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Dr Charles Shepherd give BBC Radio Interview

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

  1. currer

    currer Senior Member

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    I hope people are not going to get too upset by this debate. I heard the radio this morning and was astounded, it did not help that I did not realise that DR Shepherd was on later.

    Please dont upset yourselves about what it said in public. There is a lot of progress going on. Things are improving.

    It seems that the internet is able to empower people - this report is the most aware of patient dissatisfaction that I have ever heard.
     
  2. max

    max *****

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    Why is it on these occasions we are represented in the media by a charity?
    Wessely states his B/S then we get a response from a charity. Why do we not get a scientific representative to respond.

    That BBC (impartial?) piece contained all the sterotypical phrases that damage us so much - even 'yuppie-flu' got an airing. I feel as though they just went for the jugular and for now, I've had enough.
     
  3. Glynis Steele

    Glynis Steele Senior Member

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    This has now made the BBC News, and Dr Sheppherd was interviewed. Hopefully they will re-run this later. (BBC News 24)

    Glynis x
     
  4. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    "First they ignore you, then they laugh at you, then they fight you, then you win. (Ghandi)

    Yer time's numbered, Weasels, the end is coming!
    This is them trying to stop the inevitable, and the inevitable repercussions.
     
  5. Dolphin

    Dolphin Senior Member

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    Which scientific representative do you have in mind? Not sure there are that many who are available and willing to do interviews esp. in studio.
     
  6. Enid

    Enid Senior Member

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    Glynis - if they can see through what is going on here in the UK - the whole of medicine "seduced" by this gang of "misfits" I might view - I see no reason for Dr S to have to apologise for a small few driven after all these years to anger. Nor does one appreciate the MEA listing amongst their champions/centres of excellence - psychiatrists. Nor Dr S's terminology "encepholopathies". They really must put their own house in order and fully understand the multisystem pathologies known to everyone else except the UK establishment. Works/supports basic medicine/sufferers may be but this attempt to straddle stools is of no use to ME.
     
  7. max

    max *****

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    Hi Dolphin - it was a question, why do we have to rely on a charity to answer Wessely?
     
  8. Roy S

    Roy S former DC ME/CFS lobbyist

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    http://www.publicservice.co.uk/blog_story.asp?id=308


    The real victims of ME are those with the disease
    29 July 2011

    No one should have to endure threats of violence and malicious abuse for their professional commitment to the advance of medical knowledge, but while listening to the Today Programme interviews about ME/chronic fatigue syndrome and the hate campaign directed at those leading research into psychological based explanations for the illness, I had the urge to bang heads together. My annoyance began with "the scientist" interviewed in the role of victim. I was left to question whether his science might be as distorted as his reasoning expressed on Radio 4.

    This story is not a new one. Psychiatrist Simon Wessely, well-known for his theories that myalgic encephalomyelitis is a type of neurosis, was telling the New Scientist in 2009 about the threats he faced. Now he tells the BBC's Tom Fielden: "People seem to prefer to be diagnosed with like a retro-virus, a potentially incurable, maybe even fatal illness, rather than an illness for which we do have some reasonable but not perfect treatment.

    "That really attests to the strength of feeling here I would rather have an incurable virus than a potentially curable disorder if the cure was treatment involving any acknowledgement of the social or psychological."

    No, Dr Wessely, I suspect that that is not what ME sufferers feel not even those who have descended to desperate extremist levels. It is the quality of the science and such distorted reasoning that enrages ME sufferers. They feel helpless and dismayed and if you were genuinely listening to your patients, Dr Wessely, you would understand something of that.

    They feel dismayed by the fact that most government funding into ME concentrates on research into the psychology and not the virology of the illness. They feel dismayed by NICE guidelines and doctors who persist with programmes of treatment that not only do not work but make them feel worse. They feel dismayed by a stigma that still surrounds the illness, stemming from early medical ignorance.

    Dr Wessely accuses his hostile critics of "trying to make me into a leper". Well, that is just how many ME sufferers have been made to feel for years. They feel dismayed that research into viruses that consistently precede the onset of ME is ignored. Was it only last autumn that scientists at Dundee University had found abnormalities in the white blood cells of all children with ME/CFS in their study? Dundee's Professor Jill Belch said: "It's important because some people do suggest that ME is a disease of the mind and here we are showing that it is a disease of the body."

    They obviously didn't tell Dr Wessely. Anyone whose life has been shattered by ME or CFS they can be separated would take any cure, anything that could offer them a return to normality. I would like to hear from the medics who suffer from ME. In my 15-year interest in the illness I have yet to find one who agrees with the Wessely theory. No matter how sceptical they may have been, they seem to be instant converts to a physical cause once they become sufferers.

    I wish Dr Wessely nothing but good health and back the call for hostilities against him to be halted. But there are far more victims in this story the tens of thousands of people in the UK whose lives have been almost shut down by ME.

    I will write more on my experience as a parent of an ME sufferer in Public Servant magazine.

    David Allaby
     
  9. Dolphin

    Dolphin Senior Member

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    As I hinted but will expand on: I think they likely wouldn't have a biomedical researcher to reply because (i) there are relatively few biomedical researchers in total who are reasonably knowledgeable about the field, (ii) for whatever reason, they would be less likely to challenge Dr. Wessely (they tend not to write letters to medical journals either) - and with a radio interview one wouldn't know what sort of things would be said so difficult to come up with a response on the spot and (iii) people can be busy with appointments/schedules and a lot of people wouldn't be willing to make the effort esp. when the BBC I think will generally want somebody to go into a studio to get good quality sound.

    I find it disappointing that more researchers don't challenge some of the rubbish in the literature.
     
  10. jace

    jace Off the fence

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    Dr Hooper springs to mind. Margaret Williams. One of the team from Invest in ME.

    Off the top of my head - there are more articulate, well informed advocates out there, I am sure.
     
  11. Dolphin

    Dolphin Senior Member

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    When have you heard Margaret Williams do a radio interview? I don't believe she's available.
    Also, the question was why was a representative from a charity rather than a biomedical researcher speaking so Invest in ME would fit the same criteria.
    Prof. Hooper has done some interviews but he's not a published ME/CFS biomedical researcher either (to the best of my knowledge) (and neither is Margaret Williams).

    Note: I didn't say Dr. S was the best person; I merely tried to answer the question why there was not a biomedical researcher responding to Simon Wessely.
     
  12. max

    max *****

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    so, we're back where we've always been, writing comments on a forum - whilst Wessely gets pity on national radio and TV - as I said, we are reliant on the rest of the world. The UK is a closed shop.
     
  13. Enid

    Enid Senior Member

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    Dolphin - Margaret Williams is not available (except no doubt in touch with all developments/errors here) She herself came in for enormous abuse from the Psycho lobby). Her response will (happily) come in her usual erudite manner.
     
  14. max

    max *****

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    the media events of today explain why I wasn't over the moon and sharing the optimism of our friends across the pond with the 'ICC' news - government propoganda reigns supreme - I know it is by no means 'over', even still, I'm struggling with this media airing of the 'mainstream' viewpoint.

    I fear the tipping point just got further away.
     
  15. Enid

    Enid Senior Member

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    Must just add - who is Simon Wessely - inconsequential in matters ME - so (goodbye Simon - glad you are gone to Afghanistan - bees knees there poor things) - do try and buck up - it's what you appear to find the best solution.
     
  16. max

    max *****

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    Hi Enid

    "Her response will (happily) come in her usual erudite manner."

    yes, it will be posted on here and other forums and be applauded - it will not make BBC TV or radio on a prime time show - what is the point of a response that only us will read?
     
  17. Dolphin

    Dolphin Senior Member

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    Well done to Quentin on that. And well done to Charles.
     
  18. Enid

    Enid Senior Member

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    Thanks max - what she and Prof Hooper have had to cope with all these years (much abuse) has been the greatest encouragement to us all here.
     
  19. SOC

    SOC Senior Member

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    Wow........
    Your media in the UK is majorly effed up......

    Did anybody provide genuine evidence of "torrents of abuse" or "harrassment"? Or does the media just swallow such statements whole? Those are pretty extreme statements to publish without strong evidence. To say nothing of denigrating an entire group of people for the actions of a few.
     
  20. max

    max *****

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    we have lots of media that all spout the same version of events - a recent visit to an NHS specialist summed it up to me - he said, "I trust people to not have an agenda"

    I've yet to see any evidence of "torrents of abuse" unless they mean the sort of thing that I frequently write on this forum - if that is the sort of thing they refer to then I am guilty as charged and I apologise to people on this forum - I do not apologise to Wessely.
     

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