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.

Thursday, 11 August 2011

Doubt and Assurance

Another poem from “Echoes of Eternity” by Michael R Abbott; used with permission.

Doubt and Assurance

If I died and went to heaven
In my present sinful state,
I would spoil the Holy City
Just by passing through its gate.
I do feel to be unworthy
And I know that it is true.
Is there any hope for sinners?
Is there aught that I can do?

If I spend my days in worship
And in prayer to God above,
If I seek to help the needy
Through my acts of Christian love,
If I give my life a martyr
In the service of the King,
Yet my sin cries out against me
And my works no comfort bring.

Yet the Bible gives an answer:
There is hope if I should heed
And fall down before the Saviour
To confess my deepest need.
For He died to make me worthy
And to cleanse me from my sin:
Jesus is the gate to heaven
And He waits to let me in.

I shall go there clothed in beauty
With a robe of righteousness,
Which through Jesus is provided,
Such is His delight to bless.
All my sin is taken from me
And cast in the deepest sea:
Thus I shall be with my Father
Throughout all eternity.


Monday, 8 August 2011

The 25% ME Group reply to Stefanie Marsh’s article about Professor Simon Wessely in The Times

http://niceguidelines.blogspot.com/2011/08/25-me-group-reply-to-stefanie-marshs.html

Following on from the Interview with Professor Simon Wessely in The Times on 6 August (see http://www.meassociation.org.uk/?p=7552), the 25% ME Group (http://www.25megroup.org/) have written a response -

Permission to repost.

The 25% ME Group sent this to The Times

The 25% ME Group is the only UK charity representing just severely affected ME sufferers, we would like to request a right of reply to the article by Stefanie Marsh in The Times, 6 August 2011.

Stefanie Marsh’s article about Professor Simon Wessely "the most hated doctor in Britain” begins by naming him Britain’s foremost authority on ME. This may be his opinion, but it is worth reminding readers that medics worldwide who treat and study ME disagree with Professor Wessely that the illness is psychiatric. Substantial and significant published research shows ME to be organic, not psychiatric and it is considered to be so by doctors in all fields other than psychiatry.

The renowned expert Dr Byron Hyde said "The belief that [ME] CFS is a psychological illness is the error of our time."

In 2004 the Countess of Mar claimed in the House of Lords, "Since his arrival on the scene in 1987, Wessely has repeatedly and persistently played down, dismissed, trivialised or ignored most of the significant international biomedical evidence of organic pathology found in ME because it does not fit his psychiatric model of the disorder”. She went on to call him "savagely cruel to the ME community”. This is a view of Simon Wessely that it may have been useful to explore in an article that seems astonished that some ME patients are angry with him.

In Stefanie's article Wessely states "a pessimistic illness perception can become a self-fulfilling prophecy of non-recovery". "Patients tend to view their symptoms as part of an overwhelming, mysterious, unexplainable disease that struck them out of the blue and from which they most likely will never recover."

A very quick internet search would have found The Case Definition for ME compiled by the world's leading authorities on ME which makes these "beliefs" seem more like reality. It states that it is "a severe systemic acquired illness" that "follows an acute infection" and that previously "patients had been healthy, living full and active lifestyles".

It quotes studies that show less than 10% of patients return to pre-illness levels of health and claims that loss of quality of life is more than for "many other chronic illnesses”. The article presented Wessely as a victim of abuse from ME sufferers. However the real victims of this story could be seen as the thousands of ME patients whose lives are drastically affected by dangerous and unproven assumptions that nothing is physically wrong with them.

The recent deaths of Sophia Mirza and Lynn Gilderdale show where this can lead.

Patients anger at Wessely’s loud and damaging mis-diagnosis, like the anger of MS patients when psychiatry labelled it hysterical paralysis, is not based on prejudice against mental illness but on the fact that they will not receive treatment or a cure if Wessely's therapy is all that is offered.

As the Countess of Mar pointed out, the end result of Wessely’s proclamations is "that patients receive no investigations, support, treatment, benefits or care”.

25% ME Group
Troon
Ayrshire


Monday, 1 August 2011

The real victims of ME are those with the disease

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

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