Prof Mansel Aylward and the RSM

Professor Mansel Aylward, Director, Unum Centre for Psychosocial and Disability Research, Cardiff University, was one of the session chairs at the Royal Society of Medicine’s “CFS” Conference held on 28 April.

Conference Programme here

Readers may not have been aware that Professor Aylward is also a Sub Dean of the Royal Society of Medicine (Regional Sub Dean for Wales).

According to http://www.cardiff.ac.uk/psych/unum/staff/index.html and the RSM’s website, Professor Aylward was appointed Royal Society of Medicine’s Academic Sub Dean for Wales in 2001.

 

http://www.rsm.ac.uk/regions/regions_wales.php

Wales
Honorary Sub-Dean

Professor Mansel Aylward

Email: wales@rsm.ac.uk

Professor Mansel Aylward CB MD FRCP FFOM FFPM is Director of the UnumProvident Centre for Psychosocial and Disability Research at Cardiff University, Wales.

The Centre for Psychosocial and Disability Research at Cardiff University is the first of its kind to offer a unique opportunity to extend our knowledge and understanding of the psychosocial, social, economic and cultural factors that influence health, illness and disease, recovery, rehabilitation and reintegration into rewarding work.

He is also chair of the Wales Centre for Health which is a new body, established by the Welsh Assembly Government, to lead improvements in the nation’s health.

It aims to approach issues in a new way by advocating on public health issues, engaging with the public and their communities, advising on their concerns, and speaking independently on health, free from corporate or economic interests.

In July 2005 he became a Trustee of The Shaw Trust which provides training and work opportunities for people disadvantaged in the labour market due to disability, ill health, or other social circumstances.

From 1996 to April 2005 he was Chief Medical Adviser, Medical Director and Chief Scientist to the United Kingdom’s Department for Work and Pensions (DWP). He was also Chief Medical Adviser and Head of Profession at the Veterans’ Agency, Ministry of Defence.

He was made a Companion of the Bath in the Queen’s Birthday Honours List 2002. In 2001 he was appointed as The Royal Society of Medicine’s Academic Sub Dean for Wales.

He is a physician and specialist in rheumatology and rehabilitation, therapeutics and clinical pharmacology; a visiting Professor at several universities in Europe and North America and a consultant to the United States Social Security Administration and Department of Labour.

He entered the British Civil Service in 1985 and was appointed Chief Medical Adviser at the Department of Social Security in 1996 and at the Department for Work and Pensions in 2000. From 1974 to 1984 he was Chairman and Managing Director of Simbec Research Ltd, UK, and President of Simbec Inc, New Jersey USA.

He played a key role in development and evaluation of the UK’s medical assessment for incapacity (the All Work Test), and was heavily involved in developing the Personal Capability Assessment (PCA). He led the Corporate Medical Group on the UK Government’s Welfare Reform initiatives and made a major contribution in establishing the new postgraduate diploma for doctors in Disability Assessment Medicine.

He was closely involved in developing the UK’s successful “Pathways to Work” initiatives and a framework for Vocational Rehabilitation. He is keenly interested in addressing the health, work and social issues relevant to morbidity, mortality, work inactivity and social exclusion in the South Wales Valleys where he was born and brought up.

His interests are in rheumatology and rehabilitation, health and productivity, psychosocial illnesses, chronic fatigue syndromes and back pain disability. He has published widely in these various areas.

Faculties Failure? Margaret Williams

The article below was published by Margaret Williams and circulated on 25 May 2008 by Jan van Roijen’s Help ME Circle mailing list and can be read on the MEActionUK website. Any queries relating to the content of any of Ms Williams’ articles should be directed to Stephen Ralph of MEActionUK, not to ME agenda. 

The abstract for the paper to which Ms Williams refers in this commentary can be read here:
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1600-0447.2008.01200.x

The commentary on Professor Simon Wessely’s continued involvement in CFS research by Suzy Chapman and Ciaran Farrell, Professor Simon Wessely: Retired, tired or hired? can be read here:

http://meagenda.wordpress.com/2008/04/22/professor-simon-wessely-retired-tired-or-hired/ 

 

Faculties Failure?

by Margaret Williams
25th May 2008

There can be few in the international ME/CFS community, either researchers or sufferers, who are not profoundly dismayed at yet another article co-authored by Professor Simon Wessely that fails to  distinguish between patients with chronic fatigue and those with chronic fatigue syndrome.

His article Physical or Psychological a comparative study of causal attribution for chronic fatigue in  Brazilian and British primary care patients (Acta Psychiatr Scand May 2008: doi:10.111/j.1600 0447.2008.01200.x) fails to distinguish between chronic fatigue and chronic fatigue syndrome, the latter also being referred to as myalgic encephalomyelitis.

For peer-reviewers of a highly-rated journal such as Acta Psychiatrica Scandinavica (which has an impact factor of 3.857, this being a high score, since 90% of journals score less than 1 on impact rating) to have allowed such blatant misrepresentation to have escaped censure is alarming.

It is a matter of record that when serious errors and misrepresentations in his published articles (which, when challenged, even Wessely himself cannot rationally condone) have been pointed out to him and to Editors, Wessely blames his peer-reviewers.  One instance of this occurred in 1997 in relation to his article in the Quarterly Journal of Medicine (The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review. Joyce J, Hotopf M, Wessely S. Q J Med 1997:90:223 233), the many flaws of which were exposed by Dr Terry Hedrick (a research methodologist) in a bullet-proof analysis that was published in Q J Med 1997:90:723-725. To quote Hedrick: Patients beliefs in organic bases for their illnesses may be more accurate than anything else we have to offer at this time. Not only did the Joyce et al article fail to summarize the psychiatric literature accurately, it omitted discussion of the many avenues now being explored on the organic  underpinnings of (ME)CFS.

This is not an isolated example of Wessely blaming his peer-reviewers. There have been others, for  example, when UK medical statistician Professor Martin Bland from St Georges Hospital Medical  School, London, pointed out significant statistical errors in a paper by Wessely and Trudie Chalder,  saying that Wesselys findings were clearly impossible, Wessely absolved himself from any blame.

Bland was robust: Potentially incorrect conclusions, based on faulty analysis, should not be allowed to remain in the literature to be cited uncritically by others (Fatigue and psychological distress. BMJ: 19th February 2000:320:515-516). Wessely was compelled to acknowledge on published record that his figures were incorrect: We have been attacked by gremlins. We find it hard to believe that the usually infallible statistical reviewers at the BMJ could have overlooked this and wonder, totally ungallantly, if we can transfer the blame to the production side.

Will Wessely once again try to blame his peer-reviewers for this latest confusion and absolve himself from any blame? By what mental mechanism does he continue to dissociate himself from the fact  that his personal belief that ME/CFS is a behavioural disorder is unsupported by hard evidence? Is he unmoved by the body of irrefutable evidence that has shown him to be wrong? That body of evidence is not going to go away. Why does he continue to deny it?

How often must it be pointed out that it was in 1990 that the American Medical Association made it plain that chronic fatigue and chronic fatigue syndrome are not the same? The AMA statement said: A news release in the July 4 packet confused chronic fatigue with chronic fatigue syndrome; the two are not the same. We regret the error and any confusion it may have caused.

And yet – eighteen years later – here we have  Wessely and his co-authors still using the terms  chronic fatigue and chronic fatigue syndrome and myalgic encephalomyelitis synonymously.

Does this not amount to scientific misconduct?

The title and the abstract of his latest paper refer to chronic fatigue but the text refers to chronic fatigue syndrome and ME.

Given the fact that chronic fatigue is not synonymous with ME/CFS, the authors cannot possibly be talking about patients with ME/CFS, yet they claim to be doing so: Chronic fatigue syndrome (CFS),  sometimes also known as myalgic encephalomyelitis  (ME)…

Once again, this is in rank defiance of the World Health Organisations International Classification of  Diseases (ICD-10, 1992), which classifies fatigue quite separately from ME/CFS; moreover, the WHO  has provided written clarification that it is not permitted for the same disorder to be classified to  more than one rubric. Fatigue is classified as a mental disorder whilst ME/CFS is classified as a  neurological disorder.

Why is Wessely continually permitted to defy such international taxonomic principles?

Unsurprisingly, this latest paper is replete with self-references.

In it, Wessely states emphatically: British primary care patients with unexplained chronic fatigue were  more likely to attribute their fatigue to physical causes than their Brazilian counterparts.

Wessely acknowledges that: The study participants were not randomly selected representative samples from the healthcare seeking population yet his conclusion is categoric: Causal attribution influences symptom experience, help-seeking behaviour and prognosis in chronic fatigue syndrome.

Wessely states: Less explored is a possible variation in causal attribution between sociocultural settings and to what extent physical attribution consistently associated with a poor prognosis of CFS is enhanced by sociocultural variables more frequently observed in Western affluent countries such as the UK. These include the sociopolitical debate about the nosological status of CFS in general and for disability benefits in particular.

Somewhat unexpectedly, Wessely concedes that CFS is officially endorsed as a medical condition in the UK, citing A report of the CFS/ME working group: report to the Chief Medical Officer of an independent working group. Hutchinson A. cited 2007 September 23 (i.e. the Report to the CMO). This is notable, given that the original report of 11th January 2002 specifically omitted to accept the WHO classification of ME/CFS as a neurological disorder.

If Wessely concedes that CFS is officially endorsed as a medical condition in the UK, why does he refer to it as unexplained chronic fatigue (UCF), which is a WHO classified mental disorder?

It is a straight-forward enough concept, so once again it has to be asked what is it about this  concept that Wessely seems so continually unable or unwilling to understand?

In this latest paper, patients in the study with unexplained chronic fatigue were identified using the  Chalder Fatigue Questionnaire, which is said to identify substantial chronic fatigue lasting six  months or more. How this matches the criteria for ME/CFS such as the 2003 Canadian definition by  Carruthers et al is not explained. The authors state: The questionnaires were read out to illiterate
(Brazillian) participants. Those who fulfilled criteria for CFS were then asked to answer questions on  causal attribution, duration of fatigue, and the Centre for Disease Control and Prevention (CDC) 1994 case definition of CFS.

Furthermore, the authors state that they relied upon an estimated prevalence of chronic fatigue and on an assumed prevalence of UCF.

Despite a study cohort that seems to be a conglomeration of ill-defined participants, Wessely  et al state: More widespread awareness of CFS/ME in the UK may lead to a greater likelihood of British  patients viewing their fatigue via a biomedical perspective than their counterparts in Brazil. In the  UK, most media and self-help material provided by patient organisations are more likely to promote  physical rather than psychological explanations (and) the health care system, which labels fatigue as a medical condition, may further reinforce this tendency.

No reference is provided to support the assertion that the UK health care system labels fatigue as a  medical condition.

The authors state: Social support provided in a way which fosters dependency can help maintain chronic fatigue (and) there is an association between secondary gain and health outcomes (in) functional somatic syndromes.

Wessely et al supply no references to support their claim, and seem to ignore the fact that both the  Canadian and Australian guidelines reject such a notion.

Despite Wessely’s acknowledgement that there was a high non-response rate in the UK (Approximately 30% of the eligible patients in the UK did not complete phase 2 in comparison with only 6% in Brazil), the conclusion is that The higher availability of sick leave / sickness benefit because of CFS in the UK may both contribute to and reflect the greater legitimsiation of chronic fatigue as a medical disorder. The findings of this study lend some support to the evidence on the important role of sociocultural factors in shaping illness attribution and perception around chronic  fatigue and chronic fatigue syndrome.

It cannot be emphasised enough that unexplained chronic fatigue is not the same as ME/CFS.

At the Second World Congress on CFS and related disorders held in September 1999 in Brussels, Dr  Daniel Peterson from the US said that ten years ago (i.e. in 1989), he believed that (ME)CFS would be
resolved by science, but that he had now changed his mind and believed that it could only be resolved by politics.

It is politicians whom Wessely advises on CFS/ME and it is politicians who implement his advice,  without seeming either to be aware of or to care about the enormous body of scientific evidence  demonstrating that Wessely is simply wrong to lump chronic fatigue with ME/CFS as a single entity.

Can it be right that politicians should now control the science of medicine?

Wessely seems to think so. His latest paper seems to be saying that if Social Security benefits are  stopped, patients will stop having ME/CFS.

This contradicts the NICE Guideline on CFS/ME that was published in August 2007, which clearly said  that it was the doctors job to support CFS/ME patients in obtaining benefits.

It seems that Wessely disagrees.

Margaret Williams
25th May 2008

 

ME in Parliament: May 2008 (2)

Compiled by Dr Marc-Alexander Fluks

Source: UK House of Commons

Date: May 13, 2008

URL:

http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080513/text/80513w0024.htm

[Written Answers]

Chronic Fatigue Syndrome: Health Services

Dr. Desmond Turner

To ask the Secretary of State for Health,

(1) what steps his Department plans to take to assess what services are offered to children and adults who are bedbound or housebound due to the effects of myalgic encephalomyelitis/chronic fatigue syndrome; [203960]

(2) what steps his Department plans to take to address the geographical gaps which exist in local specialist services for people with myalgic encephalomyelitis/chronic fatigue syndrome; [203961]

(3) what steps his Department is taking to encourage primary care trusts to implement the recommendations of the new guidelines on myalgic encephalomyelitis/chronic fatigue syndrome produced in August 2007 by the National Institute for Health and Clinical Excellence. [203964]

Ann Keen

Health professionals are expected to use their clinical judgment taking into account best practice and existing clinical guidelines, including those produced by the National Institute for Health and Clinical Excellence, to provide the most appropriate treatment for the individual living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

We have made no assessment of the services provided for children and young people.

We have no plans to address any geographical gaps in the provision of local specialist services. Local health bodies have a duty to commission health and social care services to meet the needs of their local population, including those living with CFS/ME.

(c) 2008 Parliamentary copyright

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Source: UK House of Commons

Date: May 13, 2008

URL:

http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080513/text/80513w0024.htm

[Written Answers]

Chronic Fatigue Syndrome: Health Services

Dr. Desmond Turner

To ask the Secretary of State for Health what steps his Department is taking to reduce the average time taken to diagnose myalgic encephalomyelitis/chronic fatigue syndrome. [203963]

Ann Keen

Diagnosis for chronic fatigue syndrome/myalgic encephalomyelitis can be prolonged as there is no  specific test for this condition, and therefore other diseases with similar symptoms must be ruled out before a diagnosis can be made.

The recent guidance produced by the National Institute for Health and Clinical Excellence provides a list of medical tests that should be used to rule out other conditions.

(c) 2008 Parliamentary copyright

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Source: UK House of Commons

Date: May 13, 2008

URL:

http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080513/text/80513w0025.htm

[Written Answers]

Chronic Fatigue Syndrome: Young People

Dr. Desmond Turner

To ask the Secretary of State for Health what steps his Department plans to take to address the effect  on paediatric services for children and young people with myalgic encephalomyelitis/chronic fatigue syndrome of the closure of units in Leeds, Stevenage and London. [203971]

Ann Keen

We have no plans to address the effect on paediatric services for children and young people by the closure of these specialist units. Local health bodies have a duty to commission health and social care services to meet the needs of their local population, including those living with chronic fatigue syndrome/myalgic encephalomyelitis.

(c) 2008 Parliamentary copyright

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Source: UK House of Commons

Date: May 14, 2008

URL:

http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080514/text/80514w0011.htm

[Written Answers]

Social Security Benefits: Chronic Fatigue Syndrome

Janet Anderson

To ask the Secretary of State for Work and Pensions if he will review the procedures by which decisions are made on whether those suffering from myalgic encephalopathy/chronic fatigue syndrome should be allowed benefits with a view to reducing the number of such decisions which subsequently go to appeal. [203916]

Dr. Desmond Turner

To ask the Secretary of State for Work and Pensions if he will review the procedures by which judgement is made on whether those suffering from myalgic encephalomyelitis/chronic fatigue syndrome should be allowed benefits in order to reduce the number of appeals and successful appeals. [203973]

Mrs. McGuire

I refer my hon. Friends to the written answer I gave my hon. Friend the Member for Norwich, North (Dr. Gibson) on 1 May 2008, Official Report, column 588W.

(c) 2008 Parliamentary copyright

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Source: UK House of Commons

Date: May 14, 2008

URL:

http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080514/text/80514w0011.htm

[Written Answers]

Social Security Benefits: Chronic Fatigue Syndrome

Janet Anderson

To ask the Secretary of State for Work and Pensions how (a) the provisions of the Welfare Reform Act  2007 and (b) the guidance on disability living allowance published in July 2007 will improve access to benefits for people with myalgic encephalopathy/chronic fatigue syndrome. [203917]

Dr. Desmond Turner

To ask the Secretary of State for Work and Pensions how (a) the provisions of the Welfare Reform Act  2007 and (b) the guidance on disability living allowance published in July 2007 will improve access to benefits for people with myalgic encephalomyelitis/chronic fatigue syndrome who go to appeal to get benefits. [203972]

Mrs. McGuire

The Welfare Reform Act 2007 provides for the new employment and support allowance, which will be supported by the new work capability assessment.

The new work capability assessment will be a fair, robust and accurate assessment of a person’s capability for work, reflecting the activities needed in today’s workplace and concentrating on what people can do rather than what they cannot do. The current personal capability assessment needed a thorough review to ensure that the new assessment is up-to-date and accurate, and that it will identify those people who should be entitled to employment and support allowance, including those with long term-and fluctuating conditions such as myalgic encephalopathy.

The work capability assessment is not a snapshot of a person’s condition on the day of the assessment. In assessing whether a person can carry out any given activity, healthcare professionals must take into account the person’s condition over a reasonable period of time. If there is a change in a person’s disabling condition, there will be a provision to refer the person to an approved healthcare professional so that we can determine afresh whether or not the person has limited capability for work, or limited capability for work-related activity.

The disability living allowance guidance on myalgic encephalopathy and chronic fatigue syndrome was developed in conjunction with a group of experts in this area of medicine. It gives benefit decision-makers a greater understanding of this illness and the consequent care needs and mobility difficulties, and will enable them to make better-informed decisions on a person’s entitlement to disability living allowance.

(c) 2008 Parliamentary copyright

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Source: UK House of Commons

Date: May 14, 2008

URL:

http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080514/text/80514w0011.htm

[Written Answers]

Social Security Benefits: Chronic Fatigue Syndrome

Janet Anderson

To ask the Secretary of State for Work and Pensions what steps his Department is taking to ensure that assessments for the new employment and support allowance take account of the fluctuating state of health which is characteristic of people who have myalgic encephalopathy/chronic fatigue syndrome. [203918]

Dr. Desmond Turner

To ask the Secretary of State for Work and Pensions what steps his Department is taking to ensure that assessments for the new employment and support allowance take account of the fluctuating health cycle characteristic of people who have myalgic encephalomyelitis/chronic fatigue syndrome. [203975]

Mr. Timms

I refer my hon. Friends to the written answer I gave my hon. Friend the Member for Norwich, North (Dr. Gibson) on 28 April 2008, Official Report, column 44W.

(c) 2008 Parliamentary copyright

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Source: UK House of Commons

Date: May 19, 2008

URL:

http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080519/debtext/80519-0016.htm

[Debates]

Human Fertilisation and Embryology Bill

—————————————

Dr. Evan Harris: Is the hon. Gentleman convinced that substituting the words ‘severely impairs their quality of life’ would tighten the provision that currently refers only to ‘seriously’ In other circumstances – I am not suggesting that this would apply in circumstances such as these – we know of conditions that seriously impair the quality of life. Myalgic encephalopathy is an example. However, other serious conditions that perhaps carry a risk of sudden death are otherwise asymptomatic and do not impair the quality of life.

Is the hon. Gentleman really tightening up the provision, or simply creating more flexibility?

(c) 2008 Parliamentary copyright

Petition: Limit promotion and delivery of CBT within the NHS

Edit: Please see notice A brief note for brief therapists at:

http://meagenda.wordpress.com/2008/11/07/a-brief-note-for-brief-therapists/

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

http://petitions.pm.gov.uk/NHSCBT

We the undersigned petition the Prime Minister to limit the promotion & delivery of Cognitive Behavioural Therapy [CBT] within the NHS according to available evidence.

Submitted by S. Forrest of NHS – Deadline to sign up by: 11 April 2009

“Following economist Lord Layard’s promotion of CBT on economic grounds, the NHS has seen a boom in the funding made available for the exclusive employment and training of CBT therapists in the NHS. However, equal funding has NOT been made available for a diverse range of psychotherapies. CBT continues to be aggressively promoted on the grounds of ‘evidence’ of its alleged effectiveness in treating some forms of mental distress, thereby severely and unfairly biasing public perception of CBT as a cure-all when this is patently untrue. Published evidence exists that shows CBT to have no long-term benefit in treating common difficulties such as anxiety or psychosis. Further evidence also shows CBT to worsen symptoms in people who suffer from, for example, Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS). As CBT is promoted on the grounds of ‘evidence’ of its effectiveness with some patients, this petition calls for the cessation of the use and promotion of CBT in the NHS where there is either no ‘evidence’ of its effectiveness or where ‘evidence’ exists to show that CBT is ineffective or deleterious to a patient’s wellbeing or symptoms.

[237 signatures at 18 May 2008]

Response to standard response issued by Ian Balmer, CE, RSM

Response to standard letter issued by Ian Balmer, CE of the Royal Society of Medicine

15 May 2008

To: Mr Ian Balmer, CE Royal Society of Medicine
CC: Dr John Scadding, Dean Royal Society of Medicine

Re: Standard letter issued by RSM on 12 May 2008 re CFS Conference held on 28 April 2008

Dear Mr Balmer,

Yesterday I received from you what appears to be a standard letter which is being issued to those who had written in to the RSM in connection with the CFS Conference, held on 28 April. [Dated 12 May]

I have a query about a comment you have made, in your letter, in relation to the taking of stands at the conference. You have said:

“Although this was principally a conference for health professionals, the RSM did offer free stands to two patient interest groups. Indeed these offers were taken up and representatives of three groups were present and distributed a wide range of leaflets and documents.”

It is my understanding that the ME Association took a stand at the conference which was manned by the MEA’s Tony Britton.

You have stated that “representatives of three groups were present and distributed a wide range of leaflets and documents.”

I should be pleased if you could clarify which two other patient interest groups, in addition to the ME Association, had representatives distributing leaflets and documents within the RSM’s building, itself, and by arrangement with the conference organisers?

In your letter, you say that two major areas of criticism were identified that were common to most of the letters the RSM had received.

The first that “the conference was predominantly discussing this issue with reference to guidelines produced by NICE”; the second major criticism being that “the conference itself excluded patients”.

However, the RSM will also have received a large number of complaints about the fact that the Planning Committee for the CFS Conference comprised no less than four psychiatrists and that a significant number of those selected to give presentations were also from predominately psychiatric/psychological backgrounds.

But this concern remains unaddressed in the letter you have issued on behalf of the RSM. I would appreciate a response from the RSM to this specific concern, especially since it was the primary concern I had raised, myself, in my own communication.

In the meantime, since there is some confusion amongst members of the ME patient community about which patient interest groups were distributing literature within the RSM building, itself, I should be pleased if this issue could be addressed first.

Sincerely,

Suzy Chapman

Stand back a minute! by Greg Crowhurst

Reference:
Letter FROM the Royal Society of Medicine Help ME Circle, 13 May 2008 – See Co-Cure:
 ~jvr

or here: http://meagenda.wordpress.com/2008/05/14/letter-from-ian-balmer-ce-rsm/

 

From: Greg Crowhurst

Stand back a minute !

A Cartesian reflection on the RSM letter to Jan van Roijen

Greg Crowhurst,
14th May 2008

On April 28 2008 there was a one-sided, closed, psychiatrically biased conference, in London, on
 CFS. The RSM believes, in a letter to Jan van Roijen, that all the content was evidence-based and of high scientific quality; an extraordinary claim to make given that the conference was claiming that ME no longer exists.

Peter White is reported to have referred in his opening speech, to the philosopher Descartes; It is a  particularly alarming statement, because it could be inferred to mean that the split between psychiatry and the biomedical reality of ME cannot be safely used to protect people with ME anymore from the  involvement of psychiatry in the treatment of their illness:

‘The ME-CFS debate may be remembered in future more as one of the tipping points for the rejection  of Cartesian dualism than for diseases that lie within’.

Actually Descartes, if he had been present at the Conference, might well have responded to this  statement by exclaiming – wow, hold on, stand back a minute !

Dr J Greensmith’s response to This is Bristol article

Dr John Greensmith has submitted the following response to Bristol Evening Post Letters

The online version of the article can be read on the “This is Bristol” site and can also be read here:

http://meagenda.wordpress.com/2008/05/16/dr-esther-crawley-condemns-afme-survey-as-unreliable/

In response to:

TREATMENT IS MAKING TEENAGER’S ME WORSE

BY ALEISHA SCOTT

Veteran M.E. (*Myalgic Encephalomyelitis*) sufferers, including this Research Psychologist, diagnosed 20 years ago, have been warning for years that well-intentioned advice to exercise has left them feeling worse, some irrecoverably so, in a wheelchair or bed bound, from which they never regain their previous levels. Recent research, some since the NICE (National Institute for Health and Clinical Excellence) guidelines of August 2007, which recommend Graded Exercise Treatment (GET), have confirmed it.

The principal finding of a survey, by Action for ME (AfME) and The Association of Young People with M.E. (AYME), published this M.E. Awareness Week, is that 34% felt worse after Graded Exercise Treatment, just as teenage sufferer Helen Wood has experienced (Treatment is making teenager’s ME worse, Bristol Evening Post, 16 May 2008). It may turn out that this percentage is quite an underestimate but even one-third is a cause for concern about its future.

Astonishingly, Action for ME’s response is to call for greater investment in it and even more therapists.

Every other national M.E. charity has issued a statement, voicing some degree of opposition to GET.

ME Free For All. org is appealing for the treatments, recommended by the NICE guidelines, to be suspended, pending biomedical research into the physical cause of M.E. which should, in turn, suggest appropriate safe treatment towards cure, since no treatment is better than one (Cognitive Behaviour Therapy) which has no lasting benefit, without relapse, or one (Graded Exercise Treatment) that makes people with M.E. worse. How much more evidence – and human suffering – is needed?

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org

Dr Esther Crawley condemns AfME Survey as “unreliable”

Ed: Note Dr Esther Crawley is a medical adviser to AYME (Association of Young People with ME) whose members also took part in this AfME Survey.

“However Dr Esther Crawley, an ME specialist based at the Royal National Hospital for Rheumatic Diseases in Bath and who helped to draw up the Nice guidelines, dismissed the findings, saying the survey was unreliable.”

“This survey is based on a biased sample of people who have had an issue with treatment and we cannot deduce who had graded exercise therapy delivered by a specialist, as Nice recommends”

This is Bristol

TREATMENT IS MAKING TEENAGER’S ME WORSE

BY ALEISHA SCOTT EPNEWS

07:00 – 16 May 2008

A young ME sufferer says a treatment recommended by the Government makes her feel worse, not better.

Helen Wood, 18, from Thornbury, is not alone. A survey by Action for ME revealed a third of people with the condition who had a treatment called graded exercise therapy, also reported it made them worse.

ME, also known as chronic fatigue syndrome, causes a range of symptoms including muscle pain, tiredness, headaches, sleep disturbances and difficulties with concentration.

The charity, which released the figures as part of ME Awareness Week, also said GPs were still largely unsupportive towards patients who had ME.

Helen was diagnosed with ME in 2005 but is thought to have had it for at least 10 years.

The condition makes her immune system weak and vulnerable to infection and she said she was constantly exhausted and suffered from aches and pains.

She has not been to school since April 2004 and despite having home education, has not been able to finish her GCSEs because of the illness.

She sees a psychologist at Bristol’s Frenchay Hospital and also a dietician, but is rationed to just one appointment a month with her GP.

Her graded exercise therapy involves her walking up and down the stairs or getting in and out of the bath – easy enough for most people but not for Helen.

“I have been told to walk up and down the stairs a few times a day to get my muscles working but sometimes it makes me feel bad and sometimes I feel worse afterwards,” she said.

“I’m not able to do much at all and I feel really achy all the time and tired, I would really like to go out more but I just can’t manage it.”

She added: “Talking helps the most because I can get things off my chest.

“But I would like people to understand ME better, I don’t think that doctors do at all because they think it is all in the mind but it’s not, it’s a physical thing.”

The National Institute of Clinical Excellence (Nice) guidelines tell doctors to develop a personal plan for each of their patients, recommending cognitive behavioural therapy and graded exercise therapy as treatments.

Graded exercise therapy encourages patients to gradually increase physical exercise or daily tasks irrespective of how they feel.

But while Action for ME accepted the treatment could help some, it said that 34 per cent of ME patients in its survey said graded exercise therapy had made their ME worse.

However Dr Esther Crawley, an ME specialist based at the Royal National Hospital for Rheumatic Diseases in Bath and who helped to draw up the Nice guidelines, dismissed the findings, saying the survey was unreliable.

“This survey is based on a biased sample of people who have had an issue with treatment and we cannot deduce who had graded exercise therapy delivered by a specialist, as Nice recommends,” she said.

“Delivered by a specialist, it actually reduces activity to a stable level and then to a small amount each day. We have had above 85 per cent of people who said they have been happy with their treatment.

“We do not say to people they have to have the therapy, we give them a range of options and they choose.”

ME in Parliament: May 2008

Thanks to Dr. Marc-Alexander Fluks for compilation

Source: UK House of Commons
Date: May 6, 2008
URL: http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080506/text/80506w0018.htm

[Written Answers]

Incapacity Benefits: Chronic Fatigue Syndrome

Dr. Gibson

To ask the Secretary of State for Work and Pensions what assessment he has made of the impact of (a) the Welfare Reform Act 2007 and (b) new guidance on the disability living allowance on the granting of benefits to people with myalgic encephalopathy. [201838]

Mr. Timms

The Welfare Reform Act 2007 contains provision for the creation of the new employment and support allowance. This will be supported by the new work capability assessment.

The work capability assessment will be a fair, robust and accurate assessment of limited capability for work which takes account of all conditions, including those that are long term and that fluctuate such as myalgic encephalopathy.

Employment and support allowance will replace incapacity benefits for new claimants from October 2008. No assessment of its impact can be made yet.

Updated medical guidance on myalgic encephalopathy for disability living allowance decision makers was published in July 2007. No assessment has been made of the impact of the guidance on entitlement to disability living allowance for people with myalgic encephalopathy.

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Source: UK House of Commons
Date: May 7, 2008
URL: http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080507/text/80507w0028.htm   

[Written Answers]

Chronic Fatigue Syndrome

Dr. Gibson

To ask the Secretary of State for Health what assessment he has made of the effects on services for children and young people with myalgic encephalopathy of the closure of specialist units in (a) Leeds, (b) the Lister hospital, Stevenage and (c) St. Thomas’s hospital, London; and if he will make a statement. [201831]

Ann Keen

We have made no assessment of the impact on services for children and young people by the closure of these specialist units. Local health bodies have a duty to commission health and social care services to meet the needs of their local population, including those living with chronic fatigue syndrome/myalgic encephalomyelitis.
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Ed: In November 2006, the GSRME issued a press release to launch the Report of the GSRME (“The Gibson Report”):

Extract from GRSME Media Release, embargoed until 10pm Sunday 26th November 2006

“NICE has just finished consulting on their draft guidelines for treating CFS/ME. These guidelines have been widely criticised by patient groups and by the APPG on ME. Chair Des Turner described them in a meeting last week as ‘not fit for man nor beast’ Dr Ian Gibson MP of the Inquiry described them as ‘useless’.

On 7 May 2008, Dr. Gibson tabled a written question:

“To ask the Secretary of State for Health what steps he is taking to (a) ensure implementation of the National Institute for Health and Clinical Excellence’s guidelines on the treatment of myalgic encephalopathy (ME) published in August 2007.”

On whose behalf has Dr Gibson raised this question?

Has Dr Gibson done a volte face and does he now consider the NICE CFS/ME Guidelines to be fit for purpose and suitable for implementation?  Is Dr Gibson now endorsing the NICE CFS/ME Guidelines?

Source: UK House of Commons
Date: May 7, 2008
URL: http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080507/text/80507w0028.htm 

[Written Answers]

Chronic Fatigue Syndrome

Dr. Gibson

To ask the Secretary of State for Health what steps he is taking to (a) ensure implementation of the National Institute for Health and Clinical Excellence’s guidelines on the treatment of myalgic encephalopathy (ME) published in August 2007, (b) reduce the time taken to diagnose ME, (c) increase the allocation of funds for research into ME and the delivery of effective care and treatment, (d) reduce inconsistencies in levels of ME care across primary care trusts and (e) assess the availability of services to (i) children and (ii) adults with ME. [201832]

Ann Keen

Health professionals are expected to use their clinical judgement taking into account best practice and existing clinical guidelines, including those produced by the National Institute for Health and Clinical Excellence (NICE), to provide the most appropriate treatment for the individual living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

Diagnosis for CFS/ME can be prolonged as there is no specific test for this condition and other diseases with similar symptoms must be ruled out before a diagnosis can be made. The NICE guidance provides a list of medical tests that should be used to rule out other conditions.

The Medical Research Council is responsible for allocating funding for medical research, and does not ring-fence funding for specific conditions. Funding for individual research proposals is based on an assessment of the quality of each proposal by an independent panel. Local health bodies are responsible for commissioning health and social care services to meet the needs of their local population living with CFS/ME.

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Source: UK House of Commons
Date: May 7, 2008

URL: http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080507/text/80507w0028.htm 

[Written Answers]

Chronic Fatigue Syndrome

Mike Penning

To ask the Secretary of State for Health (1) what steps his Department is taking to ensure primary care trusts meet the recommendations of the new guidelines on myalgic encephalomyelitis/chronic fatigue syndrome produced in August 2007 by the National Institute for Health and Clinical Excellence; [202244] (2) what steps his Department is taking to reduce the time taken to diagnose myalgic encephalomyelitis/chronic fatigue syndrome. [202245]

Ann Keen

Health professionals are expected to use their clinical judgment taking into account best practice and existing clinical guidelines, including those produced by the National Institute for Health and Clinical Excellence (NICE), to provide the most appropriate treatment for the individual living with chronic  fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

Diagnosis for CFS/ME can be prolonged as there is no specific test for this condition and other diseases with similar symptoms must be ruled out before a diagnosis can be made. The NICE guidance provides a list of medical tests that should be used to rule out other conditions.

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Source: UK House of Commons
Date: May 8, 2008
URL:
http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080508/text/80508w0028.htm

[Written Answers]

Chronic Fatigue Syndrome: Health Services

Dr. Desmond Turner

To ask the Secretary of State for Health what steps his Department plans to take to ensure that the recommendations for research into myalgic encephalomyelitis/ chronic fatigue syndrome in the new National Institute for Health and Clinical Excellence guidelines are met, with particular reference to the (a) causes of the illness, (b) effectiveness of intervention strategies and (c) efficient ways to deliver domiciliary care for people who are severely affected. [203962]

Dawn Primarolo

Research recommendations made in National Institute for Health and Clinical Excellence (NICE) guidelines are considered on behalf of the Department by the National Institute for Health Research Health Technology Assessment programme (HTA). The director of the HTA programme meets annually with NICE for this purpose. The next of these joint meetings will be held in September.

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Source: UK House of Commons
Date: May 9, 2008
URL:
http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080509/text/80509w0015.htm

[Written Answers]

Chronic Fatigue Syndrome

Mr. Llwyd

To ask the Secretary of State for Health what steps his Department plans to take to ensure that recommendations on research into myalgic encephalomyelitis and chronic fatigue syndrome, such as those outlined in the guidelines recently issued by the National Institute for Health and Clinical Excellence, are met, with particular regard to (a) the cause of the illness, (b) the effectiveness of current intervention strategies and (c) identification of efficient ways to deliver domiciliary care for those who are severely affected. [203520]

Dawn Primarolo

I refer the hon. Member to the reply I gave the hon. Member for Sutton and Cheam (Mr. Burstow) on 29 April 2008, Official Report, column 252W.

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Monday 2 June 2008 at 2.30pm: Oral Question in the House of Lords

Countess of Mar to ask Her Majesty’s Government whether the current NHS Review will include consideration of chronic fatigue syndrome/myalgic  encephalomyelitis (CFS/ME) as a long-term neurological condition.

 

Joint statement: MEA and The Young ME Sufferers Trust

Ed: Note that the MEA does not actually identify the source of the call for an increase in the number of GET therapists that they are referring to.

It is Action for ME (AfME).

Read AfME’s media release of 12 May, here:
http://meagenda.wordpress.com/2008/05/12/afme-survey-results-12-may-2008/

In this release, AfME states:

“Action for M.E. is calling for additional funding for the provision of more M.E. specialists and for more suitably trained GET therapists.”

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Joint Statement by The ME Association and The Young ME Sufferers Trust
Thursday 15 May 2008

The ME Association and The Young ME Sufferers Trust today jointly reject this week’s call for the number of graded exercise therapists to be increased*. This is because of our serious concern for the safety of patients given this controversial approach to management.

When patients are made worse by GET (which is based on the flawed concept of deconditioning) this is not merely due to a problem with the way in which the therapy is delivered. Post-exertional malaise is a key diagnostic criterion for ME/CFS. Put simply, the illness worsens as a result of physical and mental effort. Advocating progressive exertion is to show a worrying lack of knowledge about the nature of the illness itself.

Whilst it has been noted that children may be cajoled and persuaded to over-exert themselves, inappropriate levels of activity can only be sustained for a limited period. Do too much and they may suffer severe exacerbation of their condition. We do not consider it responsible for ME charities to promote such treatment for children or adults with ME/CFS.

Furthermore, any treatment that causes an adverse reaction in 33% – 50% of those using it cannot be recommended as a blanket form of treatment, as in the case of the guideline for treatment of ME/CFS produced by the National Institute for Health and Clinical Excellence (NICE). If a drug treatment were causing this level of adverse reactions, serious questions would be asked about its use.

The ME Association and the The Young ME Sufferers Trust are therefore jointly calling for an urgent review of the NICE recommendation that everyone with mild or moderate ME/CFS should be automatically offered a course of GET. We consider this is likely to result in iatrogenic damage to some patients. We have experience of cases that were mild or moderate which became severe with this form of treatment.

The only form of activity management that the ME Association and The Young ME Sufferers Trust can endorse or recommend is pacing a process whereby people modify their levels of exertion as appropriate with the severity and stage of their illness, so as to adapt to the characteristic fluctuations in their condition, maintain a sustainable level of activity, keep symptoms at bay and allow further recovery to take place.

Neil Riley
Chairman The ME Association
www.meassociation.org.uk

Jane Colby
Executive Director The Young ME Sufferers Trust
www.tymestrust.org

Ends

Read the ME Association’s previous position statement on GET here