ME DEFINED: Myalgic Encephalomyelitis (myalgic= muscle-pain, encephalo= brain, myelitis= spinal-cord, encephalomyelitis= inflammation of brain & spinal-cord) is a long-term organic/ biomedical multi-system neurological illness. ME is not a psychiatric or behavioural illness (see below) and has in fact appeared in the medical literature since the 1930s.

 

ME has been recognised by the WHO (World Health Organisation) since 1969 and classified as a neurological (biomedical) disorder in its International Classification of Diseases tenth revision (ICD-10) at ICD 10 -G93.3. 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 PVFS/ME classification. Most other countries however, including the UK, subscribe to the standard version of the WHO ICD.

Please 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 has stated its timetable for this upgrade (which may or may not include substantial changes to PVFS/ME) as follows but there have been substantial 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 'Postviral Fatigue Syndrome/PVFS' in its disease classification: 'Benign Myalgic Encephalomyelitis/ME’.

ICD-10 classifies PVFS/ME 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 but is listed in the ICD-10 alphabetical index as a term by which PVFS/ME may be 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 – ISBN: 92 4 154649 2.

- International Statistical Classification of Diseases and Related Health Problems -

Tenth Revision – Second Edition: Volume 2 – Instruction Manual – ISBN: 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 PVFS/ME 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 PVFS/ME 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 postviral syndromes. 'Chronic Fatigue' is common to most chronic diseases and cannot therefore be usefully used to differentiate between them. Neither is WHO-ICD-10-recognised PVFS/ME the same thing as 'CFS/ME': the latter being a relatively recent term which appears to be designed to confuse matters by those ignoring the organic and neurological nature of PVFS/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 PVFS/ME is neither correct nor helpful. Indeed, as Dr Bruce Carruthers, Senior Fellow of the Canadian Royal College and principal 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

 

And as Professor Malcolm Hooper unequivocally states: “Despite the claims of some Psychiatrists, it is not true that there is no evidence of inflammation of the brain and spinal cord in ME.”

[See: www.investinme.org/Article%20010-Encephalopathy%20Hooper.htm

POLITICALLY SKEWED MEDICINE: AMEA agrees wholeheartedly with Harvard Medical School's Professor Anthony Komaroff that the skewed polemic of the minority psychiatric school (many with insurance-industry-derived vested interests) should be consigned to the dustbin of history. The time for honest ME science and adherence to proper medical taxonomy is long overdue:

“...there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness. It’s not an illness that people can simply imagine that they have and it’s not a psychological illness. In my view, that debate, which has waged for 20 years, should now be over”

[Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA Government CDC (Centers for Disease Control and Prevention) press conference on 3 November 2006.] http://www.cdc.gov/media/transcripts/t061103.htm

Note: the patient selection and diagnostic criteria for much of the existing research base however leaves a lot to be desired and there is an urgent need to fund more research using genuine science-based patient-selection criteria and techniques if ME patients are to be treated and cared for in a proper biomedical and compassionate manner. On problems with varying patient selection criteria involved and resultant confusion and controversy – see the following two papers for example:

What is ME? What is CFS? Information for Clinicians and Lawyers. Professor Malcolm Hooper.  www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm 

The Development of a Revised Canadian Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Case Definition. Professor Leonard A Jason et al. American Journal of Biochemistry and Biotechnology 6 (2): 120-135,SN 1553-3468. Available online at:

www.scipub.org/fullext/ajbb/ajbb62120-135.pdf

www.scipub.org/scipub/c4p.php?j_id=ajbb

Also see: Cozzo J. JAMA 1989;261:5:697.

AMEA strongly recommends you urgently funding further biomedical ME research in the UK via two excellent ME charities, Invest in ME and ME Research UK. Further information is available at the following links:

www.investinme.org/index.htm

www.meresearch.org.uk/index.html

 

NICE/NHS GUIDELINES: AMEA calls for root and branch revision of NICE/NHS ‘CFS/ME’ Guidelines (CG53). They cannot be accurately said to apply to PVFS/ME patients as the guidelines are currently based upon a highly questionable and extremely poor and limited 'evidence base' and are viewed by many medical professionals and charities as hopelessly flawed, misleading and at odds with both the wider international evidence-base and WHO ICD 10 medical taxonomy. For example, Dr Terry Mitchell, one of the most experienced and long-serving NHS hospital consultant ME specialists had this to say to the UK High Court Judicial Review of NICE CFS/ME Guideline 53:

“Until recently I was for many years the Consultant clinical lead (CNCC) of the Norfolk, Suffolk & Cambridgeshire NHS ME/CFS Service. Further to the query regarding the composition of the Guideline Development Group (GDG) for the NICE guidelines relating to ME/CFS. I confirm that I was hugely disappointed to find that the membership of the GDG did not include any of my clinical colleagues who over the years have seen large numbers of patients with ME/CFS. In my view this resulted in an unbalanced analysis as many who were on the GDG seemed to have strong leanings to the psychological / psychiatric approach to this devastating illness. ...I also have to say that I was astonished to discover that the systematic evidence review (authored by Bagnall et al – York/CRD 2005), specifically commissioned to support the NICE ME/CFS guideline, omitted the serious concerns highlighted in their previous review of the same literature (JAMA 2001) that such evidence was seriously flawed.”

[Dr Terry Mitchell, MA MD FRC-Path, Consultant Clinical Lead (CNCC) to one of the 12 national NHS specialist hospital ME/CFS centres - in his witness statement to the UK High Court on 23 June 2008].

 

CBT/GET: Along with many medical specialists and concerned researchers, AMEA believes it is both scientifically untenable and disgraceful that NICE/NHS recommend use of CBT (Cognitive Behavioural Therapy). CBT is a psychotherapy technique that, in the form applied to ME patients, attempts to incorrectly persuade them, in the face of so much contra-indicating peer-reviewed and clinical evidence and without properly examining them, that they are not as ill and disabled as they allegedly imagine or appear to be. In the case of GET (Graded Exercise Therapy), such is the level of contra-indication showing that this causes patient harm, and may even lead to death in severe cases, that its recommended application may amount to reckless medical negligence. On such a highly questionable combined psychiatric/behavioural approach to ME patients, Dr Bruce Carruthers, Senior Fellow of the Canadian Royal College and principal lead of the international expert team that produced the highly respected ME Clinical Case Definition, states:

“Supporters [of CBT/GET] suggest that ‘ideally general practitioners should diagnose CFS and refer patients to psychotherapists for CBT without detours to medical specialists as in other functional somatic syndromes’. Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of patient’s symptoms, blame them for their illness and withhold medical treatment. Their studies have often included patients who have chronic fatigue but excluded more severe cases as well as those who have other symptoms that are part of the clinical criteria of ME/CFS.”

[See: SHS Box on page 10 of (and indeed the whole document): Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners - An Overview of the Canadian Consensus Document by Professor Bruce M Carruthers and Dr Marjorie I Van de Sande. UK – NHS Clinician Endorsed / UK A4 Format – Version].

MEDICAL RESEARCH COUNCIL (MRC): AMEA calls for a long overdue end to the disgraceful effective monopolisation of MRC public ME research funds by the insurance-industry-linked psychiatric lobby - that was highlighted by Professor Malcolm Hooper's formal complaint to the UK Government's Science Minister, Lord Drayson and by a cross-party parliamentary group of inquiry:

 “This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to psychosocial research. It can no longer be left in a state of flux and these patients or potential patients should expect a resolution of the problems which only an intense research programme can help resolve.”

[Parliamentary Group on the Scientific research into ME (GSRME) Report, Page 34, November 2006].

www.erythos.com/gibsonenquiry/index.html

 

THE PACE TRIAL: PACE (Pacing, Activity, and Cognitive behavioural therapy, a randomised Evaluation) is a study jointly funded by the UK Government's MRC and Department for Work and Pensions (DWP) that uses CBT/GET to 'manage' 'CFS/ME' patients. Many medical professionals and politicians are deeply concerned with both the unscientific 'Oxford patient-selection criteria' concocted and employed by PACE principal investigators and their links to both the medical insurance industry and private-sector CBT/GET service providers. Indeed, this is the largest 'medical trial' ever funded by the DWP which, like the medical insurance industry, has a clear vested financial interest in promoting dubious psychiatric interpretations of 'CFS/ME' and behavioural interventions. Thus, for example, a cross-party parliamentary group of inquiry clearly stated:

“The Group found that the international criteria paid far greater attention to the symptoms of CFS/ME while the Oxford criteria [favoured by the psychiatric lobby] focus very little on any symptoms other than long term tiredness. There is concern that the broad spectrum of patients who may be included in these criteria may lead to inaccurate results in patient studies of CFS/ME.”

[Parliamentary Group on the Scientific research into ME (GSRME) Report, Page 12, November 2006].

www.erythos.com/gibsonenquiry/index.html

“There have been numerous cases where advisers to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUM Provident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body.”

[Parliamentary Group on the Scientific research into ME (GSRME) Report, Page 30, November 2006].

www.erythos.com/gibsonenquiry/index.html

“In Britain, there has been a clear historical bias towards research into the psychosocial explanations of CFS/ME. This is despite Parliament recognizing ME as a physical illness in a Private Members Bill, the ME Sufferers Bill, in 1988.”

[Parliamentary Group on the Scientific research into ME (GSRME) Report, Page 9, November 2006].

www.erythos.com/gibsonenquiry/index.html

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