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CFS etc over on Bad Science

Discussion in 'Action Alerts and Advocacy' started by Angela Kennedy, Apr 23, 2010.

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  1. Knackered

    Knackered Guest

    Unfortunately some people on this board believe shaking a molecule of salt back and forward an unspecified number of times in solution is efficacious in the treatment of irritability.
    I posted a video of James Randi "overdosing" on homoeopathic sleeping pills and a couple of people opposed the notion that homoeopathy was quackery, one even went as far to say James Randi was an idiot.

    http://www.parliament.uk/parliamentary_committees/science_technology/s_t_homeopathy_inquiry.cfm

    It annoys me because it's this sort of quackery by the work of Weasely pointed out by Gerwyn and others why we're all still ill after all this time.

    I suppose this isn't the thread for it though. Back on track...
     
  2. Angela Kennedy

    Angela Kennedy *****

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    Yup. Also in regard to the notion of 'mind-body healing' too. 'Woo', anyone?
     
  3. Angela Kennedy

    Angela Kennedy *****

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    Exactly. Thank you Koan.
     
  4. Angela Kennedy

    Angela Kennedy *****

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    MJ

    There is something else to add here. While Simon Wessely has been a key 'player' in psychogenic explanations for 'CFS' or 'ME', he is not alone. Most people are not on some sort of 'Wessely-bash'. They (we) are critiquing the whole psychiatric paradigm of these illnesses, and there are many more people practising the what I and no doubt others would term 'bad science' in this area.

    I thought it significant that the 'Bad Science' forum chose to start a thread about Wessely, rather than the psychiatric paradigm. It allowed an inappropriate focus on Wessely, leading to a facade of preoccupation with the man rather than his flawed theories and practices.

    As someone who in the past has been falsely accused of being preoccupied with Wessely (it's a useful ad hominem I suspect, which is why it's used against the community so often), I can tell you it's the psychobabbly paradigm he espouses that is the problem, and in that he is not alone. Him as a person - no idea. Don't care. No offence.

    Having said that, Wessely is regularly interviewed in the lay press on 'CFS/ME' (including New Scientist) saying some amazing things (like the French don't catastrophize!!!), so he is still prolific. People still have to tackle him as much as anyone else.
     
  5. xanadu

    xanadu

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    ...because you or a Guardian colleague intend to write up the Myhill hearing?
     
  6. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Who could blame Ben for seeking to distance himself from the forum.

    The background noise of images of canine genitalia and whale penises - or penes, if you prefer - does not suggest a platform where reasoned debate is encouraged, or possible.

    I've given up trying to plough through the dross.
     
  7. Gerwyn

    Gerwyn Guest

    I could not agree more it is worse than going through the pseudo science written by psychiatrists
     
  8. natasa778

    natasa778 Senior Member

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    Maarten, you've just struck a sword right through the vampire's heart!
     
  9. jace

    jace Off the fence

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    Hi Martin,

    You are aware of the power Simon Wessely wields, aren't you? He seems to be on every advisory committee.

    The guidelines under which we receive our "care" from the NHS are strongly influenced by his hypothesis that 'CFS is a somatic condition and can be treated with Graded Exercise and CBT' and by the widening of the diagnostic guidelines that he was instrumental in to the Oxford Criteria, whereas the true ME patient is better described by the Canadian Consensus Criteria which you can view here

    His name is on many studies, some purporting to show that there is no XMRV in the UK, and some that CBT and GET are curative for our physical illness. The WPI response to his XMRV study retrovirologist is revealing. Link to the PDF on this page (April 10th)

    It was these Wessely influenced NICE guidelines that led a neurologist and a GP to section Sophia Mirza, forcibly removing her from her home where she was being well cared for, because they thought the family had 'inappropriate illness beliefs', to a mental institution where denied the physical care she needed - through ignorance or neglect - a short time later she died.

    Never mind the case of Ean Proctor. And the others. You can find all the evidence online. So perhaps because
    a/. The mans work has denied myalgic encephomylitis sufferers any real medical help, whereas Dr Myhill tries to work with the science
    b/. Wessely has also cast a negative image of sick people which colours the way our families, friend and work colleagues treat us, whereas Dr Myhill has talked truth about the realities we face
    c/. The effect of his mission to psychologise the causation of ME/CFS has made it harder for us to get the state support we need to survive, and the effort involved in that also causes relapses for which we are denied help or biomedical tests that are actually relevent to this illness, because of Wessely's work, while Dr Myhill does arrange appropriate tests and treatments.

    Of course, Simon Wessely is not alone in his attitudes, but he tends to head up the teams he is on these days. CFS has so far done his career no harm at all.
     
  10. Gerwyn

    Gerwyn Guest

    Dr wesselly himself is insignificant.The problem is that he symbolises psychiatric views and approaches which purport to be scientific when they are anything but.He is a stereotype of archaic practices which belong in a bygone age.Freud is long dead yet psychiatrists cling to the products of his mind despite the corruption.It is highly likely that his cocaine addiction led to his ramblings. It is quite ironic that psychiatrist hold the erroneous beliefs of Freud as fact and classify facts reported by sufferers of ME as erroneous beliefs
     
  11. lotusflower

    lotusflower

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    They have deleted loads of stuff over at bad science now They have edited the post where Jonas said he found the whole thing around his complaint was quite funny, and that it was amusing as well as other info, which I wont mentnion as I don't want to draw attention it it so they go and delete ..damn.



    did anyone copy it, or at least can get it copied as some of the stuff on there is slander
     
  12. Knackered

    Knackered Guest

    What were they saying?
     
  13. valia

    valia Senior Member

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    The One Click Group did:

    http://www.theoneclickgroup.co.uk/news.php?start=3460&end=3480&view=yes&id=4678#newspost
     
  14. Robin

    Robin Guest

    Psychiatry has its issues, surely, but it can be literally a lifesaver for mentally ill people. The progress made in psychiatry in the last 50 years has been remarkable.

    I have a lot of mental illness in my family and have seen first hand the benefits of psychiatry and psychiatric medication can do to help people. What a small subset of psychiatrists have done with ME/CFS is unconscionable, but, it doesn't mean the profession as a whole is useless or unscientific.

    It sounds like a lot of the people at Bad Science are arguing that we simply do not want to accept that we are mentally ill. There's nothing shameful or bad about being mentally ill, it's simply not applicable. Treating ME/CFS with an antidepressant is like treating schizophrenia with an antibiotic. In truth, I would prefer to have a somatic disorder to having ME/CFS simply because it would be treatable.
     
  15. xanadu

    xanadu

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    mjrobbins on Ean Proctor and his parents

    As Guardian blogger and Goldacre shill mjrobbins is on a fishing expedition on this forum, it's worth archiving his defamatory comments about Ean Proctor and his parents - just in case someone decides to erase them over there.

     
  16. Marco

    Marco Old blackguard

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    Welcome to the forum Martin.

    You couldn't find a better place to inform yourself properly about the illness known as ME/CFS.

    First suggestion. Check out the library section. There you will find an awful lot of GOOD SCIENCE and there would be much more of this if only public perceptions and funding hadn't been hijacked by vested interests. Read a few of the posted articles and note the qualifications of the authors, their speciality, their methods, the balanced reporting of their findings and the fact that they are objectively measuring physiological abnormalities. Now contrast that to the literature that proposes pyschological theories, such as somatoform disorder, without being able to objectively demonstrate their existence or describe their MO; that identifies a patient cohort based on 'fatigue' only and excludes anyone with evidence of any organic pathology; that measures 'improvement' based on snapshot measures of perceived fatigue rather than longtitudinal measures of actual physical activity, that ignores patients' other symptoms regardless of whether they improved or deteriorated; that excludes patient drop out and negative comments in reporting results; that quote confidence intervals that render any results meaningless and that publish using an incestuous group of 'peers'. I could go on.

    Secondly I highly recommend the summary version of the Canadian Consensus Document if you want to know what ME/CFS really is :

    http://www.mefmaction.net/documents/me_overview.pdf

    Most of us would agree that the CCD captures our experience of ME/CFS better than any previous document. Now contrast the description of the illness with populist views of ME/CFS as 'tired', 'yuppie flu', 'malingering', 'work shy' or the seemingly scientific but equally shallow theories put forward by psychologists like 'predisposing personality, 'exercise phobic', 'deconditioned', 'catastrophising', 'somatoform disorder'. The reason we rail against psychological explanations is not that we have a vested interest in having an organic illness, or that we have any disrespect for those with conditions that would respond to psychological/psychiatric treatments, its because psychological explanations of this illness are just plain WRONG. Wouldn't any rational individual, suffering from a multi system neurological disease, feel deeply betrayed to see scarce research resources syphoned off into wrong headed and ultimately worthless 'treatments' while being denied ANY real treatment from our public health services?

    Thirdly, as to why we appear to single out the Wessley school for particular criticism, you really owe it to your employer (The Guardian) to thoroughly read Professor Hooper's Magical Medicine, available here :

    http://magical-medicine.blogspot.com/

    Even a cursory glance at Professor Hooper's letter to the health Minister, Lord Drayson, should convince you that this is a major public interest story and that UK taxpayers would be horrified at the misuse and waste of public monies. If you, or your Bad Science colleagues, really want to be heroic and stand up against quackery, this is the place to start.

    Stick around here and you will find that many here were intelligent, successful, energetic and even athletic individuals looking forward to a full and rewarding life before being struck down by illness. We did not become lazy or disillusioned overnight, did not become physically deconditioned overnight, did not become exercise phobic or suddenly develop strange irrational illness beliefs. We just got ill and were left to fend for ourselves.

    If we sometimes come across as a little 'strident', is it any wonder?
     
  17. Knackered

    Knackered Guest

    I think we know what MJRobbins thinks about our condition:
    http://twitter.com/Mjrobbins

    He's been twittering about this:
    http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T70-3RH6Y8W-3&_user=10&_coverDate=05%2F31%2F1997&_rdoc=1&_fmt=high&_orig=search&_sort=d&_docanchor=&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=234ba3f2fd6a35fc6eb154a4ff3c8b4a

     
  18. Adam

    Adam *****

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    I want to second Marco's post and a number of others in this tread including from memory, Jace.
     
  19. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Maarten,

    On 20 September 2001, the Guardian published an article by Health Editor, Sarah Boseley, called:

    Storm brews over all in mind theory of ME

    http://www.guardian.co.uk/uk_news/story/0,3604,554693,00.html


    Here's another Ms Bosely wrote the following week:

    A very modern epidemic, Guardian, 27 September 2001]

    http://education.guardian.co.uk/higher/medicalscience/story/0,,559001,00.html

    It was the Guardian that was host to "Dr Crippen" before he retired a few months ago.

    There has been recent coverage, by the Guardian, of the PlosOne ICL/KCL XMRV paper.

    http://www.guardian.co.uk/lifeandstyle/2010/jan/06/chronic-fatigue-syndrome-xmrv-virus

    All will give you a flavour of Guardian coverage of ME and CFS issues.
     
  20. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    I believe the administrators will grant library access upon receipt of a reasonable request. I might state who i am and a reason for desiring access. Bet they would open the door. s
     
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