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Advisors to the government on ME (commonly referred to as CFS) should be ME experts, not psychiatri

Discussion in 'Petitions' started by peggy-sue, Sep 6, 2012.

  1. peggy-sue

    peggy-sue

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    Petition in the uk.

    Currently, the government allows psychiatrists to give the majority of advice for the physical illness, Myalgic Encephalomyelitis, often referred to as Chronic Fatigue Syndrome.
    There are more than 5000 research papers showing ME to be physical, not psychological. Advice on ME needs to be given by experts specialising in areas of the disease pathology, such as neurology and immunology. It should not be advised upon by psychiatrists, psychologists, or anyone working in an unrelated area
    We, the undersigned, believe that the current level of psychiatric involvement in policy for a physical disease is unethical. We demand that the government receive proper advice on dealing with ME, from thoroughly trained professionals who have a strong history of biological research into it. In particular, we demand that Simon Wessely and Peter White, both of whom in the past have influenced policy to the detriment of patients, to be excluded from any further governmental involvement with the disease.

    http://epetitions.direct.gov.uk/petitions/37117
     
    Enid likes this.
  2. Enid

    Enid Senior Member

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    All done - thanks peggy-sue. Oh dear, just how long do we have to go on educating the government that ME/CFS is for specialists - Virologists, Immunologists and now Cancer medics amongst others revealing the pathologies and finding treatments. What on earth does psychiatry have to do with these specialised areas in medicine, what do they know being blind to research findings over decades in the UK in order to mislead it seems.
     
  3. John Mac

    John Mac

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    Done, thanks peggy-sue for highlighting this.
     
  4. Sasha

    Sasha Fine, thank you

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    Thanks - done!
     
  5. peggy-sue

    peggy-sue

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    If any of you do Facebook, please, pass it on!
    I know loads and loads of petitions get started about this - but this is one of the best worded and most relevant one I've seen so far!:)
     
  6. justy

    justy Senior Member

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    Thanks Peggy - Sue, i have signed, but i'm not overly happy with naming specific psychiatrists and researchers, the wording would have been better with the names left out i feel.
    Lets hope it gets the 100,000 it needs to be looked at.
    Has everyone here signed Pat Onions petition on disability benefits? there's a thread somewhere around here...

    Take care, Justy x
     
  7. peggy-sue

    peggy-sue

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    Oh yes, ages ago!
    I think I'd rather they had named Sharpe and Chalder too..... difficult one, Justy. There are so many of them!
     
  8. justy

    justy Senior Member

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    Yes there are so many! i just think it looks a bit like scapegoating - its a wider issue than just a couple of psychs. But i will still promote the petition and hope it gets many signatures.
    Justy x
     
  9. peggy-sue

    peggy-sue

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    Thanks!
    I do feel just ONE well-worded petition supported by everybody would do a whole load more good than thousands of petitions supported by a few hundred folk......
     
    justy and Enid like this.
  10. alex3619

    alex3619 Senior Member

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    We should institute a meta-petition, add all the numbers together from all the petitions. (Joke)

    PS It is not clear this is open to those outside the UK.
     
    justy likes this.
  11. peggy-sue

    peggy-sue

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    I often wish that wasn't a joke, Alex!
    I've just tried saying I'm not british on it, and it won't let me sign.
     
  12. Enid

    Enid Senior Member

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    I quite agree peggy-sue - if only these like petitions could agree wording and come together.
     
    justy likes this.
  13. SilverbladeTE

    SilverbladeTE Senior Member

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    Gordon the Gopher knows more about ME than those bozos!
    GORDON FOR EL PRESIDENTE! :alien:

    [​IMG]
     
    MishMash likes this.
  14. Shell

    Shell Senior Member

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    Signed the petition. it's pretty shameful that such a petition is needed.
     
  15. Calathea

    Calathea Darkness therapy

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    I saw this on FB a while ago, it's a good petition. I think it needs a solid campaign behind it, though. The UK govenment only looks at these petitions if they get more than 100,000 signatures, and that means a solid campaign such as the Equal Marriage one. I'm not up to orchestrating this myself, alas. Is there anyone who is? You don't need to be in the UK to help out for this, and it would make a lot more difference than merely adding a single signature.
     
  16. Kentagern

    Kentagern

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    You now only need 10,000 signatures for an "official response" - which isn't nearly the same obviously, but means someone at least has had a look at it.

    However yes, this would benefit greatly from some sustained campaign.
     
  17. maryb

    maryb iherb code TAK122

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    Doesn't look like it has much support - only got just over a 1000 signatures, oh dear.
     
  18. Kentagern

    Kentagern

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    Yeah, it'd be on track for the 10,000 with that - but I don't have any ideas on what to do for more signatures. Way too ill to manage anything right now, and I'm guessing most people interested are the same! Sucks, huh? Well, there's 10 months still, so maybe things will change, maybe not...

    Sadly I think Pat's Petition is only just over 50k, so still stuck at half way to 100,000, and almost closed. It will at least get the official response. Why do people love badgers more than us? ;)
     
  19. taniaaust1

    taniaaust1

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    I wouldnt sign this if I was in england as those psychs do help some who are diagnosed using poor CFS definations and dont in fact have ME. ME and CFS shouldnt be mixed as very likely different approaches help different groups of patients. This has been seen in the way that "some" CFS patients (not ME patients) have their symptoms helped by the psych approaches.

    No way of approaching this illness is going to work until things stopped being mixed together. If one brings in ME expert recommendation..then what about all those patients who dont have ME but have had their illness labeled ME/CFS and who just need CBT and psych drugs for depression. They will just then find themselves in the same boat as the actual ME patients are now in.

    Simon Wessely and Peter White .. are just individuals thou powerful ones at that. It isnt them which is the big issue (wessley has caused more issues by all the bad research he's done) but the governments using of advisors which hold a biased ME/CFS view. Getting them out of the picture and just having another with the same kind of views put in in their place, wont help the situation any.

    Naming names makes it sound like a personal vendetta against certain people rather then what its truely about.. which is getting those holding unbalanced, one sided views away from being gov advisors
     
  20. MishMash

    MishMash *****

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    Rule number one: Get attention for your illness, or you will be forgetten, left to rot. The psychiatrists would let you rot.

    Naming names is not "nice". But then again doing so does add a certain immediacy and sense of urgency to your petition. I think the time for being nice passed about thirty years ago. If it weren't for loud and obnoxious activism the gays would still be dying from some unknown illness. You are competing in a din of public demands and concerns on your government. Be heard or perish! Be pugnacious, honest, and loud !
     
    alex3619 likes this.

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