ME/CFS: Terminology: Margaret Williams 27 April 2009

http://www.meactionuk.org.uk/ME_CFS_TERMINOLOGY.htm

ME/CFS: TERMINOLOGY

Margaret Williams  |   27 April 2009

Terminology is confusing. Although it may seem merely pedantic, inverting the initials “ME/CFS” and “CFS/ME” may have far-reaching implications for patients: “CFS/ME” (Chronic Fatigue Syndrome / Myalgic Encephalomyelitis) is not the same as “ME/CFS” because in “CFS/ME”, the “CFS” refers to (chronic) “fatigue syndrome”, not to the Chronic Fatigue Syndrome (which is an officially recognised synonym for myalgic encephalomyelitis, hence the use of the term “ME/CFS”).

The WHO International Classification of Diseases (ICD) consists of different volumes: Volume I is the Tabular List of diseases / disorders; Volume II is the Instruction Manual and Volume III is the Alphabetical Index (Codex) containing terms that the WHO considers synonymous with diseases / disorders listed in the Tabular List; there are many terms in the Alphabetical Index that are not included in – but are coded to – the Tabular List.

ME has been classified by the WHO in the ICD as a disease of the nervous system since 1969. In ICD-10 (the current Revision published in 1992 which has undergone numerous updates but is still the tenth Revision, hence it is referred to as “ICD-10”) ME is classified in Chapter VI (code G) under Diseases of the Nervous System at G93.3 (Other disorders of brain).

Since 1992, the term “Chronic Fatigue Syndrome” (CFS) has been included in the Alphabetical Index (Codex) — but not in the Tabular List — and indexed to G93.3 Post Viral Fatigue Syndrome (PVFS) / ME in the Tabular List as a recognised synonym, and the use of the term “ME/CFS” denotes the neurological disease G93.3.

Chronic Fatigue Syndrome appears in the Alphabetical Index (Codex) under:

Syndrome –

— fatigue F48.0

—- chronic G93.3

—- postviral G93.3.

This clearly indicates that Fatigue Syndrome is coded to F48.0 and that the Chronic Fatigue Syndrome (CFS) is not coded to F48.0 but to G93.3. Fatigue syndrome (sometimes referred to as “chronic fatigue”) is not the same as the Chronic Fatigue Syndrome (American Medical Association: CFIDS Chronicle: Summer 1990:144).

Chapter V (Code F) of ICD-10 covers Mental and Behavioural Disorders. F40-48 covers Neurotic, stress-related and somatoform disorders; F48.0 (Other neurotic disorders) includes Neurasthenia and Fatigue syndrome. This section (F48) specifically excludes the disease ME/PVFS/CFS that is coded to G93.3.

The term “CFS/ME” is an ambiguous term: it is not recognised by the World Health Organisation (WHO) which refers to its use as “unfortunate”. The WHO Medical Officer (ICD Classifications, Terminologies and Standards) has confirmed in writing that it may be a term that does not fit into the ICD scheme (as it can mean anything that anybody wants it to mean). The WHO confirmed (verbatim quote): “It is unfortunate that NICE uses a terminology that is not specific. ‘CFS/ME’ is a broad umbrella. This needs to be clarified. It is not possible to make a deduction from ‘CFS/ME’ ”.

Confusion has arisen because certain UK psychiatrists known as the Wessely School (Hansard, Lords: 19th December 1998:1013), many of whom work for the medical and permanent health insurance industry and who are influential at the Medical Research Council (MRC), have concocted the term “CFS/ME” to denote all states of what they believe to be “medically unexplained” chronic “fatigue” as a behavioural (somatoform) disorder. For decades, they have assiduously but wrongly attempted to subsume the quite separate neurological disease ME/CFS (G93.3) into F48.0 as a behavioural disorder.

The insurance industry for which Wessely School psychiatrists and their supporters work excludes mental disorders from cover (both medical expenses policies and permanent health insurance policies exclude psychiatric disorders from cover). Furthermore, people with mental disorders are excluded from higher rates of some State benefits.

The stated intention of the Wessely School psychiatrists who use the term “CFS/ME” is to eradicate ME entirely – they intend to drop the “ME” component from “CFS/ME” as soon as they deem it to be expedient (“Eradicating myalgic encephalomyelitis (ME)”. Simon Wessely. Pfizer Invicta Pharmaceuticals 1992; “Managing patients with inexplicable health problems”. B Fischoff, Simon Wessely. BMJ 2003:326:595-597). “CFS/ME” would then become just Chronic Fatigue Syndrome or CFS, which can (and inevitably will) be written as “chronic fatigue syndrome” or chronic “fatigue syndrome” (ie. a syndrome of chronic fatigue), which is classified as a somatisation disorder. Chronic fatigue is not the same as the Chronic Fatigue Syndrome but by such means, the Wessely School psychiatrists would achieve their long-held goal of eradicating the serious neuroimmune disease ME from the medical lexicon.

The first stage of the eradication of ME has already happened: the meaningless term “CFS/ME” was used in the UK Chief Medical Officer’s Working Group Report of 2002; in the MRC’s CFS/ME Research Strategy Report of 2003, and most recently in the NICE Clinical Guideline 53 of 22nd August 2007.

Largely controlled by – and certainly influenced by – Wessely School psychiatrists, the MRC Neurosciences and Mental Health Board is on record as stating that the PACE trial on “CFS” —which uses the 1991 Oxford / Wessely School criteria that expressly exclude neurological disorders but expressly include states of psychiatric fatigue– does include people with ME (because according to the Wessely School psychiatrists who are leading the MRC trial, ME is not a recognised neurological disorder).

By letter dated 16th June 2005, Dr Sarah Perkins, Programme Manager of the MRC Neurosciences and Mental Health Board, asserted: “The main entry for the PACE trial are the Oxford Criteria. Used successfully in both research and clinical practice for many years, they have been the entry criteria for almost all the leading UK CFS/ME published trials of treatment to be compared in the PACE trial. Their use will ensure that the results of the trials will be applicable to the widest range of people who receive a diagnosis of CFS/ME (this accords with the Trial Identifier, where Professor Peter White states at section 3.6: “We chose those broad criteria in order to enhance generalisability and recruitment”). The exclusion criteria criterion of ‘proven organic brain disease’ will be used to exclude neurological conditions. It will not be used to exclude patients with a diagnosis of ME”. This is in defiance of the fact that the WHO classifies ME as a neurological disorder.

In January 2005 the MRC Portfolio in Mental Health Research was unequivocal: section 6.2 stated: “Mental health research in this instance covers….CFS/ME”. This is contained in the MRC’s Neurosciences and Mental Health Board Scoping Study, which also states: “Mental health represents a vast potential market for pharmaceutical companies” and that mental health research funding links with industry “are weak in the UK in relation to those in the USA”.

Influenced by Wessely School psychiatrists (who have boasted about their influence on the NICE Guideline) and those who support them, NICE wrongly uses the meaningless term “CFS/ME”.

A single NICE Guideline (CG53) cannot cover two discrete entities with mutually exclusive WHO classifications (the neurological disease ME/CFS and Neurasthenia / Fatigue syndrome, a classified behavioural disorder) on the incorrect assumption that they are one syndrome of medically unexplained chronic fatigue which is deemed to be a somatisation (mental) disorder.

Moreover, it is mandatory for NICE to use the WHO International Classification of Diseases (ICD) codes. NICE’s own Communications Progress Report 8 of 18th September 2002 from Anne Toni Rodgers is clear: “The ICD-10 classification has been used as a basis for the new Institute classification directed at the informed reader. ICD-10 is used within the acute sector of the NHS and classification codes are mandatory for use across England”. The Progress Report also states: “The Board is asked to note the Progress Report”.

Furthermore, NICE’s Taxonomy of May 2007 (three months before CG53 was published) is also clear: (ME)CFS is listed as a disease of the Central Nervous System, not as a behavioural disorder.

By letter dated 16th October 2001, Dr B Saraceno from the WHO Headquarters in Geneva provided clarification: “I wish to clarify the situation regarding the classification of neurasthenia, fatigue syndrome, post viral fatigue syndrome and benign myalgic encephalomyelitis. Let me state clearly that the World Health Organisation (WHO) has not changed its position on these disorders since the publication of the International Classification of Diseases, 10th Edition in 1992 and versions of it during later years. Post viral fatigue syndrome remains under the diseases of the nervous system as G93.3. Benign myalgic encephalomyelitis is included within this category. Neurasthenia remains under mental and behavioural disorders as F48.0 and fatigue syndrome is included within this category. However, post viral fatigue syndrome is explicitly excluded from F48.0”.

On 6th February 2009, Dr Robert Jakob from the WHO in Geneva re-confirmed the WHO’s classification as specified by Dr Saraceno, adding: “Again, there is no evidence for any change of the above to be made for ICD-11”.

Wessely School psychiatrists have a long track record of attempting to re-classify ME/CFS as a mental disorder, for example, the UK WHO Collaborating Centre for Mental Health at the Institute of Psychiatry, London, misclassified the disorder as a mental (behavioural) disorder in the first edition of its “Guide to Mental Health in Primary Care”, using Wessely’s own material on “CFS/ME” (30,000 copies of which were sold in the UK).

The letter dated 16th October 2001 from the WHO (referred to above) addressed the psychiatrists’ confusion: “It is possible that one of the several WHO Collaborating Centres in the United Kingdom presented a view that is at variance with the WHO’s position”.

An erratum was eventually issued over the Guide to Mental Health in Primary Care, whereupon the Wessely School psychiatrists then asserted that the WHO itself had classified the same disorder in two places, once in the Neurological section and also in the Mental (behavioural) section of the ICD. This misinformation was fed to Government Ministers, who in turn fed it to Members of Parliament, who then provided it as “evidence-based” fact to their constituents and others.

Yet again, the Wessely School’s claims were repudiated by the WHO: on 23rd January 2004 Andre l’Hours from the WHO in Geneva provided further written clarification: “This is to confirm that according to the taxonomic principles governing the Tenth Revision of the World Health Organisation’s International Statistical Classification of Diseases and Related Health Problems (ICD-10) it is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories were no longer mutually exclusive”.

Notwithstanding, the NICE Guideline Development Group (GDG) refused to accept the ICD classification of ME/CFS as a neurological disease (thus placing itself as a higher authority than the WHO) and it is the Wessely School’s beliefs about the nature of “CFS/ME” that underpin the NICE Guideline’s recommendations of behavioural management (cognitive behavioural therapy or CBT and graded exercise therapy or GET) for “CFS/ME”.

CBT is described in the Chief Medical Officer’s Working Group Report of 2002 as “a tool for constructively modifying attitude and behaviour” (Annex 6, page 8); in the Medical Research Council’s PACE trial on CFS/ME, CBT “will be based on the illness model of fear avoidance”; in the Guide to Mental Health in Primary Care it is described in the following terms: “This is used to change a patient’s thought processes and behaviour”, while the NICE Guideline itself describes CBT as “a psychological therapy”. Why would a psychological therapy be the primary (indeed the only) recommended management intervention for a classified neurological disease? Is multiple sclerosis henceforth also to be managed only by behavioural modification?

GET is described in MRC PACE trial on CFS as being “based on the illness model of both deconditioning and exercise avoidance”, whilst the CG53 graded exercise plan specifies that the intensity of GET should be incrementally increased (with the patient’s agreement), leading to aerobic exercise, which is in direct contradiction to the advice given in 1999 by international ME/CFS expert Professor Paul Cheney: “The most important thing about exercise is not to have them do aerobic exercise. If you have a defect in the mitochondrial function and you push the mitochondria by exercise, you kill the DNA” (International Congress of Bioenergetic Medicine, Orlando, Florida, February 1999).

Over 5,000 papers in the international medical literature confirm the organic nature of ICD-10 G93.3 ME/CFS. It is important to be aware that many international research papers refer not to “ME” or to “ME/CFS” but to “CFS”, a term that was invented in 1988 in the United States when ME was erroneously renamed CFS (Osler’s Web. Hillary Johnson. Crown Publishers Inc., New York, 1996).

This means that the ambiguous and heterogeneous label “CFS” may be referring to ME (ICD-10 G93.3) or to chronic fatigue syndrome (ICD-10 F48.0), an impossibly confusing situation for both patients and practitioners that the Wessely School seems to have exploited to its own and its insurance industry paymasters’ advantage.

ME/CFS has been included in the UK National Service Framework (NSF) as a chronic neurological condition since the NSF was launched on 10th March 2005.

ME/CFS is classified in the UK Read Codes as a neurological disorder at F286. (The Read Codes, used by UK GPs, use the prefix “F” to denote diseases of the nervous system, which to the uninformed may be confusing in that WHO ICD “F” codes relate to mental disorders).

The evidence that the NICE Clinical Guideline 53 on “CFS/ME” cannot apply to both the neurological disease ME/CFS (G93.3) and to mental and behavioural fatigue states of neurasthenia / fatigue syndrome (F48.0) was provided to the Claimants’ lawyers for the Judicial Review of the NICE Guideline CG53 heard in February 2009 in the High Court in London but was not used. The challenge failed.

Margaret Williams, 27 April 2009

———————-

Additional references:

WHO International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD-10) Version for 2007:
http://www.who.int/classifications/icd/en/

Tabular List of inclusions and four-character subcategories:
http://www.who.int/classifications/apps/icd/icd10online/

ICD-10 Chapter V
http://www.who.int/classifications/apps/icd/icd10online/index.htm?gF40.htm+F454
Mental and behavioural disorders (F00-F99)
Neurotic, stress-related and somatoform disorders (F40-F48)

ICD-10 Chapter VI
http://www.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933
Diseases of the nervous system (G00-G99)
Other disorders of the nervous system (G90-99)

Extract, transcript of presentation: What is Chronic fatigue syndrome and what is ME? by Prof Peter D White, Royal Society of Medicine Conference on CFS, 28 April 2008. Prof White sets out existing ICD-10 classifications and discourages Conference from using ICD
RSM Transcript Prof Peter White

DSM-IV and ICD-10 classifications around Somatoform Disorders; Neurasthenia; ME, PVFS
DSM-IV ICD-10 Classifications

Independent: What’s wrong with you? It depends where you live (Wessely)

Update: Letter below was published in the print edition on 30 April.

The ME Association has made the following response which includes this description of “Pacing” – a description which sounds more like GET (Graded Exercise Therapy) or APT (Adaptive Pacing Therapy) to me:

“The key to recovery in ME/CFS is careful pacing of activities – a process involving small but flexible increases in activity that take account of the person’s limitations.”
 

http://www.meassociation.org.uk/content/view/852/161/

ME Association responds to The Independent

The ME Association has responded to an article by Jeremy Laurence in which he interviewed Professor Simon Wessely, which appeared yesterday (Monday, April 27) on the health pages of The Independent newspaper.

INTENDED FOR PUBLICATION

RE: WHAT’S WRONG WITH YOU? IT DEPENDS ON WHERE YOU LIVE

Sir

Whilst agreeing that many French doctors still refuse to accept that ME/CFS exists as a distinct clinical entity, this situation cannot be used to conclude that the illness is not present in France.

A proper epidemiological study (1), which investigated the prevalence of persistent fatigue in France, found that this is a significant and common presenting complaint in primary care. Here at The ME Association we are regularly contacted by people in France who are desperately seeking help with regard to both diagnosis and management – some of whom appear to be receiving inaccurate explanations for their persisting ill health.

The simple fact is that if people with ME/CFS do too much and exceed their limitations – as may be advised by doctors who believe the problem lies in abnormal illness beliefs and behaviour. – they invariably feel worse as a result. The key to recovery in ME/CFS is careful pacing of activities – a process involving small but flexible increases in activity that take account of the person’s limitations. All of which is consistent with the neurological abnormalities that has led the World Health Organisation to officially classify ME as a neurological disorder (in section G93.3 in ICD10)..

Dr Charles Shepherd
Hon Medical Adviser, ME Association

7 Apollo Office Court
Radclive Road
Gawcott
Buckinghamshire MK18 4DF

Web: www.meassociation.org.uk

Reference

The epidemiology of fatigue and depression: A French primary care study. Psychological Medicine. 25 (5) 895 – 906, September 1995.

———————————-

Most likely written up from the same press handout as the Wessely “interview”, New Scientist, 13 March issue. 

From this morning’s Independent:

http://tinyurl.com/independentwessely

Tuesday 27 April 2009

What’s wrong with you? It depends where you live

Jeremy Laurance looks at how different countries treat the same symptoms

‘Simon Wessely, professor of psychiatry at Kings College, London, who has studied cultural trends in illness, says: “People will always seek explanations when they feel under the weather or not quite right. Much of it depends on what is currently hot in medicine. Each age and each culture has its own answers. Doctors use many different labels to describe patients with unexplained symptoms – somatisation, burn-out, chronic fatigue syndrome, multiple chemical sensitivity, subclinical depression, post traumatic stress disorder, low blood pressure, spasmophilia – despite no evidence that any of these are distinct or separate entities. Our belief is that most of these labels refer to similar clinical problems.”‘

Read full article in the Independent here

———————-

You can send letters to the Editor for the print edition via email (full contact details will be required) to: letters@independent.co.uk  or leave a comment on the article. I’ve left the following comments, today:

Interests
Tuesday, 28 April 2009 at 07:26 am (UTC)

Does Professor Simon Wessely function as an external advisor to the American Psychiatric Association (APA) DSM Revision Process, other than his participation in the APA/NHI/WHO funded DSM-V Beijing 2006 diagnosis-related research planning symposium on “Somatic Presentations of Mental Disorders”?

and

Re: Mistreated by PSCYHOLOGY [sic]
Tuesday, 28 April 2009 at 01:52 pm (UTC)

This article bears such striking similarities to the “interview” published in New Scientist (Mind over Body? 13 March) that one suspects it has been written up from the same press handout.

And yes, once again, Professor Wessely disregards WHO ICD-10 taxonomy, using the terms “chronic fatigue”, “ME” and “Chronic Fatigue Syndrome (CFS)”, interchangeably, as though all three were indexed in the same Chapter of ICD-10, which they are not.

Only recently, the WHO Collaborating Centre, Institute of Psychiatry, was obliged to correct the website for the WHO Guide to Mental and Neurological Health in Primary Care where they had incorrectly placed “chronic fatigue” at G93.3. This website has now been amended to read “chronic fatigue G48.0” – which is still incorrect; it should read F48.0 (Chapter V).

It has sat like this for weeks. Would someone from the WHO Collaborating Centre or the Institute of Psychiatry or perhaps, Professor Wessely, himself, if he is reading these comments, please attend to this error?

Have a look at it here:

http://www.mentalneurologicalprimarycare.org/content_show.asp?c=16&fid=1252&fc=011065

———————————-

For the New Scientist “interview” with Professor Simon Wessely go to:

http://www.newscientist.com/article/mg20126997.000-mind-over-body.html

There have now been 564 responses in the Comments to this Wessely “interview”.  Two letters were printed in the magazine a couple of weeks after the article appeared – one by Dr Charles Shepherd, the other by Tom Kindlon; a further two letters have appeared in the print edition.  Prof Wessely has responded once, via the Comment facility, but author of the article, journalist Claire Wilson, has made no response.

Following the publication of today’s article in the Independent, I have added the following comments to the New Scientist:

Wessely In The Independent
Tue Apr 28 08:10:00 BST 2009 by Suzy Chapman

Very similar article in the Independent, today, and likely written up from the same press handout as this New Scientist “interview” with Prof Wessely.

http://tinyurl.com/independentwessely

Can anyone confirm whether Prof Simon Wessely functions as an external advisor to the American Psychiatric Association (APA) DSM Revision Process, other than his participation in the APA/NHI/WHO funded DSM-V Beijing 2006 diagnosis-related research planning symposium on “Somatic Presentations of Mental Disorders”?

————————-

It’s All In The Definition
Tue Apr 28 09:24:42 BST 2009 by Suzy Chapman

Note that in the Independent article, Prof Wessely disregards WHO ICD classifications and again uses the terms “chronic fatigue” and “ME (myalgic encephalitis)” [sic] and “Chronic Fatigue Syndrome (CFS)”, interchangeably.

In the Independent article he comments on the term “Neurasthenia” – which he says is a diagnosis not used in Britain for a century.

Prof Wessely has a new co-authored paper published this month around the theme of “Neurasthenia”:

The relationship between fatigue and psychiatric disorders: Evidence for the concept of neurasthenia. Journal of Psychosomatics. Samuel B. Harvey, Simon Wessely, Diana Kuh, Matthew Hotopf

Abstract:

http://www.ncbi.nlm.nih.gov/pubmed/19379961

The Editor of the Journal of Psychosomatics is Francis Creed. Creed and Michael Sharpe are both members of the APA DSM-V “Somatic Distress Disorders” Work Group, aka the DSM-V “Somatic Symptom Disorders” Work Group.

Both Sharpe and Creed were members of the CISSD Project, administered by Action for ME. Dr Richard Sykes, who was the Co-ordinator of the CISSD Project, is now working on the “MUPSS Project” in association with the WHO Collaborating Centre, Institute of Psychiatry.

NICE CFS/ME guidelines judicial review: Reflections on video

The NICE CFS/ME guidelines judicial review

Reflections on video

from GBCTwo

This is the first of a series of videos in which people give their impressions and views on the recent judicial review into the NICE guidelines on CFS/ME.

The video is in YouTube’s High Quality format and for those with large download capacities/faster internet connections and more powerful computers, the video is also available in High Definition.

Baroness Thornton: Response to issues raised in Lords CBT debate

Baroness Thornton: Response to issues raised in Lords CBT debate

For ease of reference, three items are compiled within this one posting:

The first, the link for the House of Lords “CBT Debate” which took place on 18 March 09:

8.37 pm

Health: Cognitive Therapy

Question for Short Debate

Tabled By Baroness Tonge:

To ask Her Majesty’s Government what steps they are taking to implement cognitive psychotherapy in the National Health Service.

The full debate can be read here on Hansard:

http://www.publications.parliament.uk/pa/ld200809/ldhansrd/text/90318-0012.htm

The Countess of Mar’s contribution starts in column 317; Baroness Thornton’s reply to the debate starts in column 323.

The second item, from the ME Association, a commentary on “ME/CFS AND THE INSURANCE INDUSTRY”, includes reference to the Countess of Mar’s raising the issue of NICE and insurance companies during this Lords “CBT Debate” plus a copy of the ME Association’s report on the debate.

The third, a letter from Baroness Thornton, Minister in the Government Whips Office, Government Spokesperson for the Department of Health, to the Countess of Mar, dated 2 April 2009.

From the ME Association:

ME/CFS AND THE INSURANCE INDUSTRY

PHI/INCOME PROTECTION POLICIES

The ME Association has become increasingly concerned about feedback from our members regarding the way in which some insurance companies are behaving when it comes to claims for private sickness/disability related benefits – PHI (income protection/replacement) policies in particular.

We do not believe that the NICE guideline on ME/CFS is helping matters, especially the way in which one insurance website has interpreted the outcome of the NICE guideline judicial review to mean that ME/CFS is now classified as a psychiatric illness rather than a physical illness. As a result, it is claimed that insurance companies can opt of making payments to people with ME/CFS where there is a psychiatric illness exclusion clause in the contract. See also our report on the Countess of Mar raising this issue during a House of Lords debate: http://www.meassociation.org.uk/content/view/826

We have therefore arranged a meeting with representatives from the Association of British Insurers (ABI) to discuss these and other insurance-related concerns. The meeting will take place on Wednesday 8 April.

Whilst we cannot undertake to deal with individual insurance related problems at this meeting, we are keen to hear from anyone who has any important general points which ought to be raised at this meeting. The agenda for the meeting will be based on the concerns noted above about the NICE guideline and the various problems that are discussed in the new MEA information leaflet on PHI policies.

TRAVEL INSURANCE

We are also about to start updating our database on insurance companies that are either helpful or unhelpful when it comes to offering travel insurance policies to people with ME/CFS. If you have any 2009 information on helpful/unhelpful travel insurers please let us know the basic details.

MEA iterature can e obtained using the pdf ORDER FORM on the MEA website:
http://www.meassociation.org.uk

—————————– 

http://www.meassociation.org.uk/content/view/826

Countess of Mar slates NICE and the health insurance industry

The NICE Guideline on ME/CFS, and the attitude of many health insurers towards people with the illness, came under withering fire from the Countess of Mar in a debate in the House of Lords yesterday (March 18).

The Countess said the Guideline was published amid “a barrage of criticism” from the ME community because the only two treatments it recommended – on the basis of very limited and strongly criticised scientific evidence – were Cognitive Behaviour Therapy (CBT) and Graded Exercise (GET).

The recent judicial review did not test the scientific validity of NICE’s recommendations. The Countess said the assertion made by Professor Peter Littlejohns, NICE clinical and public health director, after the legal challenge was rejected – he said this “means that the NICE guideline is the gold standard for best practice in managing ME/CFS” – was not accurate.

Speaking in a debate opened by Baroness Tonge on the cognitive therapy programme launched by the NHS. the Countess said: “People with ME already bear a great burden of disbelief about the reality of their illness from their closest relatives, their friends, the medical profession and other care professionals they encounter, as well as the community at large.

“There has been a preponderance of articles on “yuppie flu” in the press and broadcast media; research funding, other than that provided by the ME charities, has been exclusively weighted in favour of the psychosocial as opposed to the biomedical aspects of the illness; and ME patients seem to have to go through a great many more hoops, including CBT, to obtain and retain social security benefits and social care packets, as well private health insurance.”

But the Countess, who chairs a strategic ME planning group called ‘Forward ME’ comprising the heads of several national ME charities and voluntary groups, reserved her most intense criticism for the health insurance industry for their misinterpretation of the illness as a psychiatric condition.

“I have a quotation from Health Insurance News UK dated 22 February 2009. Under the heading,

“Medical Insurance May Not Cover Chronic Fatigue”,

“it gives a condensed description of ME. It then states:

“This sounds like a physical problem, doesn’t it? However, the NICE guidelines suggest that it is a psychiatric condition rather than a physical one.”.

“It goes on to say:

“Because of the NICE guidelines private health insurance companies are within their right to refuse cover if an applicant’s policy does not include psychiatric cover”.

“I cannot find any confirmation for the extraordinary suggestion that ME is a psychiatric condition in the NICE guidelines. Will the Minister ensure that this misinformation is rapidly withdrawn?”

She added:

“I have been dealing with ME sufferers for 17 years and I have never encountered a group of patients who are so maligned. The last straw for them is the requirement that they undertake a course of CBT and/or GET in order to qualify for benefits and private insurance payments.

“I accept that, in some cases, CBT alone may be beneficial. I suspect that in the old days it would have been called “grin and bear it”. However, CBT is rarely offered without GET and ME patients know only too well-and their views are supported by some 4,000 papers on scientific and clinical research-that GET makes their symptoms worse.

“The NICE guidelines lay great stress on the importance of shared decision making, working in partnership with the patient and the need for specialist expertise. Unfortunately, because this is a “Cinderella” condition, there are few specialists. Indeed, some of the specialist centres set up following the CMO report in 2002 have had to close because of a lack of funding and expertise. For this reason, “referral out of area” and “choose and book” should be available to all sufferers.

“The Department of Health and the World Health Organisation acknowledge that this is not a psychiatric condition. What action is the Minister’s department taking to ensure that people with ME are as respected as people with other medical conditions and that they are not forced to accept, as a condition for receipt of benefits and social care, “treatments” such as CBT and GET that, at best, provide no beneficial effects and, at worst, are positively harmful?”

Replying to the debate for the Government, Baroness Thornton said:

“The noble Countess, Lady Mar, made a very interesting and well informed speech about CFS/ME, whose sufferers she has championed for many years. I will be pleased to investigate the issues that she has raised about CFS/ME treatment, recommended by NICE. It is important to restate the value which the Government place on the independence of NICE’s evaluation process, but I undertake to follow up the disturbing point she made and see whether I can provide her with clarification.”

To read the full debate in Hansard, please click here:

http://www.publications.parliament.uk/pa/ld200809/ldhansrd/text/90318-0012.htm

The Countess of Mar’s contribution starts in column 317 and Baroness Thornton’s full reply to the debate starts in column 323.

 

Circulated by Jan van Roijen via Co-Cure mailing list and archived on Co-Cure at:

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0904b&L=co-cure&T=0&F=&S=&P=7872 

~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
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>>> Help ME Circle <<<<
>>>> 8 April 2009 <<<<
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Reference:
Countess of Mar slates NICE & Health Insurance
Industry; Help ME Circle, 6 April 2009; see:
http://www.meassociation.org.uk/content/view/826  

~jan van roijen

~~~~~~~~~~

BARONESS THORNTON

Minister in the Government Whips Office
Government Spokesperson for the Department
of Health

02-04-09

The Countess of Mar
House of Lords
London
SWIA OAA

Cognitive Behavioural Therapy

I write in response to the issues you raised on 18 March 2009, in our debate about cognitive behavioural therapy in the NHS.

You spoke eloquently about the difficulties facing people with CFS/ME and I appreciate the points you make. However, it would be inappropriate for me to comment on the quality of the evidence that NICE used to develop the guideline as it is an independent body.

At the same time, I think it is important to emphasise that NICE clinical guidelines are just that – guidelines for healthcare professionals. The guideline recognises there is no one form of treatment to suit every patient and it does not force patients into treatments they do not want. In fact, the guideline emphasises a collaborative relationship between clinician and patient, and recognises that treatment and care should take into account personal needs and preferences. lt goes so far as to say that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme.

Professionals are therefore free to use their clinical judgement and, in consultation with the patient, decide on the most appropriate treatment options on an individual basis, taking into account individual clinical factors and the preferences of each patient.

As you know, CBT is a rehabilitative approach designed to offer patients practical steps to help them manage their physical symptoms. ln common with other illnesses and conditions such as chronic pain, cancer, heart disease and diabetes where it has been successfully used to this end, its use does not imply that the cause of the illness is psychological.

It is not helpful to differentiate between biomedical and psychosocial treatment as, based on the currently available clinical evidence, patients are best served by a holistic approach.

Like you, I cannot understand why Health lnsurance News UK should interpret the NICE guideline as suggesting CFS/ME is a psychiatric condition rather than a physical one when, as you so rightly point out, NICE specifically states that CBT is “an evidence-based psychological therapy that is a collaborative treatment approach. When it is used for CFS/ME, the aim of CBT is to reduce symptoms, disability and distress associated with the condition. The use of CBT does not assume that the symptoms are psychological or ‘made up’.”

I should let you know that I will copy this letter to everyone who took part in the debate and I thank you once again for your valued contribution to it.

GLENYS THORNTON

House of Lords, London SW1A 0PW.
Telephone 020 7219 8502

25% ME Group resigns from Forward ME

Notice from the 25% ME Group issued 23 March 2009

WordPress Shortlink: http://wp.me/p5foE-1pb

 

25% ME Group resigns from Forward ME*

This is to inform the general ME community that the 25 % ME Group has withdrawn its membership from ‘Forward ME’.

Why, well we are no longer going to work with any organisation that supports the NICE Guidelines on ME/CFS, which primarily holds the belief that CBT AND GET will help people with this neurological disease. AfME and AYME have held firmly to their support of the NICE Guidelines and therefore the primary treatments that have caused so many problems for patients with ICD10 ME.

If any charity/organisation really looked ‘INTO’ the eyes of many people with severe ICD10 ME, then they would not have supported the NICE Guidelines or the very treatments that have also devastated many people with ME.

We, as a community of sufferers, truly need to decide who to support.

Yours

Simon Lawrence
Chairman

25% ME GROUP
21 Church Street
Troon
Ayrshire
KA10 6SQ

enquiry@25megroup.org  

www.25megroup.org

————————————————————————————–

Might we expect Invest in ME to follow the 25% ME Group’s lead and also resign from this caucus group?

*Forward ME   www.forward-me.org.uk

Forward ME is a caucus group convened, last year, by the Countess of Mar which meets away from the public arena of the APPG on ME.  It comprises representatives of selected ME/CFS organisations and a chronic fatigue society, invited to participate by the Countess of Mar who chairs these meetings.  RiME was not invited by the Countess of Mar to participate in her group.

See previous posting: 

https://meagenda.wordpress.com/2008/12/17/forward-me-countess-of-mar-minutes-available/

In November 2008, I raised a number of questions with Sir Peter Spencer (CEO Action for M.E.) in which I requested clarification of the current status of the existing ME Alliance.  Sir Peter has elected not to address these questions. 

According to the ME Association’s magazine “ME Essential” Spring 2009 edition, in an article titled:

“Countess of Mar leads ME/CFS strategy group” page 36

Those invited to take part in “Forward ME” were representatives from AfME, AYME, BRAME, Tymes Trust, Invest in
ME, ReMEmber, and the 25% Group.

The ME Association writes:

“As a result of this initiative there have been no further formal meetings of the ME Alliance – a smaller group consisting of AfME, AYME, MEA and the Tymes Trust. None are planned. Although no decision has been made about the future of the ME Alliance, the likely outcome is that it will cease to function once it is clear that the new wider group has become a permanent fixture.

A date for the next meeting of FORWARD ME has not yet been fixed. Hopefully, the new group will promote effective joint working on a wide range of topical issues.”

It is disturbing that the CEO of Action for M.E. has not been prepared, in four months, to be transparent about the status of the existing ME Alliance and that the ME patient community was not consulted about the future of the existing Alliance, whether it welcomed the setting up of a caucus group by a parliamentarian, what the remit of this new group should be or the basis on which membership of this new group would be extended. 

The 3rd meeting of Forward ME is scheduled for 21 April 2009.

Minutes of the first two meetings of Forward ME can be read at:  www.forward-me.org.uk

 

Summary: Meeting, MEA Board of Trustees 17 March 2009

Summary of meeting, ME Association Board of Trustees Tuesday, 17 March 2009

This is a summary of key points to emerge from a meeting of The ME Association Board of Trustees that took place at our Head Office in Buckingham on Tuesday 17 March 2009. Informal discussions also took place on a number of issues the night before. Please note that this is a summary of the Board meeting – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman (by telephone link)
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS)

Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:

Rick Osman (RO) – Vice Chairman

FINANCES

ED updated trustees on the financial situation, including a discussion on the final monthly accounts for the year ending December 2008. Despite the very difficult economic climate for charities it was encouraging to note that income from subscriptions, gift aid, advertising, literature sales and general fundraising for 2008 was slightly up on 2007. Income for general funds was also roughly in line with expenditure.

However, like all charities we are now facing a situation where people are likely to be reducing the amount of money they are able or willing to give to the charity sector. At the same time, demand on our support and information services is increasing, and may well see a further significant increase once the government’s new welfare/benefit reforms start to take effect.

Trustees and staff agreed to continue to maintain very tight control over expenditure and to pursue the best rates of interest on money held in our reserve accounts – where there has been a very dramatic fall in income as a result of the base rate cuts over the past few months.

House of Lords Debate: Health: Cognitive Therapy, 18 March 09

Column 316: The Countess of Mar 

http://www.publications.parliament.uk/pa/ld200809/ldhansrd/text/90318-0012.htm#090318109000236 

Health: Cognitive Therapy
Question for Short Debate

8.37 pm
Tabled By Baroness Tonge

To ask Her Majesty’s Government what steps they are taking to implement cognitive psychotherapy in the National Health Service.

Baroness Tonge: My Lords, last weekend I was in Syria talking to Hamas leaders. It was very interesting. In the discussions, one of them said, “We love life and happiness as much as any of you do”. I thought that that was fairly profound stuff coming from a group that uses suicide bombers, but I shall save that for another debate. We all love life and happiness and that is what we all want. Sometimes people or events conspire to make us unhappy or sometimes, without any reason, people become depressed. Sir Winston Churchill had his black dog, which was not a bipolar disorder but just good old depression.

I am fortunate never to have suffered. I have been very sad, yes, frustrated, yes, suffered pre-menstrual tension, yes—you should have seen me in those days—but fortunately I have never been depressed. However, I have many patients, friends and relatives who have

18 Mar 2009 : Column 307

suffered and I have watched their distress. That distress is often increased when they are prescribed antidepressants, which sometimes unjustly have a reputation with the general public of not doing any good.

NICE CFS/ME Guideline Judicial Review: Media coverage

Glasgow Herald | 16 March 2009 | Response

Response to “Charities angry as ME court challenge is blocked”, The Herald, March 14

Evidence shows exercise may not be best treatment for ME patients

by Helen Brownlie, Secretary, ScotME, Cambuslang, Glasgow

Read full article here

————————-

BBC News | 14 March 2009

[Image]

“There is some degree of controversy over how ME should be treated”

ME pair lose NHS treatment appeal

Two ME patients have lost a High Court appeal against what they claimed was an “unfair and irrational” approach by the NHS to their condition.

The judicial review was brought by Kevin Short, from Norwich, and London-based Douglas Fraser.

They argued the NHS was wrong to place so much emphasis on psychological rather than medical therapies.

But a judge dismissed their allegations that current therapies were harmful to some with myalgic encephalomyelitis.  Read on

————————-

Glasgow Herald | 14 March 2009 | by Jonathan Liew

Charities have condemned a court decision to throw out a bid by two ME sufferers to change guidance given to NHS doctors on treating the condition.

Douglas Fraser, a former violinist for the Scottish Philharmonic Orchestra, and Kevin Short, an engineer from Norfolk, argued that the guideline issued by Nice, the England and Wales NHS spending watchdog, unlawfully restricted the range of treatments available.

They claimed that decisions made by Nice were biased, or appeared to be biased, and that this was a view “shared across the ME community”.  Read on

————————-

edp24 | 14 March 2009  |  by Sarah Brealey

Norfolk man losed ME treatment court battle

A graduate from Norwich and his fellow ME sufferer have lost their battle for different types of medical treatment to be available on the NHS.

Kevin Short, 47, a former engineer from Norwich, has had his complaints dismissed as misconceived by a High Court judge. He was fighting alongside Douglas Fraser, a former professional concert pianist from London.  Read on

New Scientist: “Interview” with Prof Simon Wessely

On Wednesday, New Scientist published a piece by Clare Wilson featuring Professor Simon Wessely.  Brace yourselves and read the full “interview” here:

New Scientist

http://www.newscientist.com/article/mg20126997.000-how-people-can-think-themselves-sick.html

How people can think themselves sick

11 March 2009 by Clare Wilson

Can people think themselves sick? This is what psychiatrist Simon Wessely explores. His research into the causes of conditions like chronic fatigue syndrome and Gulf war syndrome have led to hate mail, yet far from dismissing these illnesses as imaginary, Wessely has spent his career developing treatments for them. Clare Wilson asks what it’s like to be disliked by people you’re trying to help…Read on

Comments – and I’m sure readers will have plenty – can be left via the Comment section at the foot of the article. 

For letters, use the online form:  http://www.newscientist.com/contact/person?recipient=lett 

Or E-mail letters to:  letters@newscientist.com 

If submitting a letter, include full postal address, telephone number and article reference (issue, page number, title). New Scientist appears to prefer short letters of around 150 words.

At the time of publishing, there have been over 90 comments.

Update: @ 18 March, there are now over 330 comments.  Comments are restricted to 5000 characters, so you may need to split longer comments over two postings.  The posting box has difficulty accepting text pasted from an email or from Word or Notepad.  It also has a problem displaying apostrophes – it displays the html code instead.  So avoid the use of “can’t”, “it’s”, “Wessely’s” etc.

Here’s one I posted, earlier:

http://www.newscientist.com/commenting/browse?id=mg20126997.000&page=7

In response to comment: Where Is The Science???
Fri Mar 13 14:14:51 GMT 2009 by Suzy Chapman, ME agenda

Mark Hewgill comments that he is surprised to see this article in New Scientist. I am not. In my view, this cobbled together piece was orchestrated as a potential damage limitation exercise, appearing as it did, just two days before the anticipated handing down of the judgement on the Judicial Review of the NICE CFS/ME Guideline (CG53). I very much doubt that the timing of this piece was co-incidental.

In March/April 2008, the Royal Society of Medicine received a large number of complaints because the Conference Planning Committee (of which Professor Wessely had been a member) had been dominated by psychiatrists and because a significant number of those selected to give presentations were also from predominately psychological / psychiatric backgrounds.

James Campbell comments, “Yet again we have Professor Wessely failing to mention any of the several thousand research papers which clearly show that ME/CFS is an organic multi-system disease.”

Towards the end of his own presentation at this RSM Conference, Prof Wessely had remarked, “…it is not possible, really though, to completely avoid the outside world much as we would like…I also think it is a great mistake, because if you really actually want to understand Chronic fatigue syndrome – ME – whatever we are going to call it, you have to do so in possession of all the facts – not just those facts that you like, but all of them. You cannot pick and choose, and the history of science tells us very clearly that turning your back on things that you do not like, things that are not going the way you want them to, and there are many, many examples of this, at best leads to false conclusions and bad decisions, and at worst, leads to bigotry and intolerance.”

Indeed. So Professor Wessely, we can expect to see you at the 29 May Invest in ME Conference?

Examples of concerns raised by professional bodies about the NICE (draft) Guideline CG53 on “CFS/ME”

html version:  http://www.meactionuk.org.uk/Compilation_of_Professional_concerns.htm

Examples of concerns raised by professional bodies about the NICE (draft) Guideline CG53 on “CFS/ME”

by Margaret Williams  | 13 March 2009

In his Approved Judgment in the Judicial Review of the NICE Clinical Guideline 53 on “CFS/ME” released today, the Judge (Mr Justice Simon) stated:

“The circumstances are not such as to lead a fair minded and informed observer to conclude that there was a real risk of bias among the members of the GDG.”

Commenting on today’s Judgment, NICE’s Press Statement says: “Professor Peter Littlejohns, NICE Clinical and Public Health Director, responded to the High Court judgment saying…We are pleased that all members of the GDG and those involved in selecting the GDG were totally exonerated from the unfounded claims made against them”

(  http://www.nice.org.uk/media/001/6F/CFSMEJRJudgementStatement130309.pdf  ).

Read full document here on ME agenda: 14pp MS Word:  Compilation of Professional Concerns by Margaret Williams