“…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. – Also see endnote [i] below]
http://www.cdc.gov/media/transcripts/t061103.htm
CONTENTS
/ SECTIONS:
1. What
ME is and what it is not.
2. ME
Recovery & Early Death Rates.
3. Internationally
Respected ME Guidelines & Expert Comment.
4. Disinformation,
Controversy & Vested Interests.
5. Concerns
About NICE/NHS Guidelines & Evidence Base.
6. The
Gibson Parliamentary Group Findings.
7. Concerns
about the MRC & PACE Trial.
9. Biomedical
Evidence Summaries & Key Papers/Books.
10. Useful
Websites/Links/Updates/Resources.
12. About
Anglia ME Action / Disclaimer.
13. Appendix-1. Brain Images: Exercise & Brain Blood Flow.
Myalgic
Encephalomyelitis or ME (myalgic= muscle-pain, encephalo= brain, myelitis= spinal-cord,
encephalomyelitis= inflammation of brain & spinal-cord) is a long-term
organic/biomedical illness and is NOT the same thing as 'Chronic Fatigue',
short-term post viral syndrome or 'myalgic encephalopathy' (see below). ME is not a
psychiatric or behavioral illness. ME has been in the professional medical
literature since the 1930s and has similarities to Multiple-Sclerosis, Post-Polio-Syndrome
& AIDS. Documented clinical/research abnormalities (see section 9 below)
include: immune system pathology and dysfunction; retroviral and other
infections; cardiovascular, endocrine and digestive systems pathology and
dysfunction; muscle, cellular, mitochondrial and genetic pathology and
dysfunction; oxidative stress; central nervous system (including brain and
spinal cord) pathology and dysfunction; end organ pathology and dysfunction and
early death in a significant minority of cases (see section 2 below). For
symptoms/signs and diagnostic information and discussion see sections 3 and 9
below.
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. 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, subscribed 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(CFS)) 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 (see section 9 below) 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 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. 4th 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 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 – 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.

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 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
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
And leading international ME specialist Dr Byron Hyde states:
“Recently an M.E. patient's
spine has been examined in the UK and the inflammatory nature was also
discovered. Myalgic Encephalitis is a diffuse inflammatory injury of the
capillaries at the level of the basement membrane of the brain. It makes no
sense to rename the horse and call it Myalgic Encephalopathy. All brain
pathologies involving brain tissue are
encephalopathies.
Let us stop fussing around and get back to the real problem and that is
investigating the patients.” [Dr Byron Hyde MD 2006]: www.nightingale.ca/
And also see: www.meactionuk.org.uk/Note_on_the_term_ME.htm
To
complicate matters, the term ‘Chronic
Fatigue Syndrome’ has been much used and abused by vested interests trying
to dishonestly re-label biomedical WHO-recognised ME/PVFS
as a psychiatric disorder: in spite of the large and growing body of
peer-reviewed biomedical evidence to the contrary. As Professor Malcolm Hooper
states, the renaming of ME to Chronic
Fatigue Syndrome (CFS) in 1988, giving misplaced emphasis to “fatigue”,
trivializes the substantial disability of the disease. Such abuses of
medical taxonomy allow medical insurance companies and benefits agencies to
potentially save billions of £s/$s across the globe and serves to mislead press
and public about the true documented nature of the complex physical disease
that is ME. This is hugely impacting upon public as well as private health and
welfare policy and caused a 2006 UK Parliamentary group of inquiry to caution:
“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.”
[Page 30 of the joint
Commons/Lords Group on the Scientific Research into ME (GSRME) Report –
see section 6 below].
www.erythos.com/gibsonenquiry/index.html
A NOTE ON THE TERM ‘FATIGUE’:
‘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.
The terms ‘Chronic Fatigue Syndrome’ or, worse still, ‘Fatigue Syndrome’ 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 use the term ‘Chronic Fatigue’ to describe Myalgic Encephalomyelitis / ME at all and only very reluctantly uses the term ‘Chronic Fatigue Syndrome / CFS’ as an alternative name for 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). 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) disorder in ICD-10-F.48. 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(CFS) ICD10-G93.3 is not the same illness as 'Fatigue Syndrome / FS' ICD-10-F.48 and the two categories should not be conflated[*].
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].
[*] 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:
Thus, some
biomedical ME campaigners/clinicians, if they use the misleading term ‘Chronic Fatigue Syndrome/CFS’ at all, have prefaced it with ‘ICD(10)’: to read ‘ICD-(10)
Chronic Fatigue Syndrome’
or ‘ICD-(10) CFS’ in an
attempt to ensure it is understood that they are referring to the biomedical
disorder classified by the WHO at ICD-10-G93.3
and not entirely separate psychological conditions classified by the WHO at
ICD-10-F48 and elsewhere. See for example Professor Malcolm Hooper's et al
document entitled: What is ME? What is CFS? Information for Clinicians
and Lawyers at:
www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm
Also
see: http://meactionuk.org.uk/G93-3-ICD-10-compilation.jpg
http://meactionuk.org.uk/G93-3-ICD-10-index-closeup.jpg
www.meresearch.org.uk/information/whatisme.html
www.who.int/classifications/icd/en/
And see: 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 discussion on the controversial United States CDC and DSM disease labelling
/ classification at:
www.name-us.org/index.html
www.co-cure.org www.cfids-me.org/
www.meactionuk.org.uk/DSM-V-submission.htm
ME is a
serious long-term and life changing disease with various viruses/infectious-agents and toxic
chemicals/stressors jointly implicated in causation. On 8 October 2009 the
USA Whittemore Peterson Institute published a study linking the
immune-compromising and prostate-cancer-causing XMRV retrovirus to ME/CFS
in the peer reviewed journal Science: Judy A Mikovits et al; Detection of an Infectious Retrovirus,
XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome; DOI:
10.1126/science.1179052. See:
www.sciencemag.org/cgi/content/abstract/1179052 and www.wpinstitute.org/xmrv/index.html
In response,
The Independent newspaper reported similar findings in blood taken in
London from 500 ME patients and heavily criticised the UK medical establishment for not taking ME more
seriously:
“Scientists could be on the
brink of a breakthrough. We must hope that they are. That would – at least – go
some way to compensating for the shameful manner in which sufferers were
treated for so long by the medical profession.”
http://www.independent.co.uk/opinion/leading-articles/leading-article-chronic-neglect-1799885.html
http://www.independent.co.uk/news/science/has-science-found-the-cause-of-me-1799944.html
A number of non-replicating
follow-up studies that did not subsequently find retroviral infection in
ME(CFS) patients were heavily criticised for poor quality - in terms of patient
selection criteria and the viral detection techniques used. Another qualitative
study did find retroviral infection. See Detection of MLV-related virus gene
sequences in blood of patients with Chronic Fatigue Syndrome and healthy blood
donors. Alter & Komaroff et al, PNAS, August 2010.
Doi: 10.1073/pnas.1006901107. www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html
ME patients
in the UK have faced partial bans on
donating blood for many years, as a result of retroviral findings however,
the UK Chief Medical Officer has stated that from 1st November 2010 the ban
will be life-long[ii]. Similar measures to protect the security of blood banks
are being taken in other countries around the world.
ME in fact
leads to a shorter life-span in a
significant minority of patients (see section 2 below). Some viruses and
other infectious agents have always been able to cause multi-system
neurological diseases (e.g. Polio). However, in addition to immune compromising
infections, with the massive growth in environmental toxic chemicals since the 1940s
[iii] and increased electromagnetic pollution [iv], the background load on
human immune, cellular, nervous, endocrine and anti-oxidant/detoxing enzyme systems
has increased substantially. ME also has similarities to Gulf War Syndrome
[v].
See
Professor Malcolm Hooper's peer-reviewed overview paper (regularly updated
online) entitled:
Myalgic
Encephalomyelitis: A Review with Emphasis on Key Findings in Biomedical
Research.
Journal of Clinical Pathology; 2007; 60:466-471. Doi:
10.1136/jcp.2006.042408.
http://jcp.bmj.com/cgi/content/abstract/60/5/466
For
a biomedical research findings overview up to 2005 see:
Illustrations
of Clinical Observations and International Research Findings from 1955 to 2005
that demonstrate the organic aetiology of Myalgic Encephalomyelitis /
Chronic Fatigue Syndrome. Malcolm Hooper, Eileen Marshall, Margaret Williams:
www.meactionuk.org.uk/Organic_evidence_for_Gibson.doc
Also see: Essential
investigations for people with ME/CFS? Margaret Williams. January 2008:
http://meactionuk.org.uk/Essential_investigations_for_people_with_ME.htm
And
see: Medication and ME/CFS Margaret Williams. August 2008.
http://www.meactionuk.org.uk/Medication_and_ME.htm
There
has been much misunderstanding and downright deceit (see sections 3 and 4
below) over what ME is and is not. See Professor Malcolm Hooper's et al
document entitled:
What is ME? What is CFS? Information for Clinicians and Lawyers.
www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm
Also
see: The Late Effects of ME - Can they be distinguished from the
Post-polio syndrome? By Consultant Microbiologist and ME Specialist, Dr Elizabeth (Betty)
Dowsett:
www.ott.zynet.co.uk/polio/lincolnshire/library/dowsett/lateeffectsme.html
And
see: Lost Voices – A Hidden Illness by Invest in ME:
www.investinme.org/LostVoicesBook/IiME%20Lost%20Voices%20home.htm
For
a further, referenced, biomedical research summary see section 9 below.
2. ME Recovery & Early Death Rates:
ME
has a very low
patient recovery rate[vi] and Consultant Microbiologist & ME specialist Dr
Elizabeth Dowsett
stated that some 10% of patients die early due to complications from ME - organ
failure and other factors[vii]. It is believed that a great number of such
ME-related early deaths are not correctly identified because they are simply
put down to heart-failure etc per se and not properly connected with ME as the
underlying cause. Moreover, it is arguable that the majority of life-long ME
patients have some life-span reduction due to increased oxidative stress etc.
See
Professor Leonard Jason's et al paper entitled: Causes of Death among
Patients with Chronic Fatigue Syndrome. DePaul University, Chicago,
Illinois, USA Health Care for Women International, 27:615–626, 2006.
Routledge. Copyright © Taylor & Francis Group, LLC. ISSN: 0739-9332 print /
1096-4665 online: DOI: 10.1080/07399330600803766
www.ingentaconnect.com/content/routledg/uhcw/2006/00000027/00000007/art00005?crawler=true
The tragic
death by ME of 32 year old Sophia Mirza
was recorded by a UK coroner in 2007 as the result of organ failure. It is also
alleged that psychiatric mistreatment/neglect contributed. See:
The Sophia Mirza Memorial Website – Coroner’s Comments/Death
Certificate:
http://www.sophiaandme.org.uk/index.html
Inquest Implications:
www.meactionuk.org.uk/Inquest_Implications.htm
See:
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:
http://angliameaction.org.uk/docs/CanadianOverviewUK.pdf
http://data.eastanglia.me.uk/pdfs/Canadian_ME_Overview_A4.pdf
See: Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment
Protocols (‘Canadian Criteria’ – Full Version). Bruce M. Carruthers, Anil Kumar Jain, Kenny L.
De
Meirleir,
Daniel L. Peterson, Nancy G. Klimas, A. Martin Lerner, Alison C. Bested, Pierre Flor-Henry,
Pradip Joshi, A. C. Peter Powles, Jeffrey A. Sherkey, Marjorie I. van de Sande.
Journal of Chronic Fatigue Syndrome. Volume 11, Number 1, 2003. At:
http://fm-cfs.ca/CFS-Protocol.pdf
Also
see: 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
See:
Chronic Fatigue
Syndrome: Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for
Psychiatrists.
Eleanor Stein MD FRCP(C).
http://www.cfids-cab.org/MESA/Stein.pdf
See:
The
Nightingale
Definition of Myalgic Encephalomyelitis (M.E.).
Dr Byron
Hyde, Nightingale Foundation, Toronto, Canada. Available at:
http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf
Dr Melvin Ramsay: Definitive Description of
ME:
http://meactionuk.org.uk/ramsey.html
The Complexities of Diagnosis.
Byron Hyde. In: Handbook of Chronic Fatigue Syndrome. Leonard A Jason et
al. John Wiley & Sons, Inc. 2003.
www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf
Research Descriptions of ME – ME Action UK:
http://meactionuk.org.uk/definition.html
4. Disinformation, Controversy and Vested Interests:
For
a brief introduction to ME politics and recent history see AMEA paper entitled: I SEE NO SHIPS: New Labour Health Policy
and Myalgic Encephalomyelitis (ME). Available online at:
http://angliameaction.org.uk/docs/new-labour-cfs-me-policy-ships.pdf
www.cfids-me.org/angliameaction/ships.html
For
the best and indispensable detailed overview of matters see: CORPORATE
COLLUSION. Professor Malcolm Hooper, Eileen Marshall &
Margaret Williams. A MUST READ document.
www.meactionuk.org.uk/Corporate_Collusion_2.htm
For
concerns and professional complaints about the Medical Research Council (MRC)
and Department of Work & Pensions (DWP) funded PACE Trial (PACE is the
acronym for Pacing Activity and Cognitive behavioural therapy, a randomised
Evaluation…) on ‘Chronic Fatigue Syndrome’ see: Magical Medicine: How to make a
Disease Disappear and Ethical and Scientific Concerns about the
MRC PACE Trial, both by Professor Malcolm Hooper, at:
www.meactionuk.org.uk/magical-medicine.htm
www.meactionuk.org.uk/MREC-complaint.htm
See:
The Mental Health Movement: Persecution of Patients? A
Consideration of the Role of Professor Simon Wessely and Other Members of the “Wessely School” in the Perception
of Myalgic Encephalomyelitis (ME) in the UK.
Background Briefing for the House of Commons Select Health Committee. Professor Malcolm Hooper.
At:
www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm
See: Proof
Positive? Evidence of the deliberate creation via social
constructionism
of “psychosocial” illness by cult indoctrination of State agencies, and the
impact of this on social and welfare policy. Eileen Marshall, Margaret Williams
30th August 2005. At:
www.meactionuk.org.uk/PROOF_POSITIVE.htm
See:
Concerns About Commercial Conflict of Interest Underlying the DWP
Handbook Entry on ME/CFS. Hooper, Marshall & Williams.
www.meactionuk.org.uk/HOOPER_CONCERNS_ABOUT_A_COMMERCIAL_CONFLICT_OF_INTEREST.htm
See:
Wessely, Woodstock and Warfare? Margaret Williams. 9th
August 2007. At:
www.meactionuk.org.uk/Wessely_Woodstock_and_Warfare.htm
See:
Defiance of Science: A comparison of quotations about ME/CFS from the
MERUK International Research Conference held on 25.05.07 in Edinburgh with
quotations from the Wessely School (who call it “CFS/ME”). Malcolm Hooper,
Margaret Williams. 12th July 2007
www.meactionuk.org.uk/Defiance_of_Science.htm
For concerns
surrounding the misguided use of Cognitive
Behavioural Therapy (CBT) and Graded
Exercise Therapy (GET) see Statements of Concern about Cognitive
Behavioural Therapy and Graded Exercise Therapy provided for the High Court
Judicial Review of February 2009 and Documented Pathology seen in
ME/CFS that contra-indicates the use of Graded Exercise Therapy, both
by Margaret Williams, at:
www.meactionuk.org.uk/JR_Statements_-_extracts.htm
www.meactionuk.org.uk/Documented_pathology_seen_in_ME-CFS.htm
For evidence
of Wessely School misrepresentations
of ME/CFS see QUOTABLE QUOTES Compiled by Margaret Williams on behalf of the charity
Invest in ME, April 2007, at:
http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf
See: A New and Simple Definition of Myalgic Encephalomyelitis and a
New and Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis And An
Irreverent History of Chronic Fatigue Syndrome. Dr Byron Hyde, Nightingale
Foundation, Toronto, Canada. Available at:
Coercion as Cure? Eileen Marshall &
Margaret Williams. 21st September 2007. Available at: http://meactionuk.org.uk/COERCION_AS_CURE.htm
Deliberate Dichotomy? Eileen Marshall &
Margaret Williams. 10 November 2004. Available at: www.meactionuk.org.uk/Deliberate_Dichotomy.htm
See book: Skewed:
Psychiatric Hegemony and the Manufacture of Mental Illness in Multiple Chemical
Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue
Syndrome by Martin J Walker, Slingshot Publications,
ISBN: 0-9519646-4X.
www.slingshotpublications.com/skewed.html
See
book: Osler’s Web; Inside the Labyrinth of the Chronic Fatigue Syndrome
Epidemic. Hillary Johnson. New York, Crown, 1996. 051770353X http://oslersweb.com/
www.amazon.com/Oslers-Web-Labyrinth-Syndrome-Epidemic/dp/051770353X
For general
concern about DWP welfare reforms see for example:
New-Labour’s Flawed
‘Pathway to Work’: ME Patients in a Corporate-Skewed Drift Net, Anglia ME Action, at:
http://angliameaction.org.uk/docs/corporate-drift-net.pdf
The New Statesman article Is Labour Abolishing Illness? By Professor Alison Ravetz: http://newstatesman.com/200805010024
BBC
News Investigative Report: New Benefit
System Labelled Unfit, 25 May 2010, at:
http://news.bbc.co.uk/1/hi/scotland/10159717.stm
For concerns about the less
than helpful behavior of selected UK ‘ME’ Charities see: Concerns
about Selected UK ‘ME’ Charities (MEA, AfME & AYME), Anglia ME Action, at:
www.angliameaction.org.uk/selected-charity-concerns
www.angliameaction.org.uk/docs/selected-charity-concerns.pdf
To further
examine corruption of medical science and healthcare and to put what has
happened to ME patients into overall context see the following:
Professor Bruce Charlton –
Infostat, cargo-cult science and the policy sausage-machine: NICE, CHI and the
managerial takeover of clinical practice:
http://neuroscientist.com/bgcharlton/cargocult.html
Professor Bruce Charlton –
Zombie Science – a sinister consequence of evaluating scientific theories
purely on the basis of enlightened self-interest, Medical Hypotheses (2008)
71 327-329, DOI: 10.1016/j.mehy.2008.05.018:
http://medicalhypotheses.blogspot.com/2008/07/zombie-science-dead-but-wont-lie-down.html
Film/Lecture (2009) – Professor
David Healy – The Future of Medical Care:
www.youtube.com/watch?v=X53r3zTQJNk
Film/Lecture: Dr Jeff Schmidt – author
of Disciplined
Minds:
http://activistteacher.blogspot.com/2010/03/jeff-schmidt-author-of-disciplined.html
Film - ‘Sicko’ - Michael Moore
(over optimistic account of UK state health & welfare provision but useful
insights into medical insurance industry counterparts) at:
www.michaelmoore.com/sicko/index.html
Film - ‘The Corporation’:
5. Concerns about UK NICE/NHS Guidelines and the
Evidence Base:
Such was/is the widespread and international concern over the UK NICE CG53 ‘CFS/ME’ Guideline development process (which completely excluded all genuine specialist ME Clinicians) and publication (in August 2007) that, in June 2008, two ME patients (with the support of doctors and scientists – including over 20 formal written expert statements) sought, and obtained permission in the Royal Courts of Justice, for a High Court Judicial Review of matters. See: http://angliameaction.org.uk/docs/JusticeCranston17June2008.pdf
An overview of the reasons for
bringing the case against NICE is set out in Prejudice-based Medicine –
Reasons for Judicial Review of the NICE Guideline on “CFS/ME” - available
at
www.meactionuk.org.uk/Prejudice-based_Medicine.htm
In his witness statement prepared for the High Court case, Dr Terry Mitchell (one of the UK National Health Service’s most experienced specialist ME/CFS hospital consultants) wrote:
“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,
Consultant Clinical Lead (CNCC) to one of the 12 national NHS specialist hospital
ME/CFS centres
- witness statement to the UK High Court available at:
www.angliameaction.org.uk/NICEJRdocs/Terry_Mitchell_WS.pdf
Dr Ian Gibson MP, former chairman of the House of Commons Science & Technology and Parliamentarians’ Inquiry into ME/CFS (see below) committees stated in his witness statement:
“…NICE claims that both CBT
and graded exercise therapy are supported by an adequate evidence base,
however, the GDG relied on a very small number of controversial randomized
control trials (RCTs). The patient selection criteria for participating in the trials
were too wide and therefore allowed non-ME/CFS sufferers to participate… I do
not believe that the NICE CFS/ME Guidelines are fit for purpose.” [Dr Ian Gibson MP, witness
statement to the High Court, 21 July 2008:
www.angliameaction.org.uk/NICEJRdocs/Ian_Gibson_WS.pdf
Indeed, in his erudite witness statement rebuttal of the NICE evidence-base, specialist ME scientist Dr Neil Abbot, of ME Research UK, concluded:
“In my professional
opinion, no rational reviewing body could have, on this rudimentary evidence
base before it, recommended cognitive behavioural therapy (CBT) and graded exercise
therapy (GET) as the main treatments for CFS/ME patients. In effect, the RCT
evidence base relied upon by NICE to produce Guideline 53 was of poor quality compared
with the evidence bases available for other illnesses, and NICE should not have
attributed it the usual weight attributed to RCT evidence in the hierarchy of
evidence.”
[Dr Neil Abbot, High Court witness statement:
www.angliameaction.org.uk//NICEJRdocs/Neil_Abbot_MERUK_WS.pdf
On such a highly questionable behavioural approach to ICD-ME (officially adopted in the UK: 2007); Dr Bruce Carruthers, Senior Fellow of the Canadian Royal College and principle lead of the international expert team that produced the highly respected ME Clinical Case Definition, states:
“Supporters 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.”
[Underline emphasis added.
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]: http://data.eastanglia.me.uk/pdfs/Canadian_ME_Overview_A4.pdf
http://angliameaction.org.uk/docs/CanadianOverviewUK.pdf
And, on the matter of patient selection criteria for CBT/GET study RCTs relied upon by NICE, the Parliamentary Gibson Group Inquiry Report (see section 6 below) unequivocally states:
“The
Group found that the international criteria paid far greater attention to the
symptoms of CFS/ME
while the Oxford criteria 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.” [Page 12]. www.erythos.com/gibsonenquiry/index.html
AN ABSOLUTE MUST READ document on this matter is:
Inadequacy of the York (2005) Systematic Review of the
CFS/ME Medical Evidence Base. Comment on Section 3 of: The diagnosis,
treatment and management of chronic fatigue syndrome (CFS)/(ME) in adults and
children, Work to support the NICE Guidelines... Anne-Marie Bagnall, et al, Centre for Reviews and
Dissemination, University of York. 2005. Professor Malcolm Hooper & Horace
Reid, January 2006. From: www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html
Another MUST READ document is:
Some
Concerns about the National Institute for Health &Clinical Excellence
(NICE) Draft Guideline issued on 29th September 2006 on Diagnosis and
Management of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis in
Adults and Children.
Margaret Williams / 25% ME:
www.meactionuk.org.uk/Concerns_re_NICE_Draft.pdf
And see: ADDENDUM to Some Concerns about the NICE Draft Guideline on “CFS/ME”. Margaret
Williams. At: http://www.meactionuk.org.uk/ADDENDUM_to_Response_to_NICE.htm
And
see: A NICE Conundrum? Margaret Williams, December 2008:
http://www.meactionuk.org.uk/A_NICE_Conundrum.htm
And
see: ME/CFS UK versus US Margaret Williams, December 2008:
http://www.meactionuk.org.uk/UK_v_US.htm
And
see: A NICE Dilemma? Margaret Williams, December 2008:
http://www.meactionuk.org.uk/A_NICE_DILEMMA.htm
And
see: Prejudiced-based Medicine? Reasons for Judicial Review of the NICE
Guideline on “CFS/ME” Margaret Williams, October 2008:
http://www.meactionuk.org.uk/Prejudice-based_Medicine.htm
And
see: NICE GIGO (Garbage-In, Garbage-Out)? Margaret Williams,
October 2007:
http://www.meactionuk.org.uk/NICE_-_GIGA.htm
And
see: Evidence of cardiovascular problems in ME/CFS that NICE disregarded
Margaret Williams, August 2008: www.meactionuk.org.uk/Cardiovascular.pdf
And
see: Immunological, neuroendocrine and neurological evidence (including
evidence of CNS inflammation) documented in ME/CFS that NICE chose to ignore in
production of its Clinical Guideline 53 Margaret Williams, August 2008:
www.meactionuk.org.uk/Immunol_and_neuroendo.htm
And
see: Background information and illustrations that CBT cannot improve
ME/CFS which NICE disregarded Margaret Williams, July 2008:
www.meactionuk.org.uk/Background_Information_re_CBT.pdf
And
see: Evidence that the Guideline Development Group that produced the NICE
Guideline on CFS/ME (CG53) failed to fulfil its remit (particularly in relation
to the potential dangers of Graded Exercise Therapy) Margaret Williams,
July 2008:
www.meactionuk.org.uk/FACTS_re_GET.htm
And see: Professor
Bruce Charlton – Infostat, cargo-cult science and the policy sausage-machine:
NICE, CHI and the managerial takeover of clinical practice:
http://neuroscientist.com/bgcharlton/cargocult.html
Unfortunately,
the Judicial Review of the process leading to the formation of CG53 did not
result in the ‘CFS/ME’ Guideline being quashed (see link below to view the full
Judgement) but this emphatically does not exonerate the Guideline as
NICE have disingenuously claimed. The fact is that judicial reviews of this
nature, as Justice Cranston pointed out (see link below), only look at narrow
legal procedural matters - as courts cannot fully judge the science of such Guidelines.
Moreover, the litigants contend that their case was subject to serious legal
malpractice which led to their claim against NICE not being correctly put
before the court and resulting in a mishearing. Formal complaints were
therefore subsequently lodged by the litigants – part of which was upheld. In
the meantime the growing biomedical evidence base further unmasks this grossly
“unfit for purpose” NICE Guideline and patients increasingly suffer in its
name. The struggle continues as patients and concerned professionals seek
further ways in which to challenge CG53. For further information on such
matters go to:
http://angliameaction.org.uk/docs/JusticeCranston17June2008.pdf
http://angliameaction.org.uk/NICEJRdocs/JUDGEMENT.pdf
6. Parliamentary ME Inquiry Group Findings:
See
The Report of
the UK Group on the Scientific Research into ME (GSRME), entitled: Inquiry
into the Status of CFS/ME and Research into Causes and
Treatment.
November 2006. At the GSRME House of Commons Website:
www.erythos.com/gibsonenquiry/index.html
NOTE: The GSRME was a cross party committee of inquiry with members from
both houses of the UK parliament, led by Dr Ian Gibson MP, that reported in
November 2006. Although the report was rightly criticised for not being as
clear-sighted and robust as it should have been it nevertheless made some
important and very telling comments and recommendations [underline emphasis
added]:
“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.” [Page 9].
“There is
a commonly held belief circulating that the World Health Organisation
(WHO) categorises
CFS/ME under
both neurology (i.e. disorders of the nervous system) and neurasthenia (mental
and behavioural
disorders or other neurotic disorders). Indeed
this is reported in medical textbooks. The Group found this assertion to be
incorrect. The International Classification of Diseases (ICD-10) document
produced by the WHO characterizes Post-viral Fatigue Syndrome (PVS) and ME
under Section G: ‘Diseases of the Nervous System.’ G93.3.” [Page 9].
“The Group
found that the international criteria paid far greater attention to the
symptoms of CFS/ME while the Oxford criteria 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. The Group feels that there is room for a
further review of the criteria which should be updated, in the light of the
peer reviewed and evidence based research done both internationally and in the
UK in the last 15 years.” [Page
12].
“There
have been numerous cases where advisors 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. It may
even be that assessment by a medical ‘expert’ in a field of high controversy
requires a different methodology of benefit assessment.” [Page 30].
“The Canadian
Criteria are a useful contribution to the attempt to define the clinical
condition of CFS/ME.” [Page 31].
“There
are arguments relating to whether ME and CFS are separate illnesses. Opinion
on this matter is split, both within the Group and in wider society. The only
way to resolve this dispute is through a massive further research programme involving
large patient groups.”
[Page 31].
“The Group
was very interested in the international evidence submitted and concerned as to
why this evidence has not been seriously examined in the UK. The Group
calls for a further Inquiry into the Scientific Evidence for CFS/ME by the
appropriately qualified professionals. This Inquiry should be commissioned by
government undertaken by an independent panel of scientific and medical
experts, including virologists, immunologists, biochemists etc
who can objectively assess the relevance and importance of the international
scientific data. There is a perception that much of the international research
is not peer reviewed. The Group has found this to not always be the case and
has received research published in UK and international journals.” [Page 31].
“ME and CFS have been
defined as neurological illnesses by the World Health Organisation. Various
clinical and epidemiological research studies in countries around the world
have suggested CFS/ME
to have a biomedical cause. The UK has
not been a major player in the global progress of biomedical research into CFS/ME. Although
some interesting biomedical research has been done in the UK precedence has
been given to psychological research and definitions. The Group believes
the UK should take this opportunity to lead the way in encouraging biomedical
research into potential causes of CFS/ME.
There is a great deal of frustration amongst the CFS/ME community
that the progress made in the late 1980s and early 1990s toward regarding CFS/ME as a
physical illness has been marginalised
by the psychological school of thought.” [Page 32].
“The Research
areas defined by the CMO
Report in 2002 have not been addressed. Further research is the single most
important area in this field.” [Page 33].
“There is a
need for diagnostic tests but this is likely to be dependent on a greater
understanding of possible causes.” [Page 33].
“There is a need
to undertake further research of post viral infective cause in carefully
controlled studies.”
[Page 33].
“The evidence
for a toxin aetiology
requires critical and controlled studies.
This includes research into possible causes, like pesticides.” [Page 33].
“Much more
study should be centred
on the reasons why some individuals are susceptible to developing the illness
or illnesses. These include further follow-up of immunological, endocrinological
and neurological disturbances.” [Page 33].
“The MRC should
call for research into this field recognising the need for a wide
ranging profile of research. The
committee would like to see a similar arrangement to the AIDS programme funded
previously by the MRC.” [Page 33].
“An
independent scientific committee must examine the wealth of international
research data. To exclude it from the debate is a great injustice to
patients.”
[Page 33].
“We recommend
that this condition be recognised
as one which requires an approach as important as heart disease or cancer.
There is no compelling evidence it is purely psychosocial.” [Page 33].
“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 with only an intense research programme can help
resolve. It is an illness whose
time has certainly come.” [Page
34]
7.
Concerns about the MRC and PACE Trial:
On 11th February 2010 a formal complaint was lodged by
Professor Malcolm Hooper with the Rt. Hon The Lord Drayson, Minister of State
with responsibility for the Medical
Research Council (Science and Innovation) about the “PACE” Clinical Trial
of behavioural modification interventions for people with Myalgic
Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS).
PACE is the acronym for Pacing, Activity, and Cognitive behavioural
therapy, a randomised Evaluation, interventions that, according to one of the
Principal Investigators, are without theoretical foundation.
The MRC’s PACE Trial seemingly
inhabits a unique and unenviable position in the history of medicine. It is
believed to be the first and only clinical trial that patients and the
charities that support them have tried to stop before a single patient could be
recruited. It’s is joint funding by the Department
for Work and Pensions (DWP) is viewed to be an unethical conflict of
interest.
Since 1993, the giant US permanent health insurance company UNUM Provident has been advising the UK DWP about the most effective ways of
curtailing sickness benefit payments. The PACE Trial is run by psychiatrists of
the Wessely School, most of whom work
for or have links to the medical and permanent health insurance industry. These
psychiatrists insist – in defiance of both the World Health Organisation (WHO) ICD-10 and the significant
biomedical evidence about the nature of it -- that “CFS/ME” is a behavioural
disorder, into which they have subsumed ME, a classified neurological disorder
whose separate existence they deny. Their beliefs have been repudiated in
writing by the WHO and caused a 2006 UK
Parliamentary group of inquiry to caution thus:
“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.”
[Page 30 of the joint
Commons/Lords Group on the Scientific Research into ME (GSRME) Report –
see section 6 below].
www.erythos.com/gibsonenquiry/index.html
In 1992, the medical-insurance-industry-linked Wessely School gave directions that in cases of ME/CFS, the first
duty of the doctor is to avoid legitimisation of symptoms; in 1994, ME was
described by Professor Simon Wessely as merely “a belief”; in 1996
recommendations were made that no investigations should be performed to confirm
the diagnosis and in 1999 patients with ME/CFS were referred to as “the
undeserving sick”.
The complaint to Lord Drayson is supported by a 442 page Report which
addresses areas of major concern about the PACE Trial.
These include apparent coercion and exploitation of patients, flawed
methodology, apparent lack of scientific rigour, apparent failure to adhere to
the Declaration of Helsinki, the unusual personal financial interest of the
Chief Investigator, the vested financial interests of the Principal
Investigators and others involved with the trial and the underlying
non-clinical purpose of the trial.
The psychiatrists’ unproven beliefs and assumptions are presented as
fact and trial therapists have been trained to provide participants with
misinformation; therapists have also been trained to advise participants to
ignore symptoms, a situation that may in some cases result in death.
See:
Magical
Medicine: How to make a Disease Disappear and Ethical and Scientific Concerns
about the MRC PACE Trial, both by Professor Malcolm Hooper, at:
www.meactionuk.org.uk/magical-medicine.htm
www.meactionuk.org.uk/MREC-complaint.htm
Over twenty professional witnesses provided Statements in support of the
Judicial Review of the NICE Guideline on “CFS/ME” heard in February 2009 in the
High Court in London. They were specifically written in support of the attempt
to have the Guideline quashed as “unfit for purpose” and they express concern
about the recommendation by NICE that the only management of ME should be CBT
and GET (the same interventions that are the subjects of the Medical Research
Council’s PACE Trial).
There is an extensive literature from 1956 to date on the significant
pathology that has been repeatedly demonstrated in ME/CFS (but not in “CFS/ME”
or “chronic fatigue”); this can be accessed on the ME Research UK and ME Action
UK websites at:
http://www.meresearch.org.uk/information/researchdbase/index.html
http://www.meactionuk.org.uk/Organic_evidence_for_Gibson.htm
According to Professor Nancy Klimas, for example, ME can be as severe as
congestive heart failure and the most important symptom of all is
post-exertional relapse (presentation at the ME Research UK International
Conference held in Cambridge in May 2008).
Unique vascular abnormalities have also been demonstrated in ME/CFS,
with markers of oxidative stress. Oxidative stress is caused by highly reactive
molecules known as free radicals circulating in the bloodstream of people with
ME/CFS and results in cell injury. Oxidative stress levels are raised in ME/CFS
and are associated with clinical symptoms. (Kennedy G, Spence VA, McLaren M,
Hill A, Underwood C, Belch JJF. Free Radical Bio Med. 2005;39:584-589).
Exercising muscle is a prime contender for excessive free radical
generation (Niess AM, Simon P. Front Biosci. 2007 Sep 1;12:4826-38) and
research has shown that many patients with ME/CFS may have an inflammatory
condition and be in a ‘pro-oxidant’ state (Klimas NG, Koneru AO. Curr Rheumatol Rep. 2007;9(6):482-7).
For more concerns
and evidence surrounding the misguided use of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) see Statements of Concern about
Cognitive Behavioural Therapy and Graded Exercise Therapy provided for the High
Court Judicial Review of February 2009 and Documented Pathology seen in
ME/CFS that contra-indicates the use of Graded Exercise Therapy, both
by Margaret Williams, at:
www.meactionuk.org.uk/JR_Statements_-_extracts.htm
www.meactionuk.org.uk/Documented_pathology_seen_in_ME-CFS.htm
Dr Ian Gibson MP, former chairman of the House of Commons Science & Technology and Parliamentarians’ Inquiry into ME/CFS (see above) committees, for example, stated in his witness statement:
“…the guidelines understate
the potential harm with graded exercise. The study by A Peckerman, J Lamanca et
al, for example, found that in severe cases ME/CFS patients may also develop
reduced circulation which may lead to heart conditions: so graded exercise may
be potentially fatal for them.”
www.angliameaction.org.uk/NICEJRdocs/Ian_Gibson_WS.pdf
Also see:
-Is
the Chronic Fatigue Syndrome an Exercise Phobia? A case control study. W C R Weir et al, Journal of Psychosomatic Research. Doi:
10.1016/j.psychores.2005.02.002.
-Is
Physical Deconditioning a Perpetuating Factor in Chronic Fatigue Syndrome? A
controlled study on maximal exercise performance and relations with fatigue,
impairment and physical activity. E Bazelmans et al, Psychological Medicine, 2001, 31, 107-114.
-ME Patient Exercise – Consequences upon Brain Blood Flow. The Negative
Effects of Exercise on an ME/CFS Dysfunctional Brain. Extracts from The Clinical and Scientific Basis of ME/CFS by
Byron Hyde MD et al. ISBN:
0-969-5662-0-4. Available at: www.nightingale.ca and said extracts
available at:
www.angliameaction.org.uk/docs/Dr-Byron-Hyde--SPECT-Scans--Post-Exercise--Brain-Blood-Flow.pdf
-Chronic
Fatigue syndrome: Harvey and Wessely’s (bio)psychosocial model versus a
bio(psychosocial) model based on inflammatory and oxidative and nitrosative
stress pathways. M Maes & F N M Twisk. BMC
Medicine 2010, 8:35.
www.biomedcentral.com/1741-7015/8/35
-Abnormal
impedance cardiography predicts symptom severity in chronic
fatigue syndrome of disease. Peckerman A, Lamanca JJ, Dahl KA, et al. Am J Med Sci. 2003;
326:55–60.
www.cfids-cab.org/MESA/Peckerman.pdf
A NOTE ON CBT/GET:
Like many biomedical ME specialists, AMEA recognises that secondary/co-morbid
psychiatric complications, such as clinical depression, may arise with any
long term physical illness, including ME, and require psychiatric interventions
– including standard CBT.
However, AMEA and biomedical ME specialists do not agree with the approach set out by the UK Wessely School of psychiatrists or NICE ‘CFS/ME’ Guideline 53 that:
1. Unscientifically conflates primary physical illness
with mental/behavioural illness.
2. Recommends inappropriate non-standard CBT be
employed (to modify patients’ alleged false illness beliefs and alleged fear of
exercise/symptoms) along with GET, including aerobic exercise, (to resolve
alleged unnecessary unfitness and muscle-deconditioning).
3. Negligently refuses adequate specialised biomedical
diagnostic and assessment techniques indicated in the scientific literature
that demonstrate ME illness beliefs are not in fact false and that GET
is contraindicated and potentially fatal.
Such an approach is not genuinely evidence-based and is contraindicated in the scientific literature. See, for example:
Statements
of Concern about Cognitive Behavioural Therapy and Graded Exercise Therapy
provided for the High Court Judicial Review of February 2009 by
Margaret Williams at:
www.meactionuk.org.uk/JR_Statements_-_extracts.htm
Documented
Pathology seen in ME/CFS that contra-indicates the use of Graded Exercise
Therapy by Margaret Williams, at:
www.meactionuk.org.uk/Documented_pathology_seen_in_ME-CFS.htm
Is
the Chronic Fatigue Syndrome an Exercise Phobia? A case control study. W
C R Weir et al, Journal of Psychosomatic Research. Doi:
10.1016/j.psychores.2005.02.002.
Is
Physical Deconditioning a Perpetuating Factor in Chronic Fatigue Syndrome? A
controlled study on maximal exercise performance and relations with fatigue,
impairment and physical activity. E Bazelmans et al, Psychological
Medicine, 2001, 31, 107-114.
ME
Patient Exercise – Consequences upon Brain Blood Flow. The Negative Effects of
Exercise on an ME/CFS Dysfunctional Brain. Extracts from The
Clinical and Scientific Basis of ME/CFS by Byron Hyde MD et al. ISBN: 0-969-5662-0-4.
Available at: www.nightingale.ca and
said extracts available at:
www.angliameaction.org.uk/docs/Dr-Byron-Hyde--SPECT-Scans--Post-Exercise--Brain-Blood-Flow.pdf
Chronic Fatigue syndrome: Harvey and Wessely’s (bio)psychosocial
model versus a bio(psychosocial) model based on inflammatory and oxidative and
nitrosative stress pathways. M Maes & F
N M Twisk. BMC Medicine 2010, 8:35.
www.biomedcentral.com/1741-7015/8/35
To use a comparative illustration: due to the
distress of their long-term physical illness, Rheumatoid Arthritis patients may
develop co-morbid depression and other secondary psychiatric problems and be
offered CBT to help address these problems. The form of CBT they are given
however does not seek to brainwash them into falsely believing they do not have
joint pain/ inflammation, it is not given as a substitute for proper physical examination
and treatment of the underlying/primary biomedical disease and neither is it
given with advice to exercise without proper regard to signs, science and pain:
such a perverse approach would be rightly condemned as unscientific and
barbaric yet it is exactly analogous to what UK ME patients are being subjected
to by the NHS.
9. Biomedical Evidence Summaries & Key
Scientific Papers / Books:
First; to
again Quote Harvard's Professor Anthony Komaroff:
“…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. – Also see endnote [i] below]
http://www.cdc.gov/media/transcripts/t061103.htm
For
a referenced outline overview of key biomedical research findings up until 2009
see the summary at the end of this section – note that the numbered research references
within it are listed in section 11 (Endnotes and References) at the end of this
document [viii].
For
a very graphical view of what happens when ME patients exercise see APPENDIX-1:
M.E. Patient Exercise – Consequences upon Brain Blood Flow at the end
of this document and at:
http://angliameaction.org.uk/docs/Dr-Byron-Hyde--SPECT-Scans--Post-Exercise--Brain-Blood-Flow.pdf
Excellent regularly updated peer-reviewed overview paper - see:
Myalgic
encephalomyelitis: a review with emphasis on key findings in biomedical
research.
Professor M Hooper. J Clin Pathol 2007; 60:466–471. Doi:
10.1136/jcp.2006.042408.
http://jcp.bmj.com/cgi/content/abstract/60/5/466
For
a biomedical research overview up to 2005 see:
Illustrations
of Clinical Observations and International Research Findings from 1955 to 2005
that demonstrate the organic aetiology of Myalgic Encephalomyelitis /
Chronic Fatigue Syndrome. Malcolm Hooper, Eileen Marshall, Margaret Williams (For
Gibson Inquiry):
www.meactionuk.org.uk/Organic_evidence_for_Gibson.doc
For
a summary of the documented involvement of viruses in ME/CFS see Documented
involvement of viruses in ME/CFS by Margaret Williams, 30th
December 2009. Available at:
http://meactionuk.org.uk/Documented-involvement-of-viruses-in-ME.pdf
For
updates on ME and related research - including downloadable pdf
abstracts/comments on all published papers see: M.E. Research UK (MERUK):
A Scotland
based biomedical ME research/ information organization led by Dr Vance Spence,
Honorary Senior Research Fellow, University of Dundee Medical School:
For
international research & ME issues updates also see Co-Cure at: www.co-cure.org/
and
Phoenix Rising at: www.aboutmecfs.org/ http://forums.aboutmecfs.org/
Also see the
following key research papers/references:
Detection of
an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue
Syndrome.
Mikovits JA, Dean M, Silverman RH et al. Science. 2009, 326:585-589.
www.sciencemag.org/cgi/content/abstract/1179052
www.wpinstitute.org/xmrv/index.html
Detection of
MLV-related virus gene sequences in blood of patients with Chronic Fatigue
Syndrome and healthy blood donors. Alter & Komaroff et al, PNAS,
August 2010.
Doi:
10.1073/pnas.1006901107.
www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html
Chronic Fatigue Syndrome and mitochondrial dysfunction. Sarah Myhill,
Norman E Booth, John McLaren-Howard. Int J Clin Exp Med (2009) 2, 1-16.
Seven Genomic Subtypes of Chronic Fatigue Syndrome / Myalgic
Encephalomyelitis (CFS/ME): a detailed analysis of gene networks and clinical
phenotypes. Jonathan Kerr et al. Journal of Clinical
Pathology. 5 Dec 2007. Doi: 10.1136/jcp.2007.053553.
http://jcp.bmj.com/cgi/content/abstract/jcp.2007.053553v1
Review: Chronic Fatigue Syndrome. L D Devanur
& J R Kerr. Journal of Clinical Virology xxx (2006) xxx-xxx; JCV-1120; doi:10.1016/j.jcv.2006.08.013.
www.cfids-cab.org/rc/Devanur.pdf
Abnormal
impedance cardiography predicts symptom severity in chronic
fatigue syndrome of disease. Peckerman A, Lamanca JJ, Dahl KA, et al. Am J Med Sci. 2003;
326:55–60.
www.cfids-cab.org/MESA/Peckerman.pdf
CFS: The Heart of the Matter - 2006 Dr Paul Cheney Seminar DVD
www.dfwcfids.org/videos/video200609cheney_about.shtml
Overview
document of Dr Cheney’s DVD presentation:
www.dfwcfids.org/medical/cheney/heart04.part1a.htm
CFS is Low Output Heart Failure Secondary to Mitochondrial Failure. Dr Sarah
Myhill
www.drmyhill.co.uk/article.cfm?id=381
Oxidative Stress Levels are Raised in Chronic Fatigue Syndrome and are
Associated with Clinical Symptoms. Gwen Kennedy, Vance Spence et al. Free Radical
Biology & Medicine: 39 (2005) 584-589. DOI:
10.1016/j.freeradbiomed.2005.04.020.
www.cfids-cab.org/rc/Kennedy.pdf
Nitric Oxide Synthase Partial Uncoupling as a Key Switching Mechanism
for the NO/ONOO- Cycle. Professor Martin Pall. Medical Hypotheses (2007) 69,
821-825. Doi: 10.1016/j.mehy.2007.01.070. www.cfids-cab.org/rc/Pall-1.pdf
Book:
Explaining “Unexplained Illnesses”. Professor Martin L Pall.
ISBN: 978-0-7890-2389-6:
http://www.investinme.org/Documents/PDFdocuments/Martin%20Pall%20Book.pdf
http://www.amazon.com/Explaining-Unexplained-Illnesses-Fibromyalgia-Post-Traumatic/dp/078902389X
Chronic Fatigue syndrome is Associated with Chronic Enterovirus
Infection of the Stomach. John K S Chia & Andrew Y Chia. Journal of
Clinical Pathology 2007, 0:1-6. DOI: 10.1136/jcp.2007.050054.
http://jcp.bmj.com/cgi/content/abstract/jcp.2007.050054v1
Use of Valganciclovir in Patients with Elevated Antibody Titres against
Human Herpesvirus-6 (HHV-6) and Epstein-Barr Virus (EBV) who were experiencing
central nervous system dysfunction including long-standing fatigue. Jose G
Montoya et al. Journal of Clinical Virology; 37 Suppl. 1 (2006) S33-S38.
www.cfids-cab.org/rc/Kogelnik.pdf
Chronic fatigue Syndrome: The Need for Subtypes. Professor
Leonard A Jason et al. Neuropsychology Review, Vol. 15, No.1, March
2005. DOI: 10.1007/s11065-005-3588-2.
http://cfids-cab.org/MESA/Jason-7.pdf http://www.co-cure.org/Jason-7.htm
Functional neuroimaging correlates of mental fatigue induced by
cognition among chronic fatigue syndrome patients and controls. Dane B. Cook,
Patrick J. O’Connor, Gudrun Lange, Jason Steffener. PII:
S1053-8119(07)00127-9. DOI: 10.1016/j.neuroimage.2007.02.033.
Reference: YNIMG 4490. NeuroImage: 2007.
www.cfids-cab.org/rc/Cook-2.pdf
And see MERUK article: Non-invasive structural and functional neuroimaging in ME/CFS at:
www.meresearch.org.uk/information/publications/neuroimage.html
Causes
of Death among Patients with Chronic Fatigue Syndrome. Leonard A. Jason, Karina Corradi, Sara Gress, Sarah
Williams, and Susan Torres-Harding. DePaul University, Chicago, Illinois,
USA Health Care for Women International, 27:615–626, 2006. Routledge.
Copyright © Taylor & Francis Group, LLC. ISSN: 0739-9332 print / 1096-4665
online: DOI: 10.1080/07399330600803766.
http://www.cfids-cab.org/cfs-inform/Prognosis/jason.etal.06.txt
www.ingentaconnect.com/content/routledg/uhcw/2006/00000027/00000007/art00005?crawler=true
The Complexities of Diagnosis.
Byron Hyde. In: Handbook of Chronic Fatigue Syndrome. Leonard A Jason et
al. John Wiley & Sons, Inc. 2003.
www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf
The
Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue
Syndrome. Byron Marshall Hyde M.D. et al. The Nightingale Research Foundation. ISBN: 0-9695662-0-4.
www.nightingale.ca/index.php?target=bookoffer
Book: Enteroviral and Toxin Mediated Myalgic Encephalomyelitis /
Chronic Fatigue Syndrome and Other Organ Pathologies. Dr John Richardson.
Haworth Press, 2001. ISBN: 0-7890-1128-X.
http://www.haworthpress.com/books/default.asp
www.amazon.com/Enteroviral-Mediated-Encephalomyelitis-Syndrome-Pathologies/dp/0789011271
Outline Overview of key facts and Biomedical Research findings up until 2009:
The renaming of ME to Chronic Fatigue Syndrome (CFS) in 1988, giving misplaced emphasis to “fatigue”, trivializes the substantial disability of the disease [1] – which can extend to the wheelchair or bed-bound requiring 24 hour care with severe cases presenting with paresis, seizures, intractable savage headaches and life threatening complications.
Amorphous definitions and
diagnostic symptom criteria have contaminated study cohorts and corrupted
research data [2-10].
ME
may include clinical syndromes linked to infectious agents and toxic exposures [11-15] – including Epstein
Barr virus, ciguatoxin 13, organophosphates and organochlorines [12-14]. ME has some similarities to
Multiple-Sclerosis, Post-Polio-Syndrome and AIDS.
ME Prevalence estimates are
235-700 per 100,000 affecting all socio-economic and ethnic groups, and men and
women of all ages [16-21]
– more prevalent than AIDS, lung or breast cancer [19].
Disease impact research [22-26] – shows that quality
of life is equivalent to late stage AIDS [17] [27], chronic obstructive lung
disease [25] [28], heart disease and end stage renal failure [29].
Some patients experience recovery (average 7yrs [17]), some partially recover and a significant proportion (25% [20]) are permanently incapacitated [17-20] [22-23].
Documented and referenced clinical/research abnormalities include:
- Immune system signs and pathology: with chronic immune activation
and dysfunction [24]
[30-32]; retroviral infection [167, 168], enteroviral
infection [34-41], EBV infection [42-47], HHV-6/7 infection [43] [45-50] and
other infections with evidence
of persistent viral infection [33], activation of the 2-5A anti-viral pathway
[47] [51-56], low natural killer cells and cytotoxicity
[33] [47] [54] [57-63], T-cell abnormalities [59] [61-62] [64-66],
pro-inflammatory cytokines and inflammation [66-72], increased cell apoptosis
(death) [73-74] and allergy [54] [75-77].
- Abnormal immuno-genetic expression & dysfunction [61] [66] [78-81] [114].
- Brain/Central
Nervous System, including: objective measurement of dysfunction [54] [82-86] with deficits in working memory,
concentration, information processing [87-95], autonomic function [96-98]
(incl.
neurally mediated hypotension
and orthostatic intolerance); regional brain hypoperfusion abnormalities [99-106] by SPECT, white and
grey matter abnormalities [106-112] by MRI, inflammation [66] [106-107]
[113-114],
hypomyelination [83] [113-114],
neurotransmitter [115-116] [119] and metabolic dysfunction [117-121] by MRS/PET
and abnormal spinal fluid proteins [122-123].
- Dysfunctional Endocrine System including: impaired activation of the hypothalamic-pituitary-adrenal
(HPA) axis [124-131] and abnormalities of neuroendocrine-genetic expression
[78].
- Heart
and Circulatory System: hypoperfusion
[54] [83] [99-106] [132-136], impaired vascular control [27] [134-137] (incl.
abnormal response to acetylcholine), low blood volume [134-135], vasculitis [136-137] (incl. raised oxidative stress,
inflammation and arterial stiffness [138-139]) and heart dysfunction [132]
[135] [140-141].
- Muscular:
structural and biochemical
abnormalities [38] [68] [89] [142-148] including impaired muscle recovery after
exercise [149-154] (exercise responsive gene expression abnormal, worsening
after exercise [155]).
- Gastrointestinal dysfunction [156-158] including food intolerance
[159-160] and IBS [156] [161].
- Mitochondrial dysfunction [38] [82] [125] [162-163] including abnormal
mitochondrial associated gene expression 164 and ion transport channelopathy [155] [165-166].
The above is a very brief
summary of what now amounts to thousands of international peer-reviewed scientific
research papers documenting physical/biomedical pathology in ME patients[i].
The body of biomedical research findings continues to grow in spite of the
psychiatric bias of the establishment and lack of funding for qualitatively
excellent biomedical research. There is a desperate and very urgent need to
fund more biomedical ME studies. Further information on such research is
available using the endnotes / references below and via the AMEA ME Research and Links &
Resources pages at:
10. Useful Websites/Links/ Updates/Resources:
TRUSTED KEY RESOURCES FOR UK MYALGIC ENCEPHALOMYELITIS ACTIVISM:
ME Action UK - The Main UK
biomedical ME activists and documents archive website:
Invest in ME – An excellent UK
campaigning/info charity website sponsoring accredited biomedical professional
conferences open to all Medical and Research Professionals:
25% ME Group for the
Severely Affected –
the best UK adult support biomedical ME website:
Stonebird – Greg & Linda Crowhurst’s excellent UK documentation and
campaigning platform for those with severe ME:
Professor
Malcolm Hooper
– Extensive Documents-Archive/Contact at:
Margaret
Williams –
Extensive Documents-Archive/Contact at:
ME Research UK
(MERUK) – Scotland based biomedical ME research/info organization led by Dr
Vance Spence, Honorary Senior Research Fellow, University of Dundee Medical
School: Website includes downloadable pdf abstracts/comments on all
published papers:
www.meresearch.org.uk/index.html
TYMES Trust – The Young ME Sufferers Trust website (UK):
RiME – Biomedical Campaign &
Letter-writing Group website:
Phoenix
Rising ME/CFS (Chronic Fatigue Syndrome) Forums/Website – Cort Johnson’s USA-based
ME/CFS resource:
Co-Cure – Best international ME/FM
research/issues updates website:
[Note; for concerns about the
less than helpful behaviour of selected UK ‘ME’ Charities not included above
see: Concerns about Selected UK ‘ME’ Charities, Anglia ME Action]:
www.angliameaction.org.uk/selected-charity-concerns
www.angliameaction.org.uk/docs/selected-charity-concerns.pdf
USEFUL ACTIVISM/CHARITES/ME-INFO
(Alphabetical Order):
Alison
Hunter Memorial Foundation -
Australian biomedical ME website:
Axford’s Abode
– ME/CFS Issues & Research Information:
http://freespace.virgin.net/david.axford/me/me.htm
CFS/FM Support
Group (info on Dr Paul Cheney) – Dallas/Fort Worth –
USA:
http://www.dfwcfids.org/index.shtml
Co-Cure – Best international ME/FM
research/issues updates website: www.co-cure.org/
European ME Alliance - a grouping of European organisations who are involved in
supporting patients suffering from myalgic encephalomyelitis (ME or ME/CFS) and are campaigning for
funding for biomedical research:
Georgina
Downs – UK Pesticides Campaign:
Professor
Malcolm Hooper
– Extensive Documents-Archive/Contact at:
Hummingbird’s Guide to ME –
Australian Activism:
www.ahummingbirdsguide.com/index.htm
Invest in ME – An excellent UK
campaigning/info charity website sponsoring accredited biomedical professional
conferences open to all Medical and Research Professionals:
ME Action UK - The Main UK
biomedical ME activists and documents archive website:
ME Research UK
(MERUK) – Scotland based biomedical ME research/info organization led by Dr
Vance Spence, Honorary Senior Research Fellow, University of Dundee Medical
School: Website includes downloadable pdf abstracts/comments on all
published papers:
www.meresearch.org.uk/index.html
M.E.
Society of America
– USA:
www.cfids-cab.org/MESA/index.html
NAME-US
– USA
National Alliance for Myalgic Encephalomyelitis campaigning for proper disease
taxonomy and recognition:
National
ME/FM Action Network –
Canadian ME/FM Organisation:
Osler’s
Web (Hillary Johnson) –
Important USA-based international ME website and resource:
Phoenix
Rising ME/CFS (Chronic Fatigue Syndrome) Forums/Website – Cort Johnson’s USA-based
ME/CFS resource:
RiME – Biomedical Campaign &
Letter-writing Group website:
Sophia and ME – Excellent UK Sophia Mirza Memorial/ME-Information Website:
Stonebird – Greg & Linda Crowhurst’s excellent UK documentation and
campaigning platform for those with severe ME:
The ME and CFS
Information Page – Mary Schweitzer PHD
– USA:
The
National CFIDS Foundation
– USA:
The
NICE Guidelines Blog
– ‘Dr Speedy’ and ME in Search of Medical Honesty:
http://niceguidelines.blogspot.com
The Sophia Mirza Memorial Website – Includes Coroner’s Comments/Death
Certificate:
http://www.sophiaandme.org.uk/index.html
TYMES Trust – The Young ME Sufferers Trust website (UK):
25% ME Group for the
Severely Affected –
the best UK adult support biomedical ME website:
Margaret
Williams –
Extensive Documents-Archive/Contact at:
CLINICIANS/RESEARCHERS/DIAGNOSTICS (Alphabetical
Order):
Dr
David Bell MD
– USA:
Biolab Medical Unit – UK/London:
Dr
Joseph Brewer MD
– USA:
CFS Research Foundation – Funds biomedical research/Dr
Jonathan Kerr: website:
Dr
Derek Enlander
– USA:
European ME Alliance - a grouping of European organisations who are involved in
supporting patients suffering from myalgic encephalomyelitis (ME or ME/CFS) and are campaigning for
funding for biomedical research:
European Society for ME – Research & Knowledge – Scientists
think tank and discussion forum:
HHV-6
Foundation –
USA-based Human Herpes Virus 6 research – Annette
Whittemore:
Professor
Malcolm Hooper
– Extensive Documents-Archive/Contact at:
IACFS/ME – International
Association for CFS/ME – Dr Fred
Friedberg, Dr Jonathan Kerr –
USA: www.iacfsme.org
Professor
Leonard Jason
– USA:
http://condor.depaul.edu/~ljason/cfs/
Dr
Nancy Klimas MD
– USA:
http://medicine.med.miami.edu/x640.xml
Dr
Sarah Myhill
– UK:
Dr
Charles Lapp MD
- Hunter-Hopkins Center – USA:
Dr
Benjamin Natelson
– Pain & Fatigue Study Centre – USA:
www.painandfatigue.com/dr_natelson.html
Nightingale
Research Foundation –
Canadian ME Specialist Dr Byron Hyde:
Professor
Martin Pall –
School of Molecular Biosciences - Washington State University - USA:
http://bioinformatics.wsu.edu/faculty/smb_emeritus_dir.htm
http://www.investinme.org/MartinPall.htm
Red
Laboratories
– Belgium:
Dr
Robert Suhadolnik
– USA:
http://astro.ocis.temple.edu/~rjs/home.html
The
Cheney Clinic
- Dr Paul Cheney MD – USA:
The
Enterovirus Foundation
– Dr John Chia – USA:
The
Treatment Centre for Chronic Fatigue Syndrome (CFS) – Dr Martin Lerner – USA:
www.cfsviraltreatment.com/index.html
Viral
Immune Pathology Diagnostics (VIP DX) – USA:
Whittemore
Peterson Institute for Neuro-Immune
Disease – groundbreaking
USA-based research on XMRV (retrovirus) Annette
Whittemore, Dr Judy Mikovits, Dr Daniel Peterson:
World Health Organisation (WHO):
www.who.int/classifications/icd/en/
FOR FOUR HIGHLY QUESTIONABLE &
CONTROVERSIAL OFFICIAL UK ‘CFS/ME’
SETS OF GUIDELINE DOCUMENTATION SEE THE FOLLOWING:
NICE (National Institute
for Health and Clinical Excellence) –
‘Chronic Fatigue Syndrome / Myalgic
Encephalomyelitis (or Encephalopathy)’ Diagnosis and Management guidelines at:
http://guidance.nice.org.uk/CG53
NHS (National
Health Service)
Plus: Occupational Aspects of the Management of Chronic Fatigue Syndrome: a
National Guideline
http://www.nhsplus.nhs.uk/providers/images/library/files/guidelines/CFS_guideline.pdf
http://www.nhsplus.nhs.uk/providers/clinicaleffectiveness-guidelines-evidencebased.asp
DWP (Department of Work &
Pensions): What is Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME)?
www.dwp.gov.uk/medical/med_conditions/major/cfs/
RCPHC
(Royal College of Paediatrics
and Child Health):
http://www.rcpch.ac.uk/doc.aspx?id_Resource=1480
http://www.rcpch.ac.uk/Research/ce/RCPCH-guidelines
OTHER IMPORTANT UK OFFICIAL / PARLIAMENTARY
DOCUMENTS:
A
report of the CFS/ME Working Group: Report to the Chief Medical Officer of an
independent working group –
UK Department of Health:
www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4064840
Report of the UK National Task Force on Chronic
Fatigue Syndrome, Postviral Fatigue Syndrome and Myalgic Encephalomyelitis – 1994 - Report funded jointly by the Department of Health and the charity
Westcare: now out of print but see pages 47ff of CORPORATE
COLLUSION, by Professor Malcolm Hooper, Eileen Marshall & Margaret Williams, at: www.meactionuk.org.uk/Corporate_Collusion_2.htm
Report of the Gibson Group
on the Scientific Research into ME (GSRME),
UK House of Commons Website:
www.erythos.com/gibsonenquiry/index.html
INTERNATIONALLY RESPECTED CLINICAL
& DIAGNOSTIC RESOURCES:
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:
http://angliameaction.org.uk/docs/CanadianOverviewUK.pdf
http://data.eastanglia.me.uk/pdfs/Canadian_ME_Overview_A4.pdf
Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment
Protocols (‘Canadian Criteria’ – Full Version). Bruce M. Carruthers, Anil Kumar Jain, Kenny L.
De
Meirleir,
Daniel L. Peterson, Nancy G. Klimas, A. Martin Lerner, Alison C. Bested, Pierre Flor-Henry,
Pradip Joshi, A. C. Peter Powles, Jeffrey A. Sherkey, Marjorie I. van de Sande.
Journal of Chronic Fatigue Syndrome. Volume 11, Number 1, 2003. At:
http://fm-cfs.ca/CFS-Protocol.pdf
Chronic Fatigue Syndrome:
Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for
Psychiatrists.
Eleanor Stein MD FRCP(C).
http://www.cfids-cab.org/MESA/Stein.pdf
The
Nightingale
Definition of Myalgic Encephalomyelitis (M.E.).
Dr Byron Hyde, Nightingale Foundation,
Toronto, Canada. Available at:
http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf
The
Complexities of Diagnosis. Byron Hyde.
In: Handbook of Chronic Fatigue Syndrome. Leonard A Jason et al. John Wiley & Sons, Inc. 2003.
www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf
Dr
Melvin Ramsay:
Definitive Description of ME:
http://meactionuk.org.uk/ramsey.html
CLINICAL AND SCIENTIFIC ARTICLES AND FILMS – ME Research UK Links Page:
(useful information here with the
glaring exception of the link to the AfME’s ‘CFS/ME’ document):
www.meresearch.org.uk/information/keypubs/articles.html
[i] Do bear in mind there is a
major problem with the existing body of research given the 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
And see: Cozzo J. JAMA
1989;261:5:697.
Under such
circumstances there is an urgent need for a great deal more biomedical research into the multi-system neuro-immune
degenerative disease that is Myalgic Encephalomyelitis/ME and AMEA
strongly recommends you funding this in the UK via two excellent ME charities, ME
Research UK and Invest in ME. Further information at the following
links:
www.meresearch.org.uk/index.html
[ii] For a round up of international ME/CFS
blood-donor ban activity simply Google the subject or see ESME Think Tank Panel
article at:
[iii] See, for example, Georgina Downs – UK Pesticides Campaign:
[iv] See, for example, Research Studies
into Electrosensitivity at:
http://www.es-uk.info/info/research.asp
And
Electro sensitivity and Electro
hypersensitivity – A Summary by Michael Bevington at: www.es-uk.info/news/20100415_es_and_ehs.asp
And see: The Gathering Brainstorm, Mark Anslow, The Ecologist at: www.buergerwelle.de/pdf/ecologist_wi-fi_article.pdf
[v] Another well-documented biomedical illness leading to serious
disability and fatalities that has been maligned by anti-science vested
interests. See for example: http://www.guardian.co.uk/world/2003/feb/04/iraq8
[vi] For recovery rate
information / discussion see Co-Cure Archives:
www.co-cure.org/
[vii] Dr Elizabeth (Betty) Dowsett. Addressing the Spring 2002 Annual General Meeting of MESN (UK). The lecture was filmed and put into the MESN resource library.
[viii] Outline Overview Research References (see
section 9 above):
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8. Chaudhuri A, et al. Neurology
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10. Aslakson E. Pres 8th IACFS Res
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11. Hooper M. Gibson UK Parliamentary
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12.
About Anglia ME Action / Disclaimer:
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to press for genuine evidence-based research, care and treatment, based
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multi-system illness known as Myalgic
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Acknowledgement and Thanks:
AMEA is grateful for the sterling work of former medical-legal researcher, Margaret Williams, and Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at Sunderland University, along with other contributors to the body of work listed/present on this website.
Most of their documentation is located on the ME Action UK website (see link below) which has been compiled by former NHS Radiographer, Stephen Ralph, under difficult circumstances as Stephen is himself very ill.
The ME community owes Malcolm, Margaret and Stephen much.
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