Some Documents of Relevance to the ME/CFS Community:
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PERMISSION
TO REPOST
ENGAGING WITH MYALGIC ENCEPHALOMYELITIS:
Towards Understanding, Diagnosis and Treatment Malcolm
Hooper February 2003
Obtainable from M Hooper, Emeritus Professor of Medicinal Chemistry,School
of Sciences, Fleming Building, Wharncliffe Street,University of Sunderland, SR2 3SD
at a cost of £4.50 including postage.
This 85 page publication deals in depth with the disordered biochemistry found
in ME/CFS; with the gut-brain axis; with immune system dysfunction seen in
ME/CFS; with dysfunctional metabolism and oxidative stress seen in ME/CFS and
with impaired membranes in ME/CFS and offers sound practical advice about
restoration of these dysfunctional systems.
Fully referenced with colour plates.
A MILLION STORIES UNTOLD
Jodi
Bassett February 2004 (posted on Co-Cure EDU 2nd April 2004 /
http://tertius.net.au/foothold/untold.html).
This compelling 14 page document is a moving and factual account of the effect of ME/CFS. It conveys the brutal reality
and the tragedy of living with a serious physical disorder with, at best,
little medical or social support and at worst, denial of its existence. It
quotes several
internationally renowned ME/CFS experts including Professor Leonard Jason
("this disease, this syndrome, is actually more debilitating than just
about any other medical problem in the world"); Dr Dan Peterson
("When asked on CNN how many of his (ME/CFS) patients had fully recovered
in fifteen years,Dr Peterson chillingly stated 'None'
") and Dr Mark Loveless, Head of the AIDS and CFS Clinic at Oregon Health
Sciences University, who in 1995 testified at a congressional briefing that an
ME/CFS patient "feels effectively the same every day as an AIDS patient
feels two months before death"). It lists the evidence of physical
abnormalities seen in ME/CFS (for example, Dr Paul Cheney found that in dual
chromatography analyses, many ME/CFS patients had more biochemical derangement
of the brain than patients with Parkinson's or Alzheimer's disease) and it
considers the abuse experienced by ME/CFS sufferers at the hands of those
professionals who find that dismissal of the disorder better serves their own
purposes.
Referenced.
25% ME
GROUP ANALYSIS REPORT 1st March 2004 Simon Lawrence, 4 Douglas Court, Beach Road, Troon, Ayrshire,
KA10 6SQ
Email: enquiries@2...
This document analyses a questionnaire entitled "Essential Services for
Severely Affected ME Sufferers". It highlights for MPs, healthcare
professionals and Social Services staff the lack of services for those with
severe ME/CFS.
It deals with difficulties experienced with state benefits, social services,
homecare support requirements, carers' needs, primary Care Trusts, hospital
referrals and treatments, optical and
dental services and with management approaches that have been found to be
unhelpful (particularly cognitive behavioural therapy and graded exercise
programmes).
It is clear that patients with severe ME still face considerable difficulties
in gaining access to necessary basic services.
SPEECH TO SCOTTISH PARLIAMENT Jane Colby, Executive Director of The Young
ME Sufferers Trust (Tymes Trust) 24th
March 2004.
Tymes Trust, PO Box 4347, Stock, Ingatestone,
Essex, CM4 9TE Tel/Fax :
01245 401080
www.tymestrust.org
This document blows the dust away and exposes the
determined efforts that have been made by both the CMO's
Working Group and the two major UK ME charities to suppress the physical
reality of ME/CFS.
It reveals the culture in the ME charity world of a desire "not to rock
the boat" and not to tell the truth but to placate the psychiatric lobby
at all costs. It documents the great concern by patients that the new clinics
(to be funded by a Government injection of £8.5 million) are set to deliver
nothing but the favoured psychiatric regimes (the published aims of which being
to amend ME/CFS sufferers' "dysfunctional" and "aberrant"
beliefs that they are suffering from a physical disorder). It sets out how
children and young people with ME/CFS are still being forcibly removed from
their parents and that such proceedings are supported by Wessely School psychiatrists
(whose published views are that ME is a "myth" and that in
reality, it is a non-existent disease and "CFS" is a somatoform disorder).
It documents the blatant injustice against children with ME/CFS, against their
parents, and even against doctors who dare to defend them.
It records that such injustices are increasing. It states "We at Tymes Trust are at a loss to see what possible advantage
can be gained by refusing to face the reality of the dire things that are still
happening to adult patients and to children.
Despite the fact that these cases appear to grow in number, the reality is
denied by the very ME organisations who should be protecting the children and
publicising what is going on. It is not by sweeping such things under the
carpet that we shall eventually prevent them happening".
The
following documents all have the same theme but document different
aspects. Bound copies are available at cost price plus postage from
either the Countess of Mar, House of Lords, London
SW1A 0PW or from Doris M Jones MSc, 176 Perth Road,
Ilford,
Essex, IG2 6DZ
(UK).
Also available online.
DENIGRATION BY DESIGN? Vol I (1987-1996)
August 1996 (pp 217)
DENIGRATION BY DESIGN? Vol II
(1996-1999) December 1999 (pp 271)
A Review, with References, of the Role of Dr (now Professor) Simon Wessely in the Perception of Myalgic
Encephalomyelitis
Eileen Marshall, Margaret Williams
http://www.btinternet.com/~severeme.group/contents.htm
http://www.btinternet.com/~severeme.group/denigration_extra1.htm
Volume II contains several appendices, including:
(i) The Views of Dr Simon Wessely
on ME: Scientific Misconduct in theSelection
and Presentation of Available Evidence?
(ii) Summary of some of the findings presented at the Second World Congress of
ME/CFS, Brussels,
September 1999
http://www.bryantpr.plus.com/DENIGRATION%20BY%20DESIGN%20-%20Brussels%201999%20(separate%20document).pdf
(iii) Recommended Reading
(iv) Notes on Human Herpes Virus Type 6 research on ME/CFS
Both volumes contain a selection of published articles
on ME/CFS (showing its organic pathoaetiology) with
which Wessely et al disagree, and document the
relentless onslaught on ME/CFS sufferers by Wessely
et al, resulting in the now prevailing misinformation about the disorder.
Both volumes fully referenced.
CONSIDERATION OF SOME ISSUES RELATING TO THE PUBLISHED
VIEWS OF PSYCHIATRISTS OF THE "WESSELY SCHOOL" IN RELATION
TO THEIR BELIEF ABOUT THE NATURE, CAUSE AND TREATMENT OF ME
March 2000 Margaret Williams
http://www.cfids-cab.org/ME/consideration.html
This 65 page document exposes and details the tactics of denial and dismissal
of the international biomedical evidence of the organic basis of ME/CFS used by
this group of UK psychiatrists and contains appendices by Val Broke-Smith
(Special issues relating to the
treatment of children and young people with ME) and Ann Crocker
(Open letter to the Chief Medical Officer). Fully referenced.
CONCERNS
ABOUT THE FORTHCOMING UK CHIEF MEDICAL OFFICER'S REPORT ON ME AND CFS, NOTABLY
THE INTENTION TO ADVISE CLINICIANS THAT ONLY LIMITED INVESTIGATIONS ARE
NECESSARY
July 2001 Sally
Montague Malcolm Hooper (known as the Montague / Hooper
paper).
http://www.co-cure.org/UKCMO.htm
This 22 page document was submitted to the CMO's
Working Group before publication of the final report but was repeatedly
ignored. It challenges the psychiatric lobby which dominated the CMO's Working Group and it questions the robust support of
Dr Charles Shepherd (a member of the CMO's Key Group,
who at the time was Medical Director / Adviser to the UK
ME Association) for the Wessely School psychiatrists'
views that only limited investigations are appropriate and necessary for those
with ME/CFS, when this advice flies in the face of the international evidence
that basic screening is insufficient for such patients.It
includes vidence
of published international research findings on ME/CFS that those psychiatrists
are intent on ignoring, including abnormalities seen in brain studies; in
neurological investigations; the visual processing disabilities experienced by
ME/CFS patients; the abnormal biochemistry exhibited in these patients; the
genetic abnormalities demonstrated in these patients, as well as
the abnormalities found in virological,
microbiological and immunological studies; it sets out the urgent need for
comprehensive investigations of ME/CFS patients as well as the need for
sub-grouping.
Fully
referenced.
CONCEPTS OF ACCOUNTABILITY?August 2001 Sally Montague Malcolm
Hooper.
http://www.bryantpr.plus.com/CONCEPTS%20OF%20ACCOUNTABILITY.pdf
This 69 page document outlines some of the background that lay behind the
writing of the Montague / Hooper paper and was produced because, following the
release of the Montague / Hooper document, the authors and their associates
were subjected to a furious and sustained attack (including threats of legal
action) by Dr Charles Shepherd (then Medical Director / Adviser to the UK ME
Association) and other members of HealthWatch (a
campaigning organisation known for its history of zealously attacking
environmental medicine as well as alternative and complementary health
practitioners and which has accepted money from both the pharmaceutical and
insurance industries). The document sets out the evidence that ME/CFS may
be either virally or chemically induced; it sets out the evidence supporting
the need for sub-groups of "CFS"; it considers the undeclared competing
vested interests of the most influential members of the CMO's
Working Group; it examines the psychiatric bias of the 1996 Joint Royal
Colleges'
Report on "CFS"; it discloses the actions of Dr Shepherd after the
release of the Montague / Hooper paper; it considers HealthWatch
and its published views on ME and it documents the actions of some of the
medical members of HealthWatch in relation to their
dismissal of environmental illness; it considers the blatant attempts to
re-classify ME/CFS from neurological to psychiatric by Wessely
et al and it briefly sets out support for Professor Hooper. Fully referenced.
COMPOSITE
RESPONSE ON THE FINAL VERSION OF THE CMO'S REPORT OF 31ST
AUGUST 2001 ON CFS/ME. September 2001. edited by
Malcolm Hooper
http://www.bryantpr.plus.com/Composite%20Response%20to%20CMO%20Final%
20Draft.pdf
This 39 page document analyses the final version of the Report of the CMO's
"independent" Working Group on "CFS/ME" and comments on all
sections of the draft report which ignore or dismiss the evidence of an organic
pathoaetiology in ME/CFS; it presents illustrations of the evidence that was
ignored in the compilation of the CMO's Report. Fully referenced.
WHAT IS ME? WHAT IS CFS? INFORMATION FOR CLINICIANS AND
LAWYERS
December 2001 EP Marshall M Williams M
Hooper
http://www.bryantpr.plus.com/WHAT%20IS%20ME%20%20WHAT%20IS%20CFS.pdf
This 26 page publication contains sections on the history,description
and symptoms of ME; evidence of abnormalities and physical signs found in ME;
history of Chronic Fatigue Syndrome; how CFS displaced ME in the UK and
information on the UK Chief Medical Officer's Report on "CFS/ME".
It urges the need for caution by both clinicians and lawyers
Fully
referenced.
RESPONSE TO THE MRC RESEARCH ADVISORY GROUP (RAG) DRAFT DOCUMENT FOR PUBLIC CONSULTATION
ON CFS/ME DATED 17TH DECEMBER 2002 27th
December 2002 M Hooper EP Marshall M
Williams
http://www.bryantpr.plus.com/Initial%20Comments%20on%20the%20MRC%20Research%20Advisory%20Group%20Draft%20Document%20for%20Public%20Consultation20n.pdf
This 26 page document considers and comments upon the draft document produced
by the Medical Research Council RAG on the MRC's preferred (psychiatric)
strategies for the management of "CFS/ME" and it provides evidence
already published in international mainstream medical journals (over 60) that
document organic anomalies in ME/CFS which the MRC RAG members had persistently
chosen to ignore. On the basis of what they have previously published, it
reveals the psychiatric bias of the carefully chosen members of the RAG.
Fully referenced.
NOTES ON THE INVOLVEMENT OF WESSELY et al WITH THE INSURANCE
INDUSTRY AND HOW THEY DEAL WITH ME/CFS CLAIMS
17th June 2003 M Williams
http://www.meactionuk.org.uk/Notes_on_the_Insurance_issue_in_ME.htm
This 21 page document lists the insurance companies known to be involved with
ME/CFS claims and considers the known involvement of the Wessely School
psychiatrists with such claims. It sets out the known concern of Members
of Parliament about the difficulties experienced by those with ME/CFS when
making legitimate insurance claims. It provides illustrations of
Wessely's control over the national perception of ME/CFS. It quotes from
psychiatrist Michael Sharpe's contribution in UNUMProvident's "Trends in
Disability 2002"
which confirms that PRISMA (a commercial healthcare company of which Professor
Simon Wessely is a member of the Supervisory Board) is now providing
"rehabilitation regimes" (based on a more than usually intensive
cognitive behavioural programme designed by Wessely et al) for the NHS for
claimants with ME/CFS. It contains two Statements from ME/CFS sufferers
setting out the difficulties they have encountered with their insurance
claims caused by named Wessely School psychiatrists.
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
December 2003 Professor M Hooper in conjunction with the UK ME/CFS
community
http://www.bryantpr.plus.com/The%20Mental%20Health%20Movement%20-%
20Persecution%20of%20Patients.pdf
This 75 page document asks if powerful and influential psychiatrists who
dominate the perception of ME/CFS in the UK are working within the Mental Health
Movement which is known to be linked to the multi-national corporations that
now control medical and research institutions and whose life-blood is profit,
and if the determining factor governing policies on medical research and on the
management of patients is increasingly determined not by medical need but by
economic considerations. It looks at Wessely's
involvement. It looks in detail at the tactics of denial used by
psychiatrists of the Wessely School in their denial
of the reality of ME/CFS as a physical disorder and at their insistence that it
is a psychiatric disorder. It looks at the House of Commons Report from
the Select Committee on Science and Technology that was excoriatingly
critical of the MRC during the time that Wessely was
a member of three MRC Boards. It looks at Wessely's
influence over the national and international misperception of ME/CFS. It
includes two appendices, one of quotations from the published works of Simon Wessely on ME/CFS and one of the published works of Michael
Sharpe on ME/CFS, which speak for themselves.
Fully
referenced.
An illustration of the pervasive influence of Wessely School psychiatrists is
to be found in an article in the Belfast Telegraph on 5th April 2004 ("ME
and you")
http://www.belfasttelegraph.co.uk/news/features/story.jsp?story=508694
which quotes the consultant psychiatrist in charge of sessions of cognitive
behaviour and exercise therapy for ME/CFS patients in Northern Ireland, Dr Noel
Scott from Belfast City Hospital, as stating "These people need to
have their attitudes changed".
Those who find it difficult to accept that these psychiatrists do indeed have
their own agenda, and that the very people who are tasked with supporting
patients with ME/CFS are actively militating against them, may be assured that
the evidence exposing their duplicity is incontrovertible but is not yet in the
public domain.
nvdr: verzameld door : "Stephen Ralph"
stephen. e. ralph @ meactionuk. org. uk: