The Elephant in the Room Series Two: ICD-10 Version for 2006 Volume 3 Alphabetical Index

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Keywords

APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-ICD Harmonization Coordination Group    International Advisory Group    Global Scientific Partnership Coordination Group for Revision of ICD Mental and Behavioural Disorders    ICD Update and Revision Platform    WHO Collaborating Centre    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS    MUS

 

The Elephant in the Room Series Two:

ICD-10, 10th Revision Version for 2006, Volume 3 Alphabetical Index

On 17 June, I received a communication from the Legal Compliance Officer for the Institute of Psychiatry, King’s College London, in which I was advised:

“Dr Sykes’ original report, which was submitted to Action for ME and the Hugh and Ruby Sykes Charitable Trust, contained an inaccuracy, as has been previously discussed (since Chronic Fatigue Syndrome [CFS] is not listed in the main list of neurological disorders in Vol. I of ICD-10, the original report stated, wrongly, that there was no mention of CFS in ICD-10. In fact there is a mention of CFS in Vol.3, the Index).”

“…This inaccuracy was brought to the attention of Action for ME and the Hugh and Ruby Sykes Charitable Trust. The summary report (sent to you on 2 June) corrects the inaccuracy, and has been communicated to them. Dr Sykes believes that this inaccuracy makes no substantial difference to the conclusions of the report.”

This statement from Legal Compliance confirms that the unofficial CISSD Project was initiated, funded, administered and supported by Action for M.E. and co-ordinated by Dr Richard Sykes on the premise that there was no mention of Chronic Fatigue Syndrome in ICD-10.

A copy of ICD-10 Volume 3 Alphabetical Index, to which the Institute of Psychiatry’s Legal Compliance Officer refers, can be accessed, via Scribd at:

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

ICD-10

International Statistical Classification of Diseases and Related Health Problems

10th Revision Version for 2006

Volume 3 Alphabetical Index

(770 pages For the entry in question, see page 528, top right hand column)

The following documents are also available from the same page:

ICD 9-CM 2005

ICD-10 2006 Tabular List
http://www.scribd.com/doc/7350990/ICD10-2006-Tabular-List

Standard Coding Guideline ICD-10-TM 2006

ICD-10 [Update 2007]

———————

This statement in the original December 2007 CISSD Project report:

“Despite claims to the contrary, the classification of CFS is still an open issue. CFS and CFS/ME are not mentioned either in the latest edition of ICD (ICD-10), or in the latest edition of DSM (DSM-IV).”

was amended in the “Summary report” provided by Dr Sykes to the ME Association (published 3 June 2009) to read:

“2.2 Somatoform Disorders, the International Classifications and CFS

There are still problems associated with the classification of CFS. It is true that CFS is listed under “syndrome” in Volume III, the Index, of ICD-10 and placed in G93.3, a category of neurological illness. But there remain the problems:

“(1) some psychiatrists and others contest this classification of CFS as a neurological disorder,

(2) “fatigue syndrome” is listed in ICD-10 as F48, a mental disorder – which creates the apparent anomaly that “fatigue syndrome” is a mental disorder, but “chronic fatigue syndrome” is a neurological disorder, and

(3) the classification of CFS as a neurological disorder does not seem to be fully integrated into ICD-10.

As far as I have discovered this seems to be the only reference to CFS in all the relevant ICD -10 volumes. For example, CFS is not mentioned in main Volume 1, the Tabular List, of ICD-10 – where one would expect it to be – nor is it included in the current (2007) online version of ICD-10.

It is also true that the WHO gave permission in 2004 for the UK adaptation of the WHO primary care management and diagnostic guidelines on mental health, which in this edition expanded to include some common neurological conditions. This edition of the good practice diagnostic and management guidelines follows the ICD-10 Index code for CFS as G93. It remains to be seen, however, whether this practice will be followed in ICD-11.”

The “Summary report” on the CISSD Project, published by the ME Association on 3 June, can be read here:

http://meagenda.wordpress.com/2009/06/03/cissd-project-report-from-dr-richard-sykes/

———————

The “Summary report” drew upon content in the December 2007 report provided to Action for M.E. at the end of the Project’s life. But some sections are worded differently and Appendix B in the December 2007 report does not appear at all in the document that has been published by the ME Association.

The full December 2007 report for Action for M.E. can be read here:

http://meagenda.wordpress.com/2009/06/08/the-redacted-bits-sykes-cissd-report-for-the-mea/

The CISSD Project and CFS/ME, Report on the CISSD Project (Conceptual Issues in Somatoform and Similar Disorders) for Action for ME Richard Sykes
December 2007

———————

I include some extracts, below, including the missing Appendix B, followed by a brief commentary:

[...]

CFS and the International Classifications

[...]

Despite claims to the contrary, the classification of CFS is still an open issue. CFS and CFS/ME* are not mentioned either in the latest edition of ICD (ICD-10), or in the latest edition of DSM (DSM-IV).**

[*Ed: The WHO does not use the composite term "CFS/ME" and describes NICE's use of this term as "unfortunate". **This statement was revised in the "Summary report" published by the ME Association, as set out, above.]

[...]

It is true that in 2004 permission was given by the WHO for the UK to adapt the WHO classification for the purposes of Primary Care in the UK and that on this basis a classification has been produced for use in the UK which lists CFS and CFS/ME as a neurological disorder. While many consider that this is a step in the right direction, this classification is a UK adaptation only and has not been formally adopted by the WHO. It has no validity in other countries. No formal decision has yet been made by the WHO and it is still an open question what the official WHO classification of CFS and CFS/ME will be in the next revision. (See also App B.)

[Ed: This statement was also revised in the "Summary report" published by the ME Association, see above.]

[...]

In addition to coordinating the CISSD project and taking part in the CISSD workshops, my own activities have included travel to meet the main international figures involved in these issues and the organization of a separate workshop on CISSD topics as part of an international conference in Croatia. In addition I gave two presentations at that workshop and further presentations at two other international conferences (in Germany and The Netherlands) and at professional conferences in London*, Oxford and Leeds (See App C). I have also produced the co-ordinator’s report on the project.

[Ed: *Melvin Ramsay Society Meeting, April 2007, attended by Dr Charles Shepherd, ME Association, who also gave a presentation. The presentation given by Dr Richard Sykes: "Conceptual Issues in the Classification of ME/CFS" and the Meeting Agenda were advertised by the ME Association on their website.]

[...]

While it is not a foregone conclusion that in the next international revisions CFS will be classified as a “general medical condition” or physical disorder and not as a mental disorder, the CISSD project will increased the likelihood that CFS and CFS/ME* will be so classified.

[*Ed: WHO ICD does not use the composite term CFS/ME.]

[...]

[Ed: Notes 1-3 do appear in the June '09 "Summary report" published by the ME Association but are included here, for context.]

Notes

Note 1, I am most appreciative of the help given by Professor John Bradfield, former Professor of Histopathology at Bristol University, in compiling this report. In addition, he has made numerous other most valuable contributions as Project Advisor to the CISSD Project.

Note 2. There are, most confusingly, a few exceptions to this rule in ICD-10. For example, Irritable Bowel Syndrome is classified both as a disorder of the Digestive System (K 58) and as a Somatoform Autonomic Function Disorder (F45.32) – a mental disorder.

Note 3. The situation is more complex in ICD-10, since ICD-10 includes, besides Somatoform Disorders, a further possible pigeonhole for CFS/ME. This is the subcategory of “Neurasthenia” which ICD-10 includes in addition to the category of Somatoform Disorders. While the project did not specifically address the problems associated with Neurasthenia, there are some strong objections to the subcategory of Neurasthenia and it is possible that this subcategory will be omitted in the next revision of ICD-10.

CFS and CFS/ME are not listed in ICD-10* and of the 4 related conditions that are listed (post-viral fatigue syndrome, benign myalgic encephalomyelitis, neurasthenia, fatigue syndrome), 2 are listed as neurological disorders and 2 as mental disorders. On the one hand “post-viral fatigue syndrome” is classified as a neurological disorder with the code number G33.3 [sic]. In CDDG this is said to include “benign myalgic encephalomyelitis”. Although the adjective  “benign” has long since been dropped and although most users of the term ME now say that ME should stand for Myalgic Encephalopathy, rather than Myalgic Encephalomyelitis** (since there is no evidence of encephalomyelitis), this would appear to be a good reason for saying that ME is implicitly classified as a neurological disorder. (Since G33.4 [sic] is the code for encephalopathy, it would seem that this code rather than G33.3 [sic] is now the more appropriate code for ME.***)

[...]

Appendix B How does the WHO currently classify CFS/ME?

“CFS/ME” (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis or Myalgic Encephalopathy) is the composite name used by the UK Department of Health and other organizations to refer to a condition that has been named and defined in a variety of ways. Generally speaking, “CFS” tends to be preferred by health professionals, “ME” by patients.

Background

The main WHO (World Health Organization) classification of diseases and disorders is the International Statistical Classification of Diseases and related Health Problems (ICD). This classification is a classification of all disorders and related health problems and contains one chapter, chapter V, which is concerned solely with “mental and behavioural disorders”. The classification is revised periodically: the latest revision is the tenth revision (ICD-10) which was published in 3 volumes; Vol P A Tabular List in 1992, Vol 2: Instruction Manual in 1993 and Vol 3: Index in 1994.

Also produced from 1992 onwards was a separate series of volumes that dealt solely with mental and behavioural disorders, the subject of chapter V of ICD. Although the glossary provided by chapter V of ICD was considered adequate for use by coders or clerical workers, it was not recommended for use by health professionals. The first and central volume of the additional series was The ICD-10 Classification of Mental and Behavioural Disorders. Clinical descriptions and diagnostic guidelines (CDDG), produced in 1992, which was intended for general clinical, educational and service use. (Other volumes in this series included The ICD-10 Classification of Mental and Behavioural Disorders. Diagnostic Criteria for Research (DCR), and Diagnostic and Management Guidelines for Mental Disorders in Primary Care; ICD-10 Chapter V Primary Care Version.)

Is CFS/ME classified as a neurological or as a mental disorder in ICD-10?

[Ed: *This statement has been corrected in the "Summary report" published by the ME Association.

**Dr Sykes provides no supporting evidence for this statement.

***Dr Sykes provides no medical evidence to support his proposal that it would be more appropriate for "Myalgic Encephalopathy" to be classified at the same coding as "Encephalopathy" (G93.4), rather than at G93.3, where "Benign myalgic encephalomyelitis" has been coded for many years.]

On the other hand “neurasthenia” is classified as a neurotic disorder with the code number F48.0 and CDDG states that this includes “fatigue syndrome”. So it could be argued that CFS should be classified as a neurotic, and hence, a mental disorder. A case could also be made for coding some cases of CFS as F45 Somatoform Disorders, either as F45.1, the code for Undifferentiated Somatoform Disorder or as F45:3, the code for Somatoform Autonomic Dysfunction, or as F45.9, the code for Somatoform Disorder, Unspecified. All these are codes for mental disorders.

This presents a problem for CFS/ME. If ME is stressed, then it could be argued that CFS/ME should be classified as a physical disorder, since benign myalgic encephalomyelitis is classified as a neurological disorder. On the other hand, if Chronic Fatigue Syndrome is stressed then it could be argued that CFS/ME should be classified as a mental disorder, since fatigue syndrome is classified as a neurotic disorder.

Developments since 1992

In 2004 the WHO Guide to Mental and Neurological Health in Primary Care, Second Edition, was published by the Royal Society of Medicine Press. This was described on the cover and in the frontispiece as “Adapted for the UK, with permission, from Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version”.

In this volume the main term used is Chronic Fatigue Syndrome (CFS), which is said to be also referred to as ME (Myalgic Encephalomyelitis or Myalgic Encephalopathy) or as CFS/ME, and this is coded as G93.3. G.93.3 is the code for post-viral fatigue syndrome, a neurological disorder.

So does this settle the matter? Is CFS/ME now officially classified by the WHO as a neurological, not as a mental disorder?

Unfortunately the matter is not quite so simple, for a number of reasons. In the first place the 2004 publication is described as “adapted for the UK, with permission”. This means that it is not applicable in countries outside the UK, in Germany or France etc.. It does not have international applicability. Secondly, even in the UK it applies only to Primary Care (GP level). It does not claim to be applicable to Secondary Care (hospital level).

Thirdly, even in the UK it does not claim to be an official WHO classification. It is an initiative of the UK WHO Collaborating Centre, one of many of the Collaborating Centres worldwide, and is backed by the English Department of Health and a number of other organizations and individuals. It is not an authoritative WHO classification but is intended simply to provide helpful recommendations which UK GPs may use or not use as they wish. In the UK a GP may use any of a number of competing classifications. These include the International Classification of Health Problems in Primary Care (ICHPPP), the Read Codes, and a triaxial classification. They can also choose not to use a classification system at all.

Summary

“CFS” and “CFS/ME” are not listed in ICD-10 and this leaves room for debate as to how they should be listed. The UK WHO Collaborating Centre, with the support of the Department of Health and other organizations, proposed in 2004 that they should be coded as G33.3 [sic], the code for a neurological disorder. These proposals are undoubtedly encouraging for the ME patients’ organizations, who will hope that this initiative will be confirmed in the next revision of ICD-10, but they are not yet official recommendations by the WHO. There remains confusion and debate about how CFS/ME fits in to the official WHO classification.

A note on DSM-IV.

DSM-IV is the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, produced by the American Psychiatric Association. It has been extensively researched and is in widespread use worldwide.

In DSM-IV there is equally no mention of CFS, but neurasthenia is mentioned and is subsumed under Undifferentiated Somatoform Disorder, one of the Somatoform  Disorders. There is an extensive overlap between the symptoms of neurasthenia and of CFS and consequently some argue that this is where CFS should be placed. Against this it could be argued that CFS or ME or CFS/ME should be classified as G93.3 in ICD and hence should not have a place in a manual of mental disorders at all.

So for DSM-IV, too, there is the same uncertainty as to how CFS/ME should be classified.

[Extracts end]

Since the WHO doesn’t use and doesn’t like the composite term “CFS/ME” – it’s all rather muddled, isn’t it? And when presenting to the Ramsay Society meeting, in 2007, around the work of the CISSD Project, Dr Sykes used “ME/CFS”.

Read the review paper published by the CISSD Project leads in July 2007 (Psychosomatics) and you would not know that ME existed as a term in ICD; there is not a single mention of “CFS/ME” or “ME/CFS” or of existing ME and PVFS codings, because ICD and ICD codings are not mentioned at all, and “chronic fatigue syndrome” is only mentioned in passing as one of the so-called “Functional Somatic Syndromes”.

But the Project was described by Action for M.E. in 2006 as the “WHO Somatisation Project” and that “This grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its re-catergorisation as a physical illness”.

What did Action for M.E. understand by that statement? What does it understand, now?

Dr Sykes has published no commentary on the most recent proposals of the DSM-V Somatic Symptoms Disorders Work Group.

In addition to the misconception around Volume 3, there are also other errors in the December 2007 report to Action for M.E. There are several instances in Appendix B where “G33.3″ and “G33.4″ have been used where this should have been “G93.3″ and (presumably) “G93.4″ (the classification code for Encephalopathy).

When Dr Sykes provides the Institute of Psychiatry’s Legal Compliance Officer with an authorised version of the text of the December 2007 report in order to  fulfil my outstanding request for information under the FOI Act, it is hoped that Dr Sykes will have acted on my suggestion that the document is accompanied by a Erratum Notice which addresses the errors and misconceptions in his original report.

One of the recommendations of the CISSD Project workgroup was support for the APA and WHO’s commitment “…to facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria” with the objective that “the WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are  identical for ICD and DSM.”

It is worth noting that alliances of rare diseases patient organisations are already actively engaged in dialogue with  the ICD Rare Diseases Topic Advisory Group as it works on its proposals towards ICD-11.

But we have two chapters of ICD-11 to monitor – Chapter VI (G93.3 codes) and Chapter V: Mental and Behavioural Disorders (F45-F48 codes).

The chapter on ICD Mental and Behavioural Disorders is to be harmonized with DSM-V.

The target date for the release of DSM-V is 2012 and some field trials are expected to start this summer.

How many of our UK and international ME advocacy groups, patient organisations,  ME clinicians and researchers are currently engaged in dialogue with the APA and the WHO over the revisions of these complex and enmeshed classification systems?

———————

For the most recent update on the progress of the DSM-V Somatic Symptom Disorders Work Group:
http://tinyurl.com/DSMSDDWGApril09

For a more expansive report on the progress of this Work Group:

The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report  Journal of Psychosomatic Research, Editorial: June 2009
Joel Dimsdale and Francis Creed on behalf of the DSM Workgroup on Somatic Symptom Disorders
http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

(See section: “Psychological factor affecting general medical condition”)

For The Status of the CISSD Project unscrambled:
http://meagenda.wordpress.com/2009/06/10/the-elephant-in-the-room-series-two-status-of-the-cissd-project-unscrambled /

For WHO statement on the use of the composite term “CFS/ME” see paragraph eight:
ME/CFS: TERMINOLOGY, Margaret Williams, 27 April 2009
http://www.meactionuk.org.uk/ME_CFS_TERMINOLOGY.htm

MEA: Summary Board of Trustees meeting 15 and 16 June 2008

Summary of ME Association Board of Trustees meetings held on Mon 15 June and Tues 16 June, 2009

http://www.meassociation.org.uk/content/view/893/161/

This is a summary of key points to emerge from two meetings of The ME Association Board of Trustees. These meetings took place at our Head Office in Buckingham on Monday afternoon 15 June 2009 and on Tuesday morning 16 June 2009. Informal discussions also took place on a number of issues on the Monday evening.

After the Board meeting on Tuesday the charity’s AGM was held in the afternoon. Results of trustee elections were also announced. A brief summary of the AGM, along with the election results, and a short post-AGM Board meeting, is included at the end of this summary.

Please note that this is a summary of the Board meetings and AGM – 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
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 current financial situation. Trustees then discussed the monthly accounts for the period up to April 2009. All of our main sources of income are holding steady and in some cases – ie donations and fundraising, literature sales, membership subscriptions – are slightly or significantly up on the same period last year. This is reassuring news given the difficult economic climate and the effect that this is having on the charity sector in general. Income for general funds is continuing to remain roughly in line with expenditure, despite the fall in interest rates on funds held. Trustees made some minor changes to banking arrangements in order to maximise interest rates on the various bank balances.

ME in Westminster, 5 May, 6 May, 13 May 2009

Source: UK House of Lords
Date: May 5, 2009
URL:  http://www.publications.parliament.uk/pa/ld200809/ldhansrd/text/90505w0003.htm 
Ref:  http://www.me-net.combidom.com/meweb/web1.4.htm#westminster 

[Written Questions]

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

The Countess of Mar

To ask Her Majesty’s Government whether the National Institute for Health and Clinical Excellence guidelines on chronic fatigue syndrome/myalgic encephalomyelitis are to be reviewed; and, if so, when. [HL3075]

The Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham)

The National Institute for Health and Clinical Excellence will consider in August 2010 whether there is a need to review its clinical guideline on chronic fatigue syndrome/myalgic encephalomyelitis.

—————————-

Source: UK House of Lords
Date: May 6, 2009
URL:  http://www.publications.parliament.uk/pa/ld200809/ldhansrd/text/90506w0001.htm
Ref:  http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Questions]

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

The Countess of Mar

To ask Her Majesty’s Government whether the Clinical Network Collaborative Consortium for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is fulfilling the purposes for which it was set up following the Chief Medical Officer’s 2002 report on CFS/ME; whether regional specialist services for patients with CFS/ME are appropriately funded and are operating in all English regions; and whether there are sufficient trained specialist practitioners to meet the needs of patients in each region. [HL3076]

The Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham)

We have made no assessment on whether the Clinical Network Collaborative Consortium is fulfilling the purposes for which it was set up.

It is the responsibility of strategic health authorities to ensure that services are available, and sufficiently funded and staffed with appropriately trained staff, to meet the health and social care needs of those of their local population diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis.

—————————-

Source: UK House of Commons
Date: May 13, 2009
URL: http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090513/debtext/90513-0024.htm
Ref:  http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Debates]

Cervical Cancer Vaccination

(…)

Mr. Crispin Blunt (Reigate)

I only became concerned about the possible side effects of the Cervarix vaccine-and, I confess, aware of the vaccine itself when the experience of one of my constituents, Rebecca Ramagge, was brought to my attention. Rebecca’s mother came to see me at my surgery 12 days ago and told me how her daughter had fallen ill shortly after her first injection with Cervarix. Over the full course of the injections, she has gone from being a healthy sports-loving teenager who was a high achiever at school and a tournament-level tennis player, to being crippled by chronic fatigue syndrome, unable to attend school regularly and in need of help with basic tasks such as walking and eating because of the exhaustion and the muscular and joint pain from which she is now suffering.

(…)

Rebecca’s case is not an isolated one. Similar stories of severe  reactions resulting in partial paralysis, seizures and chronic fatigue have been well featured in the national press. The vaccine support group JABS-Justice Awareness and Basic Support-has nine girls registered as suffering from severe adverse reactions to Cervarix. A solicitor who  specialises in representing vaccine victims is representing six girls who are suing the makers of the vaccine, GlaxoSmithKline, under the Consumer Protection Act 1987. Yesterday however, the Minister gave me a parliamentary answer that included the following: To date almost one million doses of Cervarix have been given in the UK and there is no evidence to suggest that Cervarix vaccine has caused chronic fatigue syndrome, paralytic disorders or any other serious or long-term side effects.” [Official Report, 12 May 2009; Vol. 492, c. 706W.]

(…)

The Minister of State, Department of Health (Dawn Primarolo)

In the remaining 10 per cent of cases let us remember that we are talking about 0.00017 per cent. of the total vaccines there is good reason to think that the reported symptoms were associated with an underlying condition or illness that the person was suffering from at the time they had their vaccination. That, in fact, appears to be the most likely interpretation for the cases reported in the media recently, including the cases in the Daily Express and Daily Mail of the young girls who were reported as suffering from partial paralysis, chronic fatigue syndrome and fits since having their vaccination. The MHRA is fully aware of those cases, several of which were reported via the yellow card scheme, and is investigating them.

As we vaccinated such a large cohort of young people, it was inevitable that a few cases would come forward where other conditions were reported as suspected side-effects even if the vaccine played no part. Indeed, the MHRA’s statistical analysis of paralytic disorders and chronic fatigue syndrome shows that the reported frequency of such cases is no more than, or should I say the same as, would have been expected among a similar cohort of unvaccinated teenagers. In addition, the Government’s independent advisory body, the Commission on Human Medicines, looked into the reports not just in the UK, but across the world and concluded that there are no new safety issues associated with the vaccine.

(c) 2009 Parliamentary copyright

Dr Ian Gibson, former MP for Norwich North, former Secretary to the APPG on ME has been a champion of the mass vaccination of young girls with the cervical cancer vaccine. 

In its 2006 report, the “Gibson Inquiry” (which had been chaired by Dr Gibson) reported:

“Vaccination is often blamed for unexplained outbreaks of illness and regularly appears in the media being accused of such. The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be a cause.”

APPG on ME Inquiry into NHS services: Patient Questionnaire

The Patient Questionnaire for the APPG on ME Inquiry into services for people with ME has now been posted on the APPG on ME website.  Please note that one of the panel members for the Inquiry, Dr Ian Gibson MP, will presumably have withdrawn from involvement in the Inquiry and also resigned as Secretary to the APPG on ME having recently stood down as MP for Norwich North.

Please note that ME agenda does not support the undertaking of this Inquiry due to its being under resourced and due to issues around its Terms of Reference.

The questionnaire can be downloaded in Word and PDF format from the APPG on ME website.  All enquiries in connection with the Inquiry, itself, or with the Questionnaires to turnerd@parliament.uk .  ME agenda cannot enter into correspondence around any aspect of this Inquiry.  If you don’t understand the instructions please contact Dr Turner.

http://www.appgme.org.uk /

PATIENT QUESTIONNAIRE

APPG INQUIRY INTO NHS SERVICES FOR PEOPLE WITH M.E. / CFS

Please respond to each of the following questions. Answers should be in the format of a self-contained memorandum and the entire response should be no more than 3,000 words.

Respondents typing their submission may answer by filling in this questionnaire and including any detailed answers immediately after each question. If the response is hand-written, each question should be clearly re-stated in the response, with answers immediately following each particular question.

The document must include a very brief executive summary about yourself of approximately 200-300 words. Once submitted, your submission becomes the property of the APPG. The APPG will expect to publish the written evidence it receives. Please notify us if you wish your statement to be anonymous.

Please ensure that your questionnaire is submitted by the 20th of July 2009 to either turnerd@parliament.uk  or

Dr Desmond Turner MP
House of Commons
London
SW1A OAA

(Please go to the APPG on ME website at http://www.appgme.org.uk / for the Word and PDF questionnaires)

ME/CFS: Classification Issues by Margaret Williams, 3 May 2009

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

ME/CFS: Classification Issues

by Margaret Williams  |  3 May 2009

Deborah Waroff expresses concern (Co-Cure: ACT: 3rd May 2009) about the serious danger to the World Health Organisation classification of ME/CFS as a neurological disorder posed by the Wessely School. She bases her concern on a recent paper in Psychological Medicine co-authored by psychiatrist Professor Peter White which states: “These data also suggest that fatigue syndromes are heterogeneous, and that CFS/ME and PVFS should be considered as separate conditions, with CFS/ME having more in common with IBS than PVFS does. This requires revision of the ICD-10 taxonomy, which classifies PVFS with ME” (emphasis added). In apparent support for their desired removal of ME/CFS (which they refer to as “CFS/ME”) from the neurological section and its reclassification as a somatisation (behavioural) disorder, the authors assert: “A strong relationship between CFS and psychiatric, particularly mood, disorders is a constant finding”

See: Risk markers for both chronic fatigue and irritable bowel syndromes: a prospective case-control study in primary care. WT Hamilton, AM Gallagher, JM Thomas and PD White.

http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=5446224 

It should be noted that the lead author, Dr William T Hamilton, was a member of the Guideline Development Group (GDG) which drew up the NICE Guideline on “CFS/ME” (CG53) that was published on 22nd August 2007 and which recommended behavioural modification as the primary – indeed the only –management regime for patients with ME/CFS.

In contravention of NICE’s own taxonomy, the Guideline erroneously lumped together two completely different disorders (ME/CFS and neurasthenia/chronic fatigue). GDG member Dr Fred Nye wrote in the Journal of Infection: “We had been advised to adopt an inclusive approach, but this was challenged by the patient representatives who preferred a narrow case definition. A wide definition risks ‘medicalising’ people who are merely tired”. This quotation from Dr Nye shows that, under the chairmanship of Professor Richard Baker (see below), the GDG intentionally amalgamated numerous states of chronic “fatigue”, leading to a meaningless and worthless Guideline for sufferers of ME/CFS and instead concentrating on people who are merely tired (to use Dr Nye’s words) at the expense of the patients who are seriously ill with a chronic neuroimmune disorder.

The Wessely School’s view (which underpinned the Guideline’s management recommendations) is set out in Wessely’s own paper in The Lancet (Functional somatic syndromes: one or many? Lancet 1999:354:936-939), namely that “CFS has been described as part of a broader condition that includes a range of disorders including fibromyalgia, irritable bowel syndrome etc”, about which Wessely’s Chronic Fatigue Service at King’s College Hospital, London, commented in the Stakeholders’ comments on the draft Guideline that such a view “will be well received by many doctors, since it reflects their views and emphasises ways in which we can increase our knowledge of one ‘syndrome’ ”.

This is the heart of the matter, because what NICE refers to as “CFS/ME” is not one functional somatic syndrome but a conglomeration of numerous states of chronic fatigue into which the distinct neurological disorder ME has been erroneously subsumed by Wessely School psychiatrists upon whose work (acknowledged to be methodologically flawed) the GDG relied so heavily.

There has long been international concern about the Wessely School’s determination to ignore the biomedical science and to categorise ME/CFS as a behavioural disorder, and the increasing influence of the Wessely School on the US Centres for Disease Control (CDC) (ME)CFS research programme seems to have caused international experts to speak out about their concerns.

For example, at the CDC (ME)CFS Stakeholders’ meeting held on 27th April 2009 in Atlanta, Dr Staci Stevens advised the CDC that: “Without defining subsets clearly, it will preclude you from meeting your goals. You won’t understand aetiology and you won’t understand clinical management”. Dr Lily Chu also emphasised the need for subgrouping: “Selecting study subjects by using study criteria that have been diluted, such that (they) no longer resemble the illness, will generate erroneous and confusing results”.

The need not to combine heterogeneous populations (as the NICE Guideline does) was set out by world-renowned immunologists Professors Nancy Klimas and Mary Ann Fletcher from the University of Miami in their exceptional (fully referenced) testimony dated 13th September 2008 for the Court in support of the Judicial Review. They said (amongst five pages of evidence): “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, and setting forth very limited diagnostic and treatment recommendations, patients with CFS or ME are left with very limited options, and little hope”. Professors Klimas and Fletcher continued: “In our opinion, combining all states of unexplained fatigue narrowly focuses upon a single, poorly defined symptom (fatigue) and promotes misunderstanding of CFS”. The Statement continued: “(The Guideline) proscribes immunological and other biologic testing on patients with 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 CFS, and even if possible, simply not hopeful enough to the 75% who fail to recover. The lumping of a heterogeneous population with no biological testing funded hampered this study”. The Statement continued: “In summary, we support your challenge to the GDG Guideline. We hope any future revision acknowledges the importance of immune, autonomic and neuroendocrine influences in this illness”. The Statement concluded: “We would also ask that the Court consider the far-reaching impact of a Guideline that fails to look forward or even at the present when describing the literature and the causes of this disabling illness”.

Along with approximately 60% of the Claimants’ evidence, this testimony was entirely disregarded at the High Court Hearing.

It is clear from Professor Baker’s Witness Statement (see below) and from Dr Nye’s letter in the Journal of Infection that the GDG’s intention from the outset was that the Guideline should cover a whole range of patients suffering from “medically unexplained fatigue”, which is classified in the ICD-10 at F48.0 under Mental and Behavioural Disorders, a section from which ME is expressly excluded by the WHO, yet the Guideline specifically claims to include ME. The GDG thus failed in its remit to produce an aid to diagnosis for ME/CFS. As Chairman, Professor Baker must bear responsibility for this failure.

Moreover, under the chairmanship of Professor Baker, the GDG specifically refused to accept the WHO classification of ME/CFS as a neurological disorder.

On 24th March 2003 Andre L’Hours from the WHO confirmed that it is mandatory for all member states (which include the UK) to use the ICD-10 codes, and NICE’s own Communications Progress Report 8 of September 2002 also stipulates that it is mandatory for NICE to use the ICD-10 codes. This evidence was provided for the GDG and the High Court but was unheeded.

The alleged reason for the GDG’s refusal to accept the ICD-10 classification was proffered in the First Witness Statement (he provided two Witness Statements) of Professor Richard Baker on behalf of NICE, whose First Witness Statement was discussed at length in Court (whereby it entered the public domain and can therefore be quoted publicly):

“The claimants argue that the GDG should have recognised the classification given in ICD-10, which lists ME under Section G ‘Diseases of the Nervous System’. The GDG acknowledged this classification but considered it best not to adopt it”. Quoting from page 68 of the Full Guideline, Professor Baker’s First Witness Statement continued: “ ‘The World Health Organisation (WHO) classifies CFS/ME as a neurological illness (G93.3), and some members of the GDG felt that, until research further identifies its aetiology and pathogenesis, the guideline should recognise this classification. Others felt that to do so did not reflect the nature of the illness and risked restricting research into the causes, mechanisms and future treatments for CFS/ME’. As indicated in the extract above, there were two reasons why the GDG did not accept the ICD-10 classification. Firstly, there was not enough agreement that it could be said with sufficient certainty that CFS/ME was a neurological condition. Secondly, given the uncertainty surrounding how the condition is caused and why it progresses in the way that it does, the GDG did not want the Guideline to have the unintended consequence of steering future research down a particular course. The concern was that had the Guideline adopted the ICD-10 classification, that would have made it harder to obtain funding and approval for research into non-neurological factors causing and perpetuating CFS/ME (and) such a consequence would have been highly undesirable” (emphasis added).

Professor Baker’s First Witness Statement continued: “In addition to code G93.3 for ME, ICD-10 includes a code F48 – neurasthenia – which describes symptoms typical of CFS/ME and is referred to elsewhere in ICD-10 as covering ‘fatigue syndrome’. Furthermore, the classification G93.3 refers only to ME, and not to CFS”.

Thus Professor Baker confirmed that the management recommendations in the Guideline are based on the feelings of some members of the GDG, thereby ignoring the WHO taxonomy and the concerns of those GDG members who believed that the ICD-10 classification should have been adopted in the Guideline, as well as ignoring the pressing needs of patients with ME/CFS to receive a correct diagnosis and appropriate support.

Given that the WHO has classified ME as a neurological disorder for 40 years, there is abundant international agreement that it can be said with certainty that ME is a neurological condition. There may not have been sufficient agreement amongst GDG members that ME/CFS is a neurological condition, but there is absolute certainty that ME/CFS is a WHO classified neurological disorder.

The NICE Guideline claims to represent the best available evidence. The best available evidence is that since 1969, ME has been an internationally classified neurological disorder (WHO ICD-10: G93.3). The best available evidence is that since 2003, ME has been classified as a neurological disorder in the UK Read Codes used by GPs (F286), and that ME is included in the UK National Service Framework for long-term neurological conditions. The best available evidence is that the UK Department of Health accepts that ME is a neurological disorder, and that the UK Chief Medical Officer accepts that ME is a neurological disorder with long-term effects on health alongside other illnesses such as multiple sclerosis and motor neurone disease. The best available evidence is that there are now over 5,000 peer-reviewed scientific papers demonstrating that ME/CFS is not a behavioural disorder.

As the UK is a member of the WHO World Health Assembly, the GDG does not have the autonomy to reject the formal WHO classification of ME/CFS as a neurological disorder and, as chairman, Professor Baker could have been expected to direct his GDG appropriately. It seems that, influenced by the Wessely School, he failed to do so.

By the wording of that paragraph in his First Witness Statement (ie. “non-neurological factors causing and perpetuating CFS/ME” ), Professor Baker seems to imply that he knows that non-neurological factors (ie. behavioural factors) cause and perpetuate “CFS/ME”, but there is no evidence whatever to substantiate his professed knowledge on this issue. There is however, an extensive Wessely School literature asserting that they do, which is based not on scientific evidence but on Wessely’s own somatisation hypothesis (adopted by the GDG and whose previously published papers already supported such a notion) that has been stringently challenged by international ME/CFS researchers in the peer-reviewed literature.

NICE was even admonished by the House of Commons Health Select Committee which, in its First Report of Session 2007-08 (Volume 1: 29), stipulated: “NICE should not recommend interventions when the evidence is weak”.

NICE itself conceded that in the case of “CFS/ME”, the evidence was weak. By letter dated 26th January 2006, a NICE Communications Executive (Sarita Tamber) confirmed: “With regard to the CFS/ME guideline, because of the lack of evidence it was decided to use formal consensus methods with the GDG. As you are aware, NICE guidelines are based on research evidence but NICE is aware of the lack of evidence on CFS/ME”.

The revelation from Professor Baker seems clear enough: had the GDG adopted the ICD-10 classification, it would have made it harder to obtain funding for research into “non-neurological factors” (ie. “behavioural factors”). In other words, the Wessely School psychiatric gravy-train would have hit the buffers, a gravy-train that has been funded by the State, including the MRC alone to the tune of £3 million since 2002, which is approximately 91% of the MRC’s total grant spent on “CFS/ME”. It seems that the dominant Wessely School GDG members clearly wanted to ensure continued funding for their studies on “behavioural modification” in CFS/ME.

Underpinning it all is the publicly stated intention of the Wessely School that the next revision of the Diagnostic and Statistical Manual (DSM-V) should include “CFS/ME” as a somatoform disorder (a category that they wish to re-configure).

If NICE had accepted the disorder as neurological, it would have thwarted the Wessely School’s objective of eradicating ME and of capturing “CFS/ME” – with their stated intention of eventually dropping the “ME” — as a psychiatric disorder (with advantageous implications for their paymasters in the medical and permanent health insurance industry), so it seems that their supporters on the GDG (including Dr Hamilton, who is Chief Medical Officer of two major medical insurance companies, the Exeter Friendly Society and the Liverpool Victoria and who also is employed by Friends Provident, a fact that he now admits he failed to declare to NICE) did not allow it to happen.

Given that it was as long ago as 28th June 2001 that Andre L’Hours confirmed that the WHO has no plans to remove ME/PVFS/CFS from the section on Disorders of the Brain and transfer it to a psychiatric classification (confirmation of which was again supplied — in writing — by Dr Robert Jakob of the WHO on 5th February 2009 in relation to the forthcoming ICD-11), it seems sinister that the Wessely School continues unrestrained by any vestige of accountability or professional censure in its determination to disregard and over-rule the WHO to the detriment of many thousands of desperately sick patients. If this were to occur with patients suffering from any other organic disorder, be it cancer, multiple sclerosis, lupus or renal failure, a clinician who resolutely refused to accept the abundant evidence of such a disorder and who simply insisted that the patient change their thought processes might face disciplinary proceedings. It is incomprehensible that no such strictures are brought upon the miscreant Wessely School and upon those clinicians who support them.

The Gibson Report of November 2006 called for an inquiry by the appropriate Standards body into the blatant conflicts of interest of certain members of the Wessely School but, like everything else to do with ME/CFS, this call has gone unheeded.

Quite apart from the issue of correct classification, the evidence continues to mount that ME/CFS is essentially a neurological disorder.

For example, a review of the neurological components of ME/CFS is clear. Although this review was published in 2008 (i.e. after the Guideline was published in August 2007), only four of the 47 references cited were not available to the GDG:

“Additional evidence of an underlying neurological disorder requires appropriate neurological evaluation. Available neuroimaging data not only show differences in morphology between patients and controls, but also indicate the brain’s response to mental fatigue. Evidence of abnormal perfusion in the brain has led to research on brain metabolism (which) found a significant hypometabolism in the right mediofrontal cortex and brainstem of patients. In summary, an increasing amount of evidence is becoming available to elucidate the close relationship between (ME/CFS) and the CNS. The focal point of (ME)CFS research should be transferred to the CNS and exploration of the neuromechanism of (ME)CFS”. (“Chronic Fatigue Syndrome and the Central Nervous System”: R Chen et al; Journal of International Medical Research 2008:36:867-874).

Given the significant amount of evidence that ME/CFS is a neuroimmune disorder, and given the fact that NICE is funded by — and responsible to — the Department of Health, it is irrational for NICE to refuse to accept the WHO international classification ICD-10 G93.3 when the Department of Health accepts it. This refusal may indicate the stranglehold exerted by the Wessely School and the medical and permanent health insurance industry upon both NICE and the MRC, of which there is abundant evidence not included here.

In their testimony for the Judicial Review, Professors Klimas and Fletcher pointed out that: “The Guideline affects not only the UK but is widely quoted throughout the EU, and has influenced health care policy in Norway, Sweden, and the Netherlands”.

At the CDC CFS Stakeholders’ meeting on 27th April 2009 in Atlanta, Dr William Reeves (who is on record as saying in his Introduction to the meeting that the CDC has had four CFS programme reviews in the last four years, the most recent being in November last year) said: “Dr Peter White participated. Dr Peter White is a representative of, I think, the only country and Ministry of Health in the world that has developed a comprehensive programme for diagnosing, evaluating, and treating CFS. There may be many comments as to whether it is the best, but it is a national health service, which takes this very seriously. And (they) have tried to implement on a national level something” (with grateful acknowledgement to http://www.cfidsreport.com ).

It is Peter White who is striving to get ME removed from the neurological classification of the ICD and reclassified as a behavioural disorder and who lumps together undefined states of “medically unexplained chronic fatigue” that he believes should be uniformly managed by cognitive restructuring that is intended to convince sufferers that they are not sick, merely that they are just not active enough because of their aberrant illness beliefs.

At the same CDC CFS Stakeholders’ meeting on 27th April 2009, Professor Klimas was clear: she urged the CDC to consider “the role of other chronic persistent re-infection in this disease. You just can’t say that you are not going to look at infectious disease. If there is this much immune activation, there is either a pathogen or an autoimmune disorder” .

The Wessely School (including Peter White), NICE and the UK Courts are not listening.

It seems that, by their consistent denial of the documented pathology and by means of their so-called “cognitive re-structuring techniques”, the Wessely School is assisting the State to undermine sick people’s rational thoughts, feelings and legitimate beliefs about their illness for political, social and economic reasons.

Deborah Waroff is right to be concerned. She is not alone.

Margaret Williams

3 April 2009

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

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

APPG press release: NHS inquiry

Today, Action for M.E. has published the APPG on ME press release launching the APPG on ME inquiry into NHS services for people with ME.  When the Inquiry website has been launched, the URL will be posted here.  Thereafter, readers should refer to the Inquiry website for information and progress.

http://www.afme.org.uk/news.asp?newsid=513

APPG press release: NHS inquiry
03 April 2009

Dr Des Turner MP, Chair of the All Party Parliamentary Group (APPG) on M.E., has today issued a press release, launching an inquiry into NHS service provision for people with M.E./CFS in England.

Press release open here:  NHS inquiry Press Release  or

http://www.afme.org.uk/res/img/resources/Des%20Turner%20FINAL%20press%20release.pdf

[Ed: The ME Association has posted a more extensive version of the press release which includes Notes for Editors, Background and a copy of the Terms of Reference.  This version of the press release can be read on the ME Association's news page here:  http://www.meassociation.org.uk/content/view/840/161/]

The inquiry committee will consist of Dr Turner MP, Dr Ian Gibson MP, Tony Wright MP, Andrew Stunel MP, Peter Luff MP and the Countess of Marr.

Announcing the terms of reference, Dr Turner said:

Terms of Reference open here :  Terms of Reference  or

http://www.afme.org.uk/res/img/resources/Terms%20of%20reference.pdf

“The committee will consider written evidence from patients and professionals before inviting individuals and organisations to make oral presentations.

“Written evidence will include the findings of questionnaires, for patients and NHS service providers, which are currently being drawn up.

“People with M.E., carers and professionals are invited to submit suggestions for specific questions which should be asked in these surveys. Our deadline for receiving people’s ideas is 5 May 2009.

“The cut-off point for the submission of written evidence will be 30 June 2009. Oral hearings are likely to take place in the middle of July.”

A website is being set up for the inquiry, which will include the timetable of activities.

Until the website is activated, the contact address for the inquiry is: APPG inquiry M.E. services, c/o Dr Des Turner MP, 179 Preston Road, Brighton BN1 6AG.

The launch was announced at a meeting of the APPG in Committee Room 20, House of Commons, on Wednesday, attended by Andrew Stunell MP, Peter Luff MP, Ceri Finnigan representing Edward Davey MP, Dr Derek Pheby of the National ME Research Observatory, Kirstie Haywood, Royal College of Nursing Research Institute at Warwick University, representatives of the Secretariat – Action for ME and the ME Association – and a number of other groups including the 25% Group, MERUK, RiME, K&SAME and Warwickshire ME Network, individuals with M.E. and carers.

Other items on the APPG agenda included a statement from the West Midlands M.E. Groups consortium,

WMMEG statement open here:  WMMEG statement 2009  or

http://www.afme.org.uk/res/img/resources/Statement%20-%20WMMEG%202009.pdf

entitled M.E./CFS – Education and training in the NHS, which expressed concerns about the balance of speakers at the forthcoming NHS CCRNC conference and an article from Pulse which outlined Care Quality Commission proposals to make NICE recommendations (for all conditions) mandatory.

Pulse article: http://www.pulsetoday.co.uk/story.asp?storycode=4121395

A speaker from the Care Quality Commission will be invited to clarify the implications of its proposals at the next meeting of the APPG, date provisionally set for 24 June 2009 (to be confirmed).

Care Quality Commission site: http://www.cqc.org.uk/

TV presenter Max Cotton and a BBC camera crew from the Politics Show were also present to film and interview 24-year-old Samantha Brown, who has had her benefits withdrawn since she became a student, her constituency MP Des Turner and Jane Colby, Young ME Sufferers Trust.

The Politics Show site:  http://news.bbc.co.uk/1/hi/programmes/politics_show/default.stm

Inquiry into NHS service provision for people with ME launched at APPG on ME

Inquiry into NHS service provision for people with ME

A draft Terms of Reference for a proposed inquiry into NHS service provision for people with ME had been presented at the October 08 meeting of the APPG on ME.

This is to be an unofficial inquiry led by a panel of parliamentarians; the full panel has yet to be announced.  Other than a number of caucus meetings held between Dr Des Turner MP, APPG on ME Chair, and representatives from Action for M.E. and the ME Association, the APPG on ME committee has entered into no prior consultation with the ME community over the remit, scope, aims and objectives of this proposed inquiry and no proper consultation has taken place over the inquiry’s Terms of Reference which were presented, last October, as more or less a done deal.

The ME community has not been consulted over whether it considers that an unofficial inquiry into NHS service provision carried out under the auspices of the APPG on ME would be welcomed and if so, what the remit of an inquiry should be and how it should be carried out.

At the meeting of the APPG held, yesterday, Wednesday 1 April, a copy of a Terms of Reference was circulated, together with a Draft Timetable for the inquiry. According to the draft Timetable, a Press Release had been planned to be issued yesterday.  But if any Press Release has been isssued, no copy is available from either the website of Action for M.E. or the ME Association – only the notice, below.  It was announced at the meeting that an inquiry website was anticipated to be launched within the next few days.  In February, it was intimated to me that no funding or adequate resources had at that point been identified to enable an inquiry to proceed.

Since the APPG on ME has sought to consult only with representatives of Action for ME and the ME Association over the inquiry’s Terms of Reference I do not intend to cover the progress of any inquiry on ME agenda site.

If and when a Press Release is issued, I will post a copy here.  I will also post the URL of any dedicated website for the inquiry, a copy of the Terms of Reference and the draft Timetable as these become available.

For all other information around the inquiry, its processes and proceedings and any report that results out of it, readers of this site will need to refer to the inquiry website for I shall not be carrying further information, here.

From the ME Association

02 April 2009

An inquiry into NHS service provision for people with ME/CFS was launched by Dr Des Turner MP at the All Party Parliamentary Group on ME yesterday (April 1)

The inquiry will evaluate the extent to which the NHSS is providing care for people with the illness – particularly in primary and secondary care, and through specialist teams.

The inquiry will take written evidence from patients and professionals before inviting individuals and organisations to make oral presentations.

Written evidence will include the findings of questionnaires, to be sent to patients and NHS service providers.

Fuller details about the remit of the inquiry, its membership, timetable and ways to communicate with it are expected to be announced very shortly.

In attendance yesterday were MPs Dr Des Turner, Andrew Stunell and Peter Luff together with the secretariat provided by the ME Association and Action for ME, and about a dozen individual people with ME and members of the public.

Part of the meeting was filmed by a crew from the BBC’s “The Politics Show” who are following a 24-year-old student with ME, Samantha Brown. Both Ms Brown and reporter Max Cotton were at the meeting. It is expected that Max Cotton’s report will be screened this Sunday, or next, on BBC1. The programme begins at 12 noon.

A fuller report of the meeting of yesterday’s APPG will appear in the May issue of the ME Association’s quarterly magazine, ME Essential.