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Is it worth explaining the difference between ME and CFS to the public??

Discussion in 'Action Alerts and Advocacy' started by Tulip, Apr 9, 2011.

  1. Bob

    Bob

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    It's a good question.

    I don't have an answer.

    It seems impossible, to me, to compare Byron Hyde's definition of ME with the CCC, as Hyde's definition is so technical.

    It's easier to compare Ramsay's definitions with the CCC, but I haven't done that yet. That's a project that I want to do soon, for myself.

    Some people say that you can't make comparisons as the two diseases are totally and utterly different, but others say that ME is a subset of the CFS diagnostic criteria.

    In simple terms, the CDC's CFS criteria are a wide, catch-all, set of criteria that selects patients with the symptom of fatigue, whereas ME criteria select patients with various neurological and immunological symptoms.

    When I look at the specific differences between various criteria, I'll post my observations here. (for insearchof to take apart! ;))
  2. rlc

    rlc Senior Member

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    Hi Bob, Thanks for setting up the Wiki page!! Its looking good, with regards how to categories the articles, my feeling is to try and keep it solely for ME, so everything pre 1988 is fine because CFS hadnt been invented, there are a few later articles like the 2002 Richardson one etc which are written by people who know the difference between ME and CFS, but a lot of the research after 1988 has been done on mixed groups of people which causes a lot of confusion, so its probably best to leave them out if theres any uncertainty.

    Heres a whole lot more articles which are all free to read, and Ive got a lot more to come once Ive got them all organized.

    All the best and thanks!!!!!!!!!!!

    BRITISH MEDICL JOURNAL LONDON SATURDAY OCTOBER 19 1957 AN OUTBREAK OF ENCEPHALOMYELITIS IN THE ROYAL FREE HOSPITAL GROUP, LONDON, IN 1955 BY THE MEDICAL STAFF OF THE ROYAL FREE HOSPITAL http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962472/pdf/brmedj03125-0013.pdf

    An outbreak of encephalomyelitis in the Royal Free Hospital Group, London, in 1955 NIGEL DEAN COMPSTON M.A., M.D., F.R.C.P. Royal Free Hospital, London http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425309/pdf/postmedj00263-0019.pdf

    AN OUTBREAK OF ACUTE INFECTIVE ENCEPHALOMYELITIS IN A RESIDENTIAL HOME FOR NURSES IN 1956 BY DENNIS GEFFEN, O.B.E., M.D., D.P.H. Medical Officer of Health to the Metropolitan Borou(gh of St. Pancras AND SUSAN M. TRACY, M.R.C.S., L.R.C.P., D.P.H. Deputy Medical Officer of Health to the Metropolitan Borough of St. Pancras http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962504/pdf/brmedj03125-0022.pdf

    EPIDEMIOLOGICAL ASPECTS OF AN OUTBREAK OF ENCEPHALOMYELITIS AT THE ROYAL FREE HOSPITAL, LONDON, IN THE SUMMER OF 1955 BY NUALA CROWLEY, MERRAN NELSON AND SYBILLE STOVIN Bacteriology Department of the Royal Free Hospital School of Medicine, Royal Free Hospital, Gray's Inn Road, London, W.C. 1
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2217874/pdf/jhyg00143-0110.pdf

    'Epidemic neuromyasthenia' at the Hospital for Sick Children, Great Ormond Street, London M. J. DILLON M.B., M.R.C.P., D.C.H. The Hospital for Sick Children, Great Ormond Street, London
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425321/pdf/postmedj00263-0022.pdf

    BRITISH MEDICAL JOURNAL 3 JUNE 1978 Epidemic myalgic encephalomyelitis http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1604957/pdf/brmedj00128-0006b.pdf

    Epidemic Neuromyasthenia Outbreak in a Convent in New York State Robert M. Albrecht, MD, MPH, and Virginia L. Oliver, MD, MPH, Albany, NY, and David C. Poskanzer, MD, MPH, Boston http://jama.ama-assn.org/content/187/12/904.full.pdf

    Postgraduate Medical Journal (November 1978) 54, 731-736 'Epidemic neuromyasthenia' in Southwest Ireland JOHN P. CORRIDAN M.D., F.F.C.M.I., D.i.H. Department of Social and Preventive Medicine, University College, Cork http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425333/pdf/postmedj00263-0028.pdf

    Postgraduate Medical Journal (November 1978) 54, 768-770 Epidemiological approaches to 'epidemic neuromyasthenia': syndromes of unknown aetiology (epidemic myalgic encephalopathies) MAIR THOMAS M.B., B.Sc., F.R.C.Path., M.F.C.M., D.P.H. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425311/pdf/postmedj00263-0065.pdf

    The British journal of clinical practice Vol 12 No 3 march 1958 Benign Myalgic Encephalomyelitis J.F Galpine MD. FRCPE, DPH Whitley Hospital Coventry http://www.meresearch.org.uk/information/keypubs/Galpine_BrJClinPract1958.pdf

    THE LANCET LONDON : SATURDAY, MAY 26, 1956 A New Clinical Entity ? http://c4jrme.110mb.com/melibrary105.htm

    Epidemic Neuromyasthenia: Outbreak among Nurses at a Children's Hospital M. J. DILLON, W. C. MARSHALL, J. A. DUDGEON, A. J. STEIGMAN British Medical3Journal, 1974, 1, 301-305http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1633383/pdf/brmedj02176-0019.pdf

    Clinical and biochemical findings in ten patients with benign myalgic encephalomyelitis A. M. RAMSAY M.A., M.D. A. RUNDLE D.Sc., M.R.C.Path. Infectious Diseases Department, Royal Free Hospital, London, and St Lawrence's Hospital, Caterham http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425703/pdf/postmedj00252-0008.pdf

    Benign Myalgic Encephalomyelitis Icelandic Disease in Alaska J.B Deisher MD http://www.hhs.gov/advcomcfs/benignmyalgic.pdf

    Epidemic Neuromyasthenia J. GORDON PARISH Department of Rheumatology and Rehabilitation, St. Mary's Hospital, Colchester, Essex
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1610570/pdf/brmedj01975-0054b.pdf

    Electro-encephalographic investigations in myalgic encephalomyelitis G. PAMPIGLIONE M.D., F.R.C.P. R. HARRIS M.D., D.C.H., M.R.C.P. J. KENNEDY M.B., Ch.B. The Hospital for Sick Children, and The Royal Free Hospital, London http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425335/pdf/postmedj00263-0049.pdf

    Icelandic disease (benign myalgic encephalomyelitis or Royal Free disease) A M RAMSAY E G DOWSETT J V DADSWELL W H LYLE J G PARISH Benign Myalgic Encephalomyelitis Research Group http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1607215/pdf/brmedj00463-0058b.pdf

    Sensory and cognitive event-related potentials in myalgic encephalomyelitis Deepak Prasher, Alison Smith, Leslie Findley
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1014138/pdf/jnnpsyc00513-0063.pdf

    BRITISH MEDICAL JOURNAL LONDON SATURDAY OCTOBER 19 1957 EPIDEMIC MYALGIC ENCEPHALOMYELITIS http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962482/pdf/brmedj03125-0047.pdf

    Post-infectious disease syndrome B.A. Bannister The Royal Free Hospital Department of Infectious Diseases at Coppetts Wood Hospital, Coppetts Road, Muswell Hill, London N1O IJN, UK. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2428896/pdf/postmedj00187-0079.pdf

    BENIGN MYALGIC ENCEPHALOMYELITIS Goodwin CS. Lancet Jan 3rd 1981, p 37
    http://www.lymediseaseaction.org.uk/conf2006/wright/text7.html

    Epidemic Malaise DAVID C. POSKANZER. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1700311/pdf/brmedj02288-0066c.pdf
  3. Bob

    Bob

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    Thanks rlc, great stuff!

    Thanks for your thoughts on how to organise... I'll consider what you've said.

    Thanks for the links! I'll get through them slowly.

    BTW, is it ok if i repost your post on the wiki discussion page, to make things easier for me?
  4. Mark

    Mark Acting CEO

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    The selection criteria were, in essence, CDC Fukuda AND CCC AND severe disability, and it seemed to take people a few months to begin to absorb and accept that this was indeed what the WPI had said and that this wasn't discrepant at all...but that's a separate issue and your main point was about whether the WPI studied ME epidemics.

    This confusion over the "outbreaks" issue was discussed here in great detail at the time. Unfortunately it would be a tough ask to track down the relevant threads, but I do have a clear recollection of what the conclusion of that discussion was.

    The confusion seemed to come from a comment in the Science paper over a phrase along the lines of "...collected from clinics in outbreak areas...". This comment was then misinterpreted/misreported, and during a period when the WPI were undergoing some intense scrutiny over everything they had said, several critics claimed that there was an apparent discrepancy between comments that the WPI had made about the cohorts. In fact, the WPI clarified the issue, and explained further that the samples had been collected from about 10 areas across the US, and that (most of?) these areas were areas where CFS outbreaks had occurred, but that also in some cases the patients turned out (when unblinded, and to the WPI's surprise) to be international patients visiting those clinics.

    As with every criticism of the WPI at the time - which were hotly debated here - it turned out that what the WPI had said was accurate and that the criticisms claiming apparent discrepancies were based on misinterpretations or assumptions about the meanings of the WPI's language.

    This analysis emphasises how important it is to be clear and referenced when making an allegation such as the one you make here, rlc. Your post doesn't seem to reference the alleged "lie" and you ought to be able to put a clear series of quotes on that in order to make the claim. And if it were possible to do so, then this would surely have been done by now: there are enough people opposed to the WPI that such a series of quotes would be out there if the case you're making here had solid evidence behind it.

    You said:

    Do you have any reference or quote for one of the WPI's "continually made claims about having blood samples collected by Dr Peterson from previous confirmed ME epidemics" ?

    If you did, then having been through this type of allegation against the WPI often enough here, I feel confident that you will find that the wording of the WPI was correct as stated, and that somebody's misinterpretation of those words is responsible for the discrepancy you claim.

    As I've described above, the WPI's findings were based on testing samples from (paraphrase) 'areas where outbreaks had occurred' - and then, from clinics in those areas.

    If you are going to accuse them of lying, then you really ought to reference a specific quote of something they said which was untrue. More than 18 months after the Lombardi paper, I am still waiting for somebody to do that successfully...


    As regards your scepticism about the apparent ability of the WPI to find something that others cannot, I would point out two factors.

    Firstly, that numerous other labs have published findings of detecting XMRV, including at least 3 US labs (one of whom noted the difficulty in detecting it and that it wasn't found at the normal concentrations expected), one German lab, a Japanese group, a Chinese group, and tentative findings from a Spanish group (whose funding has since been withdrawn, I believe); a Swedish study also detected XMRV in one of the 3 samples provided to them by the WPI. So it wouldn't be true to say that the WPI are the only ones who can find it, though it's true that there are many labs who have not found any XMRV with the techniques they have used...most recently Dr Singh whose results were "very confusing indeed" when they were first unblinded last year, and took more than 6 months before they became a rather less confusing "0/0"...

    Secondly, that the WPI worked on viral and XMRV detection in ME/CFS for about 3 years before the Lombardi paper was released in Oct 2009, and that their techniques were considerably refined during that period and have still not been fully replicated by any other lab.

    Finally, I'll also note the recent paper by Switzer et al. at the CDC, which detected XMRV in prostate cancer cell tissue, apparently fully accepted XMRV as a human infectious retrovirus in those patients, and noted that XMRV was not detectable (by them) in the blood of those patients, but only in cell tissue. So we now seem to have confirmation from the CDC that XMRV is indeed a novel human retrovirus infecting some patients in a way that is hard-to-impossible to detect in the blood: it therefore still seems quite plausible to me that the WPI's techniques for detection are succeeding where others fail, but only a full replication study could answer that question, and nobody's holding their breath waiting for that to happen...
  5. rlc

    rlc Senior Member

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    Hi Mark, heres the reference to the WPI claiming to have samples collected by Dr Peterson

    Dr. Peterson has a repository of samples from the original out break in Incline Village, Nevada which also includes longitudinal samples taken from patients from the 1980's through 2005. None of these samples were used in the XMRV study.

    http://www.wpinstitute.org/research/research_biobank.html

    They say The WPI repository samples came from patients who live in many different locations around the US. Physicians who contributed patient samples include: Dr. David Bell, Dr. Paul Cheney, Dr. Daniel Peterson, and Dr. Eric Gordon. Other individual patient samples came from individuals who became ill while living in California, Wisconsin, South Dakota, etc.

    So therefore this statement by Dr Mikovits

    To find the retrovirus, Mikovits and her team studied documented cases, such as CFS outbreaks in a symphony orchestra in North Carolina and in Incline Village, Nev.

    We found the virus in the same proportion in every outbreak," she says. But how are people getting this retrovirus?

    http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus

    Is not true, and in the part of the world I live in saying something thats not true is called a lie.

    The fact that they back tracked later and changed their storey months after, only after being questioned about it. Instead of immediately letting the world know what Dr Mikovits said in the Science article wasnt true, just leaves me with a very sceptical view of what their saying as it has done with a large amount of other people.

    Selecting people using two very different diagnostic the CCC and Fukuda which are very different is as unscientific as it gets! And neither of these criteria defines ME, and will always diagnose a large number of people with all kinds of different illnesses as having CFS. As is being shown by the work of Dr Hyde, Dr Mirza and the recent NHS study, if anyone is ever going to get anywhere with research then they need to stop using the woeful diagnostic criteria, and employ some highly qualified diagnostic experts who will consult with the likes of Hyde and Mirza to find out how its done. Instead of wasting every bodies time and what little money is available testing people who all have different illnesses!

    Id also like to point out that the WPI recent publication in which their know saying that measuring Cytokines in people with a failed XMRV test proves that the patients have CFS and XMRV is causing it, is also incredibly bad science, because changes in cytokine levels are found in thousands of different diseases including a large amount of those misdiagnosed as CFS, and you could just as easily say based on their findings that XMRV causes Major depression, as you could say it causes CFS. It is common knowledge in the medical and scientific community that Cytokines are unspecific markers found in thousands of conditions and there is nothing exclusive about them to CFS, as can easily be found by typing the names of illnesses and Cytokines into Google

    A meta-analysis of cytokines in major depression.
    http://www.ncbi.nlm.nih.gov/pubmed/20015486

    Effects of sleep and sleep loss on immunity and cytokines
    http://www.ncbi.nlm.nih.gov/pubmed/12401464

    Sleep Deprivation and Activation of Morning Levels of Cellular and Genomic Markers of Inflammation
    http://archinte.ama-assn.org/cgi/reprint/166/16/1756.pdf

    Balance of inflammatory response in stable gingivitis and progressive periodontitis lesions http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809628/

    Cytokine profile in coeliac disease.
    http://www.ncbi.nlm.nih.gov/pubmed/10219772

    Serum cytokine levels in infectious mononucleosis at diagnosis and convalescence. http://www.ncbi.nlm.nih.gov/pubmed/9711920

    Candida albicans stimulates cytokine production and leukocyte adhesion molecule expression by endothelial cells
    http://iai.asm.org/cgi/content/abstract/64/7/2609

    Inflammatory Cytokine Production Predominates in Early Lyme Disease in Patients with Erythema Migrans http://iai.asm.org/cgi/reprint/71/10/6051.pdf

    A prospective study of inflammatory cytokines and diabetes mellitus in a multiethnic cohort of postmenopausal women.
    http://www.ncbi.nlm.nih.gov/pubmed/17698692

    [Cytokines and lupus].
    http://www.ncbi.nlm.nih.gov/pubmed/9092358

    Cytokines and coronary artery disease: the state of the art.
    http://www.ncbi.nlm.nih.gov/pubmed/18520532

    Cytokines in multiple sclerosis: from bench to bedside.
    http://www.ncbi.nlm.nih.gov/pubmed/15866318

    Exactly the same applies to NK cell dysfunction; it is again caused by a vast amount off different conditions and one night without sleep will cause NK cell dysfunction http://www.ncbi.nlm.nih.gov/pubmed/8621064

    People with a ME, CFS or CFIDS diagnosis have been since 1988 and still are, getting blatantly false information from scientists and so called CFS expert doctors, which doesnt even come close to being based on easily proven scientific reality, How many thousands of people have been charged for Cytokine and NK cell tests, that prove nothing whatsoever except that your sick which you know before you have them done. There found in so many conditions that their diagnostically useless!!!

    Personally I think that the WPI could make things a lot easier for every one if they softened their stance from were right and your wrong. And instead said we dont think theres contamination in are lab, but we may be wrong and invite the like of Coffin and Singh etc to spend some time at their lab checking for contamination if they find it then everyone will know it was contamination and people can move on to other areas of research that hold promise like Enteroviruses. If they dont find contamination then they can all work together redoing the tests by the WPI methods and see what they come up with. The WPIs present stance seems to be in grave danger of antagonizing the rest of the worlds Retro virologists community who have been studying this. And no matter what happens with XMRV if things dont change to a less confrontational attitude, no matter what they find in the future other scientists are likely not to want to be involved with them, or their work.

    Personally I think that this tread started by Tuliip is incredibly important because it is raising the awareness that ME is not CFS and that the CFS diagnosed group contains large numbers of misdiagnosed people with well over a hundred different conditions. And it is only by advocating on the basis of getting all these different illnesses separated and everybody getting their correct diagnosis that any progress will ever be made. All research is presently a waste of time and money because its being done on people with very different illnesses as if they all have the same thing. And the belief that everyone has the same illness is exactly what the likes of the CDC and the Wessely School want everyone to believe.

    All the best
  6. Boule de feu

    Boule de feu Senior Member

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    Thank you for the info, rlc.
    Before medication, mine were so bad. I was afraid to fall asleep.
  7. rlc

    rlc Senior Member

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    Hi Boule de Feu, glad to hear youve found some medications that work for you!!! From what Ive read it sounds terrible, constant night terrors, not too surprising though if theres an Enterovirus effecting peoples brains. I just wish the powers that be would get their act together and start properly researching ME and start finding some proper treatments for all you people with it!

    All the best
  8. rlc

    rlc Senior Member

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    Hi Bob, regards, BTW, is it ok if i repost your post on the wiki discussion page, to make things easier for me?

    Everyone has my full permission to copy and past anything that I have written, if they think it will help anyone else, to any where on the site or anywhere else on the internet where it might help someone!!!

    All the best
  9. Mark

    Mark Acting CEO

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    I'm sorry rlc, but what you are saying here about Dr Mikovits and the WPI just doesn't make any sense. I can't even unpick the logic of what you are trying to say, and it in no way justifies your claim that Dr Mikovits or the WPI lied.

    OK: fine: so the WPI claim to have samples contributed by Dr Peterson (and others) in their biobank. In the quotes above, they say:

    - Dr Peterson has a repository of sample from Incline Village.
    - That repository also includes samples from patients taken from the 1980s to 2005.
    - None of these samples (the samples from Dr Peterson's repository) were used in the XMRV study.

    - The WPI also have a repository, which includes samples contributed by Dr Peterson.

    Note that there is no claim here about what was used in the (Science) XMRV study, except to note that samples from Dr Peterson's own repository were not used in the Science study.

    Note first that the only statement from Dr Mikovits here is a partial quote by the Scientific American journalist saying that "We found the virus in the same proportion in every outbreak". The rest of the "statement by Dr Mikovits" is actually an interpretation of her words by that journalist.

    What the journalist says is that "to find the retrovirus" (note that this may very well not be referring to the Science paper itself but to the work that the WPI did before the Science study), Dr Mikovits and team "studied documented cases, such as CFS outbreaks...in Incline Village, Nev".

    So in this quote, the journalist is saying that Dr Mikovits studied cases "such as" CFS outbreaks...in Incline Village and "found the virus in the same proportion in every outbreak". Note that the latter part of this quote is given without its context, so we really don't know what Dr Mikovits was actually claiming here - except that they studied a number of outbreaks (possibly as part of the Science study, possibly before, possibly both), and found the virus in the same proportion (roughly, presumably) in each of the outbreaks.

    So in summary of that: what all of this means is that the journalist has understood (rightly or wrongly) that Dr Mikovits and team studied a group of patients or samples from Incline Village and found XMRV in them - whether this study was part of the Science study or not, we can't tell from the 11 words attributed here to Dr Mikovits.

    I don't even know - still - what you are saying that Dr Mikovits said which was untrue!

    Boiling down what you have said above, your 'argument' runs like this:

    - The WPI claim to have some samples in their BioBank that were contributed by Dr Peterson
    - The WPI also state that Dr Peterson has a bank of samples collected from Incline Village
    - The WPI assert that no samples from Dr Peterson's own bank were used in the (Science) XMRV study

    - A journalist said that Mikovits and team studied outbreaks such as Incline Village.
    - Dr Mikovits is quoted as saying "...we found the virus in the same proportion in every outbreak..."
    - Therefore the latter statement is a lie by Dr Mikovits.

    I just can't even find a way to make this argument of yours into a sufficiently meaningful statement to refute it! It doesn't even make sense.

    To try to help with the confusions/assumptions you may be making:
    - What a journalist says is not necessarily an accurate reflection of what they were told
    - Dr Mikovits' quote is partial and does not state that she studied patients from Incline Village
    - The study looking for XMRV by the WPI was not necessarily just the study done in Science
    - When the WPI say they used no samples from Dr Peterson's own bank in the XMRV study, that doesn't mean that they can't have samples in their Biobank from Dr Peterson, and it doesn't mean they can't have studied any patients from Incline Village looking for XMRV, and it doesn't mean they can't have studied any patients from Dr Peterson looking for XMRV before they conducted the Science study.

    You seem to have just placed a series of incorrect interpretations on what you have read, made assumptions about what they imply, taken that together with another flawed interpretation of yours of what a journalist said Dr Mikovits did, and somehow turned that into an argument alleging that Dr Mikovits and the WPI lied.

    The best I can say is that you are in good company: you take my mind back to October 2009, when an army of illogical sceptics and naysayers descended on the WPI, picked every word they said apart, misinterpreted and misunderstood what they had said by placing their own interpretation on their words, based on their own prejudices, sowed the seeds of confusion, and then accused the WPI themselves of being dishonest when in fact it was the critics' own skewed perceptions that meant they were unable to read words and understand what they actually said, rather than what they thought they meant or wanted them to mean.

    So I'm afraid, you still have nothing here, and I am not surprised because nobody has managed to demonstrate that anything the WPI have said is false, though many have tried...


    Now you reference the Science 'article' - you mean the Lombardi paper I guess, not the Scientific American article, though it's quite unclear and you haven't quoted anything from the Science article.

    But anyway, there was no 'backtracking' or 'changing of the story', just a series of explanations and clarifications for people who had made incorrect assumptions and misread or misunderstood the wording of the Science paper. The process left me with a very sceptical view of the scientists, commentators and critics who were making these unfounded criticisms (and spreading a lot of dirt) about something they clearly didn't understand.

    More illogical nonsense. The patients all satisfied BOTH Fukuda AND CCC, and this was merely stated that they all did. It was also stated that they all presented with severe disability. In fact I don't think the actual selection criteria were ever made entirely clear; all that was stated was that all those patients studied did fit all of these diagnostic criteria. I think you need to consider the concept of subsets and note that what was stated was that the group studied were all patients who fitted all the major existing definitions of CFS. In any case, the study claimed to be a study of CFS patients, so whether their criteria defined ME is not a point they emphasised themselves, and whether their patients were ME patients or not, I don't think anybody knows at the moment; what is known is that they were all very sick and fit all of the definitions of CFS.


    Without knowing about the work you're referring to, here at least I can agree, that much more thought is needed about how cohorts are defined, and what group of patients are studied, particularly using diagnostic experts to define the cohorts, and bearing in mind the likelihood of the existence of overlapping subsets of conditions in the study design. Incidentally, the people I've seen emphasising that issue most strongly have been the NIH 'State of the Knowledge' Workshop (where it was a major theme), Dr Leonard Jason, Dr Vernon of the CAA (who also criticised the WPI, and many other studies, over exactly that point), and of course Phoenix Rising.

    I'm afraid this comment is again just more lazy thought and illogical reasoning.

    What the WPI are looking at - like others studying cytokine expression in people with CFS and related neuroimmune disorders - is a pattern of cytokine expression: a signature. Of course changes in cytokines are known to exist - in almost every disease I would imagine - but it is the signature patterns of a variety of conditions that are of interest, and the wPI are claiming, I presume, that they have identified a cytokine profile that is related to XMRV infection. There's nothing unreasonable about that - and citing a whole list of papers listing other illnesses where cytokine levels have been studied is hardly an argument for saying that cytokines ought not to be studied.

    It's rather like saying there's no point in studying heart rate patterns in any given condition, because everybody has a heart. Again, I'm sorry, but your point is just illogical.


    Indeed: again, exactly the same applies: just because other people may have NK cell dysfunction is not a reason not to study it!


    Again, nonsense. Having firm evidence that you have NK cell dysfunction or abnormal cytokine levels is both a diagnostic clue for the physician and a means to demonstrate to authorities and doctors that you are physically ill, should they question that. Just because they aren't a specific marker for ME, CFS, CFIDS or WTF doesn't mean you shouldn't have the tests done and investigate your pathology! On that argument, since there is no specific definitive diagnostic marker available, you would presumably say that we shouldn't have any tests done.

    There's quite a bit of innuendo in this and it's not based on anything I've ever seen from the WPI, though the accusation is typical. All they have ever done is defended their own findings. They found something, they believe it is true, and they have defended their findings robustly when challenged. There's no reason why they should roll over and give in unless and until they are shown to be wrong. Given the extraordinary and unfair vitriole that has been hurled at them, and the illogicality and unfairness of so much of the criticism, I really haven't seen anything from them that classifies as a 'confrontational attitude' - quite the reverse in fact: they have just defended themselves. And if XMRV works out, then what other people think about their attitude won't matter a damn.


    Back to ME vs CFS...

    Since you return now from criticising the WPI to discussing the distinctions between ME and CFS, I'll respond to what seems to be the state of play on this thread...because whilst I think a lot of progress has been made, I'm not convinced that the formulation you give here is sufficient for further study of CCC CFS patients who do not fit the criteria for historical ME...

    I agree that this thread is a very important discussion, primarily because arguments amongst ourselves and a failure to campaign together on issues of common interest are extremely damaging to all of us. Whatever our beliefs - and they are all no more than beliefs without evidence - about the true nature of the ME, CFS, and ME/CFS populations, there is a very strong sense in which we should consider ourselves to be "all in the same boat", because we have been lumped together, with broadly similar and yet distinct illnesses, which are not being researched or treated, and our fates are intertwined whether we like it or not: we have to understand each other to move forward.

    I'm quite open to the "wastebasket" analysis, and the idea that there are subsets seems clearly correct, in some sense at least. Whether there really is any unifying medical factor to ME and CFS is actually completely unknown, however, and it is still perfectly possible that there may be. It is entirely possible, for example, that we all have conditions that are mediated by a variety of retroviruses which have similar effects. There is no doubt, of course, that many of us have undiagnosed conditions. But whether all of us have conditions that are known and that could be diagnosed is, logically, very questionable.

    So in the interests of pursuing consensus, please let's put unfounded allegations about esteemed researchers 'lying' to one side and try to be a bit more logical.

    There is still quite a bit to be hammered out here, it seems to me, and I would highlight the following point from what you said above:

    "ME is not CFS and that the CFS diagnosed group contains large numbers of misdiagnosed people with well over a hundred different conditions."

    Now it may well be true that there are over a hundred different conditions that people who are diagnosed with CFS actually have. That is indeed a crucial campaigning issue, and it is a major thing that we should highlight from the PACE trial results, actually: around 75% of patients referred to that study were said to "not have CFS", in which case the question arises: What did they have? Why were they diagnosed with CFS? And should not patients with CFS therefore receive much more attention to determine what they do have? The evidence for that argument, from the PACE authors themselves, is now compelling: we should receive more tests, more referrals for expert diagnosis, and much more effort into determining what our illness is, instead of being dumped in the wastebasket of CFS.

    All can agree on that.

    What is certainly not proven, however, is that people with a pattern of illness similar to CCC CFS do not have a condition that is the same as, or similar to and related to, ME. Given that the precise cause of ME remains unknown, it's entirely possible that the historical definition is incomplete, and that people with very similar symptomology may have a variant of the same pathology, indeed that seems very likely. It's also very likely indeed that a significant proportion of people diagnosed with CFS, whether by CCC or otherwise, are suffering from a condition that is not known to medical science at present.

    In the absence of any evidence otherwise - and there certainly isn't any - then the possibilities mentioned in my previous paragraph remain, and it does seem to me that those wishing to draw a sharp line based on the historical ME definition, and claim that everyone on the other side of the line has undiagnosed known conditions, need to be very careful indeed with their language when describing CFS patients who do not fit the historical diagnostic criteria for ME.

    I have no problem whatsoever with well-defined cohorts, and the historical definition of ME seems to me as good a place to start as any. I have no problem with saying that CCC-defined research cohorts should be screened in any well-defined way that is proposed, to distinguish those in the study who have ME as historically defined; it's also right that those cohorts should be extensively screened by expert physicians to rule out other undiagnosed conditions. But at the end of the day, that is still going to leave an awful lot of people who have not been successfully diagnosed, over the course of decades, who don't fit the ME definition, but who do fit the CCC, and the further study of people with those illnesses can't be solved solely by the methods you have set out.

    So I hope that sets the scene somewhat for the further work that needs to be done here: if we could achieve a consensus understanding about ME and CFS and the way forward for studying cohorts of ME and CFS patients, that would be a major step forward: I repeat that until we can achieve that consensus we will be wasting far too much effort on fighting amongst ourselves.
  10. Tulip

    Tulip Guest

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    I think I should say this to clear up some confusion...

    I was diagnosed in 1992 with CFS by my GP, however he used the terms CFS and M.E. interchangeably, he knew that CFS was actually M.E. and that CFS was now the new name for M.E. (thanks to the CDC), even though the new diagnostic definition was nothing like M.E.. I was told i'd be better in 2-3 years as he believed the new time frame the CFS definition put on M.E. was correct. I then went and saw a specialist who diagnosed me with M.E., but offered no help. 2 years later surprise surprise I was still sick, I then went to another specialist and the diagnosis of M.E. was confirmed, but he also used the terms M.E. and CFS interchangeably and I was given a poor prognosis of "you will be sick for a very long time", they knew back then that people rarely recovered!.

    Back then CFS DID mean you had M.E., all the specialists knew that and doctors that had been practicing and diagnosing M.E. patients way before 1988 knew that to. But around 1995 the lines became really blurred and all these people that did not have M.E. were being diagnosed with CFS according to the new CFS definitions, those people had post viral syndrome, chronic epstein barr virus, some fibromyalgia and what ever else. So this is where the problems all began and this is what has led to doctors, researchers and the general public not understanding M.E. and CFS. So yes there are going to be people diagnosed with CFS that actually have M.E.. But CFS does not describe M.E. which is why CFS really has become a waste basket diagnosis...

    CFS is really a waste basket subset of M.E. not the other way around.

    Jodi Bassett is right when she says you can spot your fellow M.E. sufferers. I can easily pick out those (in real life not the internet!) that have M.E. and those that have been misdiagnosed, the most common I have come across is they actually have fibro or post viral and with post viral they are better 2-3 years later and never relapse.

    Does that make sense??.
  11. rlc

    rlc Senior Member

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    Mark it really is very simple, Dr Mikovits said in the science article

    We found the virus in the same proportion in every outbreak

    The WPI own website says quite clearly that they have never tested people from any outbreak!!! They selected people from all over the country who fitted the CDC and CCC criteria.

    So therefore what Dr Mikovits said in the science article was not True!!!

    If you cant understand that Im sorry I cant help you further.

    No I dont mean the Lombardi paper I mean the science article, which I have made abundantly clear, and have posted links to the related articles please read my posts correctly!

    The reason I pointed out to Bob that the original Mikovits statement was not correct, is because he was asking about XMRV in relation to ME as defined by the historical literature. So I was pointing out that the Mikovits statement was not correct, and it has lead a lot of people to believe that there was proof linking XMRV to these outbreaks which there isnt, and also pointed out my own opinion, which Im totally entitled to have that Im far from impressed that this statement was made by Mikovits in the science article and nothing was done to immediately retract it.

    Im untitled to express my opinions just as much as you are. You obviously love the WPI, I dont, and because almost the entire of the scientific community cant find evidence that what theyre saying is true and are pointing out that the WPI statements regarding finding like XMRV antibodies are impossible at present, and even Singh cant find XMRV in patients that the WPI says they can. I personally give a lot of credence to what their saying. And I dont view the WPIs stance of were right and your wrong as being in the slightest bit helpful or constructive.

    Id also like to point out to you that in my original post on this subject I said this Now before I start in explaining this, Id just like to state to anyone reading this, because I know a lot of people are very passionate on this subject Im not trying to upset anyone Im just presenting some facts that am aware of that people might like to consider!! So when bob said he didnt necessarily agree with everything, that was fine by me.

    This is supposed to be a Polite conversation between adults. Your comments like more illogical nonsense, and this comment is again just more lazy thought and illogical reasoning. Are just Arrogant, rude and highly offensive, and as a moderator you should know the rules about politeness on this forum!!!!!

    As you dont even know what the articles by Drs Hyde and Mirza that I mentioned are, which are in post #22 of this tread, posted on the 15th of April, 35 days ago, its very obvious that you are the one being lazy and havent read the information that people are talking about. And therefore cant possibly understand what people are talking about. And how someone who claims to know so much about ME, hasnt read The complexities of diagnosis by Dr Byron Hyde which explains in detail how to Diagnose ME and the tests for the other diseases that get misdiagnosed as CFS which has been freely available on the internet for years is beyond my comprehension.

    If you want to join this conversation between polite adults!! I suggest you go back to the beginning of this tread and read every single post and every single link that has been provided by sick people trying very hard to help each other and actually find out what people are talking about. Instead of jumping into a conversation half way through, which you obviously havent been following, havent read the information thats been provided, so you cant possibly have a clue what people are talking about, and making uninformed, arrogant and offensive comments!!!!

    From previous comments you have made it appears that you dont fit the criteria laid out in the Nightingale and Ramsey definitions for ME. If you read the articles by Drs Hyde and Mirza in post #22 you will more than likely find them explaining the tests you havent had done, which if you get done have a very good chance of getting you the correct diagnosis and ending your suffering!

    I pointed out to you months ago, that it would that it would be a good idea to collect the test results posted on this site, because they clearly show that there are a large amount of misdiagnosed people on this forum, to which you replied you didnt have time. In post #22 you will find I have done it for you!! Please read!! In post #14 here http://forums.phoenixrising.me/showthread.php?11521-Differential-diagnosis-Amyloidosis/page2 I have made suggestions about things that could be done to help people who are misdiagnosed. Such as collecting useful information to help people all in one place instead of it being scattered all over the place as it is at present. Please read and consider this as it may help save some one from pointless suffering.

    In the future if you continue to address me in such a rude and arrogant fashion, I will ignore your posts, and continue talking to the nice people here, who know how to behave in a polite, courteous and dignified fashion!!!
  12. rlc

    rlc Senior Member

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    Hi all, noticing some understandable concern about how to get a SPECT, PET or QEEG scan to confirm a ME diagnosis. Obviously for most people if they try to approach their doctor to get these done its almost certain to lead to disappointment!

    However there is a way round this that may work for some people. Because ME is a disease of the central nervous system and affects the brain, people with it always fail neurological tests, Neurological test are a set of tests that involve no machines and show what part of the brain isnt functioning properly, because they involve no machinery they are reasonably cheep to get done. Neurological testing is explained in great detail on this site and has little movies that show whats involved. http://www.neuroexam.com/neuroexam/content.php?p=2 These are the neurological tests that are mentioned in both the Ramsey and the Nightingale definition to help with diagnosing ME.

    An average doctor will be able to do some of these, but it is best to get a neurologist to do them. Failing these tests dose not confirm ME, because a lot of other neurological conditions, like MS, Parkinsons, brain tumours, brain abscesses etc, etc will also cause similar results, but if you can get these tests done by a Neurologists, then if you fail them, they should want to know why, and this will lead to further testing like MRIs, tests for other infectious diseases etc, and the good thing about this is it will rule out the other possibilities.

    The Ramsey and Nightingale definitions are written by doctors for doctors, and patients shouldnt be in the position of having to work out what they mean, but because of the appalling neglect in the field of ME this is whats happening, which can very easily lead to mistakes e.g 6% of cancers effect the central nervous system, the patients muscle pain may be caused by something like a vitamin D deficiency and the sudden onset might have been a different infection that is not related to the ongoing condition, medicine is very complicated and its very easy to get confused. If you can get Neurological testing done and you fail it, this should hopefully lead to more testing that rules out the other possibilities, leaving only ME.

    If youre going to try this its important to say as little as possible about ME and CFS at the start. The reason being that because of all the false information that has been put out by the likes of the Wessely School and the CDC ,most doctors view them as the same thing, and as some kind of psychiatric condition and in reality dont really want anything to do with people who have these diagnoses, and think that they should either be referred to a psychiatrist or are just a baffling problem that they dont know how to help.

    If you take the approach of can you help me Ive got what I think are neurological problems and think I might not have the correct diagnosis. The Neurologist is likely to be a lot more helpful. If you fail the initial tests you should then get other test done to rule out all the other diseases that could cause your failed test results. Then once thats been done you could try and get them to have a read of the Nightingale definition and see if theyd be interested in doing the tests mentioned their if they havent already.

    The most important thing is not confirming a ME diagnosis because at present there isnt really any effective treatment. The important thing is making sure that youre not suffering needlessly from something that could be treated and being placed in danger of dying from some other missed condition.

    Caution in the above link that explains Neurological testing youll find things like the Romberg test. Dont try this at home!!!!! It can lead to people rapidly falling over with a large risk of injuring themselves!

    Hope this helps someone

    All the best
  13. insearchof

    insearchof Senior Member

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    Hi Mark

    To summarize your current position you believe:

    *The cause of ME is not know and is only based on personal belief,
    *There is not any scientific evidence

    You hold this belief, even though:

    * presumably you have read this thread where there has been evidence posted to the contrary

    * that the differences between ME and CCC CFS have been also been posted on this thread

    * the historic evidence of ME is not refuted, simply forgotten and hijacked by the psychiatric lobby

    * the material posted in this thread is a reiteration of scientific literature (supported by such where possible ) and not the personal beliefs of the authours in this threa, as you assert.

    I am interested to know whether these are your own personal views or the views of the board of PR?

    I refer you to comments you made previously in this thread found here: http://forums.phoenixrising.me/showthread.php?10962-Is-it-worth-explaining-the-difference-between-ME-and-CFS-to-the-public&p=175847&viewfull=1#post175847



    Your most recent posts seeem to represent quite a departure from your previous views, (as presented above) a few weeks ago.

    On the basis of this statement, I have to ask you - how much reading, research and knowledge do you and the board of PR have on this subject matter and or are you undertaking?

    If you or the other board members of PR have not been studying the historic literature or consulted ME experts such as Byron Hyde, don't you think it is encumbent that you do so, especially as you purport to advocate on issues that affect both ME and CFS patients ?

    As for having to be ''very careful indeed'' with our ''language'' ''when describing CFS patients who do not fit the historical diagnostic criteria for ME'', unless I am mistaken, I don't think I have seen anyone on this thread say to anyone personally - who has a CFS diagnosis that they do not fit the historic criteria for ME. What I have seen however, is a discussion of symptoms and whether they are recognised or the degree to which they have been recognised in the historic literature.


    With regard to attaining consensus and moving forward, if your view of consensus looks like this: prepared to accept the historic truth up to a point (ie so long as it does not challenge the CCC CFS definition) then I am afraid, that consensus on that level, is unlikely to be reached.


    Moreover, there is unlikely to be any productive dialogue capable of moving both camps towards a point of consensus , unless and until advocates and organisations demonstrate knowledge and understanding of the historic ME literature -most importantly the points of distinction between ME (as described in the literature pre 1988) and CFS and are prepared to acknowledge the same.


    I believe this is one reason why certain organisations/advocates/groups in the USA may have failed over the years to have productive dialogues with the CDC et al. They may be missing vital information found in the historical literature and therefore maybe going to the negotiating table unprepared or alternatively, unwilling to acknowledge the elephant in the room. I do not know. However, I do see many advocates/groups in the USA calling for the CDC to rename CFS: ME and or calling to change the definition to incorporate ME symptoms, which would suggest to me, a failure in understanding the differences, and or an unwillingness to acknowledge historical medical facts outlined in the medical literature and espoused by ME experts for over 50 years .

    The elephant in the room I am talking about is the distinction between ME and CFS.

    The CDC know the distinctions we are talking about on this thread and acknowledge them.

    If you have any doubts on the matter, consult Amy Blum, Medical Classification Specialist at the National Center for Health Statistics ( a division of the CDC) who reported in July 2009:

    See: http://www.hfme.org/wlicdcodes.htm.

    And this from the CDC website on CFS:


    See: http://www.cdc.gov/cfs/education/wb3151/chapter1-1.html


    There is no point going to the negotiating table making demands (ie change the CFS criteria to include epidemic ME and re name CFS to ME) that are inconsistent with accepted medical and historical facts: accepted by the CDC, accepted by ME historians; accepted by ME medical experts and advocates and as you previously stated, by a large body of historical medical literature that has not been refuted for over 50 years, but which was hijacked by the psychiatric lobby.

    Yet this is precisely what some parties want.

    There will be no moving forward - on any level - until the relevant parties acknowledge accepted facts or ''what is'' - none of which is based on personal belief or perception.

    However, if you,or any other advocates or groups or organisation want to argue with the CDC et al that there is no distinction (that they are the same), or that there is no evidence of enteroviral association in ME -only the personal belief of ME advocates- then all I can say is you would be better channelling your time and energy into something else.

    If the CFS organisations can acknowledge ''what is'' then we might be able to make some fast progress and actually be able to sit in the same boat a lot more comfortably.

    The ME advocates on this thread are all in agreement (I believe) in regard to the following:

    * better selection of co horts for scientific study in CFS
    * the removal of the limitation with respect to standard testing in CFS

    If consensus was possible, then I personally think (others may have a different view) it might look something like this:

    *having the Nightingale Definition of ME or something similar constructed by acknowledged ME medical experts - being promoted by and alongside of the CFS criteria by the CDC

    *have the CDC promote training materials (drafted by acknowledged ME experts) on such to doctors across the globe

    *have governments across the world promote further research into ME and enteroviruses.
  14. Mark

    Mark Acting CEO

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    Maybe, but you are making it complicated and confusing by being imprecise.

    You are referring to the article you referenced from Scientific American magazine. Why call it 'the science article'? That's confusing and inaccurate.

    Note again that this is an attributed quote, given by the journalist without any further context of Dr Mikovits' actual words, and was taken from an interview with that journalist and not from written material by the WPI or Dr Mikovits. This is important to bear in mind, because in such contexts it is quite normal that misunderstandings and misinterpretations arise.

    So I just went to the WPI's website to attempt to confirm what you say here, and spent some more time looking through the "Q&A" section you cited before, and I can't find any such statement.

    What I can find are the following answers about cohort selection:

    and

    Yet what you said was: "The WPI own website says quite clearly that they have never tested people from any outbreak!!!"

    Once again you have made a strong assertion there: what the WPI themselves state on their website that "they have never tested people from any outbreak". And yet this assertion appears to be untrue when I check the evidence.

    Unless you can provide a referenced quote from the WPI stating that "they have never tested people from any outbreak" then I will continue to assume this is another inaccuracy of your wording.

    No: what you said in your post was not true.

    Note that I have not gone as far as you have done and claimed that you are telling lies by making these untrue statements.

    As to what Dr Mikovits was quoted as saying in the Scientific American article, the point is that the WPI collected samples from clinics located in areas of the US where outbreaks had occured. (I don't have the exact wording to hand).

    Since we don't have the full context of Dr Mikovits' quote, I don't know what Dr Mikovits' understanding was at the time when this was said. It is possible that she made an assumption that those patients were involved in the outbreaks, and/or used some loose wording in the verbal interview with the journalist. But there is absolutely nothing here to justify your accusation that Dr Mikovits or the WPI lied - and the reason I am posting about this is because you said that they did.

    Interestingly, there was another, similar allegation made (or rather, an aspersion cast) against the WPI based on a second misreading of this quote that samples came from 'clinics located in areas of the US where outbreaks had occurred'. When the WPI then mentioned that the Lombardi paper included some international patients, critics pounced on that and contrasted it with the statement that 'the patients were from the US'. They claimed this was an inconsistency and a discrepancy. And mud like that did stick, regrettably. But the truth of that was also explained by the WPI: to their surprise, when the samples were uncoded, it turned out that several of the patients in these clinics had flown to those clinics for treatment, from the UK and elsewhere, and that some of those patients tested positive.

    Having gone through so many arguments over such details at the time, and having heard so many allegations like this against the WPI, from people who turned out to be themselves making assumptions, misreading and misinterpreting wording, and using that to cast aspersions against the WPI, I am familiar with this pattern. Sadly it is never possible to correct all of these damaging mistakes by the WPI's critics, but where I see an unfounded allegation that the WPI lied, I will challenge it where I can. Accusing somebody of lying should not be done lightly.

    I can understand quite well, thank you, but if you want to help me further understand what you are saying then you will need to be considerably more accurate with your wording.

    It is clearly essential to read your posts extremely carefully to determine what you are actually trying to say and to determine whether or not what you are saying is true. Nothing you've said has been 'abundantly clear' and it has taken quite some effort to work out what you mean. By calling the Scientific American article which you referenced "the science article" you introduced ambiguity, and it was not possible for me to determine the correct way to read your post without asking you what you meant by "the science article". Since the Lombardi paper was actually published in Science magazine's somewhat 'article-like' format, the term "the science article" was ambiguous.

    Your original point that there is no clear evidence that linked XMRV to these outbreaks is valid, and that's fine.

    You are indeed entitled to your opinion that the quote in the Scientific American article should have been retracted or clarified. I will also express my opinion on that matter, which is that the WPI faced an enormous amount of questions and huge interest from many spheres after the Lombardi paper was published, and did their best to answer those questions carefully and correctly, and they did clarify these issues, and have been responsive to those people asking for clarification of salient points, and that it is unrealistic to expect them to correct every misleading paragraph by every journalist writing about their study.

    When you expressed your 'opinion' that the WPI 'lied', however, you made a serious allegation, which needed investigation and which proved to be unfounded.

    At this point, you begin to make questionable statements about me...I guess I should not be surprised...

    My opinions about the WPI are not the issue here: you have unfairly accused them of lying and I have defended them from that accusation. In the past, I have similarly challenged claims that other researchers - including, I believe, Wessely school researchers - have "lied". There's no reason to assume that this defence means I "love" the WPI.

    Of course the weight of that evidence is compelling at the moment. I haven't seen anyone saying that "the WPI statements regarding finding like XMRV antibodies are impossible at present", and my guess is that this is more loose wording from you, and wording that may be damaging if taken at face value by people reading this. I don't agree with you that the WPI's stance has been unhelpful or unconstructive: that is just another claim which is not referenced with evidence, and it is not what I have seen: as I've said, I have seen the WPI defending their science, which has seemed quite reasonable to me. Since they believe they are right, they are right to say so.

    If you are claiming to present facts then you should be careful to distinguish those facts and present them accurately.

    I do know the rules, thanks, and I was quite careful. If another moderator believes I have broken the rules I am prepared to stand corrected. My references to "illogical nonsense", "lazy thought" and "illogical reasoning" referred to specific passages of your text, which in my assessment are precisely what I have called them. These were not personal attacks (which are prohibited by the rules), but comments on specific content which you wrote. That content, I'm afraid, was illogical and nonsensical, and I genuinely don't want to be impolite in pointing that out, but your allegation that the WPI lied was also not polite, nor well-founded, and I felt it should be challenged.


    It is not "very obvious" that I am "being lazy" by not reading every post and reference in this thread. It's quite obviously ridiculous to think that I ought to have done so. I would love to have the time to do so, but it is certainly not through laziness that I don't.

    Here's another false, unreferenced, wooly and unfounded claim: that I "claim to know so much about ME". When and where have I made that claim? I have not done so.

    I have written my opinions and impressions and analysis about discussions on this forum, and about ME/CFS. I have never claimed to have a deep of knowledge of the literature, because I don't have that knowledge. I have my personal experience of 15 years, and I like to think I have a quite logical and analytical mind which may be of some help. That is all. I have never claimed what you say I have claimed - so again, please check your assumptions.


    Good grief! How long would it take to read every single post and every single link?! It's completely unrealistic to imagine that I or anybody else would have time to do that - it would take weeks! And it's unreasonable to expect that anyone wanting to post on this thread must do so: we never expect that on long threads here...or else we'd certainly never get anybody posting on the B-12 thread, for example!

    Actually, I have attempted to keep up with this thread and this conversation as best I could, alongside a whole load of other threads of interest. So I have a fair idea, without having had time to do more than glance at some of the referenced information.

    My comments here have been restricted to responding to specific posts you have made, and specifically to the post criticising the WPI, which is a subject which I do know a little about, because your comments were inaccurate allegations against the WPI. The comments I've responded to did not need me to know anything about the rest of the thread.

    You are correct that I don't fit those criteria, and I've never claimed that I do. I actually had a whole load of tests today, collated from recommendations from people on this forum, and so I think you are quite right that there are indeed many of us here who may have other undiagnosed conditions; I'm still looking. Thank you for your reference to post 22, I'll look into that.

    I don't recall exactly what I said then, but I think I may have mentioned that one of many things I am doing with PR is writing some software to do precisely what you describe, but in considerably more depth. I will read your post 22 in this thread.

    I'll have a look at that too, and I wholeheartedly agree that the suggestion you have made is a good one.

    I'm sorry that you find my earlier posts rude and arrogant. But I stand by my assertions that the comments I was referring to were illogical and nonsensical. That's of course not true of everything you write, but when you are accusing people of lying and doing so in an illogical and nonsensical way, then you should expect that this may be pointed out. I really don't think it's either rude or arrogant to respond as I did to such allegations: if you are going to accuse people of lying, then you should have a better case to make than you have here.
  15. Mark

    Mark Acting CEO

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    Hi ISO,

    Regrettably I am out of time now to spend as much time as I'd like replying to your post above but I'll attempt some clarifications.

    1. One of my comments above was missing a crucial comma which may have misled: it should have read:

    "and they are all no more than beliefs, without evidence..."

    ...in other words, unless there is evidence, they are just beliefs...I was not meaning to say that there is no evidence.


    2. I don't believe "there is no scientific evidence".


    3. As far as I am aware the (precise) cause of ME is not known, and I'm sorry that I won't have time to read through all the information on this thread, so if you are saying that it is known, please could you state that in one or two sentences? One of the problems that I, and I suspect many others, have in referencing the literature you try to point us at, is that it seems to me very long, winding, complex and difficult to follow, and it's hard to pick out clear statements and to verify the truth of those statements. If your position is that the cause of ME is known, perhaps you are going to say it's an enteroviral infection? In which case, my word 'precise' may come into play, in terms of the identification of the specific pathogen(s) involved.

    4. I have read much of this thread, but it hasn't been possible to read all of it. I'm afraid that, despite quite a lot of reading, so far I am still largely unenlightened. Since your points about the differences, and the cause, are crucial, a summary or a reference to a clear summary of those points would be helpful.

    5.
    I really wasn't asserting that at all.


    6.

    My personal views at the time when I wrote them. (With one missing comma, at least. :) )

    7.

    As a word count, I really couldn't say. :)

    But I stand by my previous comment that I think it is important to do so, and my hope that you will help us to navigate through the overwhelming quantity of material that has been presented, because there are a lot of other important issues to study as well, including the current research and political goings-on.

    8.

    To clarify, the problem that I have seen, in the past at least, and in parts on this thread, is a tendency to appear to say that "CFS" is not real, being as it's a syndrome, and to appear to suggest that the strict criteria for ME - stricter than the CCC - define the real illness, and that everybody else has something that isn't real.

    Thanks to this thread, I now understand your position better on these matters, and I have realised along the way that some of the comments, which appeared to be belittling those who don't have a valid diagnosis of ME, were shorthand and were not intended as they came across. Those sort of problems have provoked a lot of misunderstanding or arguments in the past, often giving the impression to people like myself that we are accused of having 'just some kind of depression'. My point is that this is the last thing you want to be seen to be saying, and so it's friendly advice, really, to be very careful not to give that impression when saying things along the lines of 'CFS is not real, it's just a syndrome'.


    I'm afraid the rest will have to wait...I really must move on to other things now...

    but in short...

    That's not the case to my knowledge, that this is what I or others want to argue. Personally, primarily I want to argue for much, much more research, with more careful attention paid to cohort definition and more logical thought about how the heterogeneity of cohorts distorts and holds back progress.

    I like your quotes about apparent areas of agreement so far, so I'll reproduce them:

    Finally, my assessment of the situation overall is that clearly what we have is a tangled mess, and that actually an approach that seems sensible to me is - bizarrely - illustrated by a quote from Peter White (!) who said that "we need to lump and split", which I agree with to the extent that what is needed are studies that look at a range of related conditions with similar presentations (like 'historical ME' patients and 'CCC CFS' patients) - studying the most disabled patients first - and collect a very large amount of data about their histories, tests, symptoms etc, and then look for patterns that define the subgroups. If there really is a clear distinction between classically-defined ME and other patients with CCC CFS then this should be apparent in that data. I'm very hopeful that careful collection of large amounts of data can achieve all of this, so that's one of the main approaches I would advocate: to resolve these distinctions and define these subgroups more rigorously so that further research can proceed on a more logical basis.
  16. insearchof

    insearchof Senior Member

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    Hi Mark

    I did not have any trouble understanding or following the argument rlc was making.

    I appreciate however the points you made and were raising, the need for clarity and of course, your personal right to do so.

    All the same, your an intelligent and articulate fellow and charming (when it suites :D) . I don't think it is hard to understand that most people would get their backs up when told their assertions are ''nonsense'' and their thoughts ''lazy'' (especially when they are ill and putting in a lot of effort).

    I think there is a difference also in the use of the term ''nonsense'' which you used more than once (a noun meaning: garbage, baloney, drivel, gobbledygook, gibberish, babble, rubbish, twaddle, claptrap, balderdash, hot air) and the term ''nonsensical'' (an adjective meaning:senseless, unreasonable, illogical). I take it, from what you have subsequently said - that perhaps nonsensical would have been a better choice, though I am not sure that you needed those terms at all to make your points. You were doing well without them.

    PS: I wish to reply to your post #437, but will need to do so a little later.
  17. Bob

    Bob

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    I wrote a really unhelpful post earlier in the thread, because it was late at night and i was tired, so i've deleted it, and rewritten it here...

    I agree... The science is incomplete, and there maybe a cohort of patients with a disease very similar to the one that Byron Hyde describes but that doesn't quite fit his 'ME' criteria. Or there could be a cohort of patients with the same disease as the one that Hyde diagnoses, with the same underlying cause, but with different symptoms and signs.

    So I don't personally believe it is wise to say that everyone who doesn't fit into Byron Hyde's definition of ME, has an entirely different disease.

    But having said that, Byron Hyde's approach to the subject seems to be that we all have 'ME', except those who have some other diagnosable and treatable condition, which he usually pinpoints. I think that there are only a very small number who he is unable to diagnose. So I think that 'ME' is not so very exclusive, and from Hyde's data, it would seem that a majority of our community have that specific disease that Hyde diagnoses.

    I'm using Byron Hyde as an example because I don't know anyone else who has continued to use very specific criteria for diagnosing ME.


    What I understand from this thread is that people aren't saying "I've got ME, and you haven't", but they are saying that there is a historical disease called 'ME' which is being neglected by the scientific and medical communities, because not enough biomedical research is being carried out using specific criteria... And that people with a 'CFS' diagnosis may have the historical disease 'ME', but it's hard to know because the official diagnostic criteria are not specific enough criteria to determine this... And many people diagnosed with 'CFS' may have a different diagnosable and treatable disease into which their doctors have not done enough investigation because they can't be bothered.

    I think that it's a very helpful subject to explore, and to understand, because the historical research gives a helpful deeper insight into the nature of an organic disease which most of us may have.


    I also think it would be interesting to make a comparison of the CCC and Ramsay's definitions, which I intend to do out of personal interest. And it might help some of us get a better insight into what sort of disease the historical ME was.
  18. Bob

    Bob

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    I think this is interesting...

    Ramsay compares the fatigue experienced by (historical) ME patients to another type of fatigue experienced by people with what he calls 'post influenzal debility'...

    "...When, on the occasion of a recent ITV programme on the subject of Myalgic Encephalomyelitis, an immunologist stated the 'M.E. and PVFS are regarded as synonymous' I realised that my objection to the latter term was fully justified and that it was incumbent on me to show that such a statement is blatantly untrue. It is fortunate that a second edition of my monograph affords me the opportunity to demonstrate that the clinical features of Myalgic Encephalomyelitis provide a sharp contrast to all other forms of postviral fatigue syndrome.

    The clinical identity of the Myalgic Encephalomyelitis syndrome rests on three distinct features, namely:

    A. A unique form of muscle fatiguability whereby,even after a minor degree of physical effort, 3,4,5 days or longer elapse before full muscle power is restored.

    B. Variability and fluctuation of both symptoms and physical findings in the course of a day. And,

    C. An alarming tendency to become chronic.

    If we take the well known condition of post influenzal debility as an example of a postviral fatigue state we see that in all these particulars it constitutes a complete contrast. The fatigue of post influenzal debility is part of a general debility with no distinguishing characteristic of its own, it shows no variation in intensity in the course of a day and although it may last weeks or even many months it has no tendency to become chronic."


    http://web.onetel.net.uk/~kickback/THE CLINICAL IDENTITY OF ME.html
  19. insearchof

    insearchof Senior Member

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    Hi Bob,

    Yes, this is one of the articles he uses to emphasis the distinction between ME and PVFS states and I believe I have made reference to this article and provided the link in the past.

    I agree, it is very interesting and it is worth highlighting and I am glad you did so.

    He compares ME to PVFS associated with post influenzal fatigue state and points out the contrast ie: the later (unlike ME) has no clear distinguishing characteristics.

    They are not the same condition.

    ME is not the same as PVFS and I agree with Ramsay's and so too, on my reading, does the WHO who gives both a classification in the tabular body of the ICD 10 at G93
  20. insearchof

    insearchof Senior Member

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    Hi Bob



    I would only say that ME has been neglected by the scientific and medical communities full stop.

    The reason it has been neglected is an interesting topic in and of itself, but is not solely due to the lack of research using the specific criteria found in historical ME - though research certainly has not proceeded since the introduction of the definition of CFS. :(

    There were certain parties in the UK that were responsible for changing the focus, shall we say - on what ME was or was not and ME subsequently became lost in CFS around the period Tuliip alluded to early 1990s.

    Today there seems to be no real research (aside from that conducted by Hyde) on cohorts that meet historical ME lit. This is highly unsatisfactory and is of a concern to ME advocates, as there is no certainty that research carried out using the CCC CFS criteria, includes any ME patients at all.

    It is true, that ME advocates are also concerned with the lack of well defined co horts being used in CFS research and the propensity for some to assert that CCC CFS includes ME patients, when there is no way of being able to verify that and even if that were indeed the case, a mixed co hort is very unscientific and of course the results then become questionable in regard to both groups. A highly unsatisfactory state of affairs and again, not very scientific.

    It is very true, that people with a diagnosis of either CFS or CCC CFS may have ME and yet, because the historical medical literature has been lost to science and general physicians, patients are not even being considered for ME as defined in the historic literature.

    Despite assertions to the contrary in this thread, the ME historic literature and the criteria for diagnosis and what is needed to make that diagnosis is not difficult, mysterious or complex. It may seem so, when first approaching the subject matter.
    However I must say, I have read your discussions, as well as Marks, on the finer points of XMRV - many of which I have struggled with, and I can tell you this - if you are capable of doing that - then historic ME will be a cake walk by comparison. :D


    Hyde gives a perfect easy to read, short lay summary on these very points in his book: Missed Diagnoses which was written for both patients and doctors. If you pick this book up and read it (from www.lulu.com) for about $13-$20 you will quite quickly see this for yourself.

    It is true, that many people may have treatable diseases which have been missed because their doctors have not done adequate differential diagnoses, tests and or investigations - because the CFS definition is so wide (as criticised by many) that it tends to lend itself to this very real problem as stated by both Hyde and Miraz.

    This is a conern to ME advocates, as everyone is entitled to proper and adequate health care, including all those with a CFS diagnosis who are clearly very ill, and in need. The neglect is truly criminal. They might just get such also, if the draconian restriction on standard testing was removed for all such patients -which in turn, would assist physicians into looking more closely at other possible underlying causes and or at the very minimum adequate treatments for symptoms relief specific to the biological needs of that patient- as each and every patients illness will be different and have unique needs. Whilst that guideline remains there though, they have absolutely no incentive to do so. That has to go!

    ME patients know what it is like to go without adequate treatment and care. Some of them were misdiagnosed also or as Tuliip pointed out - ended up with a CFS label for the reasons she previously expressed. ME patients know that there are also possibly many others with ME but who have a CFS diagnosis that have been ''left behind''. In short, they want adequate and proper diagnostics and treatments and medical care for EVERYONE.:victory:

    They want this information to be used by patients to empower them and to demand what every other non ME CFS patient gets - thorough medical diagnostic evaluations and care.

    Absolutely.:thumbsup:

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