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Professor Hooper's response to BBC Radio 5 ME programme

Discussion in 'General ME/CFS News' started by Daisymay, Aug 1, 2011.

  1. Daisymay

    Daisymay Senior Member

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    This is being sent on behalf of Professor Hooper. Permission to repost.


    Dear Victoria

    I rang 5 Live, on Friday July 29th, to join in the debate on ME following the item on Radio 4 that was followed-up on 5 Live. (http://www.bbc.co.uk/iplayer/console/b012nlcv)

    I briefly stated my concerns, qualifications, etc; 5 Live phoned back after about 5 minutes but almost immediately I was put on hold with the programme running in the background but no communication from anyone on the programme. After almost 30 minutes I finally had to put the phone down to attend to visitors whom I had kept on hold for your programme. The lack of any contact from anyone on the programme team I found extremely disappointing not to say discourteous.

    The programme concentrated on the sensational claims that death threats and warnings had been issued against some psychiatrists who carried out research into CFS but no objective evidence was presented, only the impression of one participant, paediatrician Dr Esther Crawley.

    These alleged threats and warnings actions were described as the abuse of scientists.

    However, nothing was mentioned about the abuse of patients by these psychiatrists and others who promulgate the view that CFS/ME is a mental and behavioural disorder in defiance of the WHO classification of the illness, for example, sick patients sectioned under the mental health act and confined to locked wards,
    children and young people forcibly separated from their parents, and parents accused of Munchausen's-Syndrome by Proxy.

    The evidence is in the public domain, http://www.sophiaandme.org.uk/ with full medical records for Sophia Mirza, http://www.sophiaandme.org.uk/documents index.html . Ean Proctors story describes positively medieval actions that have more in keeping with the Inquisition than modern medicine (see Skewed by Martin Walker ISBN0-9519646 and Denigration by Design by Margaret Williams who also describes the case of Child X and Wesselys role in the story, http://www.meactionuk.org.uk/Denigrationbydesign.pdf See also Voices from the Shadows, a recently issued trailer for a DVD that tells the story of very sick ME patients.

    The vested interest of many psychiatrists dealing with ME/CFS who are deeply involved with the insurance industry was exposed in the Gibson Parliamentarians report that asked for an investigation of these links. Nothing has been done to investigate this unsatisfactory situation. Consequently, the false diagnosis of ME/CFS as a mental illness has resulted in sick patients being denied financial support and benefits, a matter of great concern following the introduction of new benefits legislation.

    The recently published International Classification of ME, July 2011, was ignored. One member of the international team was Dr Nigel Speight, a paediatrician specialising in ME who has been involved in many cases where compulsion and abuse by doctors required legal intervention.

    The cardinal feature of ME, post-exertional malaise (post-exertional neuroimmune exhaustion), was not mentioned by anyone in either programme, rather the word fatigue was used misleadingly to describe ME. The numerous and well documented clinical signs (neurological, cardiovascular, endcrinological and immunological) were not mentioned. Nor were the deaths arising from ME, especially that of Brynmor John MP who collapsed and died following prescribed/advised physical exercise.

    There was no mention of the effective treatments of ME reported in the biomedical literature (some 5000 papers) that have been repeatedly ignored by Professor Wessely and his followers.

    If the adverse, even vilifying, attack on people with ME is to be broadcast as fact and the science of the illness ignored, the BBC should at least properly research any programme before it is put out. In the interests of natural justice and transparency, so beloved of our politicians and organisations such as the GMC and NICE, then the whole story must be told.

    We have recently called for the retraction of the PACE trial study published in the Lancet and await a response to our detailed criticism of this paper that is a travesty of science, a tragedy for patients, and is tantamount to fraud. Good science is being denied/ignored in order to promulgate the unsustainable psychiatric view of ME.

    Please accept this letter as one of complaint for a very biased and uninformed programme and please act accordingly to put the facts of this complex, chronic and debilitating illness in the public domain in a programme worthy of the BBC.

    Malcolm Hooper
    2, Nursery Close
    Sunderland SR3 1PA
    01915285536
    for more information/writings see www.meactionuk.org.uk
     
  2. Enid

    Enid Senior Member

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    What would we do without Prof Hooper in the UK. Many thanks daisymay. The sensationalism of what's just happened here by the psychos (well they would know well how to manipulate and distort wouldn't they) - is sickening. Abuse of leading research scientists referred to is quite incorrect - they are neither. None are Neurologists, Virologists, Immunologists, Geneticists, Gastroenterologists (the list goes on) from whom all the biomedical/pathology findings pour in from overseas. The so called leading scientists here seem to be reduced to spin and sensationalism finding they have no legs to stand on anymore.
     
  3. jace

    jace Off the fence

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    Thanks for posting, Daisymay.

    The unbelievable but true fact that Prof. Wessely has been put in a position as gatekeeper to information, funding and treatment by successive governments, and now controls the information on ME fed to the media by the Science Media Centre (now housed by the Wellcome Trust), the medical policies of the NHS under the NICE guidelines (don't test, don't treat, cure their false illness beliefs), and the public funding of research via the Medical Research Council means that he is able to spin stories, as we saw last Friday, with impunity and with little regard to the facts.

    Spin Friday was sad day for the BBC's reputation as a responsible broadcaster.

    XXX to Prof. Hooper XXX
     
  4. Tulip

    Tulip Guest

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    Great response, as usual. Go prof hooper.
     
  5. justy

    justy Donate Advocate Demonstrate

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    Thanks for posting this here, i always look forward to reading Prof Hoopers letters. I sincerely hope that his hard work for the M.E community and their families comes to something and thaty his letters and opinions are treated in the wider community with the respect they deserve.

    My personal feeling on all of this latest spin is that it is just that -a way of taking the focus away from the new International Criteria and away from any serious research that is being done. It feels as though there is a small speck of light at the end of a long tunnel and prof. Wessley and his supporters may be beginning to see their ideas being ripped apart and crumbling. I honestly do believe that we will have a situation where the idea of M.E being seen as a somatisation disorder by the mainstream in the U.K will be soon over and will seem ridiculous and outdated.
    Justy.
     
  6. Enid

    Enid Senior Member

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    I share your optimism justy - once "Spin Friday" has died down (or even that in a strange way may have aided by responses). There is advocacy in so many places now - parliamentarians, Lords, charities, academics, Docs etc. - research findings pouring in from overseas, pathologies understood etc. Prof Hooper's tirelessness over decades has been nothing but pivotal.
     
  7. In The Netherlands, we have the ME/CVS Stichting - not run by patients and funded by the government - that is spreading the BBC story as though it were true. Quite nauseating.

    Our own comment is a bit different.
     
  8. Battery Muncher

    Battery Muncher Senior Member

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    This is the best damn thing I've read all week. Thank you for posting this.
     

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