Dr Iona Heath presidemdavies@rcgp.org.uk
Magical Medicine:
How to make a disease disappear
PRESS RELEASE: MEDICAL RESEARCH COUNCIL
12th February 2010
A formal complaint has been 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 and is the only clinical trial that the Department for Work and Pensions (DWP) has ever funded.
Since 1993, the giant US permanent health insurance company UNUMProvident 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 the medical and permanent health insurance industry, including UNUMProvident. These psychiatrists insist – in defiance of both the World Health Organisation 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 World Health Organisation.
In 1992, the 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 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.
There are some extremely disquieting issues surrounding the MRC PACE Trial and documents obtained under the Freedom of Information Act allow the full story to be told for the first time.
People with ME/CFS do not seek any special consideration; they simply wish to be treated equally to those who suffer from other classified neurological disorders. As shown in the Report that accompanies the complaint, the MRC PACE Trial clearly demonstrates that people with ME/CFS are not treated equally to those with other chronic neurological disorders.
The Report can be accessed at http://www.meactionuk.org.uk/magical-medicine.pdf
File Size 6Mb
Adobe Acrobat format
CONTACT: Professor Malcolm Hooper Tel. +44 191 528 5536
See alternative download sites below
See also: Letter to Sir Michael Rawlins - Chairman of NICE here
and
e-mail addresses for Magical Medicine Distribution
Letter of complaint to the Rt Hon The Lord Drayson
Professor Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Sunderland
SR3
11th February 2010
The Rt Hon The Lord Drayson
Minister of State
(Science and Innovation)
1, Victoria Street
London
SW1H 0ET
Dear Minister
re: Complaint about the Medical Research Council
It is with deep concern that I lodge this formal complaint about the Medical Research Council with you in your capacity as Minister with responsibility for the MRC.
You will doubtless be aware of the serious problems at the MRC that were documented in the 2003 Report of the House of Commons Select Committee on Science and Technology (HC 132) in which MPs issued a damning judgment on the MRC, lambasting it for wasting funds and for introducing misguided strategies for its research. MPs found evidence of poor planning and of focusing on “politically-driven” projects that have diverted money away from top-quality proposals. The unprecedented attack was the result of a detailed probe into the workings of the MRC.
Sadly, very serious problems continue to exist at the MRC, with disastrous results for patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
The attached 442 page Report addresses the background to the MRC “PACE” Trial on “CFS/ME”, the biomedical evidence that disproves the assumptions of the MRC trial Principal Investigators, the many extremely disturbing issues surrounding the PACE Trial, and illustrations from the Manuals used in the trial.
The unproven beliefs and assumptions of the MRC Investigators are presented as fact; trial therapists have been trained to provide participants with misinformation, and therapists have also been trained to advise participants to ignore symptoms arising from the interventions, a situation that may in some cases result in death.
Patients with ME/CFS do not seek any special consideration; they simply wish to be treated equally to those with other classified neurological disorders. As shown in the commissioned Report that accompanies this complaint (a bound copy of which will follow), the MRC Trial clearly demonstrates that people with ME/CFS are not treated equally to those with other chronic neurological disorders.
Given the long-standing recognition that at least one of the interventions used in the trial is contra-indicated for people with ME/CFS, an intervention that is already known to have adverse effects on 50% of those who have already undertaken it, there is international concern about the MRC PACE Trial.
I urge you to read the attached Report and to respond to it with due attention and alacrity. You may wish to know that the Report is already on international academic websites.
Yours sincerely
Magical Medicine:
How to make a disease disappear
Alternative download sites:
(all files are in Adobe .pdf format)
442 pages
File size - Approx. 6Mb
http://magical-medicine.blogspot.com/
19th February 2010
Letter to Sir Michael Rawlins Chairman of NICE
From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
From Professor Hooper’s letter to Sir Michael Rawlins, chairman of NICE:
"The entire report, the press release and the letter of
complaint have now
been circulated worldwide on the internet and have received much acclaim
and support from the major ME organisations in various countries and
numerous individuals, as well as academic institutions. The report is to
be discussed by the International Association of CFS/ME at its next board
meeting in early March, as confirmed by the President, Professor Fred
Friedberg from the US."
The Magical Medicine press release, official letter of complaint to the MRC and Professor Hooper’s letter to NICE were all sent to the following email addresses. If an email address is not shown then it was sent to editors/PR/managers etc with a request to forward them to the names provided. In addition, Professor Hooper sent the documents out to various people, organisations and institutions not listed here.
http://www.rcplondon.ac.uk/Pages/index.aspx
President RCP - Prof Ian T Gilmore MD PRCP
Senior Censor and Education and Training Vice President - Prof Humphrey J F Hodgson DM
Clinical Vice President - Dr Mike Cheshire MBFRCP
Director, Publications and Editor of the College Journal - Professor Robert N Allan MD FRCP
Director, Clinical Effectiveness and Evaluation Unit - Dr Jonathan Potter DM Clinical Standards
Director, Patient and Carer Involvement - Dr David Scott MD Patient Involvement Unit
Press and PR - linda.cuthbertson@rcplondon.ac.uk
Publications - publications@rcplondon.ac.uk
Journal called Clinical Medicine - clinicalmedicine@rcplondon.ac.uk
Clinical Effectiveness & Evaluation Unit - ceeu@rcplondon.ac.uk
PR & Public Affairs Officer - frank.soodeen@rcplondon.ac.uk
Communications Officer - zoe.horwich@rcplondon.ac.uk
……………………………………………………………………………………………………………………………………………………….
Royal College of Psychiatrists college officers:
President: Professor Dinesh Bhugra
Registrar: Professor Sue Bailey
Dean: Professor Robert Howard
Treasurer: Professor
George Ikkos
Editor: Professor Peter Tyrer
Associate Registrars: Dr Peter Byrne, Dr Ola Junaid, Dr Peter Snowden, Dr Neil Deuchar
Associate Deans: Dr Andrew Brittlebank, Dr Brian Lunn, Dr Laurence Mynors-Wallace, Professor Greg O'Brien, Dr Gillian Pinner and Dr Tony Rao
Liz Fox, Press Officer, 020 7235 2351 ext.6298 efox@rcpsych.ac.uk Deborah Hart, Director of Communications and Policy dhart@rcpsych.ac.uk
Northern Irish Division : nmcnairney@nirelanddiv.rcpsych.ac.uk Scottish Division Email: kaddie@scotdiv.rcpsych.ac.uk Welsh Division Email: sconway@welshdiv.rcpsych.ac.uk North West Division Email: lgrice@northwestdiv.rcpsych.ac.uk edavison@northwestdiv.rcpsych.ac.uk |
South East Division Email: bfrancis@seastdiv.rcpsych.ac.uk
South West Division Email: pmcphee@southwestdiv.rcpsych.ac.uk aburge@southwestdiv.rcpsych.ac.uk
West Midlands Division Email: ndavies@wmidsdiv.rcpsych.ac.uk
Northern & Yorkshire Division Email: edavison@nyorkdiv.rcpsych.ac.uk
Trent Division Email: scorfield@wmidsdiv.rcpsych.ac.uk
COLLEGE CENTRE FOR QUALITY IMPROVEMENT –
The work of the College Centre for Quality Improvement (CCQI) has created a new and enhanced role for clinicians and their professional bodies in raising standards. Its national initiatives engage directly with clinicians, managers and service users and support them to take responsibility for improving local mental health services. More than 90% of mental health services in the UK participate in the work of the CCQI.
Director Quality Improvement Dr Paul Lelliott
PA to the Director for Quality Improvement - Sam Holder sholder@cru.rcpsych.ac.uk
Adrian Worrall Head of the Centre for Quality Improvement aworrall@cru.rcpsych.ac.uk
Alan Quirk, Senior Research Fellow aquirk@cru.rcpsych.ac.uk
Alex Webster, Centre Administrator awebster@cru.rcpsych.ac.uk
What is the National Collaborating Centre for Mental Health? The National Collaborating Centre for Mental Health (NCCMH) is one of seven centres established by the National Institute for Clinical Excellence (NICE) to develop guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS in England and Wales. Established in 2001, the NCCMH is responsible for developing mental health guidelines, and is a partnership between the Royal College of Psychiatrists and the British Psychological Society.
Director National Collaborating Centre for Mental Health Dr Tim Kendall
Christine Sealey Centre Manager csealey@cru.rcpsych.ac.uk
PSYCHIATRIC JOURNALS
British Journal of Psychiatry, Editorial Assistant - bjp@rcpsych.ac.uk
Editorial Coordinator, The Psychiatrist pb@rcpsych.ac.uk
Advances in Psychiatric Treatment, Editorial Assistant - apt@rcpsych.ac.uk
International Psychiatry, Administrative support - ip@rcpsych.ac.uk
Evidence Based Mental Health - alan.lovell@bazian.com
……………………………………………………………………………………………………………………………………….
President Dr Iona Heath presidemdavies@rcgp.org.uk
Chairman of Council Professor Steve Field chairman@rcgp.org.uk
Vice-Chair of CouncilDr Has Joshi FRCGP officer-vicechair1@rcgp.org.uk
Vice-Chair of Council Dr Clare Gerada officer-vicechair2@rcgp.org.uk
Chair of Scottish Council Dr Ken Lawton chair-scottish-counc@rcgp.org.uk
Chair of Welsh Council Dr Bridget Osborne nedmunds@rcgp.org.uk
Chair of Northern Ireland Council Dr David Johnston NICouncil@rcgp.org.uk
Chair Clinical Innovation & Research
CentreProfessor Nigel Mathers chair-circ@rcgp.org.uk
Chair of Medical Ethics CommitteeProfessor Martin Marshall chair-ethics-committee@rcgp.org.uk
Chair Patient Partnership Group Mr Antony Chuter ppgchair@rcgp.org.uk
Chair Professional Development Board Professor Nigel Sparrow NSparrow@rcgp.org.uk
Editorial Office E-mail: journal@rcgp.org.uk
Editor David Jewell, BA, MRCGP
Deputy Editor Alec Logan, FRCGP
Senior Assistant Editor email ENiesner@rcgp.org.uk
Assistant Editor Moira Davies-Cinar mdavies@rcgp.org.uk
………………………………………………………………………………………………………………………………………………
For the attention of all the members of the BMA UK council
BMA Press Office UK pressoffice@bma.org.uk
Also sent out to all the national BMA councils:
BMJ Editorial staff
http://resources.bmj.com/bmj/about-bmj/editorial-staff
fgodlee@bmj.com aferriman@bmj.com dcohen@bmj.com dpayne@bmj.com gjones@bmj.com
jsmith@bmj.com tdelamothe@bmj.com tgroves@bmj.com tjackson@bmj.com sschroter@bmj.com
plapsley@bmj.com btwisselmann@bmj.com
BMA Medical Ethics Department
British Medical Association ethics email - ethics@bma.org.uk for the attention of committee members:
Dr Anthony Calland, Chair
Professor Averil Mansfield, President
Dr Peter Bennie, Chairman of the Representative Body
Dr Hamish Meldrum, Chairman of Council
Dr David Pickersgill, Treasurer
Committee members elected by the BMA Representative Body
Dr Anthony Calland
Dr Mary Church
Dr Rajesh Kumar
Dr Surendra Kumar
Miss Louise McMenemy
Dr Brian Patterson
Dr M E Jan Wise
Committee
members elected by BMA Council
Dr Kate Adams
Dr John Chisholm
Dr Peter Dangerfield
Committee
members appointed by BMA Council
Professor Bobbie Farsides
Claire Foster
Professor Robin Gill
Professor Emily Jackson
Professor Graeme Laurie
Professor Sheila McLean
Professor Julian Savulescu
Journal of Medical Ethics
Professor John Harris, Joint Editor-in-Chief of the Journal of Medical Ethics
Professor Søren Holm, Joint Editor-in-Chief of the Journal of Medical Ethics
Professor Richard Ashcroft, Deputy Editor of the Journal of Medical Ethics
Publisher: Julie Solomon jsolomon@bmjgroup.com
Journal Manager: Richard Sand rsands@bmjgroup.com
Publishing Assistant: Jennifer Hudson jhudson@bmjgroup.com
Caroline White (BMJ Journals Press Officer) cwhite@bmjgroup.com
……………………………………………………………………………………………………………………………….
Honorary President - Sir Kenneth Calman
Professor Raanan Gillon, Chairman
contact@instituteofmedicalethics.org
…………………………………………………………………………………………………………………………………
BABCP Board of Directors and elected members babcp@babcp.com
President: John Taylor
President
Elect: Shirley Reynolds
Honorary Secretary: Linda Matthews
Treasurer: Lynn Jones
Marie Chellingsworth
Paul Farrand
Joy McGuire
Fiona Kennedy
Alan Kessedjian
Katy Grazebrook
National Committees Forum - All members of the Board plus the following:
Ann
Gledhill (Communications)
Mark Latham (Supervisor and Trainer Accreditation)
Amanda Cole (Accreditation and Registration Chair)
Helen Macdonald (EABCT)
Rod Holland (Workforce Development)
Paul Salkovskis (Journal)
Warren Mansell (Conference Scientific Committee)
Roz Shafran (Conference Scientific Committee)
Chris Williams (HPC Liaison)
Nick Wade (Branch Liaison)
Chris Cullen (Complaints and Disciplinary)
Charlie McConnochie (Senior Accredition Liaison Officer)
Michael Townend (e-Journal)
Journal - Behavioural and Cognitive Psychotherapy - journal.editor@babcp.com
…………………………………………………………………………………………..
Contact:
Ms Karen Reeves
Executive Manager karen.reeves@thebn.org
Council Officers
President – Professor Alastair Compston
President Elect - Professor Martin Rossor
Honorary Secretary - Dr Stephen Wroe
Honorary Assistant Secretary - Dr Heather Angus-Leppan
Honorary Treasurer – Dr Colin Mumford
Chair, Training & Education Committee – Dr Adrian Wills
Chair, Clinical Research & Academic Committee – Professor Patrick Chinnery
Chair, Services & Standards Committee – Dr Gareth Llewelyn
Council Members
Dr Christopher Allen
Dr Ian Ormerod
Dr Lionel Ginsberg
Dr Yvonne Hart
Dr Richard Davenport
Professor Neil Scolding
…………………………………………………………………………………………………………………………………………………….
http://immunology.org/Page.aspx?pid=192
Chief Executive Judith Willetts j.willetts@immunology.org
Science Officer Hannah Hope h.hope@immunology.org
Editorial Officer Sharon Tobin s.tobin@immunology.org
Professor David Gray d.gray@ed.ac.uk
Dr Lindsay Nicholson l.nicholson@bristol.ac.uk
Professor Robert Barker r.n.barker@abdn.ac.uk
Professor Arne Akbar a.akbar@ucl.ac.uk
Dr Stephen Jolles jollessr@cardiff.ac.uk
Professor Adrian Hayday adrian.hayday@kcl.ac.uk
Professor Paul Lehner pjl30@hermes.cam.ac.uk
Journal of BSI and also Immunology News Daniel Price d.price@immunology.org
Immunology Editorial Office imm@immunology.org
Editor-in-Chief, Immunology - Professor Danny Altmann d.altmann@ic.ac.uk
Editor-in-Chief, CEI - Professor Mark Peakman mark.peakman@kcl.ac.uk
………………………………………………………………………………………………………………………………………………………………
British Psychological Society
General Society Enquiries at enquiry@bps.org.uk
Media Centre Contacts mediacentre@bps.org.uk
Trustees – President - Ms Sue Gardner
President-Elect - Dr Gerry Mulhern
Vice President - Dr Elizabeth Campbell
Honorary Treasurer - Dr Richard Mallows
Chair Membership and Professional Training Board - Dr Peter Banister
Chair Psychology Education Board - Dr. Richard Latto
Chair Professional Practice Board - Dr Carole Allan
Chair Publications and Communications Board - Dr Graham E Powell
Chair of Representative Council - Professor Maurice Stringer
Council Representative on the Board of Trustees - Professor Jill D. Wilkinson
Council Representative on the Board of Trustees - Professor Graham Turpin
Council Representative on the Board of Trustees - Emeritus Professor Ken Brown
BPS ethic committee contact Lisa.MorrisonCoulthard@bps.org.uk
The Psychologist, editor, Jon Sutton jon.sutton@bps.org.uk
Assistant editor Peter Dillon-Hooper psychologist@bps.org.uk
………………………………………………………………………………………..
On the emails to ME Researchers:
“Please feel free to forward these documents to other physicians, academics, the ME community and the media as it is important to get this information widely distributed and used to good effect.”
Dr Vance Spence
Dr Jonathan Kerr
Prof Julia Newton
Dr Bruce Carruthers
Dr Cheney
Dr Hyde
Dr Chia
Professor Klimas
Professor Jason
Professor Friedberg
Dr James Baraniuk
Professor Marti Pall
Professor Michael Maes
Dr J Nijs
Dr Abbott
Dr Kennedy
Dr Khan
Dr Belch
Professor Montoya
Dr Lapp
Dr Lerner
Dr Natelson
Dr Stephen Holgate
Dr Endlander
Professor Garth Nicolson
Dr Pheby
Dr Poland
Dr Bell
Professor Snell
Professor Van Ness
Professor Ciccolella
Professor Davenport
Stacey Stephens
The expert panel of ESME - Prof. Dr. Med. Kenny De Meirleir, Prof. Dr. Bodil Norrild, PD Dr. Liv Bode,
Prof. Dr. Hanns Ludwig, Prof. Dr. Med. Mária J. Molnár, Dr. Med. Umberto Tirelli, P rof. Dr. Med. Ola Didrik Saugstad, Prof. Dr. Med. Babill Stray-Pedersen, Dr. Med. Ana Garcia Quintana:
Psychiatrists
Dr Alistair Santhouse following the BMJ Editorial, to be forwarded to Professors Hotopf, David, Wessely, White and Sharpe.
………………………………………………………………………………………………………………………………………
On the emails to ME Charities and Organisations:
“Please feel free to forward these documents to other physicians, academics, the ME community and the media as it is important to get this information widely distributed and used to good effect.”
25% ME Group
IiME
MEA
AfME
CFIDS
NCF
European Alliance of ME – an alliance of ME charities from across Europe
ESME – European Society for ME
IACFS - International Association of CFS/ME
Local ME - to be sent out to all local UK ME groups
WPI – for Annette Whittmore, Dr Dan Peterson, Dr Judy Mikovits. Dr Donnica Moore
Chronic Fatigue Syndrome Advisory Committee (CFSAC) – to be sent out to all their members
HHV6A Foundation – Kristin Loomis
ME/CFS Australia – an organization like EAME, comprising 8 Australian ME/CFS charities from across the continent
ANZME – New Zealand ME national charity with local support groups across New Zealand
National ME/FM Action Network – Canadian charity with links to other ME organizations across Canada
ME Society of America
PANDORA – Patient Alliance for Neuroendocrineimmune Disorders
ME- CFS Community.com
ProHealth
National Alliance for ME US
Pheonix Rising/ aboutmecfs.org
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ADDITIONAL SCIENTIFIC JOURNALS:
PULSE – to several editorial staff
NEW SCIENTIST
NURSING TIMES – to several editorial staff
LANCET – to several editorial staff
TV AND RADIO
PANORAMA
NEWSNIGHT
BBC NEWS TV - to several people
BBC NEWS RADIO
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RADIO 5
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INDIVIDUAL JOURNALISTS:
JEROME BURNE
SARAH STACEY
ROWN HOOPER
MELANIE PHILIPS
HELEN SEWELL
JAMES LEFANU
STEPHEN HALPERN
LEE RODWELL
RACHEL NEWCOMBE
SARAH BOSELY