Monday, 29 August 2011

ME in the media

In what now appears to be some kind of organised media campaign, Professor Simon Wessely has in the last month or so been mentioned and featured in many of the major newspapers and on the radio in connection with alleged threats made against him by “ME militants” – all of which has come as a shock and to the dismay of seriously ill ME sufferers as well as to their families and friends.

How is it that Professor Wessely has managed to get his story covered by so much of the media? Could it be anything to do with him being a member of the Scientific Advisory Panel at the Science Media Centre? The Centre has been described as “a body that controls the scientific / medical information that the UK media may report” (for further details click here). Could this also have anything to do with why biomedical conferences and research findings into ME rarely get a serious mention in the media?

First of all, for some background information, please look up the following on the ME Action UK website – they are not recent documents but are very helpful -

The Mental Health Movement: Persecution of Patients? -
http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm

Magical Medicine -
http://www.meactionuk.org.uk/magical-medicine.htm

Not forgetting the trailer for Voices From The Shadows, a documentary about ME due to be released this Autumn -
http://vimeo.com/24683179

I am not going to mention all of the articles and interviews from the last few weeks, or all of the responses to them, but I would recommend these two responses to an interview with Professor Wessely that was broadcast on Radio 4 on 29 July 2011 -

Wessely’s Words Revisited -
http://www.meactionuk.org.uk/Wesselys-Words-Revisited.htm

The real victims of ME are those with the disease -
http://www.publicservice.co.uk/blog_story.asp?id=308

Please see also a response by The 25% ME Group to Stefanie Marsh’s article that was in The Times on 6 August 2011 -
http://niceguidelines.blogspot.com/2011/08/25-me-group-reply-to-stefanie-marshs.html

The following items are in connection with an article that appeared in The Observer on Sunday 21 August 2011 -

Firstly, a response by Susanna Agardy can be found at -
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1108d&L=co-cure&T=0&P=3933

Secondly, this is regarding a letter sent by Professor Malcolm Hooper to The Observer -
http://www.meactionuk.org.uk/Prof-H-Observer-letter.htm

This letter was submitted by Professor Hooper to the Observer, in response to the article by Robin McKie "Chronic fatigue syndrome researchers face death threats from militants", published on Sunday the 21st of August 2011:

http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis/print

Professor Hooper was contacted out of the blue by the reader's editor of the Observer. They spoke at length on the telephone and the editor asked Professor Hooper to respond to Robin McKie's article.

The editor indicated that the responses to the article were building up into a feature length article for the Magazine section and Professor Hooper agreed to submit a longer article as well as a letter.

He received an acknowledgement from the reader's editor saying it was there intention to use the letter but the following day he received a further email from the same person to say it would not be published.

From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland,
SUNDERLAND SR2 3SD

Chief Scientific Adviser to the Gulf Veterans' Association
President: the National Gulf War Veterans and Families Association, NGVFA, (2002)

25 August 2011

Dear Sir

No right-minded person condones any campaign of vilification against psychiatrists but equally, no right-minded person can condone what psychiatrists like Wessely have done to the UK ME community over the last 25 years.

It is indefensible to liken people with ME to the Animal Liberation Front; this is an attack on the whole ME community, not only the few people who have behaved irrationally.

ME has been in the medical literature for the last 70 years and classified by the WHO as a neurological disorder since 1969.

The recent International Consensus Criteria for ME produced by 26 world experts from 13 countries shows ME to be a complex, chronic illness of which post-exertional malaise (inability to recover after exercise) is the cardinal feature. This makes exercise dangerous and sometimes fatal. There are multiple symptoms and multiple clinical signs showing dysfunction and dysregulation of all the major organs and systems of the body.

No NHS clinician has the autonomy to regard ME as a somatoform disorder. The Department of Health has confirmed in writing that: “ICD-10 is an NHS Information Standard…..There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation…. Implementation…applies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre”. The Wessely School psychiatrists, many GPs and NHS neurologists are in breach of this mandate.

For Wessely School psychiatrists to continually ignore the scientific evidence is wilful ignorance but to advise the DWP decision-makers and train ATOS examiners that ME is a mental disorder is deceitful and abusive; to section patients with ME and remove them from their distraught families is abusive; to make sick people worse by inappropriate interventions is abusive; to deny them financial support necessary to survive is abusive; to mock them and to misinform others about their serious disorder is abusive; to insist that they suffer from wrong thinking and a fear of activity when they suffer from a very serious medical disorder with reproducible multiple systemic abnormalities is abusive.

These psychiatrists, who have direct and lucrative links with the Insurance industry, have been reported to Parliament. The industry stands to lose £ millions if it has to pay out for a severe life-long physical illness whereas psychiatric (functional, somatoform) conditions are usually excluded and lower benefits paid by the DWP.

The true ME story has yet to be told.

Malcolm Hooper

In addition to the above letter, Professor Hooper’s longer and more detailed response to the article in The Observer can be found by clicking here.

Finally, could it be merely a coincidence that all of this media coverage has come at a time when a panel of 26 experts and clinicians from 13 countries has published a new International Consensus Criteria for ME in the Journal of Internal Medicine? The new Criteria are summarised here. I don’t recall this being widely mentioned in the UK media ... Nor can I remember widespread mention of the 6th Invest in ME International ME/CFS Conference held in May of this year ...

Food for thought.

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