ME and cfs to be classified as seperate illnesses

[V99]

Gerwyn
what is Bateman's view of exercise?

 

[Gerwyn]

No medical teams in the US besides CFS doctors have even heard of ME, and even in the UK I understand they have shifted now to CFS for the most part. I believe we all have the same underlying disease, at varying levels of severity and with various co-morbid conditions. When the CDC knows the cause of CFS, then the name CFS will probably be changed. The best way to make that happen is to find the pathologies behind CFS, and separate those pathologies from all the co-morbid issues.

there are two official names in the uk existing side by side CFS and ME.patient groups are incresingly using only ME in line with the WHO classification.The CDC changed the name from ME to CFS without knowing the cause.Are there comorbid issues? or are they different presentations of the same illness.Are there pathologies or one underlying pathology?.The name was changed according to purely subjective criterea largely for political reasons.The name myalgic encephalopathy is much more representative of the symptom complex certainly in terms of the reported neuroendocrine symptoms

 

[joyscobby]

No medical teams in the US besides CFS doctors have even heard of ME, and even in the UK I understand they have shifted now to CFS for the most part. I believe we all have the same underlying disease, at varying levels of severity and with various co-morbid conditions. When the CDC knows the cause of CFS, then the name CFS will probably be changed. The best way to make that happen is to find the pathologies behind CFS, and separate those pathologies from all the co-morbid issues.

Your statement re the UK is erroneous. ME and CFS are seperatable. You are making a fundemental mistake of assuming that England means the UK. Scotland is part of the UK but has its own devolved government which is responsible for health policy. As has been pointed out in previous posts Scotland is about to publish its final version of its Good Practice Guidelines that seperates out the diagnosis of ME from CFS by using the Canadian Diagnostic Criteria. I have linked to the draft version of this on my previos post but I will put it here once again.

The final version is due for publication May 26 2010

http://mecfsinscotland.blogspot.com/

 

[Adam]

I agree with you about the F word. I was relating my experience in UK, which is typical I think. Those in UK diagnosed originally with ME (prior to 1992?) I assume, will now be referred to as CFS by all doctors save for a few General Practitioners who are not 'in the know' or haven't read the latest NICE guidleines ans still use the term ME.

Whereas in Bonnie Scotland they do there own thing.

 

[vdt33]

Good point. And just because you have remitting MS doesn't mean that you don't have MS.

The common characteristic with MS is the brain lesions seen on scans. The type of symptom pattern then determines which of the (currently) three types you have.

Before brain scans proved the lesions, MS wasn't even MS: it was neurasthenia - the disease of hysterical women (ring any bells?) and yet another scrambled egg of symptoms and diagnoses.

If XMRV turns out to be a biomarker for ME/CFS/whatever, then 'this ailment' may go the same way as MS: classified according to symptomology. It could also be classified according to genetic markers.

***
Thanks, fred, for getting my point!

The difference between ME/CFS and chronic fatigue is that with ME/CFS, there is something ( a virus, toxin) that the body is struggling to get rid of but can't get rid of it. The immune system and central nervous system go into "sickness mode". Like the flu, when you hurt all over, can't think, can barely get out of bed, etc. You have temporarily lost homeostasis in order to defeat the flu virus. With ME/CFS you permanently lose homeostasis. You get the effects resulting from a loss of homeostasis as well as any damage done by the virus. Eventually, your immune system becomes more and more dysfunctional or reacts to the wrong things -- chemicals, foods, other allergies, some autoimmune activity -- and you end up with opportunistic infections and immune deficiency.

Chronic fatigue is caused by something else -- depression, thyroid disease, etc.

When the ME/CFS virus backs off for a while, you get better. When your immune system weakens, the virus flares up.

vdt

 

[Gerwyn]

Gerwyn
what is Bateman's view of exercise?

I only have second hand info CBS would have far more knowledge on this subject than me

 

[kurt]

Your statement re the UK is erroneous. ME and CFS are seperatable. You are making a fundemental mistake of assuming that England means the UK. Scotland is part of the UK but has its own devolved government which is responsible for health policy. As has been pointed out in previous posts Scotland is about to publish its final version of its Good Practice Guidelines that seperates out the diagnosis of ME from CFS by using the Canadian Diagnostic Criteria. I have linked to the draft version of this on my previos post but I will put it here once again.

The final version is due for publication May 26 2010

http://mecfsinscotland.blogspot.com/

Thanks for that link, how interesting they want to define ME as Canadian criteria CFS.

But as for separability, I did not read it carefully, but thought they were equating CFS and ME for practical purposes. This is from the document:

Myalgic Encephalomyelitis/Encephalopathy (M.E.) is a chronic, fluctuating illness,
often referred to as Chronic Fatigue Syndrome (CFS) and sometimes as Post Viral
Fatigue Syndrome (PVFS).

Here is more from that document.

ME/PVFS is classified as a neurological illness by the World Health Organisation (WHO)
(ICD 10 at 93.3) and both the UK and Scottish Governments follow the classifications
set out in ICD 10. Chronic Fatigue Syndrome is a non-specific term encompassing people
suffering from various syndromes of chronic fatigue.
National and international debate is ongoing as to appropriate terminology but for the purposes of
this Statement we will use the composite ME-CFS, the term recommended by the Scottish Public
Health Network in the Scottish Needs Assessment (2009).

So clearly the Scottish govt realizes that while these terms are different by the intended definition, they are confusing in practice so they opt to use both, with the ME-CFS nomenclature. To me that says at least for practical reasons they equate the two names.

Don't misunderstand, I am not being critical and have no interest in debate over this point. Just sharing one person's opinion. I prefer a practical approach which for now equates the two terms ME and CFS.

 

[Gerwyn]

Thanks for that link, how interesting they want to define ME as Canadian criteria CFS.

But as for separability, I did not read it carefully, but thought they were equating CFS and ME for practical purposes. This is from the document:



Here is more from that document.



So clearly the Scottish govt realizes that while these terms are different by the intended definition, they are confusing in practice so they opt to use both, with the ME-CFS nomenclature. To me that says at least for practical reasons they equate the two names.

Don't misunderstand, I am not being critical and have no interest in debate over this point. Just sharing one person's opinion. I prefer a practical approach which for now equates the two terms ME and CFS.

this appears to be the relevant section

ME/PVFS is classified as a neurological illness by the World Health Organisation (WHO)
(ICD 10 at 93.3) and both the UK and Scottish Governments follow the classifications
set out in ICD 10. Chronic Fatigue Syndrome is a non-specific term encompassing people
suffering from various syndromes of chronic fatigue

 

[Andrew]

In the 1980s there was an outbreak of an illness in and around Lake Tahoe. This illness included neurological symptoms. The CDC responded to this outbreak and named this illness Chronic Fatigue Syndrome. Then they took millions of dollars from Congress to study this illness, and presented information about this illness.

In the book 1984, Winston Smith's job is to rewrite historical records so they don't reveal where the government information proved to be wrong. The CDC is doing the same thing. Instead of admitting that they botched CFS research for three decades, they attempt to rewrite history by claiming that the term CFS doesn't apply to people in the Tahoe cohort. And they throw in a reference to ME, even though the CDC removed ME from the list of illnesses that one can be diagnosed with, and they made a choice to use the CFS label instead.

And what's really sad is they are going to get away with this. The DHHS will not call them on this. Because the CDC is not about illness. It is about CYA double-speak politics. And because they never really get busted for this, it goes on and on and on.

 

[CBS]

Gerwyn
what is Bateman's view of exercise?

V99, In order to give an appropriately detailed and accurate response, I;d have to ask her. I suspect that I will have a chance to sit down with her and ask this as well as if she is doing (or has) done home visits.

Thank you, If Dr Bateman sees a heterogeneous group of patients then her opinion on exercise is understandable. Does she see the "classical" ME type patient or are they mostly the higher functioning members of our community?

That is my problem with Fukuka criteria in the absence of PEM which is not mandatory Fukuda cant differentiate ME/cfs from patients with major depression

So you have the situation

Oxford= Fukuda=chronic clinical depression

When are CFS patients not CFS patients?

Jason's demonstration that Reeves' criteria results in a sample with 92% of subjects meeting the criteria for Major Depressive Disorder (not ME/CFS) was quite striking.

Gerwyn, I agree, using the Fukuda criteria without PEM means there's no distinguishing between between CFS and MDD. As for Dr. Bateman on this topic, it's probably best if I quote (probably more of a paraphrase) from be 12/2 presentation. She stated that there are clear CFS/ME cases which constitute a very large percentage of her practice. The most difficult cases are what may be mild/early stage cases of CFS and distinguishing them from the chronically tired. Eventually though those cases separate out, I presume because PEM is persistent and/or amplified.

Again, I expect to have the opportunity to sit down with Dr. Bateman and have this discussion.

 

[Gerwyn]

V99, In order to give an appropriately detailed and accurate response, I;d have to ask her. I suspect that I will have a chance to sit down with her and ask this as well as if she is doing (or has) done home visits.



Gerwyn, I agree, using the Fukuda criteria without PEM means there's no distinguishing between between CFS and MDD. As for Dr. Bateman on this topic, it's probably best if I quote (probably more of a paraphrase) from be 12/2 presentation. She stated that there are clear CFS/ME cases which constitute a very large percentage of her practice. The most difficult cases are what may be mild/early stage cases of CFS and distinguishing them from the chronically tired. Eventually though those cases separate out, I presume because PEM is persistent and/or amplified.

Again, I expect to have the opportunity to sit down with Dr. Bateman and have this discussion.

thanks i'd be interested to know

 

[caledonia]

Before brain scans proved the lesions, MS wasn't even MS: it was neurasthenia - the disease of hysterical women (ring any bells?) and yet another scrambled egg of symptoms and diagnoses.

Actually MS was previously called "hysterical paralysis. CFS/ME was previously called "neurasthenia".

 

[dannybex]

It was only in the next few years after I got sick that there was a push to drop the Immune Dysfunction from the name and destroy all credibility of the patients.

I believe CFIDS and ME are the same disease. I do not believe CFS is. CFS can be caused by many things. Just being chronically rundown is not the same as having immune dysfunction and neurological problems.

We really need to get away from the stupid Fatigue word.

I agree and disagree -- definitely need to eliminate the F-word!

If, and only if they have to use the freakin' 'syndrome' terminology, I'd prefer Chronic Immune Dysfunction Syndrome (CIDS)...a slight improvement over CFIDS, but sitll not good enough.

But a diagnosis of "CFS" these days doesn't automatically equal being "chronically run down", at least in the US. And "ME" or "CFIDS" may just as likely be a result many compounding causes or factors (viral, bacterial, fungal, genetics, environmental (chemical or heavy metal exposures), etc.).

I have a feeling this thread will go on for 70-80 pages...

 

[Victoria]

I agree and disagree -- definitely need to eliminate the F-word!

This discussion is way over my head, but I'm reading anyway.......

I'd just like to suggest we use the word "Exhaustion" instead of "Fatigue" when we talk about the symptoms.

"Fatigue" suggests just plain tired.

"Exhaustion" suggests something far stronger & more debilitating. In fact, when you say it out loud, you will get my drift here.

 

[flybro]

A nonsense note from me.

If we use the word fatigue in the same way as it is used to describe metal fatigue, fatigue woudn't sound so crappy.

If my car had metal fatigue it would be having parts replaced or of to the scrap yard.

I bet if we were robots they would get the 'fatgiue' sorted.

 

[Mithriel]

I was ill before CFS was invented and I was diagnosed with ME. We knew what disease we were talking about and research took off in the early eighties. It was caused by a virus, came in epidemics and sporadically, was neurological and was made worse by exercise.

Then there was a series of body blows.

HIV was discovered and many of the researchers moved to that, where the money was.

The CDC refused to admit that the lake Tahoe outbreak was ME and invented CFS which didn't adequately describe the epidemic that started it.

The experts in enteroviral disease, mainly polio were ageing and no new researchers were interested so knowledge was lost - many of them have struggled on fighting for us until they died.

Wessely and his mates sat down one day, said ME was CFS, which they defined differently from the CDC and instead of laughing at them - you can rename an illness, but rename AND give it different symptoms, I ask you... it was accepted at th espeed of light. They ignored the epidemics and all he previous research and expertise. This was not done on the basis of any new insight, discovery or scientific advance, it was purely political The fact they study a different population from the US studies has muddied all CFS research and confused doctors of good will.

In the UK, ME and CFS are not the same at all. People with ME are told they have CFS, but many, many people are told they have CFS who DO NOT have ME. (It is not exactly the same in the US as their definition of CFS was different)

The UK forums are full of people who do not have ME. They are not less ill - some of them are sicker than the average ME sufferer - but ME - no.

Here in the UK we are always being confronted by people who "had a touch of ME" (ME has simply become the patient's preferred name so doctors will use it.) They will happily tell you how they got better because they tried such and such instead of giving in to it like you did.

Many of the people with CFS get on fine at the clinics and are often part of local groups. They don't think much of activism. I think Wessely is right and most people with CFS will not have XMRV. Every time he changed the definition the numbers who had it went up by a factor of ten so it is possible that only one in a hundred would have had ME in the old days.

Mithriel

 

[Dr. Yes]

from Gerwyn:

The CDC have gone on record as saying they view ME and CFS as seperate illnesses

The CDC has a bankrupt definition of myalgic encephalomyelitis (if they have a definition at all) that they appear to have pulled out of a horse's arse. :horse: <--- It's basically made up, and vaguely describes some sort of specific, possibly degenerative neuromuscular thingy that bears no resemblance to anything in decades of ME research. They of course still use the Reeves' Empirical Definition of CFS. Sooo, according to the CDC, many or most of us do NOT have CFS; in fact we don't really have any defined illness. One big "medically unexplained symptoms" crowd, I guess. "Paging the psychiatry department.."

According to the WHO in England I have a brain disease called ME. In a few years in the US I may be lucky enough to have "benign" myalgic encephalomyelitis. In Canada in a few years I will likely have benign ME too, though I could also have CFS if I preferred to. Right now I'm not sure what I have in the US; it depends on the weather, my doctor's mood, and what he had for breakfast.

 

[Dr. Yes]

Planned Marginalization of CFS in the 'American' ICD

First, for some clarification - it isn't really that the WHO thinks ME and CFS are different diseases; they just don't think CFS is a sufficiently well-described term, and consider ME (which they already had on the books) and even post-viral fatigue syndrome (I don't think anyone knows what exactly they mean by that, but at least the name is clear) to be more valid... I suspect if someone came up with a better disease definition, with more scientific validity, they would adopt it.

The WHO has been the one relatively consistent voice of relative sanity on the issue of definitions in this matter. They had classified a disease known as myalgic encephalomyelitis as a neurological disease. They have a strict rule that no disease can be classified in more than one section, i.e. ME, a neurological disease, cannot also be classified as a psychiatric disease (they made a point of this when Wessely and friends tried to get it re-classified - and claimed that it could be, and basically lied that it had been).

I don't think the WHO liked it when the CDC decided to create their own illness after the Tahoe epidemic, and subsequently watered down the definition of "CFS" further and further (I'm sure they didn't appreciate the creation of the "Oxford Criteria" either). Seeing how unscientific, vague, and confusing this new disease category was, they never accepted "chronic fatigue syndrome" as a legitimate term; essentially they either put it in the index of 'inappropriate names' and said "see ME", or listed it separately in a section for conditions consisting of particular clusters of symptoms (not validly defined 'diseases').

Some countries have been allowed by the WHO to make their own 'clinical modifications' of the WHO classifications for their own purposes. The US has been doing this for a while... Instead of adopting the upcoming ICD-11, we Americans will get the ICD-10CM, which will potentially pose many problems for us; although it will for the first time include "benign myalgic encephalomyelitis" under G93.3 (finally getting in step with the rest of the world), it will specifically EXCLUDE CFS from the neurological disease section (that was the ICD-10CM status as of late last year, anyway):

G93.3 Postviral fatigue syndrome [note: same as ICD-10]

Benign myalgic encephalomyelitis

Excludes1: chronic fatigue syndrome NOS (R53.82) [note: not in ICD-10]

(By the way - the ICD-10 is what most of the world is currently using, but not us Yanks..)


Here is where the next US version (ICD-10CM) will put CFS:

R00-R99 Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (Chapter 18)

R50-R69 General symptoms and signs

R53 Malaise and fatigue

R53.8 Other malaise and fatigue

R53.82 Chronic fatigue, unspecified [note: not in ICD-10]

Chronic fatigue syndrome NOS [note: NOS is new; the listing for CFS in ICD-9 does not say NOS ]
Excludes: postviral fatigue syndrome (G93.3)

There used to be a listing for Chronic fatigue syndrome, post-viral under G93.3 along with PVFS and Benign ME in a previous version of ICD-10 CM (USA). It was removed in 2007, when the new code R53.82 was created for CFS."

(The above is from a document by Ben, which reflects the ICD-10CM proposal through late last year.)

"NOS" means "not otherwise specified"... meaning it isn't entirely clear what it is, but it isn't anything else in the book... in other words we're back to the old CDC business of a 'diagnosis of exclusion', or a negative definition with only one clear characteristic - the "F" word. Will it be more difficult to get your diagnosis of CFS taken seriously by insurance companies and government disability agencies once it has the "NOS" tag? I don't know, but it can't help.

So, basically, CFS is being further and further marginalized in the US versions, while ME as defined in the usual WHO sense is appearing for the first time since the CDC starting rewriting medical history (the current US version doesn't have ME in it at all). However, how many US doctors know what ME is (or "benign ME") such that they could actually apply the new diagnostic label (instead of CFS)? A neurologist I saw recently just looked at me and smiled like I had just made a joke when I tried the term on him; he said "What's that?...Never heard of it." I'm sure he thought I made it up. It also doesn't help that, at least as to my understandng, there are no widely accepted criteria for ME in the biomedical community; definitions exist (Ramsay, Ramsay-Dowsett, etc), but are rarely if ever referred to.

The upcoming Canadian modification of the ICD is quite the opposite; it will include CFS in the neurological disease section under G93.3, along with "benign" ME and PVFS. That's giving CFS more recognition than - as far as I know - any ICD version yet.

As far as the Name Change panel business goes... My understanding is that they wanted to use the term ME but agreed to add the "/CFS" over concerns about creating confusion in research fields (where the term CFS was most often used); the real problem has always been, and remains, the CDC (or whoever they are speaking for)... if they decided to change the terminology and adopted the Canadian criteria of something similar, the research community (not to mention the US government and private insurance companies) would adapt quickly. In biological research these kinds of nomenclature and classification changes happen all the time within a given specialized field, and other fields catch on as necessary.

 

[Otis]

Lots of good thoughts here. A few random comments.

I would like to deep six the F word myself. It's infinitely more foul that that other F word. I've actually told people I have 'myalgic encephalitis'. It sounds like a real disease, WHICH IS WHAT WE HAVE.

I agree that PEM has to included. If ME and CFS are split I will work hard to get the ME tag. If CCC is the standard, that's not an issue for me.

I do get much more concerned when post-viral is a potential dividing line. How we got here shouldn't matter from a diagnosis perspective.

I worry about US (won't speak for the world) doctors being able to make an intelligent distinction. Most couldn't spell Fukuda if you spotted them 6 letters.

Otis

 

[Adam]

I was ill before CFS was invented and I was diagnosed with ME. We knew what disease we were talking about and research took off in the early eighties. It was caused by a virus, came in epidemics and sporadically, was neurological and was made worse by exercise.

Then there was a series of body blows.

HIV was discovered and many of the researchers moved to that, where the money was.

The CDC refused to admit that the lake Tahoe outbreak was ME and invented CFS which didn't adequately describe the epidemic that started it.

The experts in enteroviral disease, mainly polio were ageing and no new researchers were interested so knowledge was lost - many of them have struggled on fighting for us until they died.

Wessely and his mates sat down one day, said ME was CFS, which they defined differently from the CDC and instead of laughing at them - you can rename an illness, but rename AND give it different symptoms, I ask you... it was accepted at th espeed of light. They ignored the epidemics and all he previous research and expertise. This was not done on the basis of any new insight, discovery or scientific advance, it was purely political The fact they study a different population from the US studies has muddied all CFS research and confused doctors of good will.

In the UK, ME and CFS are not the same at all. People with ME are told they have CFS, but many, many people are told they have CFS who DO NOT have ME. (It is not exactly the same in the US as their definition of CFS was different)

The UK forums are full of people who do not have ME. They are not less ill - some of them are sicker than the average ME sufferer - but ME - no.

Here in the UK we are always being confronted by people who "had a touch of ME" (ME has simply become the patient's preferred name so doctors will use it.) They will happily tell you how they got better because they tried such and such instead of giving in to it like you did.

Many of the people with CFS get on fine at the clinics and are often part of local groups. They don't think much of activism. I think Wessely is right and most people with CFS will not have XMRV. Every time he changed the definition the numbers who had it went up by a factor of ten so it is possible that only one in a hundred would have had ME in the old days.

Mithriel

This is a great post Mithriel. It filled in a few gaps for me. The problem I have is I was ill (sudden viral onset and hospitalised for nearly 3 weeks) back in 1996. Hospital Consultants then used the term CFS, adding what we use to call ME. I fit the canadian criterea to a tee. And I guess that is the best way to inform fellow sufferers (in the know), what my condition is.

Would you say that Canadian Criterea is ME?