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Dr Charles Shepherd give BBC Radio Interview

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

  1. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi ukme, quite right, several moderators have been notified. Only a moderator can change details like that after the first couple of minutes I think. I certainly have no option to edit it. Bye, Alex
  2. Enid

    Enid Senior Member

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    Interesting thought greg - nothing like "death threats" has ever hit the news in my 11 years and feel W is exaggerating - much anger in the past (criticisms only) as he claimed to be the font of all knowledge on ME as a psychiatric disorder. For his part he has yet to understand the added burden placed on sufferers - am I bonkers as 3 junior Docs insisted on presenting a Psychiatrist to me in Hospital. Don't know anything about death threats but could imagine some loss of patience at his intractable stance over years. If he were more intelligent he might admit to his mistakes.
  3. Countrygirl

    Countrygirl Senior Member

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  4. Enid

    Enid Senior Member

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    How twisted the whole affair has become - the Psyche lobby (jutifiably criticised in the light of overseas science/pathologies/findings - in which they show no interest nor made any contribution) now appear to claim criticism of their flawed PACE trial (and whatever anger that brought) should affect all research into ME. Nothing if not self promotionists these psyches. And changing thoughts - it's their stock in trade.
  5. LaurieM

    LaurieM

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    'Torrent of abuse' hindering ME research

    This has now been reported on the BBC's website:

    http://www.bbc.co.uk/news/science-environment-14326514

    I just can't bear to read it.

    No doubt our 'wonderful' press will pick up on this and repeat this rubbish - I am guessing the disabled hating Daily Mail will be the first to follow.
  6. Esther12

    Esther12 Senior Member

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    Yup - excellent piece of spin, with no reporters likely to do the work/research needed to really understand these issues.

    It seems that the only reason one could be opposed to Wessely's work is if you are stigmatising mental health issues.

    Very emotionally distressing - but doesn't seem to be worsening symptoms.
  7. Enid

    Enid Senior Member

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    If he acquainted himself with more of the facts Tom Fielden might achieve a balanced view. He doesn't. Never saw his so called "torrent of abuse" except that claimed by a small group of self promoting psyches. Their is of course criticism against these in the light of international science/pathology/findings - has he confused scientific "criticism" with abuse I wonder. And if the so called abuse is "torrential" - might there be good reason for it.

    I recall W mentioning "enjoyment" in an earlier interview. Serious researchers do not consider this a debating "game" but apply themselves to the understanding.
  8. Firestormm

    Firestormm Guest

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    Telegraph: http://www.telegraph.co.uk/health/h...ers-receive-death-threats-from-sufferers.html

    If Dr Shepherd had not appeared on this Radio 4 programme - as some insisted he didn't - where would this have gone then? Honest to god sometimes I feel self-appointed 'advocates' are working against my need to get help and simply pushing their own beliefs ahead of everything else on the table and in a way that frankly digusts me.
  9. Enid

    Enid Senior Member

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    Well that's the last Telegraph I buy - can't acquaint themselves with the real facts. Very muddled and very biased. Like much reporting superficial - grab a sensational headline and you're off. Error builds on error and further from the truth each step of the way. The so called scientists "targeted" by protestors are not research scientists but a small powerful group of Psyches - can't even the Telegraph see this. ! Rant over.
  10. Sasha

    Sasha Fine, thank you

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    It was a pity Dr S didn't get to mention the new International Consensus Criteria but I think he did well for a short interview. I agree it would have been terrible if we hadn't had a voice at all on that programme. I don't get that logic at all.
  11. Enid

    Enid Senior Member

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    I must admit to reservations here Sasha - Dr S still speaks of psychiatric cause (possible at one end). So what is he looking at.
  12. Sasha

    Sasha Fine, thank you

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    Hi Enid - yes, I wish he had made a clearer distinction on that. At that point, he was talking about CFS and saying that you have people with a neuro-immune disease at one end and maybe a psychiatric condition at the other, which I would agree with (CFS being the "binbag" diagnosis of "tired with knobs on"). He was saying it needed breaking down into subsets (again, I took him to be saying that CFS should be broken down into subsets).

    I would have liked him to say that ME - which he already defined as a neuro-immune disease and distinct from CFS - should be removed from CFS and not regarded as a subset of it but that if you look at CFS, it's such a broad diagnosis that who knows what's wrong with that big mix of people - a mixture of biomedical disease and undiagnosed psychiatric conditions. I think that's what he was trying to say.
  13. Dolphin

    Dolphin Senior Member

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    Somebody highlighted this elsewhere:

  14. Dolphin

    Dolphin Senior Member

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    Thanks Bob.
    Somebody posted this which explains the format in brief for anybody not familiar with it:
  15. Esther12

    Esther12 Senior Member

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    Does anyone have access to all the quacky Lightning Process stuff? EG the sheet that said you should not apply if you were a critical thinker, that you had to agree to do whatever the trainer told you, that if you failed to recover it was your fault... also the stuff claiming it treated MS? It seems to be off their website now.

    It would be nice to write in with some specific explanations as to why patients are annoyed by this use of limited research money, rather than just have them witter on as if the only possible reason would be an unreasonable stigmatisation of mental health issues.
  16. Bob

    Bob

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    Listen again to the Today program interviews here...

    The full Today program is online here:
    Today 29 July 2011
    (Listen to the interviews at about 1.09 and 2.09)
    http://www.bbc.co.uk/iplayer/b006qj9z/console

    A segment of the Dr Crawley and Charles Shepherd interviews is here (It might be the whole news item - I'm not sure):
    'Vicious campaign' against ME researchers
    http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550992.stm

    There's a segment of the Simon Wessely interview here:
    'Malicious' harassment of ME researchers
    http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm

    There's a MP3 podcast to download here:
    BBC podcasts
    http://www.bbc.co.uk/podcasts/series/today

    There's a BBC web article here, with audio interviews from the Today program:
    'Torrent of abuse' hindering ME research
    http://www.bbc.co.uk/news/science-environment-14326514

    And here's a helpful audio interview with an ME sufferer (Quentin Cruse who has had ME for 25 years) on Radio 5 Live Breakfast:
    ME sufferer says research should be on physical symptoms
    http://www.bbc.co.uk/news/health-14342161
  17. eric_s

    eric_s Senior Member

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    I also think ME should be separated from CFS, even though i've never been diagnosed with ME so far. I also agree one has to try to identify subgroups, but i think even more important would be to stop using bad definitions/criteria. That would clean up the "binbag" diagnosis much better, in my opinion. I think there should be ME and maybe besides that there would still be room for Fukuda CFS. The other, looser, CFS criteria, like Oxford, should be abandoned. I don't see any point in using them, so why keep them only to have to establish subgroups then? People who fit loose CFS criteria but none other might have another illness, so what would really be needed is to identify that illness, or if they have nothing else they could be classified as having idiopathic chronic fatigue, which is good enough in my mind, i think this should be studied as well and these people deserve help as well and should not be left to [you know who].
  18. max

    max *****

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    Poor Mr Wessely.

    I give up.
  19. eric_s

    eric_s Senior Member

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    I think i will probably not listen to this and not even read the thread too much. It's like poison, i think i would be strong enough to handle it, but why expose myself to it in the first place. I think you (UK) should try to move past this crap and try to achieve progress in the right direction instead of spending too much time and energy reading or listening to this madness again and again. I think your ME/CFS organisations would need to take a much stronger stand and clearly refuse these approaches. There is so much scientific data that it should be clear to any halfway reasonable person in what direction to look. And even if there was not, what luckily is not the case, just listen what the *in' patients tell you as a starting point, is that so hard?
    ME/CFS organisations have to make it clear that there can't be any compromise with regards to stuff like what has been mentioned in this thread and others, if they don't do that they are not representing and not serving their constituency, in my opinion. I'm all for dialogue and compromise, where it's possible and makes sense, but what is wrong is wrong and what is hurting the people you should advocate for is hurting them and you can't accept that. You can't back down there. Even if it might be hard to fight some well established figures, if you don't resist, you have already lost. I think your organisations would need to confront them more, so that at least the country realizes there is a problem and a controversy and that people feel treated wrong by the system. If it's serious and large organisatins doing this, with professionals backing them, they can't paint the picture of radicals making death threats, etc.
  20. max

    max *****

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    Hi eric - the media always take the view that it is psycological - that it has been proven to be psycological - and until a physical cause is discovered it remains psycological - Wessely uses our argument when we claims he is the target of ill feeling - you rightly state we in the UK have already lost - I don't know what we can do - we are now totally reliant on US, European and Australian efforts - in the UK, the shrinks have, for now, won.

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