Myalgic Encephalomyelitis (M.E.) is a long-term biomedical multi-system neurological illness. It is also an illness where, in the view of many professionals and patients alike, genuine scientific inquiry has been skewed by politics and vested interest - see below.

http://www.angliameaction.org.uk/docs/Professor-Tuller-22-September-2016.pdf

http://www.angliameaction.org.uk/docs/Proof-Positive-Revisited-September-2016.pdf

http://www.angliameaction.org.uk/docs/m-williams-key-points-from-raw-PACE-data.pdf

http://www.angliameaction.org.uk/docs/Williams-response-to-Crawley-6-November-2016.pdf

http://www.angliameaction.org.uk/docs/Hooper-Response-to-Friedberg-15Oct2016.pdf

CALL FOR PARLIAMENTARY INQUIRY:



NEWS / ITEMS OF INTEREST:



 Peer-Reviewed CLINICAL GUIDANCE:  International Consensus Panel  CRITERIA and PRIMER  

      


Accredited Annual London Medical/Research Conferences and Resources




NICE Guideline - CG53 Concerns & Legal Challenge




Misguided Psychiatry, Tragic Reality, Coroner and Autopsy




"When a professional person - especially a doctor - has repeatedly been shown to be wrong in their professional judgement and, as a direct consequence, people have been harmed, that doctor should surely be held personally responsible and accountable: in such circumstances legitimate criticism should not be dismissed as an ad hominem (personal) attack."



Quotable Quotes About ME




  2006 GSRME UK Parliamentarian Inquiry




http://www.angliameaction.org.uk/docs/PLAGUEthebook.pdf

NOTICE: In Memoriam - Dr Terry Mitchell - 1941 to 2015


ABOUT AMEA / DISCLAIMER / CONTACT:


www.angliameaction.org.uk


ANGLIA ME ACTION (AMEA)
is a UK-based medico-political campaign. The AMEA website is designed to encourage and assist medical professionals, politicians, journalists and public to press for genuine evidence-based research, care and treatment, based upon genuine science-based patient selection criteria, for the WHO-ICD-10-recognised biomedical multi-system illness known as  Myalgic Encephalomyelitis/ME.

AMEA ADVISORY - All campaigning should be conducted in an appropriate and non-threatening manner. However, to quote seasoned campaigner Margaret Williams: "When a professional person - especially a doctor - has repeatedly been shown to be wrong in their professional judgement and, as a direct consequence, people have been harmed, that doctor should surely be held personally responsible and accountable: in such circumstances legitimate criticism should not be dismissed as an ad hominem (personal) attack."

AMEA DISCLAIMER - PLEASE NOTE: Anglia ME Action campaigns in the field of medical politics but cannot and does not give medical advice to patients and carers. If you require such advice, AMEA strongly suggests that you seek it from qualified, informed and up-to-date specialist medical practitioners and not from this website.  AMEA is  not a social/ support group for patients.

AMEA UPDATES – PLEASE NOTE: Whilst Anglia ME Action endeavours to ensure that information on this website is correct, because it has limited resources, AMEA cannot provide an up-to-the-minute bulletin-board and exhaustive fact-checking service. You are therefore urged to check and update information & references with other ME organisations and elsewhere.

AMEA CONTACT – PLEASE NOTE: Unfortunately, because Anglia ME Action is a campaign platform with very limited resources, it is impossible to guarantee to read or respond to your emails. Notwithstanding this limitation, constructive comment can be sent to:

 
MYALGIC ENCEPHALOMYELITIS (M.E.) OVERVIEW:

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 WHO ICD-10 CLASSIFICATION: 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. A facsimile of the WHO ICD-10-G93.3 classification is available here:


GENERAL WHO ICD UPGRADE: 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 initially stated its timetable for this upgrade (which may or may not include substantial changes to PVFS/ME) as follows but there have been very substantial delays and 2017 is now the earliest expected date of publication. Readers are therefore advised to consult the WHO ICD Revision web pages directly at the below links:

- ICD-11 Alpha Draft: 10 May 2010.
- ICD-11 Beta Draft: 10 May 2011.
- ICD-11 Final Draft: 2014.

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

http://www.dxrevisionwatch.com/about



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 “CFS is a broad umbrella. This needs to be clarified. It is not possible to make a deduction from CFS. Volume 1 is the relevant volume for ME. 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. In its Guideline, NICE has used an ambiguous term. The WHO does not regognise the term 'CFS/ME' and refers to its use as 'unfortunate'”.

[Dr Robert Jacob, Medical Officer (ICD), Classifications, Terminologies and Standards, WHO HQ, Geneva. 4th February 2009. Cited by Professor Malcolm Hooper at::

http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.htm

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 10th 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.


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

A NOTE ON ‘FATIGUE’ TERMINOLOGY:

 

‘Fatigue’ is a by-product of healthy activity by healthy individuals as well as a symptom common to most illnesses, physical and mental, and it varies widely in intensity. The term is in fact so broad-ranging that AMEA, along with many ME specialists, believe it to be utterly pointless and misleading when used to describe the serious multi-system immuno-neuro-endocrine disease that is Myalgic Encephalomyelitis. Ditto for the term 'Chronic Fatigue(CF)' which is a common feature in most chronic illnesses and therefore useless as a term of differentiation.

The terms ‘Chronic Fatigue Syndrome (CFS)’ or, worse still, ‘Fatigue Syndrome (FS)’ or 'Fatigue (F)' are those favoured by the psychiatric school linked to the medical insurance industry that has a vested interest in trivialising ME – as noted by UK Parliamentarians in 2006:
 

“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

AMEA does not therefore use the terms 'Fatigue (F)', ‘Fatigue Syndrome (FS)’ or ‘Chronic Fatigue (CF)’ to describe Myalgic Encephalomyelitis / ME at all and only very reluctantly acknowledges the term ‘Chronic Fatigue Syndrome (CFS)’ as applied to PVFS/ME because the World Health Organisation (WHO) have indicated the term as an alternative “colloquial” label in the index of the tenth revision of its International Classification of Diseases (referencing section G.93.3) and others have misguidedly applied the label to genuine PVFS/ME patients in clinical and research settings. Neither is 'Chronic Fatigue Syndrome / CFS' the same entity as 'Fatigue Syndrome /FS': 'Chronic Fatigue Syndrome / CFS' is given as a colloquial index reference to ME/PFVS ICD-10.G93.3 (i.e. a physical/neurological disease), 'Fatigue Syndrome / FS' is listed by the WHO as a completely separate mental (‘neurasthenia’) disorder in ICD-10-F.48.0. With reference to ICD-10, the WHO have made it clear that a disease cannot be classified under more than one rubric and that ME/PVFS ICD10-G93.3 is not the same illness as 'Fatigue Syndrome / FS' ICD-10-F.48.0 and the two categories should not be conflated[*]. One word then, ‘Chronic’, added as a prefix to ‘Fatigue Syndrome’ makes all the difference between a “colloquial” reference to physical illness listed by the WHO in ICD-10-G93.3 and a mental illness, listed in ICD-10-F.48.0.

AMEA in fact believes it is no more appropriate to call ME ‘Chronic Fatigue Syndrome’ or 'Fatigue Syndrome' than it would be to describe HIV-AIDS as such. Lest anyone view such a comparison as trivial I would refer them to the comments by internationally respected AIDS and ME specialist, Professor Nancy Klimas:

“I hope you are not saying that [ME] patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses (in 2009) I would rather have HIV”

[Nancy Klimas, one of the world’s foremost AIDS and ME physicians; Professor of Medicine and Immunology, University of Miami; New York Times, 15th October 2009].

 

AMEA and many others in the PVFS/ME professional and patient community are justified in being pedantic about proper disease taxonomy as it is vital to ensure correct diagnosis and genuine science-based research and treatments. It is also essential as a bulwark against those such as, psychiatrist professor Simon Wessely, for example, who, in spite of the tenth edition of the International Classification of Diseases and a large body of biomedical evidence, misrepresented PVFS/ME as mental illness and WHO ICD-10 taxonomy as merely patients' own "lay label". This was done in order to pursue a "constructive labelling" "strategy" of having physical PVFS/ME gradually subsumed into the rubric of mental disorders by "gradually expanding understanding of the condition to incorporate the psychological and social dimensions." Thus Professor Wessely tellingly states:

“One challenge arises when patients have named their condition in a way that leaves doctors uncomfortable, as occurred with chronic fatigue syndrome. It may seem that adopting the lay label endorses the implicit causal theory and reinforces the perceived disability. For better or worse, the medical profession has lost the monopoly on naming conditions, and rejecting lay terms can needlessly alienate patients. A compromise strategy is “constructive labelling,” expanding on the lay name. It would mean treating chronic fatigue syndrome as a legitimate illness, acknowledging that it may have a viral trigger (as many patients report), while gradually expanding understanding of the condition to incorporate the psychological and social dimensions. The recent adoption by the UK Medical Research Council and the chief medical officer’s report of the term chronic fatigue syndrome/myalgic encephalitis reflects such a compromise, albeit an uneasy one."

[Managing patients with inexplicable health problems. BMJ Volume 326, 15 March 2003. Baruch Fischhoff, Simon Wessely. BMJ 2003;326:595–7.]  

“I will argue that ME is simply a belief, the belief that one has an illness called ME”
[“Microbes, Mental Illness, The Media and ME: The Construction of Disease”; Simon Wessely; 12th May 1994; 9th Eliot Slater Memorial Lecture, Institute of Psychiatry, London].
A copy of Professor Wessely's own 12th May 1994; 9th Eliot Slater Memorial Lecture notes, along with comment, is available here as a .tif file and here in other formats:

http://www.meactionuk.org.uk/wessely_speech_120594.htm
http://www.meactionuk.org.uk/wessely_speech_120594.pdf


Cited in 'Submission re: DSM-V and ME/CFS', Compiled by Professor Malcolm Hooper and Margaret Williams for submission by The 25% ME Group, 20 March 2010:
http://www.meactionuk.org.uk/DSM-V-submission.htm
http://www.meactionuk.org.uk/DSM-V-submission.pdf

 

PVFS/ME is WHO ICD-10 disease classification, not the "lay label" that Professor Wessely misleadingly claims. It is rightly classified in ICD-10 as neurological/physical disease and accompanied by a large body of biomedical evidence. ME is not "simply a belief" as Wessley disgracefully asserts.

Caveat Emptor therefore: the psychiatrists' “constructive [re]labelling” “strategy” gradually moves 'PVFS/ME' to 'ME/CFS' to 'CFS/ME' to 'CFS' to 'FS' to 'F' and all in disregard of a growing body of biomedical evidence.

 

[*] For further discussion on such matters see:

ME/CFS: TERMINOLOGY by Margaret Williams at:

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

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

 

ME/CFS: Classification Issues by Margaret Williams at:

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


KEY DOCUMENT LINKS:

International ME Specialist Consensus Panel - Guidelines - Carruthers et al 2011:
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf

International ME Specialist Consensus Panel - Clinical Practice Primer - Carruthers et al 2012:
www.angliameaction.org.uk/docs/ME-ICC-Primer-2012.pdf


NICE February 2009 Judicial Review
Documents Page

http://angliameaction.org.uk/NICEJR

Preview of the NICE Judicial Review  - 3 Feb 2009
http://angliameaction.org.uk/docs/Preview-of-the-NICE-Judicial-Review-Feb09.pdf

Justice Cranston - 17 June 2008
http://angliameaction.org.uk/docs/JusticeCranston17June2008.pdf

Ianadequacy of the York/CRD Evidence Base Review for NICE - Professor Hooper et al 2005:
www.angliameaction.org.uk/docs/Inadequacy-of-2005-York-Evidence-Review-for-NICE.pdf


The UK Government's three-pronged strategy for "CFS/ME" - Margaret Williams 2014:
www.angliameaction.org.uk/docs/Williams-UK-Government-Strategy-for-CFS-ME.pdf


Corporate Collusion - Concerns re skewing of public policy - Professor Hooper et al 2007:
www.angliameaction.org.uk/docs/corporate-collusion.pdf


Magical Medicine: How to Make a Disease Disappear - Professor Hooper et al 2010:
www.angliameaction.org.uk/docs/magical-medicine.pdf


Complaint to The Lancet Re Controversial MRC-funded PACE Trial - Professor Hooper 2011:
www.angliameaction.org.uk/docs/Hooper-complaint-to-Lancet-re-PACE.pdf


Quotable Quotes: Wessely-School psychiatrists (et al) in their own words - Margaret Williams for the charity IiME 2007:
www.angliameaction.org.uk/docs/Quotable-Quotes-Updated.pdf


Death Certificate/Documentation - Misguided UK Psychiatry and Tragic Death of Young Woman with ME in 2005:
www.angliameaction.org.uk/docs/Psychiatry-and-Death-of-Sophia-Mirza.pdf


An Overview of the Canadian Consensus Document - 2005
http://angliameaction.org.uk/docs/CanadianOverviewUK.pdf

Canadian Consensus Document - Dr Carruthers et al 2003
http://angliameaction.org.uk/docs/Canadian-Consensus-Document-2003.pdf

M.E. Patient Exercise – Consequences upon Brain Blood Flow
http://angliameaction.org.uk/docs/Dr-Byron-Hyde--SPECT-Scans--Post-Exercise--Brain-Blood-Flow.pdf

EAME Letter to local PCT Oct 2006: "The future of the Norfolk and Suffolk ME/CFS Clinic"
http://angliameaction.org.uk/docs/EAME-Letter-19-October-2006.pdf

EAME Response to NICE CG53 Three Yearly Review - November 2010
http://angliameaction.org.uk/docs/eame-nice-cg53-response-nov2010.pdf
 

RESEARCH / ADVOCACY / EDUCATION LINKS:

Accredited Annual London Medical/Research Conferences:
http://www.investinme.org/IIME International ME Conferences.htm

Invest in ME (IiME):
http://www.investinme.org/

Margaret Williams & Professor Malcolm Hooper documents archive:
http://www.margaretwilliams.me/


ME Research UK (MERUK):
http://www.meresearch.org.uk/

ME Action UK:
http://www.meactionuk.org.uk/

25% ME Group:
http://www.25megroup.org/

The Young ME Sufferers Trust (TYMES Trust):
http://www.tymestrust.org/

Dx Revision Watch:
http://www.dxrevisionwatch.com/about

Sophia and ME:
http://www.sophiaandme.org.uk

Voices from the Shadows (documentary film / DVD):
http://www.voicesfromtheshadowsfilm.co.uk

Useful Reading for Professionals - 1:
http://medicalhypotheses.blogspot.co.uk/2008/07/zombie-science-dead-but-wont-lie-down.html

Useful Reading for Professionals - 2:
http://disciplinedminds.tripod.com/

Useful Reading for Professionals - 3:
http://www.bmj.com/content/348/bmj.g3725


Useful Reading for Professionals - 4:
http://www.bmj.com/content/348/bmj.g22?sso=