Action for M.E. and Facebook; CISSD Final Report finally published

Action for M.E. and Facebook; CISSD Final Report finally published

WordPress Shortlink: http://wp.me/p5foE-2gi

Action for M.E. maintains a Facebook site at: http://www.facebook.com/actionforme

Over the past few weeks, questions and criticism around Action for M.E.’s governance, the way in which it relates to its membership, its policies and operation and its relationship with government have been raised by various users on its Facebook “Wall”.

Action for M.E. has chosen not to respond to these questions individually, on the Wall, itself, but by issuing a set of responses in a PDF document. The first document was this one: Facebook responses 20.10.09

A second, updated, set of responses was issued yesterday. It’s not clear whether these responses have been compiled by Action for M.E.’s new Policy Manager or by another member of staff, as the document is unsigned, but it’s interesting to see how the organisation has fielded these questions and concerns.

[To clarify - none of the questions for which responses were provided had been raised by me. I prefer to liaise directly with organisations for information, documents or for policy and position statements or, where applicable, obtain information via the Freedom of Information Act.]

Action for M.E. is becoming rather discomforted that its Facebook site is being used by some as a vehicle for raising political issues but you cannot take the politics out of ME. Users are already asking how the organisation intends to define “political”.

Those of us who were members, in 2003, of the joint charities’ message board “MEssage-UK” will recall how rapidly first Action for M.E., then AYME pulled out of this venture when faced with too many awkward questions; how the message board was then set for pre-moderation by the ME Association; how the moderator, Tony Britton, vetoed posts of a “political nature” without ever setting out how he was going to define what came under the heading of “political” and what did not; how the archives were sifted through for “contentious” messages by senior ME Association staff and then quietly excised without the authors being informed; how the board was closed down suddenly just days before the critical December 03 AGM in which Dr Shepherd was standing as a candidate in the Trustee elections…

When will our patient organisations learn that if they are going to place themselves on public platforms they first need to develop policies for the fielding of questions?

This latest set of responses can be opened in PDF format here:

PDF file: ONGOING FB Q and A document. 29.10.09

Answers to questions raised on the Action for M.E. facebook page, October 2009. Updated

or from Action for M.E’s website, here: http://tinyurl.com/ongoingFB-responses291009

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One of the responses is for a question raised (note, not by me) around the CISSD Project, for which Action for M.E. had acted as principal administrators throughout the project’s life (2003 to 2007).

In response to this question, on Page 23:

Question: “What was your involvement in the CISSD project Conceptual Issues in Somatoform and Similar Disorders for which you received a grant of 67k and why was this project kept so secretive from your members? Only information about it was released when freedom of information act requests were made that pushed you in to a corner where you had to confirm you were involved in it. Was this CISSD project set up with the purpose as suggested by other sources with the intent to look at changing the ME/CFS ICD-10 coding* to that of a Somatoform disorder?”

Action for M.E prefaces its reply with, “As a charity, Action for M.E. is not obliged to answer questions under the Freedom of Information Act but provides information of its free will, as resources allow.”

I should like to clarify that the Freedom of Information requests submitted by me in relation to the CISSD Project had been submitted to the Institute of Psychiatry. Information resulting out of these requests under the FOIA is available here: http://meagenda.wordpress.com/dsm-v-directory/information-obtained-under-foi-act/

One of my requests to the Institute of Psychiatry had been for a copy of the December 2007 “CISSD Final Report” from Dr Richard Sykes to Action for M.E. I had suggested to the Institute of Psychiatry’s Legal Compliance Office that the report ought to be provided with a erratum note, by Dr Sykes, addressing a number of errors he had made in the document that had come to light in June 09, when an unauthorised copy of the text had been placed in the public domain.

Unfortunately, what the Institute of Psychiatry were provided with by Dr Sykes, in order to fulfil the request, is evidently an earlier draft of the December 2007 text. It is missing the Contents page, and there are other disparities between the text that I was provided with and the Final version. No erratum note had been attached, either.

However, as part of its response to the Facebook question, Action for M.E. has now elected to publish two files. The first is a copy of the December 2007 CISSD “Final Report” to Action for M.E., the second, a copy of the “Co-ordinator’s Report”, with a covering letter and summary.

Action for M.E. has finally put these documents in the public domain!

Open PDF files here:

CISSD project report 1

The CISSD Project and CFS/ME Report on the CISSD Project for Action for ME 

Conceptual Issues in Somatoform and Similar Disorders

Report to be read in conjunction with Co-ordinator’s Final Report

Richard Sykes December 2007

CISSD project report 2

Covering letter

The CISSD Project 2003-2007

(Conceptual Issues in Somatoform and Similar Disorders)

Summary

FINAL REPORT OF CO-ORDINATOR   Richard Sykes PhD, CQSW

or from Action for M.E’s website, here:

http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%201.pdf
http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%202.pdf

 

In August, Action for M.E. had published an article titled “Classification conundrum” on pages 16 and 17 of Issue 69 of its membership magazine, InterAction.

You can read a copy of the article here, in an ME agenda posting dated 25 August 2009:

“Action for M.E. stuffs the elephant back into the cupboard”

Note that although the Project had been initiated by Dr Richard Sykes, Dr Sykes does not appear to have contributed to this article – basically an apologia piece authored by Dr Derek Pheby.

In fact, Dr Sykes and his role as instigator and co-ordinator of the Project is not mentioned in the article at all. Nor is the Project’s source of funding – the charitable Trust run by Dr Sykes’ brother, Sir Hugh Sykes, a non-executive director of A4e, the largest European provider of Welfare to Work programmes. 

The December 2007 “Final Report” document has historical significance.  It also contains material (including an entire Appendix) which was omitted from the “CISSD Summary Report” that the ME Association published in June, this year, having negotiated with Dr Sykes for an article. (But having trumped Action for M.E., the MEA has made no comment whatsoever on the implications of the CISSD Project nor provided its membership with an analysis of the various papers and documents that came out of it.  Nor has the MEA made any comment or published any information on the progress of the ICD-10 and DSM revision processes for which the CISSD Project was initiated and has fed into.)

The document sets out Dr Sykes’ views, opinions and perceptions (and misperceptions) that had not previously been publicly available. It would have been appropriate for Action for M.E. to have negotiated with Dr Sykes for this document to have been published in 2007.  Instead, it kept the lid on this project –  a project that had been chaired by Professors Michael Sharpe and Kurt Kroenke and had involved many influential, international researchers and clinicians from the field of liaison psychiatry and psychosomatics – several of whom are now directly involved in the revision of the American Psychiatric Association’s DSM-IV.

In August, I called publicly on Action for M.E. to publish a copy of the CISSD “Final Report” on its website and to preface it with an erratum note addressing both the errors of coding within “Appendix B” of the document and also Dr Sykes’ misconception that “Chronic fatigue syndrome” does not appear in ICD-10.

Chronic fatigue syndrome is listed in the International Statistical Classification of Diseases and Related Health Problems: 10th Revision Version for 2006, Volume 3, the Alphabetical Index (ICD-10 Volume 3).

For the entry in question, see page 528, top right hand column:

http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-3

Since no erratum note has been published with these documents please be aware that where Dr Sykes has written “G33.3″ and “G33.4″ on Pages 12 and 13 of document:

http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%201.pdf

this should read “G93.3″ and “G93.4″.

Why has Action for M.E. published these documents without negotiating with Dr Sykes for an Erratum?

Why did Action for M.E. not publish these documents in August to accompany the article in InterAction?

 

*There is no coding for “ME/CFS” in ICD-10. 
Postviral fatigue syndrome is classified in Chapter VI of ICD-10 Volume 1: The Tabular List at G93.3.
(Benign) myalgic encephalomyelitis is classified in Chapter VI of ICD-10 Volume 1: The Tabular List at G93.3.
Chronic fatigue syndrome is listed in ICD-10 Volume 3: The Alphabetical Index under G93.3.

—————–

Text version of December 2007 CISSD “Final Report” here: CISSD Final Report to AfME 2007

Text version of December 2007 CISSD “Co-ordinator’s Report” here: CISSD PROJECT Coordinators Final Report

June 2009 Summary Report on CISSD as published by the ME Association

The Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report by DSM-V Work Group members, Joel Dimsdale and Francis Creed was published in the June issue of the Journal of Psychosomatic Research:

Free access to both text and PDF versions of this Editorial at: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

For detailed information on the proposed structure of ICD-11, the Content Model and operation of iCAT, the collaborative authoring platform through which the WHO will be revising ICD-10, please scrutinise key documents on the ICD-11 Revision Google site:

https://sites.google.com/site/icd11revision/
https://sites.google.com/site/icd11revision/home/documents

For information around the DSM and ICD revision processes see DSM-V and ICD-11 Directory page: http://meagenda.wordpress.com/dsm-v-directory/

Dr Nigel Speight resigns from children and young person’s organisation AYME

Dr Nigel Speight resigns from the children and young person’s organisation AYME

For many years, paediatric specialist, Dr Nigel Speight, has been a champion of families with a child or young person with ME or where ME is suspected. 

He has advocated for families facing wrongful accusation of MSpB (FII), where child protection orders have been instigated or threatened following disagreements between the family and the child’s medical professionals over the management of the condition, where medical professionals have been unwilling to make a diagnosis of ME and where social services have become involved in the case when a child or young person has been unable to regularly attend mainstream school due to ill health.

Dr Speight recently announced his resignation as a Patron to the children and young person’s patient organisation, AYME [Association of Young People with ME]  http://www.ayme.org.uk/.

AYME’s Medical Advisor is Dr Esther Crawley, Consultant Paediatrician at the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust. Dr Crawley had been a member of the NICE CFS/ME Guideline Development Group. 

Dr Speight, who is now retired from the NHS, has become a Medical Advisor to the 25% M.E. Group.

The following announcement was published in a recent 25% M.E. Group newsletter:

I just thought I should inform you officially that after a long and happy association with AYME I have decided to resign as their Patron. Without going into too much detail I would say that over the last couple of years I have become aware that they have changed their position on several areas and that our views have accordingly diverged. In particular AYME seem to have become more willing to collaborate with the medical and psychiatric establishment in order to appear respectable. This appears to have been the cause of AYME’s relative enthusiasm for the NICE Guidelines, which most of us feel involve an overemphasis on CBT and GET. This compromise seems to have helped the psychiatrists to get a new lease of life.

The result of all this is that AYME appear to have alienated themselves from most of the other ME charities (with the exception of AfME [Action for M.E.] who appear to be taking a similar position). In this controversy I feel more in sympathy with the rest of you. I have gained the impression that AYME no longer appreciate my opinions and prefer my status as their figurehead to be a largely silent one. It is a combination of all these factors that has caused me to resign and I am sure you will all understand.

With Best Wishes

Nigel Speight

Concerning a recent statement and report published in the wake of the Judicial Review of the NICE Guidelines on CFS/ME

Concerning a recent statement and report published in the wake of the Judicial Review of the NICE Guidelines on CFS/ME

1 August 2009

In the past two days, various material has been published on the internet in relation to matters arising out of the Judicial Review of the NICE Guidelines on CFS/ME which was heard in the High Court in February, this year. 

This includes a statement issued on behalf of Professor Malcolm Hooper and Margaret Williams.

The statement discloses that in April 2009 a “substantial complaint” was served on the legal representatives for the Fraser/Short legal challenge – a complaint said to be currently before the Legal Complaints Service and the Bar Council Standards Board and the subject of on-going action.

The Statement from Professor Malcolm Hooper has been published by Stephen Ralph, on Professor Hooper’s behalf, on Co-Cure and on ME Action UK site and is dated 29 July 2009.  A second statement issued by Professor Hooper was published on 5 August.

On 30 July, Jane Bryant, Director of the ONE CLICK Group and the Interested Party’s Litigant Friend in the Judicial Review, published a report and commentary on the ONE CLICK Group site. Selected court documents were also placed in the public domain on 30 July which form an integral part of the report and which need to be read in conjunction with this report.

The report reveals that following the Judicial Review hearing, Beachcroft LLP, the solicitors acting for NICE, submitted a Wasted Costs Application which was granted by the High Court and that in June 2009, Leigh Day & Co were served with a Wasted Costs Order of £50,000, payable to the Defendants, NICE.

As some of the issues set out and discussed within the statements, the report and associated court documents relate to the “substantial complaint” and “on-going action” against the legal representatives who had acted for the Claimants, Mr Douglas Fraser and Mr Kevin Short, I am not intending to publish the statements from Professor Malcolm Hooper of 29 July and 5 August, nor the report and commentary by Jane Bryant of 30 July.

I refer readers, instead, to the respective websites of those who have published this material.

The statement appended has been published elsewhere, today, by two individuals who were not involved in either the case for the Defendants or that of the Claimants and the Interested Party, but who wish to clarify their respective positions, in the light of recent events. 

Previous postings around the NICE CFS/ME Judicial Review are archived under Category tag NICE Judicial Review 

COURT JUDGMENT Document for hearing 11 and 12 February 2009 in PDF format here:   Approved NICE Judgment  [1.3MB]

NICE PRESS STATEMENT ISSUED: 13 MARCH 2009

NICE statement on CFS/ME judicial review outcome

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

or open PDF here:   cfsmejrjudgementstatement130309

The Expected Review Date for NICE G53 is currently given as August 2010.

——————

For BMJ Rapid Responses to NICE related articles and Letters

See: http://www.bmj.com/cgi/eletters/338/jun04_3/b1805#217952

for Rapid Responses to:

PRACTICE:
Pauline Savigny, Paul Watson, Martin Underwood on behalf of the Guideline Development Group
Early management of persistent non-specific low back pain: summary of NICE guidance

(Tom Kindlon, Information Officer, Irish ME/CFS Association)

and http://www.bmj.com/cgi/eletters/339/jul28_3/b3028

for Rapid Responses to:

LETTERS:
Michael Rawlins and Peter Littlejohns
NICE outraged by ousting of pain society president

(Tom Kindlon, Information Officer, Irish ME/CFS Association; Dr Ellen Goudsmit)

 

Permission to repost 

CLARIFICATION BY ANGELA AND STEPHANIE KENNEDY

In light of recent events and suggestions made elsewhere about both of us, we would like to clarify, collectively, the following:

In 2005, Stephanie, after receiving a ‘CFS/ME’ diagnosis in 2001/2002, was subsequently given a ‘borreliosis’ diagnosis, following test results. As anyone with any knowledge of the problems facing people diagnosed with ‘CFS/ME’, or ‘Lyme’, or ‘borreliosis’ will understand, the political situation is not as simple as being diagnosed with one or another. A useful account, for the layperson, of the rank confusion and contestation surrounding ‘Lyme’, ‘borreliosis’ and ‘CFS’ diagnoses is given in Pamela Weintraub’s book “Cure Unknown: Inside the Lyme Epidemic”, with a foreword by Hilary Johnson, author of “Osler`s Web”. It should be noted that many people, initially diagnosed with ‘CFS/ME’, have subsequently received a diagnosis of ‘borreliosis’ or ‘Lyme’, or other condition or disease.

Stephanie remains severely physiologically impaired by her condition, though there have been small improvements due to certain treatments and a proper diagnosis of a cardiac/neurological condition. We would both like to go on record and say, specifically, that none of this improvement has been as a result of NHS policy or ‘care’. Our collective position remains that the NICE guidelines are inappropriate and dangerous.

In 2007, Stephanie attempted to bring, independently from any other party, a Judicial Review against NICE in respect of their Guidelines for ‘CFS/ME’. Because of the other, apparently partially funded, cases being brought at the same time, Stephanie could not secure Legal Aid and therefore unfortunately could not proceed. Situations such as these are apparently quite common and neither of us hold anyone ‘responsible’ for Stephanie’s failure to secure Legal Aid.

Another clarification we need to make is that we had no knowledge of the Short/Fraser case until it was first announced publicly, although it is clear they had knowledge of Stephanie’s case as her solicitors were mentioned by Professor Malcolm Hooper in his statement. Although we kept the One Click group informed of Stephanie’s intention to bring a JR action, we were not given any information by them, and therefore had no knowledge of the One Click JR case apart from that made public by them.

We are both keen to see accuracy prevail, because we believe there are important advocacy lessons that might be learned from a careful analysis of what has happened. For this reason we may have cause to clarify any further issues raise by public comments made by supporters of the Short/Fraser or the One Click JR action.

Due to family problems at the time, Angela was unable to continue campaigning with the One Click Group. Since April 2006, the trajectory of campaigning that One Click has subsequently taken is therefore not that of Angela’s own, although Angela is aware that some of her work was used by One Click in the response to the NICE guidelines (for example, her “Summary of the Psychiatric Paradigm of ME/CFS” document), subsequent to her having discontinued her association with them. Angela has no problem with her previous work on either NICE or the psychiatric paradigm being used by other advocates, and is happy that this work has been of use to people.

Since leaving One Click in 2006, Angela continues to work in advocacy for people suffering because of ‘psychogenic’ explanations for their illness. For example, she co-initiated a campaign to ensure the APPG on ME were made fully aware of the objections many in the ME/CFS community have to the ‘psycho-social’ approach adopted by most of the ‘CFS/ME’ clinics. This was done in support of other advocates who had been highlighting this problem. In 2008 she, with another advocate, tackled the ongoing misrepresentation of the ME/CFS community that was taking place on Wikipedia, an unfortunate result of unsubstantiated allegations, made in the Gibson Report, about members of the ‘CFS/ME’ community ‘harassing’ a Professor. As a result of their attempts to protect the ME/CFS community from such unsubstantiated allegations being incorporated into the Wikipedia article on Simon Wessely, Angela was herself defamed on Wikipedia, and, falsely implicated as being involved in “personally harassing” Professor Wessely. More information on this subject can be found here in the public-archived dedicated Yahoo Group APK-Papers.

Angela continues to advocate for people adversely affected by the scientific and logical flaws in ‘psychogenic’ explanations for illness. She is currently working on an academic project which she hopes will benefit the ME/CFS, Lyme and other patient communities, a project supported by Stephanie. Both continue to support the work of other patient advocates whenever possible.

We both hope that the above clarifies our respective positions.

ANGELA KENNEDY
STEPHANIE KENNEDY

1 August 2009

Documented pathology seen in ME/CFS that contra-indicates the use of GET: Margaret Williams 23 July 2009

Documented pathology seen in ME/CFS that contra-indicates the use of Graded Exercise Therapy

by Margaret Williams

23 July 2009

This document together with previous articles and commentaries by Margaret Williams can be found at ME Action UK

http://www.meactionuk.org.uk/Documented_pathology_seen_in_ME-CFS.htm

http://www.meactionuk.org.uk/Documented_pathology_seen_in_ME-CFS.pdf

The evidence-base of pathology that has been demonstrated in ME/CFS appears within a larger document that is already in the public domain, but is now provided as a 9 page separate item for ease of access.

The UK ME/CFS community may not yet be fully aware of the content of Dr Esther Crawley’s presentation on 8th July 2009 to the Countess of Mar’s “Forward-ME” group meeting held at the House of Lords. The Minutes of that meeting and Dr Crawley’s power-point presentation are accessible at http://www.forward-me.org.uk/8th%20July%202009.htm

Of particular note are the following points made by Dr Crawley:

· The CCRNC (CFS/ME Clinical and Research Network and Collaboration, of which she is Chair) is a “multidisciplinary organisation which exists to promote and support the delivery of evidenced based treatment for children, young people and adults with CFS/ME throughout the UK” whose objective is “To champion evidence-based approaches to the treatment of CFS/ME, such as those provided in the NICE guidelines” and which will use “clinical expertise to inform healthcare policy” and will “provide training for clinicians and researchers from all disciplines involved in the diagnosis and treatment of CFS/ME”.

· The CCRNC has an “Active training programme” and has “the ability to provide national training programmes”.

· The CCRNC will “invite no more than four people drawn from National UK CFS/ME organisations which explicitly support the aims and constitution of the organisation to sit on the Executive committee as either observers or members”.

· Its research strength is that it has the “Largest cohort in the world”.

· Its strengths are “working together — 600 clinicians and researchers, MRC, NIHR (National Institute for Health Research), Welcome (sic), patient and carer reps, charity membership”.

It is particularly notable that the Minutes record that when asked by Dr Charles Shepherd “whether, in the light of the widespread opposition to the NICE Guidelines, charities that were opposed to them would be invited to become members or associates of the CCRNC executive”, Dr Crawley’s response was: “In order to join the collaborative, charities would be expected to sign up to the evidence-based approach”.

The only possible interpretation of this is that patients’ charities are welcome to participate provided that they accept the behavioural modification interventions of CBT/GET recommended in the NICE Guideline (for which Dr Crawley was a member of the Guideline Development Group).

This would seem to be something akin to medical totalitarianism, especially given that Wessely School “evidence-base” upon which the NICE Guideline is predicated has been so stringently criticised by international ME/CFS experts.

See, for example:  http://www.meactionuk.org.uk/JR_Statements_-_extracts.htm

It is worth recalling that at the Royal Society of Medicine meeting on “Medicine and me: ME and CFS” held just three days later on 11th July 2009, MRC Professor of Clinical Immunopharmacology Stephen Holgate said that at the MRC, referees tend to reinforce the status quo and that he was not sure if his wish for an MRC inter-disciplinary group involving immunologists, neurologists and infectious diseases physicians would happen, which would seem to indicate that the psychiatrists’ stranglehold on MRC funding for biomedical research into ME/CFS is set to continue.

The Forward-ME Minutes also record that Dr Crawley said: “the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement”.

Given that the “infighting” may have arisen because of the polarised views about the nature of ME/CFS, with the Government-funded charities (Action for ME and The Association of Young People with ME, to the latter of which Dr Crawley is Medical Advisor) supporting the NICE Guideline that is underpinned by flawed research, whilst other charities base their stance on the international evidence that shows the NICE Guideline to be seriously misinformed, it may be timely to look again at the following “evidence-base”.

Dr. Crawley stated that only those ME/CFS charities which agree to “sign up to the evidence based approach” are to be permitted to join her “collaborative”.

Given the volume of biomedical evidence that does not support Graded Exercise Therapy it would appear that in this instance signing up to an “evidence based approach” involves signing up to an approach that ignores most of the evidence.

Science is not furthered by a self-reinforcing “collaborative” determined to exclude dissenting voices; rather, a vigorous and honest dialectic is required. Medicine has no place for cabals and the lazy thinking they foster.

The “Forward-ME” Minutes record that Lady Mar said she hoped that Dr Crawley would “agree to continue to work with Forward-ME”; one can only wonder, sadly, just how far backwards her “Forward-ME” initiative will carry the UK ME/CFS community.

Evidence-based research showing pathology that contra-indicates the use of graded exercise in ME/CFS

There is an extensive literature from 1956 to date on the significant pathology that has been repeatedly demonstrated in ME/CFS, but not in “CFS/ME” or “chronic fatigue”; this can be accessed on the ME Research UK website at

http://www.meresearch.org.uk/information/researchdbase/index.html  and also at http://www.meactionuk.org.uk/Organic_evidence_for_Gibson.htm  

According to Professor Nancy Klimas, ME/CFS can be as severe as congestive heart failure and the most important symptom of all is post-exertional relapse (presentation at the ME Research UK International Conference held in Cambridge in May 2008).

Statements of Concern about CBT and GET provided for JR: Margaret Williams 22 July 2009

Statements of Concern about Cognitive Behavioural Therapy and Graded Exercise Therapy provided for the High Court Judicial Review of February 2009

by Margaret Williams

22 July 2009

This document together with previous articles and commentaries by Margaret Williams can be found at ME Action UK

http://www.meactionuk.org.uk/JR_Statements_-_extracts.htm

http://www.meactionuk.org.uk/JR_Statements_-_extracts.pdf

Over twenty renowned ME/CFS experts provided Statements in support of the Judicial Review of the NICE Guideline on “CFS/ME” heard in February 2009 in the High Court in London. They were specifically written in support of the challenge to the NICE Clinical Guideline on “CFS/ME” and they express concern about the recommendation by NICE that the only management of ME/CFS should be CBT and GET (the same interventions that are the subjects of the Medical Research Council’s PACE Trial).

None of the Statements was accorded the recognition that they merit.

Extracts from those Statements (some of which were of considerable length) are now being placed in the public domain in the interests of ME/CFS sufferers and those who support and care for them.

· “In my view, the Guideline is biased and over rigid in its recommendations and will put a large number of ME sufferers at risk of harm through its strong recommendations for the use of CBT and GET. CBT is based on the idea that somatoform disorders are maintained by abnormal or unhelpful illness beliefs which lead to abnormal or unhelpful behaviour. The first requirement for a somatoform diagnosis is that there be no physical cause for the symptoms. This is not the case in ME/CFS” (Malcolm Hooper, Professor Emeritus of Medicinal Chemistry, University of Sunderland, November 2007)

· “Two forms of treatment…are CBT and GET. CBT is a psychological treatment. Its application in what is certainly an organic disorder is basically irrational. Its putative mode of action is based on the proposition that patients with ME/CFS feel unwell because they have an ‘abnormal illness belief’, and that this can be changed with CBT. It has never been proven to be helpful in the majority of patients with ME/CFS. GET comprises a regime of graded exercise, increasing incrementally over time. It has been almost universally condemned by most patient groups. A number of patient surveys have shown it to be, at best, unhelpful, and at worst, very damaging. Its application is counter-intuitive, particularly when one of the most debilitating and well recognised symptoms of ME/CFS is post-exertional malaise which can put some patients in bed for days after relatively trivial exertion” (Dr William Weir, Consultant Physician, November 2007)

· “The GDG has placed undue reliance upon a small number of RCTs that were methodologically flawed because they did not adequately define the patient population” (Dr Terry Mitchell, formerly Consultant Clinical Lead (CNCC) of the Norfolk, Suffolk & Cambridgeshire NHS ME/CFS Service, 23rd June 2008)

· “The predominance of psychologists / psychiatrists on the GDG is entirely inappropriate and has led to a biased analysis in my opinion. The GDG has placed undue emphasis on a few UK clinical trials which support the use of psychological treatments, however, these studies did not properly or adequately define their patient population” (Dr Jonathan Kerr, Hon. Consultant in Microbiology; Consultant Senior Lecturer in Inflammation; Principal Investigator of the CFS Group, St George’s University of London, 11th August 2008)

· “You will see from my attached treatise that I consider that the recommendation of CBT and GET as blanket treatments of ‘clinically excellent’ first choice is extremely dangerous to patients. I am concerned that NICE claims that an adequate evidence base supports CBT/GET, when in fact the Guideline Development Group (GDG) relied almost exclusively on a handful of extremely controversial RCTs (random controlled trials). I have no doubt that patients in the research quoted by the GDG did not have ME/CFS” (Dr Irving Spurr, Newcastle ME Research Group; 12th August 2008)

· “My overall impression reading the Guidelines for the first time was one of alarm. I will limit my comments to the deficiency which has the greatest potential for harm to patients. The NICE Guidelines do not make any reference to the biomedical literature on ME/CFS. A physician who is new to the field and who has not had time to read the thousands of paper reporting measurable abnormalities in ME/CFS may get the impression that: (1) Biomedical issues are irrelevant in ME/CFS and that (2) CBT and GET actually make the core symptoms of people with ME/CFS better. A close read of the literature reveals that none of the core symptoms of ME/CFS improve with CBT or GET. The recommendation for GET stems from the often quoted but unproven assumption that deconditioning causes or exacerbates ME/CFS. In fact this assumption has been disproven (Bazelmans et al 2001; Harvey et al 2008) and cannot therefore be used as a basis for treatment. Informed consent is an ethical requisite in the practice of medicine. Informed consent requires that patients embarking on any therapy be told the potential benefits and risks of the therapy being recommended. Meeting this legal standard in ME/CFS requires that patients be told about the potential benefits and risks of CBT/GET. If patients are being coerced to believe what is not true, psychological trauma can result. If patients are pushed to increase activity beyond their capabilities, exacerbation of symptoms can be expected. The NICE Guidelines are biased towards a particular model of CBT/GET that is widely viewed as ineffective and potentially unethical” (Dr Eleanor Stein, Consultant Psychiatrist, Calgary, Alberta, Canada, 12th August 2008)

· “(Graded exercise therapy) is not therapy – it is simply the enforcement of an opinion rather than a treatment based upon any scientific examination of a patient’s pathology and treatment of that pathology. I believe that those who developed (the) graded exercise programme as a valid treatment of ME have already been soundly criticised to the Courts. I also believe scientific evidence that such a programme is against the best interests of ME patients has already been presented. The benefit of such a programme is to the interests of the insurance industry and not the patient. Graded exercise programmes may be significantly dangerous to many of these ME patients” (Dr Byron Hyde, Clinician specialising in ME, having examined over 3,000 patients between 1984 – 2008; Ottawa, Canada; 15th August 2008)

· “(The GDG) produced a Guideline that recommends CBT and GET as the prime treatment yet there is in fact published evidence of contraindication / potential harm with GET. This has been published by independent researchers (e.g. Peckerman et al). The NICE GDG claims that CBT/GET are supported by significant research. In fact the GDG relied almost exclusively on specious reports which are unproven” (Dr Derek Enlander, Virologist specialising in ME/CFS; formerly Assistant Professor at Columbia University and Associate Director of Nuclear Medicine at New York University; Physician-in-Waiting to the UK Royal Family and to members of HM Government when they visit New York; 18th August 2008)

· “I regard the continuing aura of disbelief surrounding the illness and mainly emanating from the psychiatrists as detrimental to both medical progress and the interests of sufferers” (Dr Nigel Speight, Consultant Paediatrician specialising in ME/CFS; 20th August 2008)

· “It is with regret that I note that the NICE Guidelines do not take into account recent developments in the management of ME. They lean towards a psychological and psychiatric basis, when it is now recognised that there are a large number of medical problems associated with ME. Recent studies on genetics, the central nervous system, muscle function and persistent infections have shown that there is a great deal of medical information available with regard to the management of ME” (Dr Terry Daymond, Consultant Rheumatologist and recently Clinical Champion for ME for the North-East; 22nd August 2008)

· “Research from the ‘organic school’ identified many pathophysiological abnormalities in patients with ME/CFS resulting from dysfunction in a number of vital control systems of the body such as the central nervous system, the autonomic nervous system, the endocrinological system and the immune system. The attitude of the ‘psycho-social’ school continues to be to largely ignore this research. It seems they can only maintain their hypothesis by discouraging the search for an organic basis and by denying the published evidence, which they are certainly doing. This unseemly battle of ideas has been settled politically by proclamation and manipulation, not by science, and not by fair and open means. CBT and GET appear to be based on the rationale that patients with CFS/ME have ‘faulty’ belief systems concerning the ‘dangers’ of activity, and that these aberrant beliefs are significant perpetuating factors. If CBT to ‘correct’ these ‘false’ beliefs can be combined with a graded exercise programme to re-condition these patients, it is virtually promised that a significant proportion of them will improve both their attitude and their physical functioning, and thus cure their illness. Using CBT, patients are therefore to be challenged regarding their ‘aberrant’ thoughts and expectations of relapse that the ‘psycho-social school’ psychiatrists believe affect symptom improvement and outcomes. Cognitions concerning fatigue-related conditions are to be addressed; these include any alleged ‘over-vigilance to symptoms’ and reassurance-seeking behaviours, and are to be dealt with using re-focusing and distraction techniques. It is when a therapy such as CBT begins to interfere with the natural warning systems, of which both pain and fatigue are a part, that the increased risks arise. In particular, musculo-skeletal pain and fatigue have essential function in modulating activity when the body is in a state of disease as in ME/CFS. NICE, however, recommends over-riding this essential safety-net, thus the risk of serious harm is increased in this situation of simultaneous activity and symptoms denial. This will become a more serious risk in patients with more severe ME/CFS. The Guideline does not indicate how the clinician can tell whether patients’ beliefs concerning their symptoms are aberrant and/or when the symptoms accurately point to the underlying state of the disease process” (Dr Bruce Carruthers, Consultant Physician, Vancouver, Canada, 29th August 2008)

· “There have been only five trials of CBT with a validity score greater than 10, one of which was negative for the intervention; and only three RCTs of GET with a validity score greater than 10. The total number of available trials is small; patient numbers are relatively low; no trial contains a ‘control’ intervention adequate to determine specific efficacy, and their results are relatively modest. In addition, some of the studies (particularly those on GET) have used the Oxford criteria for diagnosis, a rubric which allows selection of patients with chronic fatigue states and which do not necessarily exclude certain psychiatric disorders, raising the question of the applicability of the results of these studies to the many patients with specific biomedical symptoms and signs consistent with myalgic encephalomyelitis. Again, the heterogeneity of the trials, the potential effect of publication or funding bias for which there is some evidence, and professional doubts about the evidence base for some behavioural therapies themselves give grounds for caution as regards the usefulness of (CBT/GET). A commentary in the BMJ (Bolsover 2002) is particularly relevant: ‘Until the limitations of the evidence base for CBT are recognised, there is a risk that psychological treatments in the NHS will be guided by research that is not relevant to actual clinical practice and is less robust than is claimed’. Indeed, a large body of both professional and lay opinion considers that these essentially adjunctive techniques have little more to offer than good medical care alone” (Dr Neil Abbot, Director of Operations, ME Research UK; Hon Research Fellow, Department of Medicine, University of Dundee, 29th August 2008)

· “The overall flavour of the Guideline is to lump together all patients with ‘medically unexplained fatigue’, from relatively mild to profoundly disabling illness and to treat all patients with a standard approach of gradual reconditioning and cognitive behavioural modification. By lumping such a heterogeneous mix of patients…patients with CFS or ME are left with very limited options, and little hope. In addition, this document proscribes immunological and other biologic testing on patients with (ME)CFS in the UK, despite the evidence in the world’s medical literature that such testing produces most of the biomedical evidence of serious pathology in these patients. Equally unfortunate is the GDG’s recommendation for behavioural modification as the single management approach for all ‘medically unexplained fatigue’. This month we participated in the International Conference on Fatigue Science in Okinawa, Japan. Dr Peter White of the UK presented his work using behavioural modification and graded exercise. He reported a recovery rate of about 25%, a figure much higher than seen in US studies in (ME)CFS and, even if possible, simply not hopeful enough to the 75% who fail to recover” (Professors Nancy Klimas and Mary Ann Fletcher, University of Miami; 13th September 2008)

· Attached as an appendix to their Statement was a separate Summary of Current State of Understanding of (ME)CFS), from which the following quotations are taken: “Many of the symptoms of (ME)CFS are inflammatory in nature. There is a considerable literature describing immune activation in (ME)CFS. Overall the evidence has led workers in the field to appreciate that immunologic abnormalities are a characteristic of at least a subset of (ME)CFS and that the pathogenesis is likely to include an immunologic component. Fulcher and White (2000) suggest a role for deconditioning in the development of autonomic dysfunction and overall level of disability in (ME)CFS patients. On the other hand, Friedberg et al (2000) suggest the long duration (ME)CFS subjects are more likely to have symptoms suggestive of chronic immune activation and inflammation. We are currently working with investigators at the Centres for Disease Control and the University of Alberta looking at the mediators of relapse after exercise challenge using gene expression studies, neuroendocrine, immune and autonomic measures”

· “My main concern about the NICE document is that what must be great uncertainty in both costs and particularly in quality of life difference is not allowed for” (Martin Bland, Professor of Health Statistics, University of York, 17th September 2008)

· “The guideline is dominated by positive and largely uncritical recommendations for CBT and GET. However, the guideline plays down the fact that patient experience has consistently reported that significant numbers of people with ME/CFS find these approaches to be either unhelpful or, in the case of GET, makes their condition worse. Some of the hospital-based services are not being physician-led but ‘therapist-led’. In some cases people are now being given little more than a ‘therapist-led’ management assessment followed by an offer of CBT and/or GET. I received some very unhappy patient feedback on this type of service on Saturday 11th October (2008) in Colchester, Essex, where great dissatisfaction was expressed by many members of the audience who attended the ME Association’s ‘Question Time’ meeting” (Dr Charles Shepherd, Medical Adviser, ME Association, 24th October 2008)

· “I am a consultant immunopathologist and before retirement worked at St James’ University Hospital, Leeds. A key area of my professional interest was and remains myalgic encephalomyelitis and I have carried out research into the disorder. For a number of years I ran clinics specifically for patients with ME. In my opinion NICE guidelines overemphasise the usefulness of CBT and GET to the detriment of patients. I have no hesitation in stating that in my opinion, the situation for ME/CFS patients is worse, not better, since the publication of the NICE Guideline” (Dr Layinka Swinburne, Leeds, 22nd October 2008)

· “As my clinical freedoms were progressively eroded, it meant that I was becoming ineffective and indeed possibly dangerous as a practitioner. All that patients could be offered was CBT coupled with GET, which I consider not to be appropriate for many of my patients and in the case of GET potentially damaging for some” (Dr Sarah Myhill, General Practitioner specialising in ME/CFS, Powys; Secretary of the British Society for Ecological Medicine, 10th November 2008).

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
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
>>> Help ME Circle <<<<
>>>> 8 April 2009 <<<<
Editorship : j.van.roijen@chello.nl
mail scanned by Comodo I. Security
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:

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: 

http://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