Opposition to the Coalition 4 ME/CFS Proposal

[Guido den Broeder]

I haven't seen any such rage or attacks, in any case. Perhaps I don't hang around in the right place to hear it...?

You are in the US, so it will hit you a bit later, when more ME patients have learned to say they have ME.

 

[Cort]

The thread in the quote above, started by Cort, appears to be no longer accessible or temporarily unavailable.

Possibly Cort is in the process of revising some of the content in his Front Page article to which the thread was associated, as I had also drawn his attention to a number of misconceptions around ICD-10, ICD-9-CM and ICD-10-CM classifications and codings within his article, in addition to raising the issue of lack of transparency.

The problem was that I made some serious mistakes in my reporting of the Coalition Proposal. I also took some quotes out of context. This is a really complicated subject and it needs to be presented very clearly and my article basically just roiled the waters more (although parts of it in my opinion were spot on )

My article does not reflect the Coalition's point of view. It was pulled because of inaccuracies that were pointed out to me after it was published. I fully support the Coalition's position.

My apologies to the Coalition and PR members for the confusion. The article will be back when I can get it all ironed out. That will take until after the conference.

 

[Cort]

The problem is the CFS diagnosis -at this time - will not disappear. Reeves, White, the CDC etc. will not let that happen. Realistically, at this time, this community cannot force it either.

For my part I think this is correct. THis is a long process; CFS has a long history of use in the research community and federal establishment. It will take studies validating the ICC (or other) definition before any federal group or insurance agency or whomever drops CFS......It will take years to develop studies and carry them out and there will have a solid evidentiary base which means quite a number of successful research studies.

First is getting the funding to do those types of studies. Will the feds fund them? I imagine not -which probably means small studies by interested parties......Given the fact that there aren't many studies even being done on CFS - I imagine it will take quite a bit of time to build up a good number of studies that look a'ME' patients.

 

[Cort]

My understanding of this issue is that primarily, the term CFS will be moved to the "neurologic" section rather than be categorized in the vague "symptoms" section of the ICD. This is a good thing as it might help those whose healthcare providers or benefits agencies view CFS as primarily a psychosomatic issue rather than a biological one. The current proposal has nothing to do with removing ME, making ME into CFS or vice-versa, etc.

Yes, my understanding is CFS will (finally) hopefully be moved to the neurologic section.

The ICC is an attempt, in my opinion, to re-intrepret CFS correctly - and rename it ME. The ICC was developed by physicians and researchers who want the definition to reflect the kinds of patients they are treating and studying....Thus its an attempt at the same time to remake the definition of CFS AND change the name.... a complicated and confusing procedure in some ways.

I think the Coalition proposal simply wants to keep CFS from continuing to be put in a category prone to psychosomatic interpretation. No matter what happens with the ICC criteria in the future CFS (or ME/CFS) is going to be how this disorder is referred to for a substantial amount of time by research funders, government agencies and most researchers and the media. This is my personal opinion. (We haven't even gotten ME/CFS into the media accounts of XMRV have we?)

Given that there is no avoiding being associated with CFS in the public's eye, in research circles and in academia for years I would suspect, why would we want our disorder to continue to be classified in a category.... Signs and Symptoms/Fatigue...whatever it is) that makes it seem so suspect? It's not even in a disease category........(No wonder we can't get any respect )

 

[Cort]

One important reason for not eliminating CFS at this time is, as pointed out earlier, a lot of people, including those with ME, in the US are diagnosed with CFS. ME is hardly known by US healthcare providers and agencies. For people receiving disability benefits, especially Social Security Disability benefits, their claim may be based entirely or partially on CFS,which is recognized by the US government as a disabling illness and has specific rules that, if people fit, can help a lot with their case. There is no similar federal precedent with ME or many of the other diagnoses that people with CFS may carry, e.g. low NK cell function, herpes virus reactivation, etc. Until there are standardized tests or validated diagnostic criteria for ME (and no, neither the ICC nor Canadian, although developed by experienced clinicians, have been validated) or certain provisions are made legally for ME, eliminating CFS entirely may cause a lot of problems.

I wouldn't say that ME is even hardly known by US healthcare providers and agencies...I would say that its basically not known...The last pure ME study was done over 25 years using a different criteria. We have to remember as Hope123 points out that there are NO studies on ME patients - not one! So far as the research establishment is concerned there is no evidence at all of NK dysfunction or EBV activation or low blood volume or POTS or low VO2 max in ME.....ME is officially a blank slate until those studies are done and validated - it is an idea - a proposal. All the evidence for ME in the ICC comes from CFS studies (ironically).

I would go so far as to say that eliminating CFS at this point in impossible because, going by the rigorous standards of science,there's nothing to replace it with...ME needs to build up an evidentiary base before health care providers or agency officials really begin to talk about differentiating it from CFS.

 

[Bob]

I wouldn't say that ME is even hardly known by US healthcare providers and agencies...I would say that its basically not known...The last pure ME study was done over 25 years using a different criteria. We have to remember as Hope123 points out that there are NO studies on ME patients - not one! So far as the research establishment is concerned there is no evidence at all of NK dysfunction or EBV activation or low blood volume or POTS or low VO2 max in ME.....ME is officially a blank slate until those studies are done and validated - it is an idea - a proposal. All the evidence for ME in the ICC comes from CFS studies (ironically).

I would go so far as to say that eliminating CFS at this point in impossible because, going by the rigorous standards of science,there's nothing to replace it with...ME needs to build up an evidentiary base before health care providers or agency officials really begin to talk about differentiating it from CFS.

Good points Cort. ME doesn't exist in the eyes of the mainstream scientific establishment.

The latest properly published ME research paper that I can find is from 1990, authored by Dowsett, Ramsay, McCartney and Bell.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429637/pdf/postmedj00163-0031.pdf

And part of the conclusion does look somewhat out of date now:

ME predominantly affects the most socially and economically active section of society.

There's a comprehensive list of historical ME research in this PR wiki, in case anyone is interested:
http://forums.phoenixrising.me/show...+ME+Research+Literature+and+other+information

There may also be some research carried out into ME/CFS using the CCC, but that's not included on the wiki list.

 

[Guido den Broeder]

The ICC is an attempt, in my opinion, to re-intrepret CFS correctly - and rename it ME.

I'm sorry Cort, but the ICCME are not about CFS, they are criteria for ME. It is ME that we want to be interpreted correctly, instead of calling it 'an obsolete name for CFS'.

ME and CFS are two different types of entity: the first a disease, the second a tool to select trial participants. The one thing that we absolutely don't want to happen, is that CFS gets renamed ME, since that would leave the real ME patients (you know, postviral and CNS inflammation) with no place to go.

 

[Guido den Broeder]

As for research, much CFS research is in fact also research into ME. Most patients that fulfill the CCC or Holmes criteria are ME patients, and half of those fulfilling the Fukuda criteria have ME.

Some ME researchers have used the term CFS only because otherwise they could not get published.

I suggest that we do not throw away all the results, but instead carefully look at how patients were selected on a case by case basis.

 

[eric_s]

As for research, much CFS research is in fact also research into ME. Most patients that fulfill the CCC or Holmes criteria are ME patients, and half of those fulfilling the Fukuda criteria have ME.

Some ME researchers have used the term CFS only because otherwise they could not get published.

I suggest that we do not throw away all the results, but instead carefully look at how patients were selected on a case by case basis.

I agree with this, i think this is the way to go. They made things quite complicated for us by using many differenct criteria in all these "CFS" studies.

 

[Jill McLaughlin]

Cort, there is no real reason to believe that it will be moved, other than that it may be what you want.
CFS does not define a neurological illness and codes won't change this. The ICC is NOT about CFS or ME/CFS.
Just the opposite. It appears that the coalition was all busy with this code issue, then the ICC came out much
stronger than anyone seemed to anticipate. Then the stunned silence and had to quickly scramble to make
this fit or work it to your advantage. But it doesn't. So this convoluted argument about remaking CFS and
change the name to ME? Well ME is already named ME and is defined and coded appropriately. So leave
it alone.

Yes, my understanding is CFS will (finally) hopefully be moved to the neurologic section.

The ICC is an attempt, in my opinion, to re-intrepret CFS correctly - and rename it ME. The ICC was developed by physicians and researchers who want the definition to reflect the kinds of patients they are treating and studying....Thus its an attempt at the same time to remake the definition of CFS AND change the name.... a complicated and confusing procedure in some ways.

I think the Coalition proposal simply wants to keep CFS from continuing to be put in a category prone to psychosomatic interpretation. No matter what happens with the ICC criteria in the future CFS (or ME/CFS) is going to be how this disorder is referred to for a substantial amount of time by research funders, government agencies and most researchers and the media. This is my personal opinion. (We haven't even gotten ME/CFS into the media accounts of XMRV have we?)

Given that there is no avoiding being associated with CFS in the public's eye, in research circles and in academia for years I would suspect, why would we want our disorder to continue to be classified in a category.... Signs and Symptoms/Fatigue...whatever it is) that makes it seem so suspect? It's not even in a disease category........(No wonder we can't get any respect )

 

[eric_s]

As for research, much CFS research is in fact also research into ME. Most patients that fulfill the CCC or Holmes criteria are ME patients, and half of those fulfilling the Fukuda criteria have ME.

Some ME researchers have used the term CFS only because otherwise they could not get published.

I suggest that we do not throw away all the results, but instead carefully look at how patients were selected on a case by case basis.

I think since the publication of the CCC there was no good reason to use anything other than them for cohort selection. And once the ICC are published they should only use them. I really can't see any good reason for using Fukuda or even looser criteria. What advantage could that have? I mean for people acting in good faith, so no need to mention other kinds of reasons ;-) Even if the CCC or ICC might exclude some people who also have the same illness, i guess for research it's best to have the most typical, most severe cases, because there it should be the easiest to find something.

 

[Jill McLaughlin]

Cort, I have a question. I think you wrote this and saw the coalition put out an announcement
that the coalition or Marly was making a presentation on the ICD proposal to the IACFS at
the conference. Beyond the bad timing as to engaging engaging scientists AFTER it was
already presented to NCHS, I do not see it listed anywhere on the conference agenda.

 

[Dx Revision Watch]

I'll ask Cort, myself.

@ Cort

Thank you for responding to my request for an explanation for the removal of your article about the C4ME/CFS initiative and its associated thread.

There was another question in that thread which you have yet to address and it was this:

What was your rationale for signing the Phoenix Rising name up to the initiative (an initiative which I support in principle) but not informing the members of Phoenix Rising that the C4ME/CFS, of which PR is a member, had undertaken this initiative until just a day or two before the ICD-9-CM Coordination and Maintenance Committee meeting took place, rather than back in May/June/July when the initiative was being developed?

Why has this initiative been undertaken without transparency? Are you comfortable with the lack of transparency and how do you justify the lack of transparency?

What I am interesting in establishing is: what is the mechanism going to be for members of PR to discuss and input into future initiatives undertaken by other organizations or the C4ME/CFS in the name of Phoenix Rising and why was no mechanism in place for this initiative from which the membership was not only disenfranchised from input but also left uninformed about the initiative until the 11th hour?

Suzy

 

[Bob]

ME and CFS are two different types of entity: the first a disease, the second a tool to select trial participants. The one thing that we absolutely don't want to happen, is that CFS gets renamed ME, since that would leave the real ME patients (you know, postviral and CNS inflammation) with no place to go.

Guido, if you are advocating that CFS and ME should remain separate, and CFS should remain non-neurological, then that's been the case in the USA for the past 25 years. It hasn't got us far.

As for research, much CFS research is in fact also research into ME. Most patients that fulfill the CCC or Holmes criteria are ME patients, and half of those fulfilling the Fukuda criteria have ME.

Some ME researchers have used the term CFS only because otherwise they could not get published.

I suggest that we do not throw away all the results, but instead carefully look at how patients were selected on a case by case basis.

It would be impossible to re-evaluate the research from the past 25 years and to separate ME patients from CFS patients retrospectively. Once a paper is published, then it cannot be changed as far as I understand. And the data from the published papers are not necessarily kept. It would also be a phenomenal amount of work to carry out such a project, needing an immense amount of funding. Basically, it's just not possible.

 

[Bob]

Which is why you should not be calling yourself ME agenda. This is CFS agenda.

Jill, this adds nothing to the debate at all. It's childish name calling.

People like Suzy, who are advocating that 'CFS' be reclassified, are doing so from sincere and legitimate motivations, in order to get the best deal for ME patients over the long-term.
Most of us want the same long-term outcome for ME patients, but there is a legitimate difference of opinion about how we best get there.

I sincerely want the best for all of us, but at the moment, I don't know what the best course of action is to take, mainly because the ICC has raised many issues that weren't there before.
At moment, I'm leaning towards thinking that CFS should be reclassified as a neurological disease (and then the official diagnostic criteria should be improved/changed), because I think that that side of the argument is slightly stronger, but it's not a fixed opinion and I'm very interested in the debate.
This does not mean that I have a 'CFS agenda', but it means that I think this course of action gives the best hope for those of us with the neurological disease called 'ME'.

If you have strong feelings about this subject, then please share your opinions so that the rest of us can understand where you are coming from.

 

[floydguy]

Guido, if you are advocating that CFS and ME should remain separate, and CFS should remain non-neurological, then that's been the case in the USA for the past 25 years. It hasn't got us far.



It would be impossible to re-evaluate the research from the past 25 years and to separate ME patients from CFS patients retrospectively. Once a paper is published, then it cannot be changed as far as I understand. And the data from the published papers are not necessarily kept. It would also be a phenomenal amount of work to carry out such a project, needing an immense amount of funding. Basically, it's just not possible.

Recoding a disease without the corresponding criteria will not make CFS neurological. There must be some evidence that a person being categorized with a neurological disease has one.

Again, I think the concern over past CFS research is overstated. Most of the research is psychological and the rest of it mostly suspect due to heterogeneous cohorts. Research containing the same patient population will accelerate understanding. In my opinion, people who want to continue down the ill-defined cohort trail will condemn all of us to another 25 years of PACE studies and ridicule by everyone.

 

[Bob]

Again, I think the concern over past CFS research is overstated. Most of the research is psychological and the rest of it mostly suspect due to heterogeneous cohorts. Research containing the same patient population will accelerate understanding. In my opinion, people who want to continue down the ill-defined cohort trail will condemn all of us to another 25 years of PACE studies and ridicule by everyone.

It could equally be said that everybody advocating for the status quo wants to condemn us all to another 25 years of PACE trial studies etc.
But neither comment is helpful to the debate. I'd far prefer it if this discussion remained factual rather than sensational.

Most people advocating for CFS to be reclassified are not advocating for heterogeneous cohorts.
Homogeneous cohorts will only come about when different diagnostic criteria are used for research.
This will only come about when ME and the ICC are widely recogised and accepted by governments and the scientific establishment.

Leaving CFS as it is now, will change nothing.
Possibly, it will mean that research funding will be denied to research that proposes using the ICC, as there is no funding infrastructure set up for 'ME'.
So it might even make the situation worse than it is now.

Recoding a disease without the corresponding criteria will not make CFS neurological. There must be some evidence that a person being categorized with a neurological disease has one.

I agree with this, but many people with a CFS diagnosis have a neurological disease.
Reclassifying CFS is just the first step towards getting the neurological disease taken seriously.

I agree that scientifically speaking, CFS diagnoses a heterogeneous cohort, including ME patients.
But this is a political process as much as anything else.
And for me, it's all about what the best course of political action is for the best long-term outcome.

The current situation has not got us anywhere.

 

[floydguy]

It could equally be said that everybody advocating for the status quo wants to condemn us all to another 25 years of PACE trial studies etc.
But neither comment is helpful to the debate. I'd far prefer it if this discussion remained factual rather than sensational.

Most people advocating for CFS to be reclassified are not advocating for heterogeneous cohorts.
Homogeneous cohorts will only come about when different diagnostic criteria are used for research.
This will only come about when ME and the ICC are widely recogised and accepted by governments and the scientific establishment.

Leaving CFS as it is now, will change nothing.
Possibly, it will mean that research funding will be denied to research that proposes using the ICC, as there is no funding infrastructure set up for 'ME'.
So it might even make the situation worse than it is now.

The danger is conflating CFS with ME. I think they should remain separated. Bringing CFS in line with ME has just as good chance of the ME being dropped or the ME criteria being dropped so that we get an ME label with Reeves criteria. Nobody is ever going to feel comfortable with CFS. It's got way too much baggage. We've had 25 years to get comfortable. How much longer do you think it will take for people to take it seriously? I would argue the best course of action is to encourage adoption of the ICC criteria wherever and whenever possible. Changing CFS code numbers is like re-arranging deck chairs on the Titanic.

 

[Jill McLaughlin]

If people like Suzy are trying to get CFS reclassified as ME, this is only helping those
with CFS, not ME. Thus, be honest and call it CFS agenda. This is not childish. If the
truth is discomforting it is not my fault. CFS is not neurological by definition and
this will only harm and diminish those with ME, not "help" those with CFS.

Jill, this adds nothing to the debate at all. It's childish name calling.

People like Suzy, who are advocating that 'CFS' be reclassified, are doing so from sincere and legitimate motivations, in order to get the best deal for ME patients over the long-term.
Most of us want the same long-term outcome for ME patients, but there is a legitimate difference of opinion about how we best get there.

I sincerely want the best for all of us, but at the moment, I don't know what the best course of action is to take, mainly because the ICC has raised many issues that weren't there before.
At moment, I'm leaning towards thinking that CFS should be reclassified as a neurological disease (and then the official diagnostic criteria should be improved/changed), because I think that that side of the argument is slightly stronger, but it's not a fixed opinion and I'm very interested in the debate.
This does not mean that I have a 'CFS agenda', but it means that I think this course of action gives the best hope for those of us with the neurological disease called 'ME'.

If you have strong feelings about this subject, then please share your opinions so that the rest of us can understand where you are coming from.

 

[Bob]

If people like Suzy are trying to get CFS reclassified as ME, this is only helping those with CFS, not ME.

That's your legitimate opinion Jill, which you are entitled to. But you don't have any evidence to back up this opinion, any more than anyone has any evidence to back up the oposing opinion.
So why don't we keep the discussion about the issues, rather than getting personal?
If do you have evidence to back up your claims, that i'm obviously not aware of, then please share it.