M.E. CFS differences!

[Francelle]

There is a certain M.E. website that goes on, ad infinitum, about the difference between M.E. and CFS, suggesting that CFS doesnt cut it because it simply isnt the same disease. I have great difficulty getting my cognitively fatigued brain around their arguments as they seem to be so circular.

How can nomenclature differences essentially invalidate the sickness experience of many people who are diagnosed with either of these two conditions, when it may simply be a matter of accepted terminology in one country compared to another?

Does no one for example have neurological symptoms in countries where it is called CFS and everyone has neurological symptoms in countries where it is called M.E.? I tend to think not! Do those of you who have a CSF diagnosis have neurological symptoms?

A stated inference of that group's premise seems to be that, XMRV/HGRV will not be found in M.E. patients because if it has been found in CFS patients (which according to them is NOT the same disease) it will not be found in M.E. pts. I just dont get it!!!

Dr Byron Hyde a Canadian doctor holds to this view or similar about the CFS/M.E. distinction I believe, and I cant get my tired head around the dichotomy.

 

[ukxmrv]

This is a really hard topic to tackle Francelle and I don't think that there is any easy answer. Opinions vary and we don't have hard data. Most of the old ME doctors who could diagnose the disease are dead or retired.

First of all, one cannot get an accurate diagnosis from the internet. We only get opinions and people's experience.

I was diagnosed with ME before CFS was invented. I had an opportunity to see or correspond with some of the ME doctors at the time. I've also been able to read articles and go to talks that aren't available on the internet to people looking at the history. So much has been lost.

There are, for example, patients still alive who were diagnosed by Ramsay who don't meet the CDC criteria for CFS. Dr Hyde is just one source of information and an opinion.

Research just dried up into ME so we don't have the data comparing a group of ME patients (as per Ramsay) to a group of CFS patients (say Fukuda criteria). The problem is more complicated than "just" ME vs CFS. It's also different criteria of CFS vs CFS vs CF. Dr Jason has done work on this.

An old fashioned ME doc could examine 10 CFS patients and then maybe diagnose all 10 with ME, on the other hand it could be 4 or 5. This is because the criteria are different. It doesn't mean that the remaining 5 are any less disabled or sick, merely different. The ME doctors of my time didn't do many lab tests, they looked for signs and a history of the disease they knew.

The author of the website you mentioned now knows that at least 1 person with a pre-CFS ME diagnosis is XMRV+ and only time will tell how many others are. We need to see all the survivors of the epidemics labeled as "ME" and accepted by ME doctors of that time, tested for XMRV and then we'll know. It could have been a different virus or even a different retrovirus.

XMRV+ and old fashioned ME

 

[heapsreal]

my understanding is that there are certain neurolgical tests done that arent done by most docs and requires a specialist in these tests. ME also doesnt require a 6 month waiting time and fatigue isnt necessary for a diagnosis of ME. Viral onset is also required. It is quite similar but after recently reading the diagnostic criteria for ME, i did notice a difference, but like i said its hard to tell the difference but xmrv may hold the key.
http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf

 

[Mark]

I think it's a very strongly held belief that ME and CFS are separate and that the really valid point is about the way that the definitions have been broadened out from a tight and specific set of criteria. It makes far more sense to study the most severe patients and a well-defined core group as a separate entity - the problem comes when a lot of other people have a set of symptoms which seem awfully similar, and there seems to be no obvious place to draw the line and separate the conditions.

I think this "certain ME website" (and I personally see no reason not to name and link any external website when discussing it, even if controversial by the way, unless worried about attracting their attention perhaps...) make some very valid points. I have immune abnormalities, but I haven't had severe neurological symptoms - I've had considerable brain-fog, memory loss, OI, and dizziness, but a great deal of that turned out to be effects of sleep disturbances which I've now got more control over, and my symptoms were a long way from the most severe cases I've read about. It's kind of insulting to suggest that I have the same thing as someone who can't tolerate any light and heat at all, and is profoundly disabled by other neurological symptoms, and I don't have any problem with them saying to me: "What you have is nothing like what I have!" Then again, I've met people who have or who did once have very severe neurological symptoms who are also among the small number of people who also have my own rare, signature, "impossible" symptoms.

So perhaps the problem can be summed up that many people like me see my illness as being in many ways like ME, and perhaps connected to it; and that some people diagnosed with ME also see that connection, whereas others don't...but that we all see the definition of the condition being broadened out so widely that it is very likely catching people with completely unrelated conditions - and so many of them as to completely obscure the reality. And somehow this spreading of the definition has followed the spreading of the epidemic, and each time the goalpost is moved and the pitch is widened, potential understanding is lost. There's a kind of Catch-22 about it all actually...

So I can totally understand why anyone would want to draw a line, and we do need to define subgroups, so I think there is value in the message of this point of view. I am very open to the possibility that they may be dead right, and there are certainly a lot of smart and experienced people in that camp. The problem I often see though, is that a lot of arguments around this subject are about names and labels, and really such things are artificial constructs that hold different meaning for different people, and describe a reality we don't really understand at all - so it doesn't do to be dogmatic about it. If one were to be strict about myalgic encephalomyelitis, perhaps you couldn't really prove you have it until an autopsy reveals inflammation of the spinal cord...

I do think that what seems to be going on with XMRV is the completely unexpected finding that here's a fundamental enabler for neuro-immune abnormalities, and everyone with all of these conditions has got XMRV (or maybe some will turnt out to have something else fulfilling the same functions). So nobody ever expected a single biomarker for any one of these wastebaskets, but then it turns out to everyone's surprise that maybe there is something that is common across all the wastebaskets! It makes perfect sense that XMRV or something like it can unlock the potential for a wide range of other pathogens to cause a wide range of problems, but this "big picture" vision has proved too shocking for people who were focused on particular lines of research.

I think that an awful lot of people in relevant research fields has had - and will have - a hard time understanding some of the implications of XMRV because they seem to contradict the way things were pointing within their own research. But from a more detached and generalist perspective, none of this is too surprising in a multifactorial situation. A massive part of the problem is just the way humans are with words - we give them more reality than they deserve. Whilever we are talking about syndromatic conditions, we just don't know whether what we are describing as one entity really has any meaning at all. When the answers come in, I expect those answers to all run right across all the boundaries that have been established for naming the various conditions. And by the way, think what a logical mockery that makes of, say, looking at a study and saying "oh, only 60% of CFS have this, so it isn't the cause of CFS"...that sort of logical non-sequitor (actually, a series of meaningless statements) seems very typical to me.

 

[alex3619]

Hi everyone, I am basically with Mark on this, but I would like to add: it is the science that will ultimately prove what is ME or CFS or HGRAD or whatever, we wont have much say in it. Until ME has a specific repreducable biomarker that is not in dispute, and preferably is linked to a known cause, all the debates will run around in circles - so choose whatever you like.

There are two points that I think are critical however. First, large scale studies, whatever their aims, should identify subsets, including ME (CCC, Ramsay, something else?) and run separate analyses subset by subset. The second is that when we talk about CFS studies, it is not enough to say CFS. Too many vested interests (psychobabblers mostly) don't properly identify Oxford or Empirical definitions when drawing conclusions. Many advocates keep pointing this out, but we need to keep hammering it home until the debate is over. So when I talk about CFS, I mean a specific CFS, usually CCC these days, although I sometimes refer to others in specific research for historical reasons. When I use ME I use it by itself. I try to no longer talk about ME/CFS except to highlight this problem, although sometimes my brain is so fried that I get this wrong.

Something I think most should keep in mind is that while it is likely that ME has a specific viral cause/trigger, it is increasingly possible that many with strictly defined CFS (CCC etc) might have the same issue, just slightly different symptoms. People with "chronic fatigue" and no other symptom belong only with a diagnosis of idiopathic chronic fatigue until we have better science. A specific and final definition of ME will never be universally accepted until we have an undisputed (preferebly causal) biomarker.

The Uk is of course a special case, because their definition is local and not an internationally recognised definition. I think that should be hammered home consistently, worldwide, and we should never except the claim that the Oxford definition is an internationally recognised research definition. This should be challenged everywhere and every time it is used in this way.

Bye
Alex

 

[illsince1977]

XMRV+ and old fashioned ME

How and when were you tested? Were you part of the WPI UK study?

-Susan

 

[ukxmrv]

No Susan, I don't think anyone from the WPI UK study has their results yet. I have been privately tested by VIP.

 

[Melodie]

Alex, do you know if there is an Australian definition of M.E. and if so please could you provide a link?
Cheers.

 

[Dainty]

Haven't thouroughly read all posts, but in answer to the OP...

I live in the USA, diagnosed with CFS, I match CCC and have very disabling neurological symptoms. At the time I was diagnosed (4 1/2 years ago) I was informed that M.E. is simply what CFS is called in parts of the world other than U.S. and Canada. I had a friend in Austrailia with the diagnosis of M.E., and between us was the understanding that our illnesses were the same, as our symptoms matched, and she also was a pretty severe case (life-threatening).

So in my mind, the terms are still interchangeable. It's confusing to me when people try to separate the two because it implies that I somehow don't have significant neurological impairment because my diagnosis is CFS, because in my country no diagnosis of M.E. exists. I despise the title of CFS as much as the next PWC so I understand some people wanting to distinguish between the two titles and separate themselves from the wimpy one, but doing so amongst fellow sufferers creates the feeling that you're separting yourselves from us as well rather than merely the unfortunate title we were diagnosed with.

As I understand it, until very recently the CDC didn't get into the whole CFS/M.E thing, they only talked about CFS. APparently int eh last month or so they've been slyly working in the notion that all the XMRV stuff is actually M.E. and not CFS, maintaining that their notions on CFS still hold true because of them being separate diseases.

I really can't keep track of it all anymore, so I don't even try to.

 

[Sing]

I recently spoke to the head of the Canadian advocacy group of www.mefmaction.net She told me that her view is that for now it is best to keep the broad designation, ME-CFS, as it is too soon, scientifically, to distinguish them categorically. Further, to try to do so now would also have the effect of eliminating a great deal of valuable research done on "CFS" before this distinction was made. As one of the leaders who brought together the international panel of experts to create the Canadian Consensus Definition in the first place, she is definitely in favor of the CCD criteria being used as the common definition for research until science amends it in any way. At that point, the CCD will of course be adjusted to fit the facts. Sub-groups may then be delineated, etc. But to try to separate people now into those with ME vs those with CFS is, in her view, premature. My impression of her view was that trying to separate them now would be confusing and harmful to the needs of the field.

 

[slayadragon]

I think it's a very strongly held belief that ME and CFS are separate and that the really valid point is about the way that the definitions have been broadened out from a tight and specific set of criteria. It makes far more sense to study the most severe patients and a well-defined core group as a separate entity - the problem comes when a lot of other people have a set of symptoms which seem awfully similar, and there seems to be no obvious place to draw the line and separate the conditions.

I think this "certain ME website" (and I personally see no reason not to name and link any external website when discussing it, even if controversial by the way, unless worried about attracting their attention perhaps...) make some very valid points. I have immune abnormalities, but I haven't had severe neurological symptoms - I've had considerable brain-fog, memory loss, OI, and dizziness, but a great deal of that turned out to be effects of sleep disturbances which I've now got more control over, and my symptoms were a long way from the most severe cases I've read about. It's kind of insulting to suggest that I have the same thing as someone who can't tolerate any light and heat at all, and is profoundly disabled by other neurological symptoms, and I don't have any problem with them saying to me: "What you have is nothing like what I have!" Then again, I've met people who have or who did once have very severe neurological symptoms who are also among the small number of people who also have my own rare, signature, "impossible" symptoms.

So perhaps the problem can be summed up that many people like me see my illness as being in many ways like ME, and perhaps connected to it; and that some people diagnosed with ME also see that connection, whereas others don't...but that we all see the definition of the condition being broadened out so widely that it is very likely catching people with completely unrelated conditions - and so many of them as to completely obscure the reality. And somehow this spreading of the definition has followed the spreading of the epidemic, and each time the goalpost is moved and the pitch is widened, potential understanding is lost. There's a kind of Catch-22 about it all actually...

So I can totally understand why anyone would want to draw a line, and we do need to define subgroups, so I think there is value in the message of this point of view. I am very open to the possibility that they may be dead right, and there are certainly a lot of smart and experienced people in that camp. The problem I often see though, is that a lot of arguments around this subject are about names and labels, and really such things are artificial constructs that hold different meaning for different people, and describe a reality we don't really understand at all - so it doesn't do to be dogmatic about it. If one were to be strict about myalgic encephalomyelitis, perhaps you couldn't really prove you have it until an autopsy reveals inflammation of the spinal cord...

I do think that what seems to be going on with XMRV is the completely unexpected finding that here's a fundamental enabler for neuro-immune abnormalities, and everyone with all of these conditions has got XMRV (or maybe some will turnt out to have something else fulfilling the same functions). So nobody ever expected a single biomarker for any one of these wastebaskets, but then it turns out to everyone's surprise that maybe there is something that is common across all the wastebaskets! It makes perfect sense that XMRV or something like it can unlock the potential for a wide range of other pathogens to cause a wide range of problems, but this "big picture" vision has proved too shocking for people who were focused on particular lines of research.

I think that an awful lot of people in relevant research fields has had - and will have - a hard time understanding some of the implications of XMRV because they seem to contradict the way things were pointing within their own research. But from a more detached and generalist perspective, none of this is too surprising in a multifactorial situation. A massive part of the problem is just the way humans are with words - we give them more reality than they deserve. Whilever we are talking about syndromatic conditions, we just don't know whether what we are describing as one entity really has any meaning at all. When the answers come in, I expect those answers to all run right across all the boundaries that have been established for naming the various conditions. And by the way, think what a logical mockery that makes of, say, looking at a study and saying "oh, only 60% of CFS have this, so it isn't the cause of CFS"...that sort of logical non-sequitor (actually, a series of meaningless statements) seems very typical to me.

Mark, do you think that you might be able to contact some of the people on that "certain ME website" and then go visit them at their homes?

I am going to posit that if you lived where they were living, you'd be as severely affected as they are within maybe a couple of weeks.

If the only reason that they're sicker than you are is because they're living in a really bad place and you're living in a much better one (and attending to things like your clothing), does that mean that they have a different disease than you do?

I've never been able to figure the answer to that out. But it quickly became clear to me when I started visiting ME/CFS patients in the U.S. that no matter how bizarre their symptoms were, none of them had anything that I wouldn't have had, if I'd been living in their environments.

Finally I decided that it was time to stop visiting sick people and to make an effort to find some recovered ones. Mike Dessin's house turned out to be really good, so I stuck around there for a few extra days babysitting his dog even when he was out of town.

If you've not done the "visiting the sickest of the sick" exercise yet though, you should maybe try it once. It might be really instructive for you.

Just be prepared to decontaminate fast (with at least a change of shirt and some water to dump on your hair) and you should be fine.

Best, Lisa

 

[gregf]

The simple answer is that they are the same illness.

ME is the original name given to our illness when it was first documented in the 1950s and treated as a real physiological illness.

When the CDC decided our illness was psychiatric they invented the name CFS.
CFS has had 20 years of papers linking it to psychiatric illness so when people
here say CFS it fills me with a sense of hopelessness that we can be united.

The only good reason to say CFS is when writing something that has a future legal
implication for court cases. That ensures the CDC and Wessley can be held responsible
for everyone with a CFS Dx. Even then we should say ME/CFS.

The CDC definition is that if you have muscle or neurological symptoms than you have ME. But this is just a ploy to escape justice and we should not take it seriously.