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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.




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.

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

I do not recall either. It would be difficult to estimate without research. CCC prevalence is about half that of Fukuda.

Perhaps it would be halved again? I am rusty right now on CCC vs ICC.
 
The ICC lists 5 characteristics of PENE, which I assume are all compulsory (?), therefore making the ICC significantly stricter in that regard.
You've probably already read these definitions of PENE (ICC) and of 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.
 
Mark, would you please ask Mary to remove Dr. Carrruther's name from her June 6 message to patients, caregivers and advocates. She hasn't obtained his permission to use his name as she has done in her campaign.
The quote you are referring to here is as follows:


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.

I fail to see why you think it is necessary or appropriate to obtain somebody's permission to use their name when quoting something they said on public record, but it clearly isn't necessary or appropriate to do so, so I won't waste Mary's time by writing to her about that.

I'll repeat my quotation of Voltaire (without his permission): "The best is the enemy of the good". And if you still prefer the continued use of Oxford, Fukuda and "Chronic Fatigue Syndrome" to the Canadian Consensus Criteria, we'll have to agree to differ on that.
 
I fail to see why you think it is necessary or appropriate to obtain somebody's permission to use their name when quoting something they said on public record, but it clearly isn't necessary or appropriate to do so, so I won't waste Mary's time by writing to her about that....

And if you still prefer the continued use of Oxford, Fukuda and "Chronic Fatigue Syndrome" to the Canadian Consensus Criteria, we'll have to agree to differ on that.
Then I will contact Mary myself and hope that she has the grace to understand that her use of Dr. Carruthers' name to support the adoption of the Canadian Consensus Criteria was inappropriate. I'm sorry that you've chosen to view consultation with ME experts as a waste of advocates' time.

Unfortunately, you omitted in your response the context of Mary's statement:
To that end, a group of patient organizations and advocates have submitted the letter at this link (http://bit.ly/18hDBE4) asking DHHS to adopt the Canadian Consensus Criteria, to stop using the term “CFS” and the non-specific definitions like Oxford and Fukuda and to fully engage ME patients and experts in the planning and execution of this transition (emphasis added).
You yourself have raised the concern about misrepresenting ICC authors.

By the way, please don't take it upon yourself to state my preferences concerning case definitions. I've had to request of you before that you do me the courtesy of asking rather than assuming that you know my motivation. I've expected better from a moderator.
 
You yourself have raised the concern about misrepresenting ICC authors.
That's an impressive spin on what I said Ember, and a misrepresentation of what I said. The concern I have raised is that you may be misrepresenting the ICC authors, just as you misrepresented the views of Invest in ME, as I pointed out above.


By the way, please don't take it upon yourself to state my preferences concerning case definitions. I've had to request of you before that you do me the courtesy of asking rather than assuming that you know my motivation. I've expected better from a moderator.
You are continuing to oppose a call to move from Fukuda and Oxford to CCC. My comment above concerned your actions rather than your motivations: if you campaign against a change from the status quo in a positive direction, you are in practice supporting the status quo, whether you realise that or not.
 
Then I will contact Mary myself and hope that she has the grace to understand that her use of Dr. Carruthers' name to support the adoption of the Canadian Consensus Criteria was inappropriate.
I'm confident that Mary, and most readers, will understand that quoting Carruthers within a document calling for adoption of the CCC is not "inappropriate". Irrespective of what Carruthers' view of the letter itself may be, it's quite appropriate to quote something he said in support of the argument. One could quite reasonably quote something Wessely, or anyone else, may have said, in support of one's argument, without requiring that the person quoted agreed with the whole of that argument.

I'm sorry that you've chosen to view consultation with ME experts as a waste of advocates' time.
That's another complete misrepresentation of what I wrote. Your whole argument in this thread seems to rest on your supposed representation of the views of the authors of the ICC, but I see no reason to believe you are understanding or representing the views of those experts any better than you are understanding or representing mine.
 
The concern I have raised is that you may be misrepresenting the ICC authors, just as you misrepresented the views of Invest in ME, as I pointed out above.
I am not aware of having misrepresented the views of Invest in ME. I asked you earlier to quote me exactly if you are making any such claim. I stated in post #27 that I preferred the example set by Invest in ME through some of its statements. I quoted those statements accurately. The fact that you have quoted statements that they have subsequently made in no way proves that I was misrepresented their views.
You are continuing to oppose a call to move from Fukuda and Oxford to CCC. My comment above concerned your actions rather than your motivations: if you campaign against a change from the status quo in a positive direction, you are in practice supporting the status quo, whether you realise that or not.
Unfortunately, your comment related to my motivation. You wrote, “And if you still prefer the continued use of Oxford, Fukuda and 'Chronic Fatigue Syndrome' to the Canadian Consensus Criteria, we'll have to agree to differ on that.” I have not declared any such motivation or preference. I have supported the ICC. The ICC authors themselves don't support the status quo.
I'm confident that Mary, and most readers, will understand that quoting Carruthers within a document calling for adoption of the CCC is not "inappropriate". Irrespective of what Carruthers' view of the letter itself may be, it's quite appropriate to quote something he said in support of the argument. One could quite reasonably quote something Wessely, or anyone else, may have said, in support of one's argument, without requiring that the person quoted agreed with the whole of that argument.
I would have hoped that our ME experts wouldn't be quoted out of context. The quotation attributed to Dr. Carruthers is taken from the ME Primer. In context, that statement by the International Consensus Panel is part of the rationale for using the ICC in ME research.
Your whole argument in this thread seems to rest on your supposed representation of the views of the authors of the ICC, but I see no reason to believe you are understanding or representing the views of those experts any better than you are understanding or representing mine.
You have accused me of appealing to authority and have asked me to provide ICC references. I have provided those references repeatedly. If consultation with ME experts isn't a waste of your time, when do you plan to consult?

As an aside, the letter that Phoenix Rising signed to DHHS requested the adoption of the Canadian Consensus Criteria. The misrepresentation of that definition in Table 1 should be corrected.
 
I am not aware of having misrepresented the views of Invest in ME. I asked you earlier to quote me exactly if you are making any such claim. I stated in post #27 that I preferred the example set by Invest in ME through some of its statements. I quoted those statements accurately. The fact that you have quoted statements that they have subsequently made in no way proves that I was misrepresented their views.
I believe you have, in effect, either misrepresented or misunderstood the views of Invest in ME and of the ICC authors in respect of the letter to the DHHS, because you have quoted from those sources in support of your argument against the letter and against the CCC - indeed, those quotes seem to be the only basis for everything you are saying. I think this pattern is very well illustrated by the Invest in ME quotes: you quoted with approval the following from Invest in ME:

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

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

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

I then pointed out that Invest in ME state in their recently-published 2013 conference journal:

So we need...to adopt the latest ICC or CCC criteria for ME - for research and for diagnosis
...
"Invest in ME support the use of either the so called Canadian Consensus Criteria (CCC) or the later version of these guidelines the International Consensus Criteria (ICC)

Now the point here is not that your citation of Invest in ME was inaccurate - I don't think it was inaccurate (although there was no link on it so I can't check it). The point is that - like the authors of the letter to the DHHS - Invest in ME, quite sensibly, do not see any contradiction between 'fully supporting' the ICC and arguing for the adoption of either the CCC or ICC. And that is what is really at issue here: the letter to the DHHS (which is itself a consensus document produced by a large number of individuals and organizations) calls for the adoption of the CCC, and there is no contradiction in signing such a letter even if one prefers the ICC. Invest in ME clearly don't see any contradiction there, and I seriously doubt that the authors of the CCC and ICC see a contradiction there, but your argument seems to be based solely on quotes from the ICC which are presented as if the authors of that document would oppose this letter to the DHHS, and I just don't think that follows.

I've tried to use the analogy of Windows operating systems. To me, it's rather like arguing to an organization that is still using Windows 3.1 (Fukuda) or MS-DOS 1.0 (Oxford) that they should upgrade to Windows 7 (CCC) or Windows 8 (ICC). Either would be a significant improvement. There are arguments for and against Windows 7 vs Windows 8 - Windows 8 may be a more forward-looking choice, but it's also less proven and it may be more realistic to migrate to Windows 7 first for a variety of reasons. In our context, there is clearly a very strong basis for a broad consensus in calling for the CCC: the organizations and individuals listed on the letter have all agreed to that, and the CFSAC has also called for the CCC to be used as a basis for a definition workshop. With such momentum behind the campaign to advocate for the CCC, opposing that momentum on the basis that one would prefer the ICC seems to me an extremely misguided strategy, which runs the risk of undermining the push for the CCC (and eventually, perhaps, the ICC) and ending up stuck with Fukuda.

Unfortunately, your comment related to my motivation. You wrote, “And if you still prefer the continued use of Oxford, Fukuda and 'Chronic Fatigue Syndrome' to the Canadian Consensus Criteria, we'll have to agree to differ on that.” I have not declared any such motivation or preference. I have supported the ICC. The ICC authors themselves don't support the status quo.
Whereas you say my comment related to your motivation, as you rightly say what I actually said was that you 'prefer' the continuation of the status quo to the CCC in the line you are arguing. That doesn't say anything about your motivation; it just highlights the preference you have expressed through your argument against signing the letter. I confess I am at a loss as to guessing at your motivation in opposing the letter to the DHHS, and I certainly don't make any assumptions as to whether your motivation is a desire to move to the ICC, a desire to stick to a simple argument in favour of the latest (ICC) definition without considering the practical implications in campaigning, or a desire to stick with Fukuda, or something else; any of those guesses as to your motivation would make good sense but there's no point in me trying to guess at that. What I can say, though, is that in your argument on this thread, you are preferring the status quo to the call for adoption of the CCC, since you are not supporting that call and I don't see anything else on the table.

The bottom line for me here is this: There is an opportunity here to push for the CCC, and to me, that would be a step forward, an improvement on the use of Fukuda. If you don't support that effort, or oppose it, you are not making the adoption of the ICC more likely, you are making the argument for adoption of the CCC weaker and making it easier for the DHHS to stick with Fukuda.

I would have hoped that our ME experts wouldn't be quoted out of context. The quotation attributed to Dr. Carruthers is taken from the ME Primer. In context, that statement by the International Consensus Panel is part of the rationale for using the ICC in ME research.
Bob has pointed out in #125 that your argument here is 'over-interpreting' things. There's really no need for you to set the ICC and the CCC against each other in this way, and no need to argue that a quote from the ICC shouldn't be used as part of an argument in favor of the CCC. There's no misrepresentation or quoting 'out of context' in the quote of Carruthers in the letter - the source is clearly stated and the point which he made there is just as applicable to the case for moving to the CCC.


You have accused me of appealing to authority and have asked me to provide ICC references. I have provided those references repeatedly.
You've provided quotes from the ICC - and that (in my view illogical) appeal to authority appears to me to be the totality of your argument - but as I and others have pointed out, and as I've tried to explain in this post, those quotes do not mean that their authors would oppose this campaign, and it's over-interpreting those words to see it that way. What you're doing is a bit like arguing that Microsoft would always oppose anyone trying to sell Windows 7 because they should use Windows 8 instead - and citing Windows 8 advertising material to claim that by trying to sell Windows 7 somebody is being anti-Microsoft. I'm sure Microsoft would prefer everybody to buy Windows 8, but not everybody can be persuaded to do so, and they are happy to keep on selling Windows 7 as well. They understand that Windows 7 users are fairly likely to migrate to Windows 8, or 9, eventually.

If consultation with ME experts isn't a waste of your time, when do you plan to consult?
The letter has already been sent, so the consultation period on that is over. The petition is already up, for people to sign, or not, as they prefer. The consultation period was extensive and included both representatives of all the organizations and the individuals who signed it, and I do consider that group to contain a number of people who are experts in the subject. They came to a consensus conclusion - the argument that has the widest support amongst the organizations they represent - and yes, some of them may have compromised on details along the way, because a consensus discussion by definition requires flexibility. If one is not prepared to be flexible, then co-operation and consensus are impossible, and so are broad-based campaigns (and only broad-based campaigns have a realistic prospect of achieving results).

I have mentioned that I plan to contact some of the ICC authors; it would be good to get their view on the letter and on other matters too, but that's not really going to be a 'consultation' since the letter has already been sent. I'd be interested in their take on all this - my guess is that they would be supportive even if they prefer the ICC but it would be good to explore their views on it - and I'd be very interested to see interviews with them anyway, as I'm sure our members would be also, so it's something I will try to get round to when I can find the time.

As an aside, the letter that Phoenix Rising signed to DHHS requested the adoption of the Canadian Consensus Criteria. The misrepresentation of that definition in Table 1 should be corrected.
I've looked again at Table 1 and can't see any misrepresentation of the CCC, perhaps you could be more specific?
 
Apparently, Mark, you won't consult with the ME experts, but you insist on using them anyway in the campaign. Your response gives me little confidence that you intend to read with comprehension anything that I write.

First, to your personal comments. You claim that I've misrepresented Invest in ME. Please don't make that claim again. Here is the context in which I quoted Invest in ME:
The letter describes the CCC as a definition 'that can readily be further evolved in partnership with ME experts as additional data, knowledge and experience is gained, and as the definition is further operationalized and biomarkers are validated.' A decade in, this initiative doesn't engage that evolution and partnership.

I prefer the example set by Invest in ME...
I then quoted the most up-to-date statements by Invest in ME in support of engaging a partnership with ME experts.

You take it upon yourself to discuss my motivation (and/or preference) and claim bewilderment. Earlier, when you asked me to clarify where I was “coming from,” I responded and explained why I take this initiative to be misguided. Consider now the rules of the forum, and stop your personal line of attack.

You write that “there's no contradiction in signing [this] letter even if one prefers the ICC.” The implementation plan set out by the International Consensus Panel explains the contradiction.

Mary has incorrectly attributed her quotation to Dr. Carruthers, and she's taken the statement out of context. I wonder why DHHS should engage ME patients and ME experts "in a full and open partnership to plan for and ensure implementation of this change” when the patients neither respect nor consult with the experts themselves. I find it troubling to hear the consensus statements by ME experts likened to Microsoft advertising material.

The CCC requirements and exclusions have already been discussed in this thread.
 
Mark and Medfeb you have failed to answer my question!

Hi Medfeb or Mark, there seems to be a feeling that there was not enough consultation with medical experts about this letter. Medfeb you have said

the letter was in the works for about 6 months with numerous discussions across a number of organizations and individuals that included a few doctors and a number of long term advocates on how to frame the discussion and on what recommendations to make.​
Could you please provide the names of the few doctors, as this may help to provide some medical legitamacy to the proposal.

Thank you
 
Seeing as I got involved earlier, and I discussed Ember's comment regarding IiME's position, I went back to look at Ember's original reference to Invest in ME, which appears to be in post #32:
http://forums.phoenixrising.me/inde...case-definitions-now.23217/page-2#post-355796

Ember, as you say, you haven't misrepresented Invest in ME, but based on your quote, I don't believe that you can use them to support your case, and perhaps it was unhelpful to mention them?
 
Ember
You sent me a PM that said
Would you please remove Dr. Carrruther's name from your June 6 message to patients, caregivers and advocates. You haven't obtained his permission to use his name as you have done in your campaign.

The quotation that you've used is taken from the ME primer. In context, that statement by the International Consensus Panel is part of the rationale for using the ICC in ME research.

Thank you for correcting me that it was the primer, not the ME-ICC as was stated. I will correct that.

The text and quote that you are referring to is:
Exactly what disease are we talking about here?
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.

My reading of Dr. Carruthers particular quote and of much of the primer text is that Carruthers et al are talking about the handling of the disease and explictly criticizing the fact that "CFS" has been studied as an umbrella of unrelated fatiguing illnesses, which they refer to it as a 'web of confusion'. Those are the same points being made in the June 6 document and the letter sent to DHHS - we cant study ME with varied criteria that don't require the patients to have any of the hallmark criteria of the disease. And Dr. Carruthers quote is very germaine to that argument. I think we all agree that we are in a mess specifically because of the diverse definitions under the one label "CFS".

Regarding getting his permission to use the quote - the material is available publicly and you have quoted him extensively also. I do not believe that either of us needs to get his permission to quote something that is publicly available. On the other hand, I have had private conversations on the definition issue but because they are private, I can not share those comments without the permission of the other person. If I get permission, I will share them.

Beyond your PM, I have a question for you.

Truly answering the question of what disease we are talking about is going to take additional study to identify subsets and get biomarkers validated/agreed to. But if we keep lumping all kinds of patients together, calling them by the same label and then trying to study what the subsets are using just patient reported outcomes or 6 minute walk tests, then we wont get anywhere.

I understand that you would like to see the ME-ICC and the ME-ICC primer in use. But we know where the CDC stands and what the current medical education is like with one-size-fits-all recommendations for all "CFS" and even 'CFS-like' illnesses. We know that this current state of confusion is hurting many patients in a variety of ways. And we also know that the ME-ICC has not been used in studies yet. We aren't going to get to our goal in one big jump.

So what specific steps would you advocate to move the ball down the field in a way that might be accepted by the government and that will provide an interim step that starts to provide some protection for patients while more study is done to reach the goal? Or alternatively, would you say that we need to wait for more study on i.e. biomarkers and subsets? Or something else?.
 
Ember, as you say, you haven't misrepresented Invest in ME, but based on your quote, I don't believe that you can use them to support your case, and perhaps it was unhelpful to mention them?
Thanks, Bob. If it anyone wants me to say that I like a subsequent statement by Invest in ME less, then I probably won't mind saying so.
 
My reading of Dr. Carruthers particular quote and of much of the primer text is that Carruthers et al are talking about the handling of the disease and explictly criticizing the fact that "CFS" has been studied as an umbrella of unrelated fatiguing illnesses, which they refer to it as a 'web of confusion'. Those are the same points being made in the June 6 document and the letter sent to DHHS - we cant study ME with varied criteria that don't require the patients to have any of the hallmark criteria of the disease. And Dr. Carruthers quote is very germaine to that argument. I think we all agree that we are in a mess specifically because of the diverse definitions under the one label "CFS"....

I have had private conversations on the definition issue but because they are private, I can not share those comments without the permission of the other person. If I get permission, I will share them.
Your quotation isn't a “Dr. Carruthers particular quote,” but rather a statement made by the International Consensus Panel, and the recommendations in the letter to DHHS aren't consistent with those made by the International Consensus Panel, or with those made in the 2011 presentation to NCHS where the International Consensus Panel was again cited in "support." The published statements by the International Consensus Panel should carry more weight than any private conversations with an unnamed individual on the definition issue.

The Panel recommends removing ME patients from the CCC and from CFS:
Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.... As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.
The quotation in your message has been taken out of the context of these recommendations and used to support a different set of interim recommendations.

Beyond my PM, I've already asked you other questions. For example, how could it be workable to collapse CFS as part of a short-term solution? The letter to DHHS stipulates:
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. Continued use of the overly broad “CFS” and Fukuda for these patients is not appropriate (emphasis added).
How long would such studies take?
 
Hi Ember,

I'm sure you appreciate that it is impossible to say how long such studies on those "CFS" patients that fall outside of ME will take. First there would have to be a recognition that these conditions even exist as something separate from ME and then researchers would need to take an interest in studying them to understand what they are. Beyond that is the level of complexity of these conditions and whether they are reasonably well characterized or not. We've all seen how long research into ME and "CFS" has been going on without much effect because the criteria were so poorly defined.

As far as I understand, while the ME-ICC primer calls for ME to be pulled out of "CFS", it is silent on what happens to these other patients. The point of the statement in the letter is that a forward plan cant just cut those patients adrift.

So to the question that I asked you...
What specific steps would you advocate to move the ball down the field in a way that might be accepted by the government and that will provide an interim step that starts to provide some protection for patients while more study is done to reach the goal? Or alternatively, would you say that we need to wait for more study on i.e. biomarkers and subsets? Or something else?
 
We've all seen how long research into ME and "CFS" has been going on without much effect because the criteria were so poorly defined.

As far as I understand, while the ME-ICC primer calls for ME to be pulled out of "CFS", it is silent on what happens to these other patients.
As studying CFS patients will undoubtedly be a long process, the agenda proposed in the letter to DHHS isn't workable. Collapsing CFS in the short term would risk cutting CFS patients adrift.

The ME Primer isn't silent on what happens to CFS patients who aren't diagnosed with ME. It's explicit, as I've already quoted above: “Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.... As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.”

Your apparent failure to understand those words by the International Consensus Panel may explain why you write, “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,” and then apply that statement to the CCC. The CCC doesn't define ME. It includes ME patients who fulfill the ICC and should be removed, as well as CFS patients who do not.

This initiative has misrepresented the words of the International Consensus Panel, as did the 2011 presentation to NCHS. You've used Dr. Carruthers' name inappropriately, without consultation, while shielding the name of an individual with whom you've had private discussions on the definition issue. Experts on the International Consensus Panel have graciously volunteered their time and expertise without recompense for the betterment of ME patients worldwide. They deserve more respect.

To your question: The recent CFSAC meeting gives no reason to believe that advocates have taken action that will “move the ball down the field in a way that might be accepted by the government.” They should consult with the experts who have published an action plan:
2. Remove patients who satisfy the ICC from the broader category of CFS. The purpose of diagnosis is to provide clarity. The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions. Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric. The panel is not dismissing the broad components of fatiguing illnesses, but rather the ICC are a refinement of patient stratification. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.
 
Perhaps, in future, Phoenix Rising should put each document to a vote of members before the Phoenix Rising name is attached to any communications or documents?
After all, Phoenix Rising is not a normal organisation, whatever its legal construct, but it is a community of members who must be part of the process.
If members vote in favour, by a simple majority, then Phoenix Rising cannot be accused of misrepresenting its members or of doing the wrong thing.
Perhaps details of such a voting mechanism should be included in the terms and conditions.
 
Perhaps, in future, Phoenix Rising should put each document to a vote of members before the Phoenix Rising name is attached to any communications or documents?
After all, Phoenix Rising is not a normal organisation, whatever its legal construct, but it is a community of members who must be part of the process.
If members vote in favour, by a simple majority, then Phoenix Rising cannot be accused of misrepresenting its members or of doing the wrong thing.
Perhaps details of such a voting mechanism should be included in the terms and conditions.
I will be opening up a discussion on this issue some time in the next few months Bob. But as I noted earlier in this thread (or perhaps in another thread, or both :)) it is not usually realistic to have an open public debate about letters that are going to be sent to public officials, and Phoenix Rising did not have this option in this case. It diminishes the impact of letters if they have been posted and discussed publicly before they are sent. The recent letter about the alleged intimidation of CFSAC members is another example: there is not time, and it is not practical, for such letters to be discussed and voted on publicly before they are sent. Similarly, one would not plan a press release in a public forum.

One option for us is to have an advocacy team which may include members who are elected by the membership (we did try to set that up but we didn't get enough volunteers). The other orgs that signed these letters don't have the unusual situation that Phoenix Rising has, which you mentioned, so this is an issue for us as an organization regarding how we are constituted. I'll be opening this question up for members to discuss soon, and there are a number of options - one option, for example, may be for us to become a membership organization with a membership fee, but there's a lot of work involved in that - but in the meantime, without making structural changes to Phoenix Rising, the only option we have at present is for the board to sign letters such as these, or not.
 
I will be opening up a discussion on this issue some time in the next few months Bob. But as I noted earlier in this thread (or perhaps in another thread, or both :)) it is not usually realistic to have an open public debate about letters that are going to be sent to public officials, and Phoenix Rising did not have this option in this case. It diminishes the impact of letters if they have been posted and discussed publicly before they are sent. The recent letter about the alleged intimidation of CFSAC members is another example: there is not time, and it is not practical, for such letters to be discussed and voted on publicly before they are sent. Similarly, one would not plan a press release in a public forum.

One option for us is to have an advocacy team which may include members who are elected by the membership (we did try to set that up but we didn't get enough volunteers). The other orgs that signed these letters don't have the unusual situation that Phoenix Rising has, which you mentioned, so this is an issue for us as an organization regarding how we are constituted. I'll be opening this question up for members to discuss soon, and there are a number of options - one option, for example, may be for us to become a membership organization with a membership fee, but there's a lot of work involved in that - but in the meantime, without making structural changes to Phoenix Rising, the only option we have at present is for the board to sign letters such as these, or not.

Thanks Mark. I haven't been able to read the entirety of these threads, as they've been rather heavy going.

My specific thought is that some of these letters seem to be made public on day that they are sent. (Unless I am wrong about that?)
So perhaps Phoenix Rising could put such documents to a vote for one day only, before they are sent, in a members-only subforum? (And perhaps send the details out via email to attract members' attention to the issue.)
I don't think that a public discussion would be helpful, at the voting stage, because it would be impossible to create or modify such documents by consensus, but a simple vote might be practical.
Anyway, it's just a thought, and I'll leave it there, as you plan to have a full discussion.