• Phoenix Rising needs funds to operate: please consider donating to support PR

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

View the Post on the Blog



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?


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.




Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. You can even donate significant sums, at no cost to yourself, as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

View the Post on the Blog
 

Comments

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

"Maes et al. performed pattern recognition methods and concluded that CFS patients (according to Fukuda's criteria) should be divided into those with CFS or ME, on the basis that people with ME display a worsening of their illness following increases in physical or cognitive activity."
 
The “characteristic” difference between the CCC (ME/CFS) and the ICC (ME) definitions probably lies in the cardinal feature of the disease. Valentijn posted here the difference between PEM (ME/CFS) and PENE (ME) in reported responses to exercise.
I think the PEM/PENE differences between the CCC and ICC are pretty minimal. Basically the ICC is more recent so had more research-based abnormalities to list associated with it versus normal response to exertion. But the same research is there regardless of whether the CCC or ICC is used, so long as PEM/PENE is being prominently featured.
 
I think the PEM/PENE differences between the CCC and ICC are pretty minimal.
As a fatigue state, PEM seems to be implicated in a number of diseases, whereas PENE is defined as a neuroimmune response. The ICC authors note:
Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day. The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion and with reduced ability to undertake the same activity within the same or several days.
The ICC symptom clusters focus on PENE: (1) PENE, (2) neuorological impairments, (3) immune, gastro-intestinal & genitourinary impairments, and (4) energy metabolism/ion transportation impairments. The CCC clusters focus on fatigue: (1) fatigue, (2) post-exertional malaise and/or fatigue, (3) sleep dysfunction, (4) pain, (5) neurological/cognitive manifestations, (6) autonomic / neuroendocrine / immune manifestations, and (7) at least six months of illness.

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

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

Exclusions (CCC): Addison's disease, Cushing's Syndrome, hypothyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes melitus, and cancer...treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse.
 
As a fatigue state, PEM seems to be implicated in a number of diseases, whereas PENE is defined as a neuroimmune response.
PEM is not a "fatigue state". There is a difference between fatigue and malaise.

But even in terms of 'fatigue', I'm not sure if there are any other diseases which feature post-exertional fatigue in the same way as ME does. i.e. prolonged severe fatigue (assuming that 'fatigue' is a feature of 'malaise', for the sake of discussion) as a delayed reaction to minimal exertion, which is not relieved after normal rest.
 
PEM is not a "fatigue state". There is a difference between fatigue and malaise.
Can you clarify further? The second cluster in the CCC is "Post-Exertional Malaise and/or Fatigue." When I say that PEM "seems to be" implicated in a number of diseases, I'm simply responding to numerous comments that I've read on this forum. I haven't heard it claimed that PENE, the cardinal feature of ME, features in the same way in other diseases.

If it helps, here are the definitions of PENE (ICC) and PEM and/or Fatigue (CCC):
A. Postexertional neuroimmune exhaustion (PENE pen-e): Compulsory

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

1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation: e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24h or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patients cluster of symptoms to worsen. There is a pathologically slow recovery period - usually 24 hours or longer.
 
Ember. Thank you for the info re the CCC. I didn't realise that a patient could have post-exertional malaise or fatigue, for the CCC. I thought the CCC required post-exertional 'malaise'. So thank you for highlighting that.

I wonder how many others haven't noticed that.

Bob said:
PEM is not a "fatigue state". There is a difference between fatigue and malaise.
Can you clarify further?​
It's an interesting issue to explore...
I've always considered there to be a subtle qualitative difference between fatigue and malaise.
And I've always considered 'fatigue' to be a feature of 'malaise'.
For 'malaise' I think of flu.
For 'fatigue' I think of how it feels to be exhausted from exercise.
Thinking about it now, I wonder if it is possible to easily distinguish the two, if at all.
Perhaps there is a subtle difference.

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

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

When I say that PEM "seems to be" implicated in a number of diseases, I'm simply responding to numerous comments that I've read on this forum. I haven't heard it claimed that PENE features in other diseases.
I've yet to hear of any disease, or illness, which features PEM or post-exertional fatigue in the same way that CFS/ME does. I think it is unique to CFS/ME. (i.e. prolonged severe fatigue as a delayed reaction to minimal exertion, which is not relieved after normal rest.)
 
I've yet to hear of any disease, or illness, which features PEM or post-exertional fatigue in the same way that CFS/ME does. I've often asked.
When I had cancer, I was excluded under the CCC. I wouldn't have been excluded under the ICC.
 
Bob said:
I've yet to hear of any disease, or illness, which features PEM or post-exertional fatigue in the same way that CFS/ME does. I've often asked.
When I had cancer, I was excluded under the CCC. I wouldn't have been excluded under the ICC.
And I've often heard of people with cancer being wrongly diagnosed with CFS/ME.
Cancer can feature severe fatigue, but my argument is that the fatigue, or malaise, that cancer patients experience, is qualitatively different to the PEM that CFS/ME patients experience. I believe that the two are distinguishable, and I've never heard any experts argue that they are indistinguishable.
If the CCC is not able to distinguish between cancer patients and CFS/ME patients, then perhaps it's not adequate.
(BTW, I've never argued that the CCC are superior to the ICC.)
 
If the CCC is not able to distinguish between cancer patients and CFS/ME patients, then perhaps it's not adequate.
No, the CCC isn't adequately to distinguish ME/CFS from cancer. As an aside, I considered the likelihood that I was immuno-compromised in deciding whether or not to undergo radiation. I walked out when my GP told me not to think like that because ME/CFS is a syndrome, in any case, and not a disease. That scene wouldn't have happened had the ICC been published at the time.
 
As an aside, I considered the likelihood that I was immuno-compromised in deciding whether or not to undergo radiation. I walked out when my GP told me not to think like that because ME/CFS is a syndrome, in any case, and not a disease.
Sorry to hear that you had to go through that sort of nonsense, Ember.
I know that my GP would think similarly.
 
I know that my GP would think similarly.
GPs adhere to case definitions, and these do have consequences. I'm grateful that Dr. Carruthers accompanied me through that nightmare. I wonder how many such stories it takes to inspire change.
 
The primary difference between CCC and ICC in this context is not based on the definitions, but on the politics.
My questions about process remain unanswered, so unfortunately I'm left to speculate. The authors of the ICC have asked that a CCC diagnosis be left in the more encompassing CFS classification. Is the broadening of the ME designation in this initiative, so as to denote CCC-defined ME/CFS, supported by the IACFS/ME? I ask because of a rumour to similar effect from a year ago:
PENE

What it is:
The term PENE didn’t exit prior to it’s début in the ICC ME publication. It is an attempt to create a very unique type of fatigue category and is being put forward as the defining symptom for ME. There are rumors that the IACFSME group is negotiation with the CDC for the creation of the ME category and a move of a set of patients to this designation under the coding of G93.3. According to the rumors the CDC wants to keep the CFS designation, the Reeves Empirical definition and the data sets from Wichita and Georgia. However, they have agreed that those persons who have a viral onset can be moved to the new category. In an effort to keep the ME category as broad as possible the IACFSME group wrote the definition of PENE to be somewhat open and a little vague in hopes of being able to catch more patients into the ME definition than the more narrow definition currently being demanded by the CDC. However all of the above is rumor and supposition and has no supporting evidence (italics added).
I notice that the IACFS/ME hasn't yet included the ME-ICC in its list of case definitions.
 
My questions about process remain unanswered, so unfortunately I'm left to speculate.
I answered your questions as best I can in #20 above. Medfeb's been busy the last few days but I expect she'll say more when she's able.

As I described in #20, the process of drafting the letter involved many representatives of ME/CFS patient organizations and individual patient advocates. Now it's been sent to the DHHS and we're having a more public discussion about it. We'll see what emerges during that discussion; I expect this campaign to continue and evolve as the issues are opened up and discussed more widely.

The merits of CCC and ICC for the purposes of this letter were discussed while the letter was being drafted, and it's no surprise to me that this question is a focus for the discussion now. I hope that some of those who were involved in those discussions will explain here in more detail why the letter focused on the CCC, but the rationale has already been clearly summarised in the article:


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.
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.
That seems to me a strong argument that the CCC is a far more realistic objective and I think it's pretty clear from the above that those who debated these issues simply preferred to campaign for what they consider to be realistic objectives. Since the ICC has not yet been proven by practical use, it's harder to argue for its adoption at this point in time.

And since the ICC is itself a (young) evolution of the CCC, if the CCC were adopted in the way that the letter argues, in time there would eventually be further evolution of the definition, likely from CCC to ICC or from CCC to some other new and similar case definition. It seems to me more practical, if one does actually want to achieve change, to get behind a broad campaign for 99% of one's objectives, and with a very good prospect of achieving the remaining 1% in the fullness of time, rather than opposing that campaign and arguing about the 1%.

So from my point of view, it's fairly clear that the difference between the current situation of a mixed population defined by definitions like Fukuda and Oxford, and the position argued for in the letter, is a much, much bigger difference than the technical difference between ICC and CCC. This would be a big step forward, and to oppose the letter on the basis that it should have argued for ICC rather than CCC seems like a case of "the best is the enemy of the good". As wikipedia puts it: "insisting on perfection often results in no improvement at all". Or as Winston Churchill put it: The maxim "Nothing but perfection" may be spelled "Paralysis”.
 
Mark As a perfectionist, I have the opinion that demanding perfection often leads to a logical trap and inaction, just as you quoted from Winston Churchill. Perfectionism often goes with a rational choice, and the best choice is not often the most useful. When criteria about how useful a choice may be are used, often the best choice becomes impractical, while a lesser choice becomes highly desirable. I think thats the the issue here: long term the CCC is a better initial choice unless things change. Things will indeed change in time, and at that point the ICC might be much more easily adopted. How hard will it be to convince someone to accept ICC if CCC is already adopted as the standard? Not hard at all is my guess.
 
I don't ever expect to see the perfect advocacy letter that accurately expresses all my opinions and that I agree 100% with - I'm happy to sign up to something that is 70% or 80% there.

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

We've all seen how things stagnant when it comes to ME/CFS so hence we need to keep progress moving forward. As long as its doing so, we are getting somewhere.
 
What is the characteristic difference between the CCC - CFS definition and the ICC-ME definition?
The ICC-ME definition for one.. a person needs 2-3 more symptoms then the CCC-CFS definition to fit it fully. There was also some other difference too but sorry I forgot now what.
 
I answered your questions as best I can in #20 above. Medfeb's been busy the last few days but I expect she'll say more when she's able.
My specific question above was about the broadening of the ME designation by this initiative through its use of the term ME to denote CCC-defined ME/CFS. That move runs counter to the direction set by the ICC authors. You mention a future partnership with the experts who developed the ME-ICC and the CCC, and the joint letter states that “key stakeholders – ME patients and ME experts -- must be engaged in a full and open partnership to plan for and ensure the implementation of this change.”

I accept that Phoenix Rising entered the process partway through, and I've assumed that you can't answer any question about the early decisions. I've asked whether any medical or policy experts were consulted. The ICC authors and Dr. Jason are frequently cited. Was Dr. Jason afforded the courtesy of reviewing the joint letter before it was sent? The lead authors of the CCC and the ICC apparently were not.