Following suggestions from visitors to the website, this page has been set up to allow me to give details of items about M.E. and related issues, as well as other subjects, that will hopefully be of interest to those who visit the site. Do let me know what you think!
From: Professor Sir Michael Rawlins FMedSci
National Institute for Health and Clinical Excellence
MidCity Place
71 High Holborn
London
WC1V 6NA
To: Professor Malcolm Hooper
2 Nursery Close
Sunderland
SR3 1PA
02 March 2010
Dear Malcolm,
Thank you for your letter and for enclosing "Magical Medicine: How to Make Disease Disappear".
You are obviously aware that NICE has, in the recent past, been involved in defending an action for Judicial Review over the ME/CFS guideline we published a couple of years ago. Although judge found in favour of the Institute the legal costs were considerable. I am afraid, therefore, that I am not prepared to enter into any correspondence on this matter.
From: Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
School of Sciences
Fleming Building
Wharncliffe Street
University of Sunderland
SUNDERLAND SR2 3SD
Thank you for your letter and the returned copy of Magical Medicine which I found very disappointing and disconcerting.
To be faced, yet again, with the denial and dismissal of the comprehensive amount of biomedical evidence about ME that has been presented in some 5000 published and peer-reviewed papers is disturbing and has sinister connotations devoid of any compassion.
Failure to consider this evidence means that any policy towards people with ME will be "built upon sand" in defiance of the basic principles of scientific inquiry and any consideration for very sick people, their families and carers
As a fellow medical scientist I find the continuing denial and unwillingness to face the biomedical evidence both puzzling and incomprehensible.
We know Government is committed to funding research that is perceived to support policy, an attitude that has, in this case, lead to lack of scientific rigour, integrity and humanity in order to avoid developing a policy based on the biomedical evidence available in this complex and difficult area of medicine.
I am a ‘blast from your past’. I was at Sunderland School of Pharmacy and you were at Newcastle in Clinical Pharmacology when the M.Pharm course in Pharmacokinetics was developed. Congratulations on your eminent status and knighthood.
Since 1997, when I retired as Professor of Medicinal Chemistry, I have been involved with the emerging and widespread complex chronic multi-system illnesses (Gulf War Syndrome/Illness, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, ME/CFS, multiple chemical sensitivity, MCS, Aerotoxic Syndrome, organophosphate and other pesticide poisonings) that are of growing concern and are medically challenging - writing and lecturing, locally, nationally and internationally.
This letter is linked to my concerns about ME which involves some 240,000 people in the UK with varying degress of disability. Some 25% are housebound or bed bound and have formed their own group, www.25megroup.org/.
The 442 page report “Magical Medicine, how to make a disease disappear”, copy attached with the press release, together with a copy of my letter to the Minister, Lord Drayson, currently the Minister responsible for the MRC, brings together an extensive and fully referenced review of the literature on ME.
It provides the evidence supporting my complaint about the MRC PACE Trial to Lord Drayson.
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.
Despite the vast amount of biomedical literature (some 5000 papers) going back to 1934 and the classification of ME as a neurological illness by the WHO (ICD-10 G93.3) since 1969, the official UK attitudes as demonstrated by the MRC, DWP, Department of Health, and to some extent your own organisation NICE:
a.ignore all this evidence
b.show an ideological commitment to a psychosomatic/behavioural model of the illness which is no longer tenable
c.recommend only cognitive restructuring techniques (CBT and GET) that are "not remotely curative" and have been shown to be of no lasting value and in the case of GET to be positively harmful (Peter White's assertion that this is because the interventions have been incorrectly administered has been shown to lack credibility)
d.proscribe any investigative tests to identify the disorder, leading to missed diagnoses and misdiagnosies
e.support cruel, even vicious, actions that lead to patients being wrongly sectioned and parents, particularly mothers, accused of Munchausens’-Syndrome-by-Proxy, MSBP.
f. the result is that essential benefits and insurance payments to support patients and their families have not been paid or have been granted only after protracted and expensive legal action. All this adds to the burden of the illness for patients and for those who care for them.
The psychiatrists’ argument that what they refer to as “CFS/ME” is substantially different from past epidemics of ME does not withstand scrutiny in the light of current knowledge. It is beyond question that ME is associated with a severely disrupted immune system which renders patients more susceptible to both further viral and chemical challenge and reactivation of latent viruses and persistent viral-specific symptoms.
For the psychiatrists to amalgamate 25 different disorders (Holgate, RSM July 2009) and to focus on “medically unexplained fatigue” whilst ignoring cardinal symptoms of ME is a travesty of medical science.
Of special concern and relevance are the legal and ethical requirements facing doctors today, in particular, the legal requirement for doctors to keep up to date with developments in medicine and medical science (as clearly set out in “Good Medical Practice: Duties of a doctor. The duties of a doctor registered with the General Medical Council: 'Keep your professional knowledge and skills up to date' and 'Never abuse your patients' trust in you or the public's trust in the profession' (http://www.gmc-uk.org/guidance/good_medical_practice/duties_of_a_doctor.asp).
Ignoring vast swathes of evidence is not keeping up to date. For any registered medical practitioner – consultant or GP - to dismiss or ignore this widely available evidence which invalidates the behavioural model of “CFS/ME”, together with the prescription of inappropriate interventions, is in clear breach of the GMC regulations and consequently raises issues of medical indemnity.
As noted in the report: “since the general body of knowledge known about by other clinicians and researchers working in the field of ME/CFS is now so great, the question repeatedly asked is: at what point will that body of scientific knowledge be so great that it will be considered serious professional misconduct to ignore it and to continue to deceive patients by pretending that it does not exist?”.
The recommendation not to carry out appropriate investigative tests is inconsistent with the Hippocratic Oath in its ancient or modern form.
The offering of treatment that is known even by its proponents to be ineffective is a betrayal of doctors’ responsibility to their patients. Merely to pronounce that the onus is on the individual doctor, when adherence to NICE Guidelines is to become compulsory, is unacceptable.
Inappropriate sectioning of patients and false diagnoses such as MSBP represents a further betrayal.
To rely on only a few studies, showing very modest efficacy, all of which having been shown to have very serious flaws (as is the case with the PACE Trial) and enshrine this inadequate information in official directions, publications and statements from authorised bodies, including NICE, is utterly unacceptable and dishonours the name of medicine as well as being destructive of lives of sick people and those who care for them.
I draw to your attention the commissioned editorial in last week’s BMJ by Alistair Santhouse, who you will be aware was a member of the CG53 GDG. Please read the attached eBMJ response submitted by Horace Reid, a former long-serving NHS clinician. It was rejected for publication, a fact that is revealing in itself, given that it is impeccably accurate.
I would ask you in your role as Chairman of NICE to engage fully with our report and act accordingly to right the long standing wrongs that people with ME have suffered for the last 20 years.
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.
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.
This new book by Dr E S Williams looks at the increasingly popular Christian counselling movement which has spread throughout many churches in the UK. The book examines the ideas and assumptions behind the counselling movement, addressing two questions: Is counselling, as practised by the Christian counselling movement, a legitimate part of Christian ministry? Does the church benefit from integrating psychological truth and Scripture? I would recommend this book; it will certainly be an eye-opener for some.
You may have seen in the media reports of a study carried out in the UK which appears to cast doubt on the research published in October last year that found evidence of the XMRV retrovirus in ME patients. The UK study has already been criticised by many, including those who carried out the original research at the Whittemore Peterson Institute in the USA. They have released a press statement as follows -
Official Statement from the Whittemore Peterson Institute Regarding UK Study
The Whittemore Peterson Institute (WPI) has reviewed the paper entitled “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” This study did not duplicate the rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland Clinic, therefore it cannot be considered a replication study nor can the results claim to be anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful results.
The scientific methods used by WPI are very exact and require specific techniques to ensure accuracy. Differences in techniques employed by Erlwein et al. not only explain their failure to replicate the WPI study, but also render the conclusions meaningless. These differences include, but are not limited to the following:
1) blood sample volumes and processing;
2) patient criteria/population differences;
3) number and type of tests done to assure accurate results, including white blood cell culture;
4) use of a molecular plasmid control in water versus a positive blood sample; and
5) different primer sequences and amplification protocol used to find the virus, which were not validated by a clinical control.
The WPI study was published after six months of rigorous review and three independent lab confirmations, proving that contamination had not taken place and that infectious XMRV was present in 67 percent of CFS patients diagnosed according to the Canadian and Fukuda criteria. In contrast, this latest study was published online after only three days of review. Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients, since the UK has relegated “CFS” patients to psychiatric care and not traditional medical practices.
“Little is known about the prevalence of XMRV world-wide, much less the incidence of XMRV in ME/CFS or prostate cancer” emphasizes Dr. Judy Mikovits. “WPI and its NCI collaborators are actively engaged with international research teams to investigate these important questions.”
WPI does not recommend the use of anti-retroviral drugs that have yet to be proven to be effective in treating XMRV infection. However, several large pharmaceutical companies have expressed interest in developing anti-retroviral and immune modulating drugs that will effectively treat XMRV associated diseases.
WPI looks forward to the results of other scientific groups around the world, serious about replicating its scientific results, by using the same techniques as WPI and its collaborators. The fact that XMRV was detected in 67 percent of the CFS samples in the U.S. study determined a significant association between XMRV and CFS, demanding a much more serious inquiry by responsible health agencies around the world as to the cause of this debilitating disease.
Whittemore Peterson Institute
The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of the immune system and the nervous system, often results in lifelong disease and disability. The WPI is the first institute in the world dedicated to X associated neuro-immune disease (XAND), and other X associated diseases, integrating patient treatment, basic and clinical research and medical education.
Notice from Prof Malcolm Hooper and Margaret Williams, both of whom are well know in the ME World (you can access many of their documents on the MEActionUK website http://www.meactionuk.org.uk/) -
Prior to the publication of the MRC PACE Trial results in the Spring of 2010, Professor Malcolm Hooper and Margaret Williams will be releasing a series of linked documents addressing central flaws in the PACE Trial.
These documents form part of a more substantial document that has the provisional title Magical Medicine: How to make a disease disappear.
This webpage will contain an easily accessible Contents page so that people can surf and then select whatever section (or part of a section) they may wish to look at.
Although he and Margaret Williams have previously addressed some of the issues contained in the substantial document, Professor Hooper thinks it is essential for there to be a single, comprehensive narrative of events and information leading up to and involving the PACE Trial.
Following on from the disappointment of the unsuccessful Judicial Review brought in February by two ME sufferers against NICE (see further articles listed at the bottom of this page), the above article by Margaret Williams contains statements that were provided by ME experts to the lawyers but which were sadly not used during the JR. They clearly provide further evidence that the usual recommendations of Graded Exercise Therapy and Cognitive Behavioural Therapy are at best unhelpful and can be positively harmful for those suffering from ME, a neurological disorder.
December 2009
Wedding photos!
On Thursday 26th November my brother Tim married Lois. I was not well enough to be at the wedding, but was kept up-to-date with all that happened via phone calls, text messages and email. If you would like to see some wedding photos please go to my blog at http://oneagleswingsme.blogspot.com/
"A review on Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)" by Frank Twisk and Dr Michael Maes. This review shows that CBT/GET is not only ineffective and not evidence-based but also potentially harmful for many patients with ME/CFS. Click on the above link on the Invest in ME website for further details.
The CFIDS Association of America have a write-up on their website of the recent research regarding the XMRV virus, including a links to a number of related articles.
Following the news of the recent discovery of the XMRV retrovirus the European ME Alliance wish to issue this statement -
"The European ME Alliance (EMEA) wish to congratulate the Whittemore-Peterson Institute for the painstaking, professional and groundbreaking work which its staff have performed, along with the National Cancer Institute and the Cleveland Clinic, which has resulted in the publication of the findings of a novel virus XMRV in causing or influencing ME.
"The members of EMEA recognise that the staff at WPI are performing research of the highest quality.
"The publication of this research in Science magazine is itself an amazing achievement.
"This work has been achieved in an amazingly short period of time and the tenacity, dedication and sheer excellence of the WPI has brought hope to millions of people, patients, carers and friends, in Europe and further afield.
"EMEA announces its continued full support for WPI and hopes to be able to become a stronger partner in the future."
Signed by all members of the European ME Alliance -
Belgium ME/CFS Association (Nieuwrode, Belgium)
Denmark ME-NetDK
Ireland Irish ME Trust
Germany Fatigatio e.V.
Norway Norges ME-forening
Spain Liga SFC
Sweden Riksföreningen för ME-patienter
UK Invest in ME
9th October 2009
Retrovirus associated with ME
This encouraging research news has broken in the last 24 hours; apart from anything else, it further shows how mistaken it is to offer psychological "treatments" such as Graded Exercise Therapy and Cognitive Behavioural Therapy to those with ME! There is a lot of information about the research available on the internet already, with links to many of the articles on the following website which states - http://www.meactionuk.org.uk/XMRV_News.html "News and scientific websites are publishing details of a groundbreaking scientific research study that for the first time links a normally dormant retrovirus called XMRV to patients with a diagnosis of Chronic Fatigue Syndrome or Myalgic Encephalomyelitis. This virus is also related to a subset of patients with Prostate Cancer. You can read an overview of XMRV in relation to CFS/ME here. "
Much of the research is linked with the Whittemore Peterson Institute (WPI) in the USA. Their press release, which includes the following, can be found at -
WPI Press release http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf
Whittemore Peterson Institute Scientists Discover Significant link between XMRV and ME/CFS
"RENO, NV – A recently identified retrovirus called XMRV has been linked to a debilitating neuroimmune disease that affects more than one million people in the United States.
"Scientists from the Whittemore Peterson Institute (WPI), located at the University of Nevada, Reno, and their collaborators from the National Cancer Institute and the Cleveland Clinic, have discovered a retroviral link to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). "
XMRV research http://wpinstitute.org/xmrv/index.html
Overview
"The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response inc, which result in chronic immune activation and immune deficiency.
"We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.
"This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.
"Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others.
"As National Academy of Sciences member and expert retrovirologist, John Coffin wrote in the commentary accompanying our landmark publication in Science "One New Virus-How many Old Diseases". We look forward to translating this discovery into treatment options!" The WPI has also put together a webpage of questions and answers about the research at: http://wpinstitute.org/xmrv/xmrv_qa.html One of the questions is as follows -
Question:
"Does this latest information prove once and for all that ME/CFS is not a psychological or psychosomatic illness as described by those who don't understand the disease?
Answer:
"Absolutely! Actually, there are thousands of research articles showing the very real biological problems that ME/CFS patient's experience such as low NK cell count and function, MRI and SPEC scan changes, and repeated chronic infections, to mention just a few. Only the most stubborn and misinformed individuals refuse to believe that this disease is real and serious. The process of placing poorly understood illnesses into a psychological category is very similar to what happened in the early days of MS and epilepsy before the advent of technologies which proved the illnesses were "real." Unfortunately, many in the scientific and medical fields have not learned from their past mistakes."
Set up earlier this year, the Mission of European Society for M.E. states:
"Our mission is to create a Think Tank where top scientists from relevant fields can discuss current M.E. knowledge in order to determine the most crucial direction of future research, and to provide a reliable source of cutting-edge M.E. information that E.S.M.E. will incorporate in the education of medical professionals."
Statement from E.S.M.E. - http://esme-eu.com/home/statement-from-esme-european-society-for-me-article52-6.html
More Biomedical Research Needed
"M.E./C.F.S. (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a physical disease. It is not a product of the patients’ imagination and is not a psychological problem. Funds have been used for research into the hypothetical psychiatric nature of the disease at the expense of biomedical research. Future research needs to be interdisciplinary and focused on the causes, early diagnosis and treatment of M.E./C.F.S.
"The British National Health Service has published N.I.C.E. guidelines for this disorder which, according to E.S.M.E., are not helpful and might even induce relapse in some cases.
"E.S.M.E. will encourage research leading to the accumulation of new knowledge and to a better understanding of the disease, and will endeavour to raise funding for biomedical research in, and education about, M.E./C.F.S."
An article by Dr Peter Masters "The Cycle of Grace: Pressures – Prayer – Encouragement - Thanksgiving". Taken from the Sword and Trowel, issue No 1 2008.
The Sword and Trowel, a Christian magazine, was started by C H Spurgeon in 1865 and is still going strong today. It is designed to "stress the doctrines of grace coupled with the need for vigorous evangelism". I would recommend the following articles from the recent Sword and Trowel magazine, issue No 1 2009 -
This Christian website, which I have only recently come across, contains numerous articles, audio and video files. Run by a former Roman Catholic priest, the Berean Beacon, as it says on the site, is "primarily an evangelistic ministry promoting the Gospel of Jesus Christ wherever possible. The ministry places particular emphasis on the evangelization and conversion of Catholics. The other main thrust of the ministry is to inform evangelical Christians about Catholicism through speaking engagements, distribution of literature, tapes, CDs, and DVDs".
I would recommend this new book by Canadian M.E. expert Dr Byron Hyde. He gives information about the differences between M.E. and C.F.S., as well as looking at tests that can be done which show up some of the physical abnormalities that exist in M.E. patients. The book includes the Nightingale Definition of M.E.
The Invest in M.E. organisation ran a conference in May of this year, "Management, Treatments and Latest Advances in Research into M.E./C.F.S". The speakers, who came from a number of countries, included Mrs Annette Whittemore, Prof Garth Nicolson, Dr Jonathan Kerr, Dr Barbara Baugarten, Dr John Chia, Prof Kenny De Meirleir, Prof Harald Nyland, Dr Daniel Peterson, Dr Judy Mikovits and Prof Basant Puri - most of those names being familiar to many in the M.E. World. The talks were all recorded and are available on DVD.
July 2009
Judicial Review of the NICE Guideline on C.F.S./M.E. In February of this year two M.E. sufferers brought a Judicial Review against the Guideline on "C.F.S./M.E." produced in August 2007 by the National Institute for Health and Clinical Excellence (N.I.C.E.). The Judicial Review was not successful, but some of the documents provided by the two claimants for their lawyers are available to read online and may be of interest and help to those with M.E., their families and friends. Some of those documents are as follows -
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) http://www.meactionuk.org.uk/FACTS_re_GET.htm
Immunological, neuroendocrine and neurological evidence (including evidence of CNS inflammation) documented in ME/CFS that NICE chose to ignore in the production of its Clinical Guideline 53 http://www.meactionuk.org.uk/Immunol_and_neuroendo.htm