symptoms [57]. Patients reach the anaerobic threshold and maximal exercise at a much lower oxygen consumption level [58]. Reported prolonged effects of exertion include elevated sensory signalling to the brain [59] that is interpreted as pain and fatigue [29], elevated cytokine activity [60], delay in symptom activation [61] and a recovery period of at least 48 h [57]. When an exercise test was given on two consecutive days, some patients experienced up to a 50% drop in their ability to produce energy on the second evaluation [62]. Both submaximal and self-paced physiologically limited exercise resulted in postexertional malaise [48].
How is PEM operationalized in the CCC?

Fatigue is criterial in the CCC, by the way: "By definition, the patient's activity level is reduced by approximately 50% or more." Notice, by contrast, the descriptions of severity in the ME Primer's operational notes for PENE:
Operational Notes: For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level. Mild (meet criteria, significantly reduced activity level), Moderate (an approximate 50% reduction in pre-illness activity level), severe (mostly housebound), or very severe (mostly bedridden and needs help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects. Recovery time: e.g. Regardless of a patient’s recovery time from reading for ½ hour, it will take much longer to recover from grocery shopping for ½ hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately. Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and still be more active than a sedentary person.
 
This from the CCC - Clinical Case Definition for Medical Practitioners


. PostExertional Malaise and/or Fatigue
Physical or mental exertion often causes debilitating malaise and/or fatigue, generalized
pain, deterioration of cognitive functions, and worsening of other symptoms that may occur
immediately after activity or be delayed. Patients experience rapid muscle fatigue and
lack endurance. These symptoms are suggestive of a pathophysiology which involves
immune system activation, channelopathy with oxidative stress and nitric oxide related
toxicity 10, and/or orthostatic intolerance. Recovery time is inordinately long, usually a day or longer, and exercise may trigger a relapse.

This too addresses the pathophysiology.
 
I'm not sure what point you're making. The CCC were used as a starting point. Dr. Peterson, one of the authors of the CCC, advises clinicians to read the ICC because it emphasizes the presumed pathogenesis underlying the symptoms.


The only reason that I bring up the similarities is because you have voiced your objection to the letter (which is the subject of this thread) calling for the DHHS to start using the CCC criteria. Even though I agree that the ICC is more current and goes into more detail, I don't feel like the difference is so great as to being so upset about using the CCC in the interim.
 
Beth Unger talks about a lot of the issues discussed in this thread, at the latest CFSAC meeting, in this video:

www.youtube.com/watch?v=VJ7VqYJTsWI&feature=share&list=PLrl7E8KABz1FGfzllYcomOoI9agz8-6QL


(She actually says some things that suggests she does have some insight into some of the issues that we've been discussing. She even talks about 'post-exertional relapse' or 'post-exertional exacerbation' possibly being a better description than 'post-exertional malaise'.)
 
The only reason that I bring up the similarities is because you have voiced your objection to the letter (which is the subject of this thread) calling for the DHHS to start using the CCC criteria. Even though I agree that the ICC is more current and goes into more detail, I don't feel like the difference is so great as to being so upset about using the CCC in the interim.
The differences between the CCC and the ICC are significant both for clinical and research purposes, and I'm not sure why you would want to trivialise them. But the letter to DHHS did more than demand the use of the CCC. It also demanded that the CCC be called ME and that CFS be collapsed as a diagnosis. And it used ICC sources in support of this agenda.
 
The differences between the CCC and the ICC are significant both for clinical and research purposes, and I'm not sure why you would want to trivialise them. But the letter to DHHS did more than demand the use of the CCC. It also demanded that the CCC be called ME and that CFS collapsed as a diagnosis, and it used ICC sources in support of this agenda.

Ember, you were more than happy with the CCC once, and in fact you were promoting it as the best 'ME' diagnostic criteria to use. Sure, times have moved on, and the ICC has now been developed, but it's interesting that you are now adamantly promoting the ICC, and dismissing the CCC as a 'CFS' criteria. Were you wrong in the past, when you were promoting the CCC as an 'ME' criteria? What's changed about 'ME' that the CCC once described the illness, but no longer describes it?
 
Ember, you were more than happy with the CCC once, and in fact you were heavily and inflexibly promoting it as the best 'ME' diagnostic criteria to use. Sure, times have moved on, and the ICC has now been developed, but it's interesting that you are now adamantly promoting the ICC, and dismissing the CCC as a 'CFS' criteria. Were you wrong in the past, when you were heavily promoting the CCC as an 'ME' criteria? What's changed about 'ME' that the CCC once described the illness, but no longer describes it?
Please, Bob, if you're going to claim that I was “heavily and inflexibly” promoting the CCC as the best 'ME' diagnosis to use, then you must quote me. Otherwise I'll surely take offence at your comment. I believe that when I preferred the CCC to other definitions, it was then the best that we had.

Was I wrong in the past when I described the CCC as an 'ME' criteria? Yes and no. I was following the best guidance that we had at the time. What has changed? The ME Primer was published last October with its recommendation that patients who fulfill the ICC should be removed from the CCC and that those who do not should remain in the more encompassing CFS classification.

A year ago, we needed clarification concerning the relationship between the ICC and other case definitions, particularly Fukuda. I took steps to get that clarification. Having consulted with the experts, I accept their consensus statement. Immediately after the ME Primer was published, I posted this comment:
It avoids confusion for the ICC panel to leave the ME/CFS label behind now. Dr. Lipkin used an ME/CFS (CCC) cohort, but the multicenter study adopts the CFS/ME label anyway. It refers to the “2003 Canadian consensus criteria for ME/CFS” at a couple of points, but also refers to the “2003 Canadian consensus CFS/ME criteria (sic).” Its subjects are called CFS patients.
It doesn't serve us to ignore expert guidance.
 
I don't remember preferring the CCC to the ICC. Can you please clarify your remark?

I didn't say that you preferred the CCC to the ICC. You used to promote the CCC as an 'ME' criteria, along with providing evidence as to why it was not a 'CFS' criteria. I remember you being forthright about that. Now you say that the CCC is absolutely a 'CFS' criteria. So your position has reversed. Does this mean that you view 'ME' as a different disease than you did previously?
 
I didn't say that you preferred the CCC to the ICC.
If you're referring to a time before the ICC were published, then your reference predates the publication of Dr. Carruthers' presentation to the Ottawa conference by a year. Can you provide any quotation?

If you're not saying that I preferred the CCC to the ICC, then I don't know how to interpret your comment, “You were promoting [the CCC] as the best 'ME' diagnostic criteria to use.”

In response to your question about what has changed, I've already indicated above that the International Consensus Panel recommended last October that patients who fulfill ICC should be removed from the CCC; those who do not would remain in the more encompassing CFS classification. Once emptied of ME patients, the CCC defines CFS.
 
If you're not saying that I preferred the CCC to the ICC, then I don't know how to interpret your comment, “You were promoting [the CCC] as the best 'ME' diagnostic criteria to use.”

Maybe you didn't promote it as the 'best' ME criteria to use, but you did promote it as an 'ME' diagnostic criteria, and not a 'CFS' criteria.

In response to your question about what has changed, I've already indicated above that the International Consensus Panel recommended last October that patients who fulfill ICC should be removed from the CCC; those who do not would remain in the more encompassing CFS classification. Once emptied of ME patients, the CCC defines CFS.

I'd like to know what new evidence there is, apart from the consensus document, that indicates that the CCC no longer diagnoses for 'ME', but now diagnoses for 'CFS'? (e.g. why has the nature of 'ME' changed over time? Has certain new evidence emerged, or have the goal posts moved arbitrarily?)

Interestingly, you provided research evidence to support your claim that the CCC separates ME patients from CFS patients (see below.) Has this research been superseded with new evidence to the contrary?

Dr. Carruthers writes in last month's Journal of Iime, “The results of Jason et al’s studies have confirmed that the Canadian Definition of ME/CFS had clearly separated cases who have ME...from those who have CFS...."
 
If you're referring to a time before the ICC were published, then your reference predates the publication of Dr. Carruthers' presentation to the Ottawa conference by a year. Can you provide any quotation?

I don't know if you used to promote the CCC before the ICC were published. I had assumed that was the case, but perhaps it was only after the ICC were published.

Below, I've included some of your old posts (posted after the ICC had been published) in which you promote the CCC as an 'ME' diagnostic criteria, exclusionary of 'CFS' patients...

ME/CFS (CCC) has always been an ME diagnosis, never a CFS diagnosis.

Both the ICC and the CCC are ME definitions.

The NICE Guidelines define CFS. The ICC and the CCC are both ME definitions.

In much of this thread, reference to the “CCC CFS criteria” has gone unchallenged. But as you know, it would seem more accurate to characterize the CCC as ME criteria. Dr. Carruthers writes in last month's Journal of Iime, “The results of Jason et al’s studies have confirmed that the Canadian Definition of ME/CFS had clearly separated cases who have ME...from those who have CFS....”

...it would seem more accurate to characterize the CCC as ME criteria. Dr. Carruthers writes in last month's Journal of Iime, “The results of Jason et al’s studies have confirmed that the Canadian Definition of ME/CFS had clearly separated cases who have ME...from those who have CFS....” In an interview with Cort, Marj van de Sande has explained that the term 'CFS' in ME/CFS was used solely for its familiarity in the US:
The draft of the Canadian Consensus Criteria (CCC) used the name “myalgic encephalomyelitis” (ME). However, we changed it to ME/CFS because a member of the panel felt that some American patients were not familiar with the name ‘ME’. At the time we did the CCC, we didn’t have plans to do another definition in the future. In retrospect, it did serve as a good transition period.
 
Firestormm, for your interest, in case you haven't seen it before, a study of Post Exertional Malaise, with 22 patients and 22 controls...

Pain inhibition and postexertional malaise in myalgic encephalomyelitis⁄chronic fatigue syndrome: An experimental study.
Van Oosterwijck J, Nijs J, Meeus M, Lefever I, Huybrechts L, Lambrecht L, Paul L.
J Intern Med. 2010 Sep;268(3):265-78.
doi: 10.1111/j.1365-2796.2010.02228.x.
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2010.02228.x/pdf

Results.
In patients with ME/CFS, pain thresholds decreased following both types of exercise, whereas they increased in healthy subjects. This was accompanied by a worsening of the ME/CFS symptom complex post-exercise.

Conclusions.
These observations indicate the presence of abnormal central pain processing during exercise in patients with ME/CFS and demonstrate that both submaximal exercise and self-paced, physiologically limited exercise trigger postexertional malaise in these patients.



And a gene expression study with 48 patients with CFS only, or CFS with comorbid FM, 18 patients with FM that did not meet criteria for CFS, and 49 healthy controls...

Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome.
Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC.
J Intern Med. 2012 Jan;271(1):64-81.
doi: 10.1111/j.1365-2796.2011.02405.x. Epub 2011 Jul 13.
http://www.ncbi.nlm.nih.gov/pubmed/21615807

Conclusions.
At least two subgroups of patients with CFS can be identified by gene expression changes following exercise. The larger subgroup showed increases in mRNA for sensory and adrenergic receptors and a cytokine. The smaller subgroup contained most of the patients with CFS with orthostatic intolerance, showed no postexercise increases in any gene and was defined by decreases in mRNA for α-2A. FM-only patients can be identified by baseline increases in three genes. Postexercise increases for four genes meet published criteria as an objective biomarker for CFS and could be useful in guiding treatment selection for different subgroups.



More research needs to be done, but there is research into Post Exertional Malaise.