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Synopsis of Invest in ME Conference

Discussion in 'General ME/CFS News' started by dasiymay, Jun 2, 2013.

  1. dasiymay

    dasiymay Senior Member

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    This is Dr William Weir's synopsis of the IiME Conference, written for the lay audience in N. Ireland.
    Permission to repost.

    INVEST IN ME CONFERENCE

    Synopsis of proceedings of 8th International Conference held on 31st May 2013. Dr William Weir FRCP (Lond) FRCP (Edin)

    The main theme of this conference focused on the three burning questions which all ME sufferers want answered, namely what causes ME, what is being done to discover this cause and what treatments might be effective? What was very encouraging was the impressive cast of speakers from around the world whose scientific credentials could not be challenged. Happily, none of them were psychiatrists, as gradually the psychiatric, biopsychosocial theory of ME causation is being consigned to the dustbin of history. There is now far too much high quality scientific evidence indicating that ME is due to immunological dysfunction and many of the speakers stated this principle very forcefully.

    There were four main categories of speaker. Firstly there were those who talked about the organization of studies, which included the collection and computerisation of data (such as case histories) and biological material (such as blood and other body fluid samples). Clearly, in the USA at least, work of this nature is now getting off the ground and a large effort is being made to establish a “biobank” of biological materials from patients which will be made available to researchers. Here in the UK a biobank has already been set up, based at the London School of Hygiene and Tropical Medicine to where blood samples are being sent for cold storage.

    Secondly there were the immunologists who described the immunological abnormalities seen in ME patients. One of the frustrations with ME is that, although there are always across-the-board abnormalities, those seen are never as consistent as they are, for example in AIDS where one particular type of immunologically active cell is consistently reduced. However one of the speakers came out with the opinion that: “if any doctor now thinks that these abnormalities are due to psychological disorder and that exercise is the cure, he/she should be deregistered” (He was from Australia).

    One phenomenon which is now well recognised is the “cytokine flare” which follows physical (and mental) exercise. Cytokines are substances produced by the immune system as part of a normal immune response to the presence of an invading bug, be it a virus or bacterium (or other, such as a malaria parasite). Interferon is the one most people have heard of. They make you feel ill as part of the body’s normal defence against infection. In ME however they appear to be produced inappropriately, and go on being produced in the apparent absence of a recognisable infection. Furthermore there is an abnormal increase - “flare” - after exercise which now explains the problem of post exertional malaise. Here, at last, is direct evidence that Graded Exercise Therapy (GET) is very likely to be harmful.

    Thirdly the issue of a possible virus infection was addressed. This would provide a logical explanation for the ongoing immunological activity – finally identifying the metaphorical fire from which all the immunological smoke was coming. The XMRV story was reviewed and provided real insights into the complexities of identifying a “new” virus. The term “new” meaning hitherto undiscovered, as it is fully appreciated that there are probably very many undiscovered viruses out there in the biological ecosystem, often being carried silently (ie without illness) by a large range of animals, including humans. The disease -causing potential of these viruses is unknown and may have very long incubation periods with infection preceding the development of disease by many years. For example It has been suggested that Parkinson’s disease is due to such a virus, and the same may be true of ME.

    As many will know, XMRV was finally recognised as a contaminant of the cultures in which attempts were being made to grow a new virus from samples taken from ME patients. The initial excitement over the discovery of XMRV was dampened when this was realized, but has not deterred the search for other viruses. To apply historical perspective, when influenza was first researched, a number of bacteria and viruses were initially but incorrectly proposed as the cause before the real villain was identified. Some very sophisticated techniques are now being used in the search for the real ME villain, one candidate being a form of retrovirus known as a “human endogenous retrovirus” (HERV). These are viruses which are already present in human genes, and usually inactive (ie not replicating). Nonetheless they probably can be turned on again and they have been postulated as causes of a wide range of diseases, including cancer and autoimmune disease. Thus ME may well be due to a HERV.

    Finally there was a presentation of the Norwegian study of rituximab therapy which shows promise in the treatment of ME. Twenty of twenty eight patients improved significantly although there was a lag period of two to three months before improvement occurred. Rituximab specifically targets the CD20 lymphocytes, taking them out of circulation but well before symptomatic improvement – suggesting that it is antibodies produced by the CD20 cells which cause the symptoms, but which require the 2-3 month period to clear from the body. This study on its own supports the immunological hypothesis of causation,
    further diminishing the psychiatric attribution of an “abnormal illness belief”.

    Rituximab does however have its drawbacks. It is potentially very toxic, also very expensive and no UK doctor would be able to prescribe it for ME at present. Further studies are in progress.

    Watch this space!
    Little Bluestem, Bob, Enid and 6 others like this.
  2. Sasha

    Sasha Fine, thank you

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    Excellent summary - very well pitched at the non-specialist and the brainfogged. Thank you, Dr Weir!
  3. Sasha

    Sasha Fine, thank you

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    Well said, that guy, and I hope he will write into medical journals to say so! :thumbsup:
    ukxmrv and snowathlete like this.
  4. snowathlete

    snowathlete

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    I dont know who this guy is, but I like him. :angel:
  5. filfla4

    filfla4 Senior Member

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    Thanks for this. I'd love to know about Dr Clare Gerada's presentation and how she was received. Anyone know?
    Clodomir likes this.
  6. Sasha

    Sasha Fine, thank you

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    So do I! It's amazing that doctors are allowed to inflict dangerous treatments on patients while knowing naff all about the literature.

    I had an NHS physio come to visit me a few years back who was all excited about the PACE trial coming out and so I asked her a series of questions about who had told her about the PACE trial, what they had told her, whether she was aware of the difference between ME and CFS, why she thought she hadn't been told about that difference, whether she was aware of the surveys showing the effects of GET on PWME, why she thought she hadn't been told about them, whether she was aware of methodological problems with the PACE trial, why she thought she hadn't been told etc. etc.

    I felt a bit mean - it wasn't her fault she'd been misinformed - but I hope she went away with some scepticism about what the NHS was teaching her about ME.
    snowathlete and Purple like this.
  7. Sasha

    Sasha Fine, thank you

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    Jorgen Jelstad answered that question in his tweets from the conference - sorry, too tired now to find the link! Politely, basically.
    filfla4 likes this.
  8. snowathlete

    snowathlete

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    I'm gonna come and pick you up and take you to my next GP appointment Sasha.
    Bob and ukxmrv like this.
  9. Sasha

    Sasha Fine, thank you

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    I really didn't feel good about it - it obviously wasn't her fault that she was taught all this rubbish - but I didn't want to just look like a non-compliant patient, which seemed to be the alternative and rather than try to justify myself, I tried to make her justify herself.

    I think we're well beyond the point where ME patients should have to justify not exercising (in the way the NHS expects people with 'false illness beliefs' to do) - it should be clinicians having to justify their attempt to apply a dangerous treatment to vulnerable patients without having done their due diligence on the literature.
    Bob and snowathlete like this.
  10. Enid

    Enid Senior Member

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    Hopefully now after Gerada's (Chair RCGP) intervention the real ME will filter down to all GPs.
  11. snowathlete

    snowathlete

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    We can hope.
  12. Sasha

    Sasha Fine, thank you

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    Nice aliens on your signature, by the way! I've gone for boffins this time. :nerd:
    snowathlete likes this.
  13. snowathlete

    snowathlete

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    The boffins are good but they remind me too much of someone...
  14. Sasha

    Sasha Fine, thank you

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    I can see the resemblence now that you mention it :aghhh: but I'm trying to overlook it!
    snowathlete likes this.
  15. Tito

    Tito Senior Member

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    filfla4 likes this.
  16. John H Wolfe

    John H Wolfe Senior Member

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    "The “cytokine flare” which follows physical (and mental) exercise" ~ this, for me is at the heart of ME/CFS, glad to see immunological causality and, more specifically, effective autoimmune antibody activity, is gaining wider acceptance and that psycho/social causation is no longer en vogue!- although it seems fairly irrefutable that psychological state (and associated patterns of behaviour) does represent a potential risk factor pre-onset, and aggravating factor post-onset

    My research suggests/hypothesis describes ME/CFS as a neuroimmunological disorder relating to 'central sensitisation syndrome' (chronic stress/pain signaling [neurological disorder]), arising typically in relation to prolonged/pronounced immunological disturbance/retardation, against a background of neurogenic/hyper-inflammatory predisposing characteristics (e.g. restricted neurodynamics [nerve mobility] and things like asthma, allergies, sensitivities)

    HERV, or something similar e.g. a hitherto unidentified (latent) umbrella virus, is one possible explanation for how the prolonged/pronounced immunological disturbance/retardation spills over into chronic activation and central sensitisation

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