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A Little Poisoning Along the Road to ME/CFS
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Dr Charles Shepherd give BBC Radio Interview

Discussion in 'General ME/CFS News' started by alex3619, Jul 28, 2011.

  1. Bob

    Bob

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    Yes, I get the feeling that the negative critical scientific appraisal of the PACE Trial has stung them rather hard.
     
  2. currer

    currer Senior Member

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    Hi Bob, nice to see you here! I should have but I'm afraid I've been at the keyboard most of today.
    Its been a wierd day - I'll never forget those headlines - surreal or what!
    Incidentally jace has been doing the comments sections in the newspaper reports. She posted a very good one in the mail- from one of your links. I think we are policing the internet.
     
  3. Dolphin

    Dolphin Senior Member

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    I posted in another forum the basic details of the show you had posted and 10 minutes later somebody said in the same thread with the details below it:
    --------
    BBC rang em earlier to take part in radio discussion. I am waiting for them to ring me back for them to tell me waht questions they are going to ask me-Rene
    -------
    There is a chance she was talking about another BBC program but I'm not sure I've heard of any regional programs on it in her side of the country i.e. you may not have imagined it.
     
  4. Bob

    Bob

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    Ah, I've found it... It was mentioned...

    I found it on the recording of Today:
    http://www.bbc.co.uk/iplayer/b006qj9z/console
    at 1:29:12

    But now I'm not sure if he was saying that they were definitely going to discuss the subject, or if it was just one interesting subject among many that could be discussed.
     
  5. Enid

    Enid Senior Member

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    I do agree Bob and general comments - "stung" into hopefully a last cry for recognition by the psyches. That they have done it this way with implications for all just about scrapes the bottom of the barrel. A really dirty tricks campaign trying to discredit and frighten/threaten all with no research. (theirs of course we don't want).
     
  6. Trooper

    Trooper Senior Member

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    I listened to the Today segment last night and I was quite amazed. Even the presenter seemed biased, but I thought Dr Shepherd gave a good response.

    I heard nothing to changed my opinion that there is something very wrong and corrupt going on with M.E. in the UK. Airing this story has just reinforced it.

    Major breakthroughs in M.E. won't happen in the UK. They will happens in others countries. Hopefully soon.
     
  7. Esther12

    Esther12 Senior Member

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    It feels a bit patronising to even say this, but we should all be aware of the prejudices through which any contact we have with the media is likely to be viewed.

    1) Make sure your criticism of any researchers is measured, accurate, and free of personal hostility.
    2) Make sure that nothing you say could be taken to indicate that you are stigmatising mental health issues (I've had myself misinterpreted in the most incredible ways in the past).
    3) Make it clear that you're not defending threats of violence against researchers, or anything like that.
    4) You could point to specific aspects of these researchers work which have justifiably led to anger, to make it clear that it's not just the fact that they are psychologists which is the problem. (Make sure that you're fairly and accurately representing their work).

    Given the one sided way the BBC presented this, with fawning coverage of Wessely/Crawley and critical questioning of Shepherd, being irritated is understandable, but we want to avoid coming across as hostile, even if some hostility would be justified. I'm sure you were all aware of this sort of stuff anyway.

    It's really annoying that we need to be endlessly distancing ourselves from some non-existent stereotype. It just seems so widely acceptable, in a way in which it no longer (hopefully) is for gay/black/other groups in society. I guess plenty of campaigners in those areas would laugh at my naivety.


    My prediction that Wessely could not bring himself to apologise is similar to those who attempt to crudely psychoanalyse CFS patients despite the partial knowledge at their disposal, and the likelihood that their prejudices will guide their conclusions.
     
  8. gregf

    gregf Senior Member

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    My sympathies for all our ME friends in the UK.

    It's easier for me here, to be a little optimistic. So I see some good in this episode.

    Wessely has now personally come out to reinforce his position. An extreme version is now on the record, full of lies and double-talk. And he has sucked in to his mess a few more reporters, and at the BBC.

    I think that now as opposed to the 90's, science will win out. In 12 months MLV/XMRV will be proven (or at worst another virus will be found to be the answer in a year or two more). Wessely's position will look embarrassing, and anybody who believed him will be, if I can use an Aussie-ism RPO, really pissed off. So in a year or two these reporters will be coming back to chase Wessely down, part of the hounds beying for his fall. I can wait for that.

    A bit optimistic ? Maybe, but possible.
     
  9. Enid

    Enid Senior Member

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    Thanks greg - RPO I well know - lots of cousins in Oz ! Hope things improve for you there now.
     
  10. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Not patronising at all, we are all prone to avoidence of acknowledging the obvious.

    Having a 'just cause' does not guarantee 'just treatment', and while collective punishment may not be fair, the reality is that any group that is seen to have 'offenders' within it who are in some way indicative of the group, will be placed in a position of being exceptionally answerable for those offenders. In societal terms a public disavowel of the offenders is needed as a sign of contrition on the part of the suspect group; how far the group can go in acceding to that is a problematic issue, IMO in this case it would be helpful to have wide scale statements of disassociation from those fanatics who believe they have a right to intimidate. It would also be helpful for the future prospects of M.E/CFS advocacy if there were clear statements of agreement within M.E/CFS forums and organsations, that those fanatics have no place alongside the rest of us.

    IVI
     
  11. Bob

    Bob

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    Thanks greg. I think I agree with you. (But I'm always getting into trouble with my optimism!)
     
  12. Bob

    Bob

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    This is a helpful checklist for writing letters.

    Especially because, as much as I try, I find that it's almost impossible to stick to point no.1, when discussing Wessely & co.!
     
  13. Bob

    Bob

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    Personally, I'd rather that we focus the media's attention on the harm that Wessely and his colleagues are doing to the ME community, than to pander to Wessely's hostile media campaign.
     
  14. max

    max *****

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    Originally Posted by In Vitro Infidelium
    It would also be helpful for the future prospects of M.E/CFS advocacy if there were clear statements of agreement within M.E/CFS forums and organsations, that those fanatics have no place alongside the rest of us.
    IVI


    the rest of who? - and who gets to decide who belongs to the 'club' - you?
    Wessely is a creep, he has caused so much suffering, he has benefited hugely from others misfortune. Why help him?

    Am I one of your so called fanatics?
     
  15. currer

    currer Senior Member

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    Personally I always think there is a place for low abuse.
     
  16. Bob

    Bob

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    Sometimes I feel anger and frustration as well. Am I a fanatic? Or maybe that's the 'psychiatric element' of the disease that they keep talking about?! Always blame the patient, because that keeps everything neat and tidy.
     
  17. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I came across this story (wire service so everyone has probably seen it) and it seems to me that we are getting some good publicity out of this. Not just a case of any publicity is good publicity. Shepherd's quotes are getting some space and Wessely comes off as a prig.

    Could Wessely actually be trying to bolster support because he's worried the official complaints may hurt him?


    http://medicalxpress.com/news/2011-07-british-chronic-fatigue-scientists-death.html
     
  18. Enid

    Enid Senior Member

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    Very interesting indeed - thanks Rusty. W's qualification about those behind the abuse were also making official complaints to British medical bodies puts a whole new light on things. I am assuming the "death threats" were indeed a tiny minority (eg 1 or 2). It really does seem he has taken in all genuine criticism with the extreme few.
     
  19. Roy S

    Roy S former DC ME/CFS lobbyist

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    You know, sometimes this Internet thingy is really cool.

    It's like-there he goes again.

    from- Denigration by Design?

    http://www.godot.connectfree.co.uk/dbyd.html#3

    Tactics used by psychiatrists of the "Wessely School"
    5. Wessely patronises, denigrates and mocks patients with ME/CFS,
    thereby damaging them and their credibility in the eyes of others.

    Others would add that he plays the victim, blames the victim, and that he is now again trying to drive a wedge between advocates and shame advocates into silence.
     
  20. Enid

    Enid Senior Member

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    Thanks Roy - Margaret Williams is such a pleasure to read. I can personally attest to "abuse" by a psychiatrist having been stretchered to A & E (passing outs) and after checks by 3 junior Docs one was sent in. Unable to think/converse from sheer self preservation mentioned psychology in my Degree. "And you are the worst" he said.
     

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