ME and cfs to be classified as seperate illnesses

[Gerwyn]

This is the content of Jason,s slide on the above subject.

Transition*to*ICD‐10:*Implications*for*ME/CFS*in*the*US

US*Clinical*Modification*of*ICD‐10*is*in*draft*stage,*set*to*be*implemented*in*2013

Classifies*ME*&*CFS*separately

ME*under‐Other*Disorders*of*the*Brain*

G93.3:*Post‐viral*fatigue*syndrome

Benign*myalgicencephalomyelitis*

(excludes*chronic*fatigue*syndrome*NOS*R53.82)

CFS*under‐General*Symptoms*&*Signs*

R53.82:*Chronic*fatigue*syndrome*NOS

(excludes*post‐viral*fatigue*syndrome*G93.3)

Are they seperate ilnesses? what are your thoughts on the matter.

Representatives of the CAA seemed to avoid mentioning any reference to neuroimmuneendocrine symptoms in their recent article

Do they think so too

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

 

[V99]

I think everyone will agree that the symptom Chronic fatigue is not ME, after that it gets messy.

The CDC say CFS is not ME, but you have no other diagnoses so it is, but what else does it include. In the UK we had ME, we then also got CFS, so now we have a large group of different stuff under the CFS/ME banner.

I think we may be dealing with at least 3 seperate things. Chronic fatigue the symptom, one that is the serious neuro immune disease and finally those that are helped by CBT/ GET.

I know many will disagree. There could well be other stuff in there. I like how Scotland has approaching things. Canadian criteria for ME, UK NICE guidelines for CFS. (As I said CFS in USA is not CFS in UK). Obviously some patients will be missed.

 

[pollycbr125]

I think everyone will agree that the symptom Chronic fatigue is not ME, after that it gets messy.

The CDC say CFS is not ME, but you have no other diagnoses so it is, but what else does it include. In the UK we had ME, we then also got CFS, so now we have a large group of different stuff under the CFS/ME banner.

I think we may be dealing with at least 3 seperate things. Chronic fatigue the symptom, one that is the serious neuro immune disease and finally those that are helped by CBT/ GET.

I know many will disagree. There could well be other stuff in there. I like how Scotland has approaching things. Canadian criteria for ME, UK NICE guidelines for CFS. (As I said CFS in USA is not CFS in UK). Obviously some patients will be missed.

I totally agree after becoming ill with this and getting no help whatsoever apart from attempted brainwashing courtesy of the NHS and subsuquently deciding i needed to fully research this illness as the only person who was going to help me was basically myself .

The huge difference in symptoms that folk report who have been diagnosed with me/cfs in my mind shows that we are all not suffering from the same illness.I hear other folk talking and think well hey thats nothing like what im going through . I dont mean to be disrespectful of other folk and their illness but there does seem to be vast differences and for ease of not treating us they have lumped us all together in a huge group of folk under the me/cfs banner .

i have often thought if we were tested more thoroughly many of us would indeed perhaps receive different diagnosis . I do have the signs and symptoms of ME as i have nuero stuff going on too , but then I also have a lot of pain so have i got fibro? then again i have most of the signs and symptoms of lupus? also signs of MS . see where im going with this .

The sooner the UK adopts the canadian criteria and we are all reassessed the better. Ill be quite honest id be quite happy to be diagnosed with something else i might get some treatment then .

The thing is though so many auto immune conditions overlap im sure many are misdiagnosed . there are also several rare weird and wonderful conditions that many doctors would never come across in their lifetime how many folk diagnosed with me/cfs have one of these?

I have signs and symptoms of MS yet have never been offered a brain scan or lumber puncture . My bloods do their own merry little thing half the time ive had some lovely odd results hence the me/cfs clinic were not going to take me at first. I got a clear set of bloods and hey presto as if by magic i was diagnosed with me/cfs . by the way that was 3 years after going round and round on the NHS merry go round .

I was duly diagnosed with me/cfs using the fukuda criteria (though i'm 99% sure id meet the canadian too ) think i ticked every criteria . Naievely i thought i was going to get treatment i soon twigged they were attempting to brainwash me . so we parted company as i hadnt been physically examined or had my bloods checked in the 6 mths since attending the me/cfs clinic . I had told them i was getting worse and picking up every bug going which was ignored . I went back to my docs and had my bloods checked and my white blood cells had changed shape again . I knew my blood wouldnt be right cause of how i felt .

was i then undiagnosed ? no thats it im labelled now so now it doesnt matter what results i get . It really does need changing asap .

 

[Gerwyn]

"ME is not CFS", this is the current CDC position. The paragraph below is from the 'Overview of CFS', a part of the CME course offered on the CDC web site(http://www.cdc.gov/cfs/cme/wb1032/chapter1/overview.html).
"Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings.

The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that is not fully supported in the medical literature.

The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."

 

[caledonia]

How about this? If you fit the Canadian Criteria, you have ME, period. There is no such thing as CFS.

If they can't figure out what you have, then you're diagnosed with Undiagnosed Illness, not CFS.

How often are these criteria reviewed? Too bad the XMRV research is still so new or we could possibly have XMRV/XAND in there as a diagnosis. And there would be a diagnostic test for it.

 

[Adam]

The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."

Irrespective of the case definition no one as far as I know would get a diagnosis of ME in the UK today. I was diagnosed as CFS between 1996 and 2000. I am Canadian Criteria. I have no idea whether or not my doctor used any criteria whatsoever. They merely 'ruled out' MS, cancer etc etc. It's a long time since I had MRI's and lumbar punctures (normal - ha ha bloody ha) and I don't know how much these methods have been refined since 2000, however, there are still no bio markers for 'our' condition. It remains a non - condition as far as the NHS is concerned. We need to get repeating this. And also that the only treatment offered is CBT/GET and in my case, I was once given homeopathy via NHS and told you'll notice you will start getting colds and flu again and that's a sign you are getting well'

LMAO

 

[ukxmrv]

The idea was originally described as a way of spliting "post viral ME and CFS" away from "non post viral CFS".

This is the USA version of the ICD-10. The current other "world" ICD 10 is available on the WHO website

Peter White started talking about it in UK lectures

Here is the current WHO ICD-10 (this is the famous one in which CFS was in an index only so doesn't appear here)

G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis

=========

R53.82 exists today but as

Malaise and fatigue
Asthenia NOS
Debility:
NOS
chronic
nervous
General physical deterioration
Lethargy
Tiredness

Excludes: debility:
congenital ( P96.9 )
senile ( R54 )
exhaustion and fatigue (due to)(in):
combat ( F43.0 )
excessive exertion ( T73.3 )
exposure ( T73.2 )
heat ( T67.- )
neurasthenia ( F48.0 )
pregnancy ( O26.8 )
senile asthenia ( R54 )
fatigue syndrome ( F48.0 )
postviral ( G93.3 )

===============================

So Dr Jason seems to be saying in the USA version of ICD-10 (which has existed for a while but not used in the USA)

G93.3 will stay as it is
The old index of CFS to G93.3 will be dropped
R53.82 will be change to CFS

Does that sound right?

He didn't mention F48 the old "fatigue syndrome" under Neurastenia

==================================

 

[fred]

How can ME and CFS be 'separated' when neither have a consistent definition either together or apart to start with?

The Scottish guidelines, alone, quote eight different definitions of ME or CFS or ME/CFS or whatever.

It's like trying to separate the yolk and the white in a scrambled egg.

Any definition of anything (whether in medicine, commerce, etc.) should start with a set of common denominators or characteristics that 'things' (patients, in this case) can be grouped by.

The name is almost irrelevant to start with and can be created later on to reflect the main characteristics of the definition.

I'd suggest that the most obvious place to start is with the Canadian Consensus document. If you tick all the boxes, then you have 'it', whatever we call it.

If you tick some but not all of the boxes, then you have something that isn't 'it', but perhaps new definitions can be developed based, again, on commonly occurring sets of characteristics.

It has always mystified me why medics don't simply compile a database of characteristics (such as symptoms, test results, family history, etc.) and look for common groupings. It's a pretty common way to define groups of people for marketing purposes and it isn't really rocket science.

 

[usedtobeperkytina]

I think we all have the same thing, but varying symptoms and even varying systems affected. But it all goes back to central nervous system breakdown.

I even think fibromyalgia is the same CNS, just affecting the nerves more than immune system. But again, it goes back to CNS break.

I think the differences between us are minor details. Recent findings, including statements from WPI, say that study results are similar, whether gradual onset or sudden.

I see much more of us that is the same rather than different. Additionally, there are stages.

Based on this, I would favor Neuroendoimmune disease and then list them as "A" "B" "C", etc, the way they do hepatitis.

Tina

 

[Carrigon]

I never had a CFS diagnosis, I was diagnosed with CFIDS. I have chronic immune dysfunction. I also got an advanced Lyme diagnosis and a ME diagnosis and a "civilian with Gulf War Syndrome" diagnosis and a micoplasma diagnosis. As well as POTS/NMH and Hashimoto's.

When I was diagnosed with CFIDS, there was no such thing as just CFS, at least it was not the same thing. 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.

 

[V99]

I may sound mad, but I agree with everyone here. I don't believe CBT/ GET have any effect on the actual disease, nor do I believe that Chronic fatigue should be enough to get you a diagnosis of ME CFS. Jason has the right idea. To be frank I would be happier if they focused biomedical research on those who are sickest, but no government seems interested in the biology. Madness!

 

[leelaplay]

I find the idea of separating the 2 a divide and conquer strategy.

Do you know what Dr Jason says about this?

I know some strongly believe that ME is a separate disease, but I'm not familiar with research that supports that. The Canadian Consensus Document clearly states that ME and CFS are the same disease, and that "CFS and FMS often closely connect and should be considered to be "overlap syndromes". It also says that Me/CFS symptoms change daily and over time, and that no one will have all of the symptoms at one time.

 

[vdt33]

I think part of the confusion arises because this is a progressive illness and a remitting/relapsing illness. And the illness progresses at different rates. Some people progress much more slowly than others. Some have longer partial remissions than others. Some have more frequent partial remissions or cyclical partial remissions (good days, bad days).

So what symptoms you have and how bad they are can depend on what stage you are in. This is characteristic of other illnesses too -- Multiple Sclerosis, for example.

vdt

 

[CBS]

Gerwyn,

Thanks for starting this thread. In her December 2nd presentation, Dr. Bateman says that in her Fatigue Consultation Clinic she sees a range of fatigued patients but that in her mind there are CFS(ME) patients and there are chronically fatigued patients (emphasis on little 'c' and little 'f' for this group). Dr. Bateman's practice is primarily devoted to CFS patients (she states that to her they are very separate groups) but I suspect that of the chronically fatigued patients she sees, many are those 92% of Reeves sample that has major depression, are over worked or over stressed, etc.

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.

 

[fred]

I think part of the confusion arises because this is a progressive illness and a remitting/relapsing illness. And the illness progresses at different rates. Some people progress much more slowly than others. Some have longer partial remissions than others. Some have more frequent partial remissions or cyclical partial remissions (good days, bad days).

So what symptoms you have and how bad they are can depend on what stage you are in. This is characteristic of other illnesses too -- Multiple Sclerosis, for example.

vdt

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.

 

[Gerwyn]

I find the idea of separating the 2 a divide and conquer strategy.

Do you know what Dr Jason says about this?

I know some strongly believe that ME is a separate disease, but I'm not familiar with research that supports that. The Canadian Consensus Document clearly states that ME and CFS are the same disease, and that "CFS and FMS often closely connect and should be considered to be "overlap syndromes". It also says that Me/CFS symptoms change daily and over time, and that no one will have all of the symptoms at one time.

my understanding is that the US IC10 will seperate ME and CFS under different codes.This is likely to happen in Austrailia and Scotland also.

Whether they are seperate diseases or not I really dont know.

It is possible to have a diagnosis of CFs without any neuroimmune endocrine symptoms whatsoever.

Are they seperate conditions or is one a more severe presentation of the other?

Is there in mind independent terms any such thing as CFS?

Is the relationship between the politically motivated label and the illness objective in any sense.

It would be a major suprise if it was.In my view fatigue is a stupid and highly innapropiate term and is only one of a constellation of symptoms that sufferers find debilitating With some the disibility still is purely cognitive for example.With others the disability stems from a "fried" autonomic nervous system.With other sufferers its like being totally disabled by chronic severe infulenza.A great many have all of these problems.At best chronic fatigue syndrome is a misnomer and at worst is a totally meaningless diagnosis in no way related to the aetiology of the condition.

 

[Jerry S]

I think it was unfortunate that the Canadian Consensus chose the acronym ME/CFS for the disease, rather than simply ME. But, they and the Fair Name committee chose it, so I use it.

The CDC's CFS, as defined by 1994 Fukuda, lacks sufficient specificity to really define anything, as Leonard Jason demonstrates.

 

[vdt33]

Some people have immune systems that are better able to keep the virus from replicating or to keep the virus (s) in latency or in hiding more of the time. They may have a mild case, but how long will it remain mild (years, decades) ? But they still meet the Canadian Consensus -- just a much milder case -- because the immune system's constant battle against the microbe(s) disturbs homeostasis (balance of hormones, neurotransmitters, etc.) and disturbs central nervous system functioning. Some people's immune systems become overwhelmed and they have very severe symptoms. But their immune systems are strong enough to keep them alive. Then there are those that succumb. Eventually, organs become damaged.

 

[Gerwyn]

Gerwyn,

Thanks for starting this thread. In her December 2nd presentation, Dr. Bateman says that in her Fatigue Consultation Clinic she sees a range of fatigued patients but that in her mind there are CFS(ME) patients and there are chronically fatigued patients (emphasis on little 'c' and little 'f' for this group). Dr. Bateman's practice is primarily devoted to CFS patients (she states that to her they are very separate groups) but I suspect that of the chronically fatigued patients she sees, many are those 92% of Reeves sample that has major depression, are over worked or over stressed, etc.

Thankyou if Dr bateman sees a heterogenous group of patients then her opinion on excercise 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 FUkuda criterea 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.

 

[kurt]

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.