Opposition to the Coalition 4 ME/CFS Proposal

[*GG*]

If anyone is still in any doubt about what the Coalition 4 ME/CFS real intentions are with their proposal the truth can be found in this statement from Cort

Quote from Cort Johnson

"The task then is to redefine CFS correctly and rename it 'ME"

Link http://phoenixrising.me/forums/show...or-CFS-Be-Classified-as-Neurological-Disorder

So there you have it in black and white the aim of the coalition 4 ME/CFS is to convert CFS into ME, in complete defiance of the ICC which states that ME and CFS are totally different disease, the coalitions aims is to STOP ME being seen as a separate disease!!!!!!!! And to steal the name ME and all the research that belongs to it, and its legitimate status as a Neurological disease! And get the name CFS converted to ME, the Coalition is trying to destroy everything that the ICC has achieved by separating the two illnesses. And get them seen as being exactly the same thing, thereby guaranteeing that the truth will never come out.

Do everything you can to stop this, your lives. and those of millions of people are at stake!!!!!

All the best

So who is using the "old" definition of ME for research? It seems that it is collecting dust and doing no one any good?!

GG

 

[rlc]

Hi GG, RE So who is using the "old" definition of ME for research? It seems that it is collecting dust and doing no one any good?!

Im talking about the international Consensus Criteria, published a few months ago.

They are saying that ME and CFS are completely different illness!!!!!!

Cort and his coalition are trying to destroy the work of the ICC by making CFS and ME the same, which is the LIE the CDC and Wessely have been saying for years.

This is what the coalition are trying to do in Corts own words

The task then is to redefine CFS correctly and rename it 'ME"

This is in defiance of everything that the world experts who wrote the ICC are saying.
Do not let them destroy ME, all the good work the ICC has done, and continue to promote the lie that ME and CFS are the same.

All the best

 

[Dx Revision Watch]

Hi Suzy, the article by Cort has not just been moved from the front page to the advocacy section and now is blocked so it cant be viewed.
There was in a separate tread started by Cort in the advocacy section, which people could and did post replies to, including ones that strongly opposed Cort and the Coalition 4 ME/CFS proposal.

Yes, I know. Initially, I had attempted to leave a comment on the article itself, but the article did not appear to be set to accept comments. So then I left at least two posts on the associated thread (which I've reproduced above), one correcting a number of technical misconceptions Cort had made in relation to ICD-10, ICD-9-CM and ICD-10-CM in his article, the other raising the issue of the C4ME/CFS's (for which Phoenix Rising is a member) lack of transparency around the initiative.

As you note, the Front Page article has been taken down and the associated thread at this URL

http://forums.phoenixrising.me/show...-as-Neurological-Disorder&p=205915#post205915

has been put behind a password.

I will ask Cort, this morning, why the article and its associated thread have been taken down.

ETA: I have now written to Cort for an explanation

Suzy

 

[Dx Revision Watch]

Mary Schweizter Co-Cure article: ACT: ICD-9-CM and ICD-10-CM


http://forums.phoenixrising.me/show...ernmental-Body&p=206074&viewfull=1#post206074

 

[Bob]

Many thanks to everyone who has contributed to this informative discussion.
I've really appreciated reading both the impassioned opinions and the technical info. Both have been really important.
I come to this discussion with an open mind because I really don't know what the best political answers are for our community in the short term.
I'm viewing this whole subject, not through the perspective of pure medical information, but through what is best in terms of political maneuvering..
I think that it's a sad state of affairs that our community has had to get involved political maneuvering, rather than simply advocating for what is proper in terms of medical knowledge, but unfortunately we have been forced into this situation.
I understand both sides of the argument, and strangely agree with both, strongly. So that leaves me sitting on the fence, not knowing what is best.

On the one hand, the new ICC helps our community to separate ME from CFS for the first time, practically speaking, and can help researchers create a proper 'ME' cohort for research purposes. This, for the first time, means that it makes sense to me to leave CFS where it is in terms of classification. But practically speaking, almost everyone in the USA has a CFS diagnosis and so if CFS is kept separate to ME, then realistically most Americans will be kept in the non-neurological 'CFS' category, diagnosed only using the CDC's criteria, at least in the short term, and will continue to be treated the same as they are now. Moving CFS into a neurological category has the potential to instantly help everyone by forcing the establishment to take CFS and ME more seriously. After reclassification of 'CFS', then we can work on getting the most appropriate diagnostic criteria adopted, and advocate for dropping the CFS name and the CDC's criteria. Over time, we can advocate for moving towards using the ICC and dropping the CDC's definitions. On the other hand, if CFS and ME are merged, using the current diagnostic criteria, then it is possible that the psychological lobby will take ownership of CFS/ME, just as they do in the UK, and CFS/ME will continue to be treated as a 'syndrome' or a psychological illness.

There are complex and valid justifications for both sides of the argument, and I just can't see any obvious or straightforward short-term political answers.

Medically speaking, I would like to see the ICC used for all research into ME, and ME treated as a distinct medical disease.

For the short term, the strongest political argument that I've seen in this discussion is as follow:

...or doctors and insurance companies will avoid the unfamiliar G93.3 code and continue to code patients [to R53.82] "Chronic fatigue syndrome NOS" under "Symptoms, signs and ill-defined conditions".

...

R53.82 is a gift to medical insurance companies.

I don't have a good understanding of the USA's medical insurance system, but it seems that if everyone with a current CFS diagnosis is automatically categorised as having a neurological disease, then this could help a lot of people in an immediate practical sense. Once CFS is recategorised, then our community can move forwards from there in terms of pushing for the CFS name to be dropped and for ME to be treated seriously using the ICC.

But these are just my thoughts. Like I said, I don't think there are any obvious or easy answers to such a complex set of medical and political issues.

 

[Dainty]

Moderator: Threads merged; apologies for any resulting confusion in discussion continuity.

Thread renamed to reflect overall topic and remove excessive emphasis.

 

[Yogi]

This is a very difficult issue. I have read both sides arguments and will not repeat the issues here.

I fully support the new International Consensus Criteria for ME. I also personally feel that the Coalition is doing a good thing and as Tina said it is evolutionary and not revolutionary. It is a good step in the right direction.

Thank you.

 

[floydguy]

And what diagnosis did you get, Floyd?

Also a lot of research has been done into CFS. Would you want to throw all of this away?

I think everybody wants to eventually get rid of CFS, but realistically, how long do you think it will take to have everybody use the ICC? What do you want to happen to people who have been diagnosed with CFS until then? I don't live in the USA, so the ICD-10-CM doesn't affect me directly, but i would not want my diagnosis to be in the R section.

- Lyme Disease
- Chronic Innate Immune Dysfunction
- Chronic Low NKC Function
- Dysautonomia

This is about going forward, not what has happened in the past. Yes, there will be some turbulence getting rid of CFS but I think many of us think that is worth any risk that might pose. CFS is a completely meaningless diagnosis and should not in any way be brought up to the same level as ME. Otherwise ME will potentially come to represent Reeves Disease. So we will eliminate CFS but not the criteria.

 

[Dx Revision Watch]

Dainty has removed content from one of my posts on this (now merged) thread.

I had written:

As Cort's article on the C4ME/CFS's initiative and the thread associated with that article is no longer available, I'm posting the two comments I left on the thread, this afternoon, below:

Dainty has written:

Moderator: content removed. We remove threads for a reason; please respect it.

But no reason for the removal of Cort's article on the C4ME/CFS ICD-10-CM initiative and its associated thread has been given, either by Cort or by the moderators.

How are members expected to know whether an article has been removed temporarily for revision or permanently?

How are members expected to know whether specific posts in a thread have been removed because they were deemed unacceptable or whether they have been remove en masse because they were associated with an article that is no longer accessible for, as yet, unstated reasons?

Is this how the new Forum Management is going to operate? Articles and threads disappearing with no explanation for the reason, then members asked to "respect" the (non stated) reasons for removal?

Suzy

 

[Dainty]

But no reason for the removal of Cort's article on the C4ME/CFS ICD-10-CM initiative and its associated thread has been given, either by Cort or by the moderators.

How are members expected to know whether an article has been removed temporarily for revision or permanently?

How are members expected to know whether specific posts in a thread have been removed because they were deemed unacceptable or whether they have been remove en masse because they were associated with an article that is no longer accessible for, as yet, unstated reasons?

Is this how the new Forum Management is going to operate? Articles and threads disappearing with no explanation for the reason, then members asked to "respect" the (non stated) reasons for removal?

Suzy

Members are asked to respect moderator actions, whether or not a reason is given.

If you have a complaint pertaining to the moderation of this forum, please take it up privately rather than disrupting a public thread with it.

Thank you.

 

[floydguy]

So, floydguy, do you think all, or even most, ME patients in the US have specific detailed diagnoses like yours and manage to avoid the dreaded "CFS"? I don't. The vast majority of us are stuck with "CFS" as the only official diagnosis of our condition. I'd be interested to hear your answers, if you have any, to eric's questions, and

So what does a CFS diagnosis do for you or anyone? Why are people so attached to it? Do you receive treatment for it? Do people feel better having some diagnosis - even if it's completely bogus? I'd personally rather have no diagnosis than CFS. If the only basis of the diagnosis is symptoms than the doctor hasn't done his/her job. If there is some other dysfunction like low NKC Activity then use that diagnosis. We've all been thrown under the bus by the medical/insurance establishment. I don't see how perpetuating a a list of vague symptoms dressed up as a diagnosis helps anyone.

Yes, I think we'd be better off to get rid of the majority of research that suggests that CFS is psychosomatic. The physiological areas where there is proven dysfunction should be performed again using the ICC criteria.

It's a leap of faith I think. Perhaps many of us won't receive a ME diagnosis but if real research is done perhaps it will help those of us on the outside looking in. Otherwise we will continue to get tired studies using the Atlanta phone book and PACE Trials from the UK. I really don't see how any of that stuff helps me or anyone in the community.

 

[eric_s]

That's interesting, Floyd. Probably in some settings it's better to have the kind of diagnoses you mentioned, rather than "CFS". On the other hand i think what we have is one disease that leads to the kind of "malfunctions" like immune dysfunction and dysautonomia, so this approach (a number of other diagnoses) seems to have the risk that people don't realize that there is one disease that is still not really understood that causes all of these problems. And they need to realize this and finally allocate enough resources to research it and find treatments that work.

 

[ukxmrv]

What happens at the moment in the USA (and please only answers from USA people with first-hand experience)?

Does your insurance company govt department/doctor/anyone important use the existing ICD codes

and if so which one for CFS?

How does this affect you in practise please?

(just trying to understand, in the UK some doctors and hospitals do use the ICD G93.3 code for ME (we are on a different version as you probably know. My insurance company not at all))

 

[Andrew]

I can't read all these lengthy messages. Here's what I'd like to see happen.

1. The people Ramsey was talking about be called ME
2. The Lake Tahoe Cohort be called ME
3. What I have be called ME
3. The ICC be adopted
4. Chronic Fatigue Syndrome be removed by the WHO
5. The CDC acknowledge that the group they long called CFS is really ME
6. The CFS term go away, and everyone understand we have ME
7. The UK's fatigue-only psychiatric disorder be renamed idiopathic chronic fatigue.

I don't care if WHO retains Chronic Fatigue, as long as they remove Chronic Fatigue Syndrome.
I don't care if WHO calls it neurological and the ICC calls it neuro-immune. The two terms don't conflict.

 

[Guido den Broeder]

So what does a CFS diagnosis do for you or anyone? Why are people so attached to it?

This is a good and serious question. In response to the ICCME, one of the things that is currently happening is that people with the diagnosis of CFS, who don't have ME, are getting extremely enraged, attack people that do have ME within ME/CFS organizations, and even insist that if the term CFS must go, ME should be reserved for them.

 

[ukxmrv]

Is there any way you could find out what code your healthcare system is using for CFS specifically, SickofCFS?

If their codes came from ICD (for example) do they have anything under the G93 section at all?

For your insurance company - where are you coded with them now (i.e. where is CFS at the moment with them)?

Sorry to be a bother - just trying to understand.

 

[floydguy]

I am not the least attached to it (and it's silly to suggest people are) but it's still in my record since my PCP diagnosed it based on CDC criteria, like it or not. I didn't go asking for it, for heaven's sake; I hadn't even heard of it before then. That's probably true for most, although not all, US PWME.

I now get most of my treatment based on a persistent HHV-6 infection, but most ME patients in the US are not fortunate enough to have access to knowledgeable ME doctors, or to have diagnoses distinct from "CFS".



Oh really? Can most of us get tests for other dysfunction like low NKC activity or NMH or infections like persistent hhv-6 or chronic EBV when our PCPs have diagnosed "CFS"? Nope, because the CDC says it's not immunological or neurological. Just because you're fortunate enough to have a doctor willing to do those tests, doesn't mean most of us are. Once you've been diagnosed with CFS per the CDC, most insurance companies (and I include Medicare) won't pay for tests for "other dysfunctions". And many doctors refuse to order those tests with "no evidence" that they're needed (thanks, CDC).

I'm lucky to have decent insurance and access to a knowledgeable ME/CFS doctor. Many of us aren't that fortunate.


Certainly




Really? How do you think that's going to happen? Who's going to pay to have all the research repeated? Do we want to wait another 10 years while our best researchers repeat their work? I don't think so. I'd rather see them move forward from here using the ICC criteria.

I don't want Dr Klimas' work on immune dysfunction to disappear. Or Drs Montoya or Lerner's work on herpesvirii... or Dr Mikovitz's work on XMRV... or Dr Chia's work on enterovirii... All that work was done on "CFS", the officially designated name for our illness in the US. We may not like the categorization, but it is what it is. The research world is not going to allow all that data to simply disappear. It has to go somewhere and the "somewhere" it belongs is in the neurological category with ME.



Who in the US has an ME diagnosis that is accepted by their healthcare system, HMO, or insurer? ME does not exist for all practical purposes in the US.

Tina has clearly addressed many of these issues in her posts to this thread. Those who actually want to understand the facts and issues at play would benefit from reading those posts.

If CFS went away then the CFS diagnosis would disappear and people would either get ME or whatever condition they have. I am sorry but just because people are stuck with a label is not a good reason to perpetuate its use. Misery might love company but that's taking it to an extreme.

 

[Angela Kennedy]

If CFS went away then the CFS diagnosis would disappear and people would either get ME or whatever condition they have. I am sorry but just because people are stuck with a label is not a good reason to perpetuate its use. Misery might love company but that's taking it to an extreme.

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.

 

[Hope123]

I think a distinction needs to be made between what patients and advocates want ideally and what is feasible currently. It's rare that change takes place in one fell swoop (and even then, what appears to change rapidly is often preceded by a lot of lesser changes behind the scenes beforehand) for most things; rather change usually works incrementally.

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.

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.

 

[Guido den Broeder]

Yes, that is the proposal, but it is not a good thing.

Most people diagnosed with CFS that do not have ME, don't have another postviral neurological disorder (many have psychiatric problems, see Jason, but other conditions like diabetes and cardiomyopathy are found as well). Classifying CFS in the table under G93.3 will mean that they won't receive proper treatment and advice. What needs to happen instead, is that everyone gets the correct diagnosis. To accomplish that, CFS needs to disappear.

I know that it's not easy, but it must be done.