WHO ICD-10 ME/PVFS DISEASE CLASSIFICATION:

CONTENTS:

1. Introduction / WHO ICD-10.

2. A Note on the Term ‘Fatigue’.

3. Margaret Williams on ME / CFS Terminology.

4. WHO ICD-10 Misrepresented.

1. Introduction / WHO ICD-10.

Myalgic Encephalomyelitis / ME has been recognised by the WHO (World Health Organisation) since 1969 and classified as a biomedical neurological disorder in its International Classification of Diseases tenth revision (ICD-10) at ICD 10 -G93.3. It is classified in Chapter VI (code G) under Diseases of the Nervous System at G93.3 (Other disorders of brain). Unfortunately, there have been many misguided and politically-driven misrepresentations of the WHO position and ME terminology. To complicate matters further, some countries (Germany and the USA, for example) have implemented or are implementing their own amended national “Clinical Modification” versions of the WHO ICD: some of which affect the ME/PVFS classification within. Most other countries however, including the UK, subscribe to the standard version of WHO ICD 10.

Do note that the WHO is in the process of revising/upgrading and consulting upon its entire international classification of diseases under its eleventh revision (WHO ICD 11). The WHO have stated their timetable for this upgrade (which may or may not include substantial changes to ME/PVFS) was as follows but there have been delays and readers are advised to consult the WHO ICD Revision web pages at the below link:

For further information and updates on the eleventh revision of the International Classification of Diseases see:

http://www.who.int/classifications/icd/ICDRevision/en/index.html

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

The standard/unmodified WHO ICD-10 primary tabular list permits the use of the following alternative name for ‘Benign Myalgic Encephalomyelitis/ME’: 'Post Viral Fatigue Syndrome/PVFS' in its disease classification.

ICD-10 classifies ME/PVFS under Diseases of the Nervous System at section G93.3 (Other disorders of brain) and nowhere else. In doing so it implicitly recognises the role of viral involvement in the disease and specifically excludes the disease from mental and behavioural disorders.

The term 'Chronic Fatigue Syndrome/CFS' is not entered/categorised anywhere in the ICD-10 tabular list at all but is listed in the ICD-10 alphabetical index as a term by which ME/PVFS may be “colloquially” referred to:

In clarifying this point to members of the UK ME community, the WHO stated “ME is classified at G93.3 and is a specific disorder. The term CFS covers many different conditions, which may or may not include ME. The use of the term CFS in the ICD index is merely colloquial and does not necessarily refer to ME. It could be referring to any syndrome of chronic fatigue, not to ME at all. The index (i.e. volume iii) cannot be taken as definitive.” [Dr Robert Jacob, Medical Officer (ICD), Classifications, Terminologies and Standards, WHO HQ, Geneva. 4^th February 2009].

Again, some confusion has arisen here not only because some countries have their own “Clinical Modification” version of ICD 10 but because the WHO did not put all of the details of their ICD 10^th Revision in their on-line website summary. For accuracy therefore, full reference needs to be made to the three-volume published/book version of ICD 10 (especially the alphabetical index/volume 3 as well as the tabular list/volume 1) the bibliographic details of all three volumes are:

- International Statistical Classification of Diseases and Related Health Problems -

Tenth Revision – Second Edition: Volume 1 – Tabular List – ISNB: 92 4 154649 2.

- International Statistical Classification of Diseases and Related Health Problems -

Tenth Revision – Second Edition: Volume 2 – Instruction Manual – ISNB: 92 4 154653 0.

- International Statistical Classification of Diseases and Related Health Problems -

Tenth Revision – Second Edition: Volume 3 – Alphabetical Index – ISBN: 92 4 154654 9.

See below for a summary/background-overview of the full ME/PVFS (and discussion of the CFS term) ICD-10 classification and note that the three WHO volumes of ICD-10 can be accessed via academic libraries and some public libraries and are of course available directly from the WHO at: http://www.who.int/classifications/icd/en

Note that the standard three volume WHO ICD-10 does not permit use of the truncated and wholly inadequate term 'Chronic Fatigue' as a reference to ME/PVFS in the tabular list, the alphabetical index or anywhere else. Also, long-term ICD-10 PVFS that is ME is not synonymous with short-term and less serious post viral syndromes. Neither is WHO-ICD-10-recognised ME/CFS the same thing as 'CFS/ME': the latter being a relatively recent term arguably designed to confuse matters by those ignoring the organic and neurological nature of ME that is underpinned by both a large body of clinical and research evidence and WHO ICD-10 disease taxonomy. Moreover, WHO/ICD-10 Myalgic Encephalomyelitis is not the same disease entity as Myalgic Encephalopathy: the latter '-opathy' term, like 'CFS/ME' is completely unclassified by the WHO/ICD-10 and its use to describe ICD-10 ME/PVFS is not recommended. Indeed, as Dr Bruce Carruthers, Senior Fellow of the Canadian Royal College and principle lead of the international expert team that produced the highly respected International ME Clinical Case Definition in Canada stated in 2005:

“The Politics around this are horrendous, and the motive for any name change would seem to have less than the good of mankind at heart. I would not favour any kind of name change, since -itis is well established in the name ME, and there is no good reason for changing it, since - opathy would not reduce our state of ignorance re ME but serve to further confuse everyone- perhaps that is one of the motives behind the suggestion." 

[Dr Bruce Carruthers, 2005: quotation viewable on-line at:

www.investinme.org/Article%20010-Encephalopathy%20Carruthers.htm

2. A Note on the Term ‘Fatigue’.

3. Margaret Williams on ME / CFS Terminology.

ME/CFS:   TERMINOLOGY 

Margaret Williams         27^th 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: 19^th 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 22^nd 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 16^th 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 18^th 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 16^th 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, 10^th 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 6^th 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 16^th 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 23^rd 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 10^th 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.

 

Download ME/CFS: TERMINOLOGY by Margaret Williams at:

www.angliameaction.org.uk/docs/me-cfs-terminology.pdf

http://meactionuk.org.uk/ME_CFS_TERMINOLOGY.pdf

 

Also See/download ME/CFS: Classification Issues by Margaret Williams at:

http://meactionuk.org.uk/ME_CFS_Classification_Issues.pdf

4. WHO ICD-10 Misrepresented.

 

WHO ICD-10 Misrepresented by Wessely School & Official UK Bodies:

[Extracts from Corporate Collusion by Professor Malcolm Hooper et al]:

The NHS Information Authority  (now the NHS Information Centre)

One of the routes of dissemination of information within the NHS used to be via the NHS Information Authority (NHSIA). Contrary to the WHO classification of ME as a neurological disorder, the NHS Information Authority listed chronic fatigue syndrome / myalgic encephalomyelitis as a mental disorder in its Mental Health Minimum Dataset Version 2.0 July 2001 on its website. 

The NHSIA was responsible for providing correct information throughout the entire NHS, which is the third largest employer in the world.

From 6^th April 2003, for over a year written representations were repeatedly made to the NHSIA by Mrs Connie Nelson from Glasgow, the mother of a son with ME/CFS and a committed campaigner on behalf of the ME/CFS community, asking for the erroneous entry on ME/CFS to be removed from the Mental Health Minimum Dataset.

The paper-trail of these communications is demoralising but typical, with correspondence being passed from a “Helpdesk” to the Data Quality and Training Department, to the Coding and Classification Helpdesk, to the Department of Health, back to an “IFPH” Helpdesk, to a Data Quality and Classification Advisor, to the Dataset Development team, to a Data Quality and Classification Programme Manager.  None of these agents addressed Mrs Nelson’s complaint that ME/CFS had been incorrectly classified as a mental disorder by the NHSIA.

Upon receiving confirmation from the NHSIA that “the source of the coding of Chronic Fatigue Syndrome in the Mental Health Minimum Dataset (MHMDS) Data Manual is the WHO Guidance on Mental Health for Primary Care (and) the MHMDS Data Manual will continue to maintain consistency with the provision of the WHO guidance”, Mrs Nelson provided written evidence to the NHS Information Authority confirming that the disorder is not classified as a mental disorder, whereupon she received the following reply from the NHSIA: “The nature and specification of the data items, which make up the Mental Health Minimum Dataset (MHMDS), are matters for the Department of Health. The Department’s view is that it is appropriate for the MHMDS to continue to maintain consistency with the provisions of the WHO guidance”

At that point, Mrs Nelson accepted that as an individual she was unlikely to make progress on this issue, so she enlisted the help of Tony Wright MP, then Chair of the All Party Parliamentary Group on ME, who contacted the NHSIA on her behalf.

On 12^th September 2003 Steven Harrison, Head of Corporate Affairs and Governance at the NHS Information Authority, replied to Tony Wright MP about Mrs Nelson’s complaint that ME/CFS was incorrectly coded by the Information Authority: “This causes an anomaly with the ICD-10.  It is this anomaly that the Authority has been trying to clarify with the Institute of Psychiatry, London.  Originally, the Institute was going to republish its adaptation of the WHO Guide to Mental Health in Primary Care in May of this year (ie. 2003) but delayed it because of our querying of this classification in question”.

On 10^th December 2003 the NHS Information Authority sent another letter to Tony Wright MP in the following terms: “The issue associated with Chronic Fatigue Syndrome was that the Mental Health Minimum Dataset: Data Manual Version 2.0, July 2001, produced by the NHS Information Authority, has referenced the WHO Guide to Mental Health in Primary Care which, with permission of the WHO, has been adapted by the UK and produced by the Institute of Psychiatry, London, from the Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10, chapter 5, Primary Care Version, and in this UK adaptation Chronic Fatigue Syndrome has been assigned the code of F48.0 under the chapter for mental disorders. The point made by your correspondent was that this classification of F48.0 for Chronic Fatigue Syndrome was wrong. Within the UK adaptation, the code for Chronic Fatigue Syndrome has been allocated a code within the mental health and behavioural disorders chapter, which conflicts with the main WHO ICD-10 (mandated for use in the acute sector).  I hope that the situation now arrived at, whereby the Code G93.3 will be available for Chronic Fatigue Syndrome in the UK adaptation by the Institute of Psychiatry will prove to be an acceptable situation”.

Upon receipt of this information, Mrs Nelson wrote to Steven Harrison, Head of Corporate Affairs and Governance at the NHS Information Authority, pointing out that merely making the correct code for ME/CFS “available” in the IoP’s revised edition of the Guide to Mental Health in Primary Care failed to address her original complaint, namely the misclassification of “CFS/ME” in the Information Authority’s Mental Health Data Manual.

It was not until 19^th February 2004 that a formal complaint was submitted to the NHS Information Authority by Dr Charles Shepherd on behalf of the ME Association.

For over a year, the issues of the misclassification of ME/CFS by the NHS Information Authority remained unaddressed.

It was not until 18^th March 2004 that Steven Harrison of the NHS Information Authority sent a letter in the following terms: “I have now been able to investigate your complaint fully. The NHS Information Authority will place a note on our website drawing users’ attention to the changes within this Guide introduced in February. The website will be updated with the current information by 24^th March 2004”.

 

The Guide to Mental Health in Primary Care

The NHSIA’s confirmation that it had taken a decision not to alter the Data Manual on the grounds that the source of the information was the WHO “Guide to Mental Health in Primary Care” and that the Mental Health Minimum Dataset had to retain consistency with that guidance requires clarification.

The “Guide to Mental Health in Primary Care” was produced in 2000 by the WHO Collaborating Centre for Mental Health at the Institute of Psychiatry; it used Wessely’s own material on “CFS/ME” and included ME as a mental (behavioural) disorder.  The Guide was funded by the Department of Health. 

Despite strenuous complaints and despite the WHO ICD-10 classification being mandatory in the UK, sales of the Guide were allowed to continue unabated until almost 30,000 copies had been sold, thereby allowing misinformation to continue to be widely circulated via the Royal Society of Medicine Press. 

Eventually an erratum was promised; despite misclassification being the vehicle for entry into this Guide to Mental Health, the erratum slip made no clear statement that ME/CFS is not classified as a mental disorder but merely informed readers of the correct classification code within the WHO International Classification of Diseases. This would mean nothing to many readers. The title of the second edition was changed to “Guide to Mental and Neurological Health” but did not clarify which disorder is mental or neurological in nature, so the fact that ME/CFS remains within a Guide to Mental Health will continue to mislead.

The Department of Health claimed – erroneously – that this was a World Health Organisation problem and declined to intervene.

Confusion arose because the WHO Collaborating Centre at the Institute of Psychiatry was legitimately able to use the WHO logo on the Guide, so people were misled into believing it was an authorised WHO Guide when such was not the case: it was not the WHO itself but the WHO Collaborating Centre at the IoP which had reclassified ME as a mental disorder, based on Wessely’s own beliefs. In September 2001 the WHO headquarters in Geneva issued a statement repudiating the unofficial reclassification of ME/CFS by the UK Collaborating Centre.

 

The ME community had been informed by Matt Smart, Executive Assistant to the Dean of Psychiatry at the IoP that “The second edition of the Guide (to Mental Health) due for publication in December 2003, has been in preparation for the past 12 months.  CFS has been retained.  The entry is a consensus section including both the ICD-10 mental health entry (neurasthenia) and the ICD-10 neurology entry (ME)”.

This demonstrated that when they were compelled to accept the WHO ruling that the correct classification for ME/CFS was in the neurological section of ICD-10, Wessely School psychiatrists simply maintained that the WHO ICD-10 itself had classified the same disorder (ME/CFS) in two different places, once in the Neurological Section (G93.3) and again in the Mental (Behavioural) Section (F48.0).

Once again, the claims made by the Wessely School were repudiated by the WHO: on 23^rd January 2004 the WHO confirmed: “According to the taxonomic principles governing ICD-10, it is not permitted for the same condition to be classified to more than one rubric”. 

The matter was raised in Parliament on 22^nd January 2004, where Earl Howe noted the suggestion that Professor Wessely had “effectively hijacked the WHO logo to give credence to his own view of ME as a mental illness” (Hansard [Lords] 23^rd January 2004:Vol 656: No 7:1192).

It seemed that nothing would halt the Wessely School juggernaut’s determination to eradicate ME and to classify CFS as a mental disorder, which left the ME/CFS community with a serious problem in that ME/CFS remained incorrectly listed as a mental disorder throughout the NHS Information Authority.

The Mental Health Minimum Dataset “is a nationally defined framework of data on adult mental health patients. All providers of specialist mental health services for adults are mandated to collect the MHMDS”. This seems to mean that all NHS staff have no option but to regard ME/CFS as a mental disorder.

Things became even more complicated in that on 1^st April 2005, the NHS Information Authority ceased operation. Some of its work was being continued by the NHS Connecting for Health and some by the Health and Social Care Information Centre (telephone number 0845-300-6016). 

On 13^th August 2007 a request was lodged with the Information Centre to see if the NHS Information Authority had kept its promise and removed ME/CFS from the Mental Health Minimum Dataset.  Previously the public could check for themselves but  -- despite New Labour’s lip-service to transparency in government – this facility has been removed and access is now only available to NHS staff by using a password.  The inquirer was subjected to a barrage of questions which seemed an extraordinary response to a simple request for information: what is your full name (ie. not just the first fore-name); what organisation do you work for; why are you asking for this information; what do you want this information for; what is the particular reason for wanting this information; what journal are you writing for, and more.  It seemed ironic that the logo of the channel through which the enquiry had to be made (the Information Centre for Health and Social Care) carries the words “Knowledge for Care”.

The answer was received on 17^th August 2007:  “CFS/ME” is still on the Mental Health Minimum Dataset and has definitely not been removed.  There are no plans to remove it.  This confirmation came from the Higher Information Analyst on the Mental Health team at the Information Centre for Health and Social Care, who was specifically asked if there were any plans to remove it.  The inquirer was informed that this information is 100% correct.

A follow-up enquiry to the NHS Information Authority Contact Centre Team at Leeds (ref: IC-05055-TTF2) resulted in the following information on 23^rd August 2007: “The ICD-10 for CFS/ME (G93.3) is correct. It is not specific to the Mental Health Minimum Dataset.  The scope of the MHMDS (affects) adults over the age of 18 who are in contact with and / or receiving specialist secondary health care service and are, or thought to be, suffering form a mental illness. Patients with a diagnosis of CFS/ME (G93.3) would only be included within the MHMDS if they were already in contact with secondary mental health services.  Please note that there are potentially issues relating to the sensitivity of data reporting for ME that may need to be considered when responding to this request”.

The wording of this response seemed to confirm that patients with ME/CFS who either are or have been attending the “CFS/ME” Centres or who have attended any secondary psychiatric clinic (albeit suffering from a classified neurological disorder) have acquired a mental health label, which could and inevitably would have far-reaching effects for the rest of their life.

 

Electronic Libraries

Not only was the inclusion of ME/CFS as a mental disorder to be found in the “Guide to Mental Health in Primary Care” and in the NHS Mental Health Minimum Dataset – it was also to be found in the NHS National Electronic Library for Mental Health (see http://www.nelmh.org/index.asp ), where the “Mental Health in Primary Care” section is supplied by the WHO Collaborating Centre for Research and Training in Mental Health, Institute of Psychiatry, Kings College, London; “Chronic fatigue syndrome (CFS or CFS/ME)” was listed under “Adult Disorders” between Bipolar Disorder and Chronic mixed anxiety and depression”.

The NHS National Electronic Library for Mental Health has now become The Mental Health Specialist Library

http://www.library.nhs.uk/mentalhealth/

--o--

The Department of Health 

The UK Department of Health is in danger of becoming a department of derision.

In response to a letter about myalgic encephalomyelitis (ME) sent to the Secretary of State for Health (then Dr John Reid), a reply dated 31^st March 2004 was sent from the Department of Health on his behalf and was signed by Karen Nicolayson from “Research and Development”.  On the issue of whether ME/CFS is a physical or psychological disorder, the reply stated: “The Department of Health is neutral on this issue”.

A look at information previously provided by the Department of Health is revealing because it shows that the above statement is at variance with what is on the public record.

1. ME was recognised as a physical disorder by the Department of Health on 27^th November 1987  (see Hansard (House of Commons) for 27^th November 1987, column / page 353).

 

2. In an undated begging letter shortly after this (distributed under the auspices of the UK ME Association) signed by Professor James Mowbray (Professor of Immunpathology at St Mary’s Medical School, London), he wrote “In November 1987 ME was recognised as an organic disorder by the Department of Health.  I know the feelings of frustration and anxiety felt by ME sufferers.  If you will help, I know research is the best way to find the answers”.

 

3. In 1988 there was an Early Day Motion (EDM) on ME in the House of Commons; it stated: “That this House strongly condemns the Yorkshire Television programme ‘Where there’s life’ broadcast by the Independent Broadcasting Association on Wednesday 8^th June 1988 on the illness myalgic encephalomyelitis: agrees that the programme was based on inadequate and ill-informed research:  questions the motive of the programme:  concludes that such a programme debases the reputation of Broadcasting and betrayed the thousands of sufferers throughout the country who suffer from the terrible illness, Myalgic Encephalomyelitis”. One of the signatories to that EDM was Dr John Reid (former Secretary of State for Health).

 

4. The ME Sufferers’ Bill was presented to the House of Commons by Jimmy Hood MP on 23^rd February 1988 and passed its first reading unopposed.  The second reading was on 15^th April 1988. The Bill asked for an annual report to Parliament:  “It shall be the duty of the Secretary of State (for Health) in every year to lay before each House of Parliament a report on the progress that has been made in investigating the causes, effects, incidence and treatment of the illness known as ME”.  Hansard (House of Commons) for 23^rd February 1988 at columns 167-168 records  “There is no doubt that ME is an organic disorder.  The sufferers are denied proper recognition, misdiagnosed, vilified, ridiculed and driven to great depths of despair”.

 

5. In one of her published diatribes on ME sufferers, journalist Caroline Richmond (who, together with Nick Ross -- recently retired from the BBC CrimeWatch -- was one of the founders of HealthWatch), stated: “Myalgic encephalomyelitis is the first and indeed the only disease legally recognised in Britain, thanks to a private member’s Bill passed in 1988”  (Myalgic Encephalomyelitis, Princess Aurora, and the wandering womb.  BMJ 1989:298:1295-1296).

 

6. On 16^th August 1992, Stephen Dorrell MP, Minister of Health, went on public record confirming that “ME is established as a medical condition” when he addressed a meeting of the Leicestershire ME Group.

 

7. On 18^th January 1996, the official view of the Department of Health was set out in a letter to Geoffrey Clifton-Brown MP in terms: “The Government accepts that ME/CFS can follow a post-viral infection”. This letter was signed by Baroness (Julia) Cumberlege in her capacity as Parliamentary Under Secretary of State for Health.

 

8. A letter dated 30^th May 2001 from the Department of Health signed by Linda Percival of the Health Services Directorate  (ref: TO 2001 / 15353) states: “To improve services for people with long-term illnesses, the Government recently announced a National Services Framework (NSF).  The NSF will have a particular focus on the needs of people with neurological disease.  It is very likely that chronic conditions such as ME/CFS will be included”. 

The information on the National Service Framework merits more scrutiny, because by letter dated 8^th June 2001, Chris Clark, former CEO of AfME, wrote: “I had been told ME was definitely NOT to be included in the neurological NSF.  If this message is true (ie. the one referred to above from Linda Percival at the Health Services Directorate) it is sensational”.  Who told Mr Clark that ME/CFS was not to be included or accepted as a neurological disorder? Was it the Wessely School psychiatrists, with whom he so closely co-operated?  Was it because the psychiatric lobby would not tolerate any departure from their own agenda to reclassify ME/CFS as a behavioural disorder?

In its magazine ME Essential, Spring 2005, issue 94, the ME Association said: “Launch of the new National Service Framework. The new NSF for people with long-term neurological conditions was launched by the Department of Health on March 10 (ie. 2005).  The NSF sets standards of treatment, care and support across health and social care services.  Diane Newman, ME Association Trustee, commented: ‘This particular NSF focuses on neurological conditions and ME/CFS falls in that remit’ ”. 

In case further confirmation is needed, it is provided in Hansard for 6^th March 2006 (HC: Column 1200W), where the Under Secretary of State for Health, Liam Byrne MP, stated categorically: “National Health Service organisations are expected to demonstrate that they are making progress towards achieving the level of service quality described in the National Service Framework (NSF) for long-term conditions.  The NSF sets out a clear vision of how health and social care organisations can improve the quality, consistency and responsiveness of their services and help improve the lives of people with neurological conditions, including CFS/ME”. 

Yet more confirmation was provided on 12^th May 2006 by Ivan Lewis MP, Parliamentary Under-Secretary of State at the Department of Health: “Those most severely affected by chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) have access to the full range of health and social services support as outlined in the National Service Framework for long-term conditions (NSF)”  (Hansard, 12^th May 2006).

From the above, it can be seen that the Department of Health is not “neutral” about ME/CFS as claimed on behalf of the then Secretary of State Dr John Reid. 

What can be clearly seen is that either the Department of Health does not know what it is doing from one day to the next or, on no good evidence, it has allowed itself to be overly influenced by the psychiatric lobby. This makes its present unquestioning acceptance of the Wessely School’s expediently constructed psychiatric paradigm all the more culpable, because although people are justified in relying implicitly on these documents from the official bodies quoted above, they are being badly let down when they attempt to do so. 

It is certainly the case that in his post as Parliamentary Under Secretary of State for Community Care at the Department of Health, Dr Stephen Ladyman MP, grossly misled both MPs and the public: it was he who by letter dated 7^th October 2003  (ref: PO 1036444) stated in support of Professor Wessely’s personal view that: “The WHO ICD-10 classifies CFS in two places; as neurasthenia / Fatigue Syndrome on the mental health chapter (F48.0) and as Postviral Fatigue Syndrome / Benign Myalgic Encephalomyelitis in the neurology chapter (G93.3).  The WHO has essentially put the same condition in both places”. 

A letter of 31^st March 2004 from Karen Nicolayson at the Health Services Directorate concedes this to be erroneous: “I confirm that the World Health Organisation (WHO), the WHO Collaborating Centre and the Department of Health have now agreed a position on the classification of CFS/ME (and it) has been indexed to the neurology chapter”.

In view of what the Department of Health has previously stated about ME/CFS, and given the formal confirmation on 11^th February 2004 from the Health Minister (Lord Warner) that the correct classification for ME/CFS is as a neurological disorder at G93.3 in ICD-10, and given that the National Service Framework specifically includes ME/CFS as a long-term neurological condition, what more clarification is needed to persuade the UK Departments of State and their supporting agencies that ME/CFS is not a mental disorder?

--o--

The MRC Draft RAG Report

The MRC Research Advisory Group (RAG) released its draft Report on “CFS/ME” on 17^th December 2002 for public consultation. The author of that draft Report was Dr Chris Watkins, MRC Programme Manager for Research on Mental Illness.

The draft Report was replete with misinformation and skewed thinking.  It claimed to be a strategy which “reflects the current state of knowledge of CFS/ME and which aims to provide a rational framework for advancing the understanding of the illness and its management” but it blatantly ignored the significant amount of biomedical evidence that was submitted. 

It advised that studies of causal pathways would not increase understanding of “CFS/ME”.  It suggested that given “the present difficulties in identifying priorities for research”, it was not appropriate to make “CFS/ME” research a priority. It deliberately did not consider the defining topic of terminology.

It asserted – erroneously – that: “there are separate entries in the WHO ICD-10 for chronic fatigue syndrome and myalgic encephalomyelitis”.  Given the number and nature of the documents known to have been sent to the MRC, it was not credible to assume that the error about ICD-10 classification was a simple mistake or over-sight, or that the members of the RAG were unaware of the correct classification. 

The draft RAG Report claimed that predisposing factors for “CFS/ME” include female gender, personality and previous mood disorder.

It blatantly asserted: “Many reported findings in the area of pathophysiology are not published in peer-reviewed literature”, stating that in those studies which had found evidence of abnormalities, “the lack of methodological rigour means that many of these claims find little support from the wider medical community, but may have strong currency among some patients and practitioners”.  Such a claim was not only patronising and arrogant, it was preposterous.  Evidence was promptly submitted to the RAG listing 65 international peer-reviewed journals, some of high impact factor, that had carried informative articles about the pathophysiology of ME/CFS. Authors of those papers included world-renowned experts including Professors of Medicine and Professors of Immunology. This was ignored by the MRC RAG; its members in fact stated that they had purposely not considered the current level of scientific knowledge on the aetiology or pathogenesis of CFS/ME; instead, members relied on the Wessely School literature.

The draft Report dismissed the documented immunological disturbances seen in ME/CFS and instead referred to “sickness behaviour syndrome”. It referred to the effects of “suggestibility”. It specifically advised against identifying subgroups of “CFS”, which was contrary to advice from prestigious international experts who were highlighting the urgent need for the study of subgroups.

Inevitably, the draft Report recommended that the interventions of choice should be CBT and GET.

Many people sent in detailed responses to the RAG draft Report, almost all of which seem to have been ignored.

 

The finalised MRC RAG Report

The MRC RAG final Report was released on 1^st May 2003 (“MRC CFS/ME Research Advisory Group: CFS/ME Research Strategy”). 

Evidence submitted to the MRC RAG of international research findings underpinning the serious organic nature of ME/CFS included creatine excretion in urine (a sign of muscle damage), low total body potassium, abnormal lung function parameters, autoimmune components in anti-lamin B1 nuclear envelopes, consistently low NK cells, lack of recovery of muscle function after exercise, less than 60% oxygen delivery in blood, altered peroxinitrite, involvement of the liver, pancreas and heart, plus much more.  It was all disregarded.

As part of its consultation process, the MRC had asked the Public Health Resource Unit (based in the Institute of Health Sciences at Oxford) to analyse the consultation questionnaire. The PHRU is an NHS unit that was set up in 1997 to support change and development within the NHS.

A total of 187 responses to the questionnaire were received, some being from patients with ME/CFS, some from carers, some from charity representatives and some from clinicians and researchers.  On 6^th May 2003 the Senior Project Officer herself confirmed to an inquirer that she had provided the MRC with a detailed and comprehensive 25 page document on the responses to the questionnaire which addressed the data that had been provided by respondents.  She further confirmed that Elizabeth Mitchell of the MRC did not want to use this document, saying it would be “too overwhelming”, and ordered the Senior Project Officer to submit just a summary of her document.

 As one long-time advocate on behalf of the ME/CFS community noted: “We are satisfied that no failure lies with the Public Health Resource Unit as it has been established that RAG members were aware of the submitted evidence.  We are thus compelled to conclude that RAG members have been deliberately selective and that such selectivity is likely to be in accordance with a pre-set agenda as so relentlessly promulgated by the Wessely School, about which we have publicly raised legitimate concerns for the last decade” (Co-Cure ACT: 4^th January 2004).

The Senior Project Officer further confirmed that the petition submitted by Research into ME (RiME) – which contained over 16,000 signatures calling for biomedical research into ME -- was wholly ignored because the cut-off period ended on Friday 30^th August and the petition did not arrive until the following Monday, 2^nd September 2002.

As in the draft Report, the MRC RAG final Report erroneously stated: “There are separate entries in the WHO ICD for “chronic fatigue syndrome” and “myalgic encephalomyelitis”; as noted above, before publication of the final version of their Report, RAG members had had this error specifically pointed out to them. The repeated ignoring of the evidence on this issue must therefore be seen as deliberate, and reflects the determination of Wessely School psychiatrists to re-classify ME/CFS as a psychiatric disorder, no matter what the evidence to the contrary.