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ME and cfs to be classified as seperate illnesses

Discussion in 'General ME/CFS News' started by Gerwyn, Apr 21, 2010.

  1. Adam

    Adam *****

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    What the Fukuda!

    You crack me up Otis. Your input on Paging Dr Yes thread would certainly add another strain of humour to our broad church laughter denomination.
  2. Orla

    Orla Senior Member

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    Bateman and Exercise

    Some quotes from her literature (overall she makes some good points bit also some terrible ones in my opinion. Far far too much emphasis on "deconditioning" which has not proven to be a factor in the perpetuation of ME/CFS).


    This would drive me nuts if my doctor was on at me about conditioning and exercise every visit, or at all to be honest. If patients are already at or even inclined to be over their threshold, they should not be encouraged to increase "conditioning", as it is likely to make them worse and in a position where they end up doing less in the long-run.

    Does she actually think we don't want to exercise??

    The bit about atrophy is, I think, rubbish. If I am wrong one of the scientific people can correct me. Atrophy is very rare in ME/CFS. ME/CFS patients, even bedbound ones are not generally totally immobilised, so the comparison to the person with their arm immobilised is false.

    In a survey of 420 ME patients only 3 had Paresis (partial loss of movement) and Muscle wasting.

    Reference E. G. Dowsett et al, Myalgic Encephalomyelitis - a persistent enteroviral infection. Postgraduate Medical Journal, 1990, 66, 526-30.
    (Cited in Living with ME - The Chronic/Post-Viral Fatigue Syndrome (New Edition), Dr Charles Shepherd 1996. Cedar Books.

    Some more (sort of a weird mixture of good and bad, but far too much emphasis on exercise as therapuetic I think, for which there is little or no good evidence).

  3. Orla

    Orla Senior Member

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    I think is an important point. Personally I feel well covered as I have CFS and ME on my notes :Retro wink:

    Orla
  4. fred

    fred The game is afoot

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    Any disabling nerve disease used to be called neurasthenia, including MS. You'll find some neurologists still refer to this old term (thankfully, dismissively).
  5. Dr. Yes

    Dr. Yes Shame on You

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    Some more bits that Americans in particular will find interesting, also from Lesley Ben:

  6. Robin

    Robin Guest

    It kind of begs the question: has anyone been diagnosed in the US with ME?
  7. Wonko

    Wonko Senior Member

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    erm.....

    so the US has no policy of refusing to test for anything once it looks even vaguely ME/CFS/PVFS like?

    as under that definition no one in the UK could ever get a diagnosis of ME (or PVFS) as no tests are permitted - and any private ones are ignored - as policy
  8. Dolphin

    Dolphin Senior Member

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    I think they might have got this from Peter White who they were (openly) close to. He claims pretty much nobody has M.E. now - M.E. was a term to describe the people who were in the Royal Free. (See RSM Conference, London, 2008).
  9. Mithriel

    Mithriel Senior Member

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    Post Viral Fatigue Syndrome

    ME was originally called "benign" because, unlike polio, it did not kill patients in the initial phase of the illness i.e. during the epidemics. It was disliked very much and most of the experts didn't use it.

    In the early eighties it waswidely believed that the epidemics were caused by Coxsackie B but other viruses also seemed to be implicated.

    I think it was Mowbray (which was strange as he was the one who did the VP1 tests which found evidence of enteroviral particles in the tissues of ME patients) who said that a virus may have caused ME but it was gone, only its effect was left so he renamed the disease Post Viral Fatigue Syndrome.

    This might have been just after CFS was defined. There was no internet then so we did not know much about what was happening in the US. It was the first I had heard of fatigue being involved and it shocked me as I had never complained of fatigue - malaise and flu like symptoms yes, but never fatigue.

    I have no idea of what was going on in the background psyche footprints may have been all over it but suddenly this was the official name. Ramsays's publishers refused to print his book unless it was called PVFS rather than ME (though later editions might have been different as he was furious.)

    Mowbray disappeared from the scene soon after and his VP1 test died until Chia brought it back.

    But the WHO included it because it was the new "official" name for ME until SW et al got their hands on it and changed the definition as well.

    Post Viral Syndrome was the uncontroversial name for the thing you can get after flu, say, where you can feel ill for up to two to five years. This has now been subsumed into CFS and accounts for many of the recoveries.

    I think ME doesn't have a proper definition because they didn't it that way in the sixties. A disease was described and that was that. I think there might have been a big conference where a lot of evidence was put together, not sure off hand, but there was a concensus decision about what it was.

    I think the CCC may be as good as we are going to get. They may be more accurate than ME if XMRV is involved. ME is enteroviral, the evidence for that is huge. It may be what you get if you have XMRV and an enterovirus.

    Mithriel
  10. Otis

    Otis Señor Mumbler

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    Thank that's a great insight for ME. :Retro smile:

    Otis
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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    What Andrew said.

    Some random thoughts.

    We can yell from the rafters here in US that we have ME, and main street doctors will look at us confused. Until research leads government to better word(s), we will have CFS. I don't have the energy to advocate for a name change. My doctor knows I don't have a psychological illness. She runs tests and addresses symptoms as they come up. But all of her sincere efforts are of little effect. My symptoms seem much more responsive to my pacing, avoiding stress, getting enough effective sleep, not getting another virus and not eating sugar or caffeine. She gives me synthroid, cortisol and ambien. Honestly, the only one I can see that helps is ambien. (Someone would have to kill me to get my Ambien) The other two, well, I'm not so sure. And I am even concerned the cortisol is hurting.

    If this were two years ago, I could get all into advocating for a name change, to neuroendoimmune dysfunction. I just don't like ME or CFS. Both have baggage. And neuroendoimmune dysfunction is accurate and not belittling. But soon, most of us will get a new name anyway. I don't know if XAND will stick or if something else will come up. But I am confident in the WPI research. So I want to put my efforts into awareness and research. I guess getting the names right just seems like a big, big battle that would require a whole lot, and hey, it was tried before. And I just think it is futile at this time. We have lots of othr battles at this time.

    Also, I don't like "fatigue" either. But, it is a medically recognize symptom for biological illnesses, such as flu, as well as psychological ones and body overuse. But just because it is associated with others, doesn't mean that doctors dismiss it. Fatigue is symptom of cancer, lupus, sleep apnea and many other biological illnesses. I think the word "exhausted" is worse. Fatigue is a medical term. Whereas, exhausted is what people say after they hiked a long like. "I'm so exhausted," is often heard after someone hiked a mountain. They don't usually say, "I am so fatigued." If you tell a doctor you are exhausted all the time, he will likely right in his notes "fatigue" because exhausted is not a symptom of illness. Now, because "fatigue" is a medical term, it has been adopted by fake conditions to give them a medical sound. One is "driver fatigue". But this is effect of healthy person driving too much. It is not an illness. So while "fatigue" is a medical term for feeling because of illness, it also includes feeling tired from doing too much. There isn't a term to distinguish what we have from tiredness and exhaustion. So I prefer "fatigue," which has a medical association when compared to "exhausted" and "tired" which is associated with feeling from too much activity. Although, I don't like it either.

    ME and CFS are labels. The illness is the same, but differing levels, differing stages, etc. I can see why CDC put it must last at least six months. If you have a virus and recovery is prolonged, then it might last a month or two to get the remnant fatigue gone. But what happened in Incline Village and Lyndonville and happens all over US and other countries is not just lingering fatigue from an infection you had a couple of months ago. It is much, much more.

    In US, ME is CFS, as far as in the minds of doctors and CDC. Or, actually, better said, ME doesn't exist. As Andrew said, the illness in Tahoe included neurological problems and that illness was named CFS. So there is no distinction here. We all have CFS in the US, according to the way doctors diagnose.

    And, the CDC diagnostic criteria for CFS does include cognitive dysfunction, including impaired memory or concentration as a primary symptom for CFS. It also includes PEM. Under other common symptoms it includes visual disturbances (blurring, sensitivity to light, eye pain or dry eyes.)

    If I understand right, in doing their Georgia and Wichita study, they asked questions in their survey that would included many people with other illnesses. Someone correct me if I am wrong, but I think they used less of a standard in the survey compared to the diagnostic criteria they list.

    I don't have the answers for how to distinguish all of this, depression fatigue from CFs / ME or post viral fatigue from others.

    What I do know is that if you narrow CFS (or ME, or whatever label you want to give this illness) to only those with severe symptoms, you will eliminate many, who like me, have the illness but whose symptoms vary. As has been said before, it varies in individuals and varies according to stage of illness. I gradually got sick with fatigue and other symptoms creeping in more and more over three years from 2003 to 2006. Then in one night, I plummeted and pain started. This is when FM symptoms started. The fatigue was severe and did not ease for up. I was bedridden for four days at a time, to store up enough energy to have enough for running errands for four hours on the fifth day. And then, it was back to the bed. Of course, there were cognitive problems. I did not start to see improvement until nine months later. Since then, I have gradually improved, until a relapse this past October.

    Whatever you want to call this illness, I have it. And for three years, my symptoms were mild, but gradually increasing. We can't exclude these people for it is just as harmful for them to not recognize the seriousness of their disease as it is for those of us with severe condition to have it belittled.

    Tina
  12. Gerwyn

    Gerwyn Guest

    I think that CFS is nothing but a politically constructed label with no objective relationship to any underlying pathology.

    Myalgic Encephalopathy is a better name because a functional encephalopathy would account for the neuroendocrine symptoms involved any give Drs a theoretical model which will,in their eyes,give the disease credibility.

    Without a plausible theoretical model the majority will continue to catagorise the condition as psychogenic.

    It is not their fault.If one considers things from their perspective all other conditions without a theoretical mechanism which underpins them are psychiatric.

    Psychiatry is completely a theoretical relying purely on categorising patients according to predetermined criterea and subjecting them to drugs,CBT or worse.

    The Oxford and CDC labels are brainchilds of psychiatrists so If you fit into their predetermined boxes you have a psychiatric condition they have chosen to call CFS.

    The only way of escaping that "trap" in my view is to adopt a name whch links the condition to the various symptomatic presentations in a way that Drs can understand and hence more likely to invoke the belief of a condition with an organic cause.
  13. Mithriel

    Mithriel Senior Member

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    Myalgic encephalomyelitis is a disease recognized by the WHO. Recent autopsies have confirmed that inflammation of the spinal cord exists. Encephalopathy was meant to appease the establishment (psyches in reality) but it was never going to work, even if it was a more accurate name. All it did was lose the link with all the research and expertise that had been built up for ME.

    Neuroimmune disease is a good name and I would be happy to have that diagnosis.

    One myth is that ME is a severe form of CFS. That is not true. People with ME can be high functioning in a similar way to MS. Variation of symptoms is a hallmark of ME and that variation can include being symptom free for months and then having a bad episode. I prefer the term flare up rather than relapse.

    The neurology of ME is more than just cognitive problems and includes double vision, speech problems and paralysis, transient and more long term which is not covered by CFS.

    ME as you can see form its name has severe muscle pain as part of it - my consultant who diagnosed me had been at the Royal Free and he said patients had screamed when you touched them. The number of people diagnosed with FM as well as CFS makes me wonder if they are misdiagnosed because CFS doesn't have that level of pain included.

    Even it XMRV is proven and we all have XAND, ME will still e a discrete set of symptoms that give a form of the disease within that.

    It was a well described illness that separated out people with a discrete problem based on thousands of patients and the experience of lots of doctors. This is totally opposite to what happened with CFS. To say they are the same just feeds into the psyches word view. You may well have ME but be misdiagnosed with CFS but every case of CFS is not ME.

    This is not to give them a hierachy or to put anyone down. You can't have Lyme disease without the virus, even if it is XMRV that is causing chronic Lyme. I am not autistic but that might be part of XAND as well.

    Denying the history of ME won't help anyone even if it becomes part of a different classification as science moves on.

    I don't know if it is a worthwhile step to campaign for ME, we are more likely to get neuroimmune disease accepted or XAND if that is proven.

    On another topic, I object to fatigue being so prominent, not because of the word itself, people with MS admit to fatigue, but because it is not central to our illness. I don't get fatigue at all. I usually stop because of pain long before I get tired in any way.

    I think people say they are fatigued because they have been told they are but it is not the best description of what happens. I think I will have to stop typing now and it could be called fatigue but actually my fingers are getting so inaccurate I have to correct every word and I am finding it hard to concentrate and my back is on fire.

    Mithriel
  14. Gerwyn

    Gerwyn Guest

    hi Mithriel,
    I agree 100% I feel awful long before it get tired cognitive collapse would be a much better term accompanied by an arrat of focal neurological symptoms.I sreamed when touched as well.fatigue is in no way central to my illness either When you talk about neuroendoimmune symptoms oh boy I had the lot and still have many. I dont have post exertional fatigue.I have systems shutdown paralysis memory loss even if i am unlucky seisures.i also lose ability to recognise people. that is just as likely to kick in after cognitive effort as physical.
  15. Julia Rachel

    Julia Rachel

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    I am not sure what is what anymore. However....I think what is going to happen as a direct causation of the discovery of XMRV....is that there will be 2-4 subsets of CFS/ME patients...... subset 1 & 2 combined will be approx. 70-80% of the CFS/ME patient population and will be those patients who have "viral induced CFS" = (i.e. VICD/CFIDS) in this diagnosis....EBV, HHV-6A, CMV, Micoplasma, etc....are diagnosed..... subset 3 would be viral induced CFIDS/VICD plus XMRV.......subset 3 will be about 20-30% of the patients who do not have viral induced CFS/ME, they test negative for all viruses. The names for these two-three groups are up in the air. Then...there is the 4th subset...Fibromyalgia. Of course....one can have Fibro as well as one of the other 2-3 subsets, as we all know.....and I experience.
  16. Gemini

    Gemini Senior Member

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    Gerwyn,

    I agree with you.

    I was pleased to read in the just released AABB Blood Safety "XMRV Fact Sheet" this sentence:

    "CFS (also called, more descriptively, myalgic encephalomyelitis)...."

    Apparently someone on the Blood Safety Committee agrees with you as well.

    Gemini
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Yes, I look forward to XAND 1 (immune system, neurological, endocrine and fibromyalgia pain), 2 (immune, endocrine, neurological), etc.

    Of course, the idea there may be many different XMRV strains might confuse the whole number thing also. They might do the numbers according to the strain rather than the damage.

    I think, though, we can all agree that neuroendoimmune dysfunction is one we can all support. It was Dr. Nancy Klimas who suggested it to the name change committee. Missed opportunity.

    I have been saying that ME is not a disease diagnosed in US. I would like to ask, has anyone gone to a doctor in US and been told they have ME and be given that code and it be turned into the insurance company that way? Has anyone gotten disability in US under diagnosis of ME?

    I hope this doesn't sound arrogant, as Americans are often thought to be arrogant. Please understand, it isn't my arrogance I am describing here, but others. I don't see something in UK spreading from there to here. Right now, UK is instead following the US CDC lead. When the autopsy was done on Sophia Mirza, it was ruled renal failure as a complication of CFS. And doctor had to defend himself as to why he said "CFS" instead of "ME". He said CFS is now the accepted term for the illness. Obviously this was a knowledgeable doctor who does not believe this illness (ME or CFS, whatever you call it) is psychological. Do we think that the government health agencies are going to come out with a criteria difference for CFS and ME? No way, too complicated. So much simpler to claim they all have CFS (what they think is the new US created name for the same old illness) and send them to the psychiatrist. Now isn't that simple? And do we think the CDC or NIH is going to abandon the name they chose to go to the old one the UK used? No, government here thinks CDC at US is the center of the universe, the birth of all intelligence relating to science.

    (As a side note, this may actually be attitude of other countries, as actually shown by the fact other countries are following the lead of US CDC in the name. And by the way, a similar thing has happened in legal issues, with courts of other countries often looking to the US Supreme Court for legal precedents.)

    It's not right. But I am afraid US colonialism and the spread of American culture seems to influence science as well. The other factor is the drive for simplicity in what is a very complicated syndrome. I heard an interview with a man who wrote a book about how American view of psychological diseases is having negative effect on other countries. The primary example given was annorexia. In Japan, a woman died from it. News media looked for information on it. They found all this info from US research. Problem was, he said, the annorexia of Japan is very different than what is described in US research. So the news media suddenly imported into Japan a disease they did not have there. Again, all because of the name and overriding influence of American scientific research. This is harmful, also, he said, because cultural differences mean people with similar illnesses need to be treated differently. Some cultures consider an illness to be independent thing. Others consider illness to be illness for all of family and community. With this difference, comes a difference in what will make for improvement. (Talking psychological here.) Yet, with spread of American ideas of defining illnesses, also comes the American ideas of how to treat it.

    All this disagreement and dividing these sick people (back to talking about our illness) requires too much judgment and thinking for doctors and scientists. It's just so much easier to say, "Fatigue for six months, .... you have CFS. Go see this psychiatrist." Or even if it is a doctor that doesn't believe it is psychological. "Fatigue for six months.... here, take this sleep aid, quit your job, start pacing, take these pain meds, call me if anything changes. Nothing else I can do."

    Tina
  18. Mithriel

    Mithriel Senior Member

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    In the Sofia Mirza case Chauhdhri (sp) wanted to call it ME it was the other doctor who wouldn't. Many doctors here would prefer it to be known as ME.

    I read somewhere that SW etc thought they would get money from the CDC if they were researching CFS.

    The name is used as a weapon against us.

    Mithriel
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I noticed this also. I also notice the blood people in Canada and others saying a CFS person would likely be too ill to be donating blood anyway.

    I think this means XMRV is being accepted more and more in association with CFS (ME, whatever). They would be slanting their comments the other way if they didn't think there is validation in XMRV. Maybe these believers were here all along, but kept their mouths shut to save their careers.

    But I can't help but wonder if we are soon to get some more XMRV news.

    Tina
  20. Dr. Yes

    Dr. Yes Shame on You

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    Hi Tina

    This, as I posted earlier, could change as the upcoming American ICD version, ICD-10CM, will include ME under G93.3 along with postviral fatigue syndrome, but will specifically EXCLUDE CFS from that category. That means CFS will not be classifiable in any way as a neurological disease. This in sharp contrast to the upcoming Canadian version, which will include CFS in the neurological disease section, and the ICD versions used in most other countries, which will include CFS in the index and basically say "colloquial.. see 'ME'".

    I and others asked it a few months ago on the DSM thread, but no answers... I would guess NOT, though, as the current American ICD version does not include mention of 'ME' as we know it. But like I said above, the next version will, and I for one will then try to get my diagnosis changed to ME accordingly - unless, of course, some better term comes along...

    Well, we are! :Retro tongue:

    The UK is not the reason ME is used in the ICD coding - the WHO is (they make the ICD coding, though certain nations have been allowed to modify it to some extent). They have recognized ME for decades and coded it as a neurological disease. ME actually appears to be gaining ground as an ICD-codeable disease, as I stated above. The UK has only been following the CDC's lead for political reasons (the motivations of the Wessely 'school'); other nations differ on the matter, but researchers have indeed been using the term CFS most often because of the CDC criteria (though they generally only use Fukuda, not the current CDC criteria).

    See Mithriel's comments above about the Mirza reference.

    Yes, though I think they have more political considerations than expediency alone. (You may have been implying that anyway, of course.)

    Leonard Jason was actually the one most energetically promoting that name change idea (he favored that or CNDS - with "chronic" and "syndrome" added on the sides). The CFS Name Change Advisory Board as a whole clearly preferred the term ME (though with "encephalopathy" instead of "encephalomyelitis"), but decided to add the "CFS" (thus the ungainly "ME/CFS") to avoid creating problems with disability and medical insurance claims. Apparently, they recognized that:

    (http://www.cfs-healing.info/name-change.htm)

    As you say, it will be interesting to see if and how XMRV research affects the diagnostic labeling and so on of ME/CFS.

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