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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Some Open Questions to Dr Shepherd & the UK ME Association.

Discussion in 'Action Alerts and Advocacy' started by Anglia ME Action (UK), Sep 30, 2010.

  1. IamME

    IamME Too sick for an identity

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    It's a complete lie to say there's no evidence of 'itis' -- it was found by Peterson et al in the Tahoe outbreak and then published. CNS vasculitis was found in the 50's. Ganglionitis was found in several recent well-publicised post-mortems in the UK, and this was mentioned by Dr Chaudhuri (IIRC another MEA advisor) at a recent conference.

    Yet STILL people are being brainwashed into parrotting the same old anti-ME establishment-pleasing rhetoric. Sophia Mirza must have been misdiagnosed or had a comorbidity! they cry. I guess it's more comforting to believe a nice lie than an unpleasant truth.

    And why should the amount the time Dr SHepherd has been around make any difference? Wessely has been around since "before some people were born" as well. That's not an argument, it's a wretched appeal to emotion.

    Prof Nancy Klimas has also stated that there's "massive" CNS inflammation -- itis. Is she so inept she'd get that wrong -- I don't thnk so. All else being equal I'll take a Prof over a Doc, someone who's an expert in AIDS. You won't find Charly boy saying that he'd rather have AIDS than ME, indeed, he wrote in his book that there's no reason most pwME can't have a good quality of life! Autobiographic?

    Then of course Shepherd himself wrote an e-BMJ response stating there WAS evidence of inflammation, before the wind changed direction. Maybe it will blow back again one day -- though probably too late because they've already committed to a new name, enhancing "nominative fatigue" among the medical community. WHO does this scientific inaccuracy benefit?

    The argument that ME-opathy is less offensive to psychologists... Hell yeah, that's why it's called appeasement, though the irony is it's too late since they managed to inviegle CFS or "CFS/ME" into every corner so that doesn't wash. The MEA seem to think it's the reason why ME isn't accepted; clearly it's not, as besides 'opathy' not having made a jot of difference, ask any cynic and they will give you a whole ragbag of excuses (some criticising "myalgic") demonstrating the real reason is institutionalised prejudice/ignorance. Trying to naively fight that by changing a few syllables is like trying to fight slavery by getting rid of the Afro.

    I don't really understand these overbearing tribal, emotional allegiances people have to certain people in the field, as if it's somehow fated they can do no wrong, ignoring any evidence to the contrary, ignoring the repeated betrayals and selling-outs.

    If you want a zero tolerance stance (and why wouldn't you?) you wont find it in CS since he supports GET when it suits him, signed the crappy CMO report (that recommeds GET) which was condemned by MERUK, excuses the rash of psychosocial clinics and never wastes an opportunity to rubbish many biomedical findings (the RNase L researchers are just in it for the money you see; ME doesn't cause this finding or that finding). People are resting "too much" and being threatened by "excessive" investigations, and there's too much emphasis on pain and sleep problems when they should be doing "sleep hygeine".

    The issue of CBT/GET remains the great white elephant in the room which too many so-called advocates are fudging, pretending the somatising/deconditioning vs infection/disease issue is over or that by paying lip service to words like "physical", "neurological" that will somehow compel people to change their beliefs and actions.

    The most recent bad taste he's left is in furthering the fantasy where sufferers are to blame for the lack of biomedical research. Unforgivable.
  2. IamME

    IamME Too sick for an identity

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    Well that's very convenient, he's not the one having to suffer the consequences of it.

    And since he's made no attempt to improve his act since then, people have every right to point that out, whether he likes it or not.
  3. Dolphin

    Dolphin Senior Member

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    Nancy Klimas often recommends exercise programs/talks about deconditioning for (ME/)CFS, and has published stress and CBT studies (for other conditions). I don't recall her much or ever using myalgic encephalomyelitis on its own. Don't recall many/any of her papers outside the Carruthers paper even using ME/CFS.

    Unfortunately, one can find fault with most/nearly all doctors in this field if one digs enough.
  4. kisekishiawase

    kisekishiawase sad

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    southeast asia
    is this true?
    long ago theres 1 doctor who said i have spasmophilia but its still unclear
    theres also some website mention fibro
  5. peggy-sue

    peggy-sue

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    Scotland
    :)

    I have an observation to add. I used to go to the MEA website regularly, to catch up on research news, etc..
    I am not a member, but am registered to comment.

    Some weeks ago, the whole format of the site changed.
    It is a nightmare to look at, to try to navigate or to read anything.

    It could not be less ME-friendly.

    I didn't even find or notice that the name had been changed - just looking at the site almost has me in tears, it is SO dreadful and impossible for a PWME.

    These are the comments I posted yesterday and this-morning, before I found this thread.


    "Please, please, pretty, pretty please, can we have the text in a bigger white box – the background is still a horrible distraction, the mesh over it does not help at all, and there is no margin between the busy background and the left hand side of the writing.
    I cannot navigate comfortably at all – I just give up and I miss loads of important stuff now.
    I cannot be the only PWME who finds this.
    It’s hard to understand why the site is so ME-unfriendly now."

    I got a reply from another poster;

    "Hear, hear Peggy-Sue, and can we please have the ‘old’ font back; my befuddled M.E.-brain finds it difficult to cope with this strange new one. Let’s have something plain.
    I surmise that the ‘new look’ site has been designed by a techno-enthusiast – all very clever and impressive but, as Peggy-Sue said, just too ‘busy’, complicated and confusing for us foggy-brainers."

    I replied;

    "Thank-you for your comment, Soloman!
    I’ve been having a go at looking for things – and have discovered another awful feature – there’s a bit where things start flying across the screen at the top – it’s HORRIBLE.
    There are too many colourful pictures *everywhere*, I’m also reaching the point where the mesh covered bluebells are nearly enough to have me in tears. The essential reading material is all squashed (and overly busy with images) to give those awful things most of the space….
    How can you do this to PWME?"

    This over-the-top ghastliness, utterly inappropriate for a PWME, happening to their website has got me suspecting I really should be putting them away in the same pigeonhole as AfME and AYME...

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