CDC Interview on the CFS Toolkit

[Ember]

And btw...it is very dangerous to keep saying ME is a subset of CFS.

If the ICC ends up as the defacto definition for our illness, it will...split the patient community in two: those who fit ICC (and atypical ICC), and those who do not.... For us to now recommend that these people classified as CFS patients is inhumane.... We should not be endorsing, promoting, or recommending that this term be placed on people who don't meet the full ICC.

The International Consensus Panel characterizes CFS as a more encompassing definition than ME: “Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.” It recommends removing ME patients from the CFS classification: “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.” This recommendation doesn't constitute the promotion of CFS. The panel suggests rather that, “as other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.”

 

[Andrew]

I searched the ICC and your quotes are not there.

 

[Ember]

The above quotations can be found by following the link to the International Consensus Primer. Authored by the International Consensus Panel, the ICP is another a consensus document, forming part of “the ICC endeavour.” It was published last month. The International Symptom Scale is still expected.

The ICP deserves much more attention than it has yet received. Please read it and distribute it widely (especially to medical practitioners). It's freely available to download.

 

[Ember]

I'm quite sure that Coalition 4 ME/CFS means something quite different by CFS.... I do not see the two (IC panel and Coaltion) as being in conflict at all.

As far as the Coalition goes, this context should demonstrate what they mean by 'CFS'.... Clearly the Coalition is saying CFS is like ICC-ME/CCC-ME/CFS and that is what should be classified as a neurological disease (not CFS=ICF).

There are many meanings for 'CFS' and we don't all use that the same way, and not necessarily the same way in every context.... If we want to understand each other we need to figure out what the meaning is in a given context.

On at least two occasions, Dr. Unger has complained that the CDC can't give good guidance while there is disagreement in the field about ME and CFS. She told CFSAC, "There is confusion in the field about whether it should be the same thing, whether it should be two things, whether it should be a hyphen name. Until there is clarity of what we are talking about, we cannot give good guidance." Later she wrote, "Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. We are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward."

Sandra Kweder advised CFSAC in her October FDA presentation that progress for our disease is impeded by, among other things, the controversy surrounding ME and CFS definitions: “Why so few applications? Because the Core is still in question: - no accepted definition for disease – and controversy besides....”

If the controversy surrounding the ME and CFS definitions results from our failure to consistently define our terms, then we need to address that problem. The Coalition should clarify that it is using only the CCC to define CFS (if such is the case) when it asserts “the equivalency or close similarity of ME and CFS” and when it claims, more radically, that ME and CFS, properly defined, are the same. The International Consensus Panel defines CFS differently and recommends that ME be separated from CFS. Barring an ICC/ICP retraction, the onus is on our advocates to clearly articulate any consensus that exists between us and the scientific community.

 

[alex3619]

Here is a major problem: it takes everyone to agree on a single definitions of at least ME, if not ME and CFS, for there to be no controversy. While the Oxford CFS definition is still being used, both clinically and in research, this will remain controversial. The single biggest stumbling block we have is the Oxford CFS definition, which is substantially not verified as a valid CFS definition, and is almost irrelevant to ME. The biopsychosocial researchers are not going to want to give this one up either.

However if all biomedical research uses for example CCC or ICC, then the basis for biomedical research and psychopsychiatric research will be clearly separate. However I think this is the case now, and yet confusion still abounds.

Fortunately the attempts by the CDC to expand the Fukuda definition have been largely ignored, at least in part to their lack of evidence that its a superior definition. I wish the same had happened to the Oxford CFS definition.

Bye, Alx

 

[Andrew]

The above quotations can be found by following the link to the International Consensus Primer. Authored by the International Consensus Panel, the ICP is another a consensus document, forming part of “the ICC endeavour.” It was published last month. The International Symptom Scale is still expected.

You are misrepresenting the facts. It was not authored by the whole panel. You know it, I know it. Next you will say "well, it was authored on their behalf," as you have before when you misrepresented it. That doesn't make it a consensus. And even if it was, we have Dr. Broderick responding on behalf of the consensus panel, attacking the validity of the various CFS definitions (except for CCC). Which we went over before. So I guess this is just reruns of before.

 

[Ember]

You are misrepresenting the facts. It was not authored by the whole panel. You know it, I know it. Next you will say "well, it was authored on their behalf," as you have before when you misrepresented it. That doesn't make it a consensus.

Of course the ICP was authored by the International Consensus Panel and by consensus, Andrew. The authors are listed on the page immediately following the title and on the back cover. The ICP reiterates the panel's consensus model:

Panel members contributed their extensive knowledge and experience to the development of the International Consensus Criteria and this Primer. In addition, an International Symptom Scale will be developed to complement the criteria and promote clearer identification of patients for research studies.

Primer Consensus: The authors, representing twelve countries, reached 100% consensus through a Delphi-type process.

 

[Ember]

However if all biomedical research uses for example CCC or ICC, then the basis for biomedical research and psychopsychiatric research will be clearly separate. However I think this is the case now, and yet confusion still abounds.

Do you have ideas for clearing up the confusion, Alex? I support what you're suggesting here, of course, a practice of defining our terms:

So CFS is defined by the users. To me its just a generic label, a description of what others are doing. I do prefer, in selected instances, to refer to Oxford CFS or Fukuda CFS or whatever. That at least is a little more precise. All those definitions together (and there are a few more) comprise the set that is called CFS.

Without agreeing on a single ME definition, couldn't we agree that there's also a set called ME?

 

[alex3619]

There is a set called ME. Ember, but more importantly some of the people who wrote the CCC wrote the ICC. The ICC is what we should be supporting I think. It is no small task to get everyone to agree on one definition however. I only see three ways this can happen, but then I am in my usual fog so maybe I missed something.

The first is a scientific breakthrough that gives credence to ICC ME or some other definition. I doubt this will happen but stranger things have happened in history.

The second is some kind of world conference endorsing a definition. Costly, hard to set up, and may require many such to get agreement. It could take many years and I doubt it would be worth it. Don't count on it.

The third, and most likely in my view, is the idea of a de facto standard. If all the key researchers use one standard, repeatedly, then anything that uses an older and no longer often used standard will be looked at as though it were a pineapple in a box of apples. This may not include Oxford CFS because they are all pears, but the hope there is that with enough science their models will all go pearshaped. Forgive the bad puns.

If all these fail then an agreed name will occur because of the discovery of a core mechanism and biomarkers. The scientists will then give it (or them, there may be several) a new name and we will have a diagnostic test as well. Dubious studies conflating fatigue with ME will then be impossible to publish. Here's hoping.

I would still worry about people who might then have no definition. They will be lumbered with CFS at a time when most of the biomedical research is no longer looking at them. The babblers will have free reign for a while.

A single ME definition in wide use will give the research wings, but it will still have a millstone around its neck until the cause is understood. That millstone is the BPS approaches to CFS. As I have said elsewhere, we get a cure only from biomedical research and we need to push the accelerator on that. I tried to do that off and on since 1993. However, if we don't take the foot off the brake we aren't going to accelerate much. That brake is psychobabble.

Bye, Alex

 

[Ember]

There is a set called ME. Ember, but more importantly some of the people who wrote the CCC wrote the ICC. The ICC is what we should be supporting I think.

The ICP authors don't include the CCC in the ME set. They leave it instead in the CFS set: “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.”

We've had the CCC for almost 10 years now. Could it take another decade for the ICC to become a de facto standard?

 

[alex3619]

Yes I think so Ember. Its all up to the scientists, what standards they want to use in their studies. The more they use ICC, the faster it happens.

 

[Andrew]

Of course the ICP was authored by the International Consensus Panel and by consensus, Andrew. The authors are listed on the page immediately following the title and on the back cover. The ICP reiterates the panel's consensus model:

In that case, their primer is in disagreement with their defense of the ICC via Broderick. Which is elsewhere in the thread.

 

[Ember]

In that case, their primer is in disagreement with their defense of the ICC via Broderick.

Few would seriously contend that the International Consensus Panel is in 100% disagreement with its own published response. Collectively, the members of the panel have:

• diagnosed and/or treated more than 50 000 patients who have ME;
• more than 500 years of clinical experience;
• approximately 500 years of teaching experience;
• authored hundreds of peer-reviewed publications, as well as written chapters and medical books; and
• several members have co-authored previous criteria.

 

[Koivy]

What would happen if advocacy groups advocated for the use of the ICC in both research and clinical settings? Or is it already happening? Thanks.

 

[Valentijn]

What would happen if advocacy groups advocated for the use of the ICC in both research and clinical settings? Or is it already happening? Thanks.

We'd get research that is actually useful because the study patients would have the same set of specific symptoms as a bunch of people, versus vague symptoms like feeling fatigued for a while.

It is happening somewhat already. It seems to be getting more popular, when using Fukuda, to mention how many patients fulfill CCC criteria. That will probably shift to ICC, though really there's little difference other the name of the criteria ("international" versus "canadian") and the name of the disease ("ME" versus "ME/CFS").

The PACE trial also mentioned how many of the quasi-Oxford patients met the quasi-London ME definition. They didn't break down results any further of course, such as to illustrate if any London ME patients "recovered" or whatever they were calling it.

 

[Koivy]

We'd get research that is actually useful because the study patients would have the same set of specific symptoms as a bunch of people, versus vague symptoms like feeling fatigued for a while.

It is happening somewhat already. It seems to be getting more popular, when using Fukuda, to mention how many patients fulfill CCC criteria. That will probably shift to ICC, though really there's little difference other the name of the criteria ("international" versus "canadian") and the name of the disease ("ME" versus "ME/CFS").

The PACE trial also mentioned how many of the quasi-Oxford patients met the quasi-London ME definition. They didn't break down results any further of course, such as to illustrate if any London ME patients "recovered" or whatever they were calling it.

Thanks for the reply! I should have phrased my question better. What I meant to say is "Would researchers, clinicians, and government agencies listen if advocacy groups pushed for the use of the ICC in research and clinical settings? Or are advocacy groups already doing this? If not, can someone explain why not?

I totally agree that this set of criteria would totally help to produce targeted and useful research.

 

[Andrew]

Few would seriously contend that the International Consensus Panel is in 100% disagreement with its own published response. Collectively, the members of the panel have:

None of this disputes my point.

 

[WillowJ]

Thanks for the reply! I should have phrased my question better. What I meant to say is "Would researchers, clinicians, and government agencies listen if advocacy groups pushed for the use of the ICC in research and clinical settings? Or are advocacy groups already doing this? If not, can someone explain why not?

I totally agree that this set of criteria would totally help to produce targeted and useful research.

The government wants a board-certified group to do this. Of course, the board certified groups are still confused by the conflation of "chronic fatigue"/Oxford-CFS, and ICC-ME (aka CFS).

My solution (I am not the only person who has thought of this) is for our specialists to make their own board certification for neuro-immune disease. Include GWI, Lyme disease, MCS, and take back fibro from the rheums who don't want it anyway. And whatever else is neuro-immune and displaced/ a 'refugee' illness.

Some of our research clinicians such as Dr. Mary Ann Fletcher are pushing for just this [ETA: using ICC or CCC]. Dr. Lenny Jason has been advocating for a specific definition for many years.

 

[Ember]

Is any advocacy group in North America pushing for the use of the ICC?