For clarity, this document uses ME in reference to the disease Myalgic Encephalomyelitis, CFS in reference to idiopathic chronic fatigue, and CFS/ME when referring to the attempts by psychiatrists to merge the two and redefine Myalgic Encephalomyelitis as a somatoform disorder (i.e. a psychiatric condition).
We, the undersigned, request that the Panorama Team conduct an investigation into the conduct of the Department of Health, Medical Research Council and National Institute for Clinical Excellence with regards to the diagnosis, treatment and research of the neuro-immune disease Myalgic Encephalomyelitis (ME)1 - the disease that affected the late Lynn Gilderdale.2
Why has the Department of Health allowed psychiatrists to dismiss a seriously debilitating,3 potentially fatal disease as so called “chronic fatigue syndrome”? Why have psychiatrists been allowed and even encouraged to monopolise both treatment and research of a disease?
These government bodies are responsible for sufferers of ME being given a
meaningless “waste basket” diagnosis of “chronic fatigue syndrome” and then
prescribed Cognitive Behavioural Therapy(CBT) “to correct their abnormal
illness beliefs”, in addition to being coerced into potentially dangerous and
unproven Graded Exercise Therapy(GET) programmes. When this approach
fails to work, or results in further disability, it is the patient that is often
blamed for failing to recover.
The UK is a member of the World Health Organisation(WHO), which has defined ME as a neurological disease since 1969. The criteria for ME are best described by the Canadian Consensus Document.4 Psychiatrists use their own vague Oxford Criteria5 which requires neither myalgias nor encephalomyelitis, the main criterion being only “fatigue”. Those using the Oxford Criteria in relation to “CFS/ME” are in fact studying only idiopathic chronic fatigue and claiming otherwise.
The Wessely School6 psychiatrists claim that ME does not exist7, and that patients are in fact suffering from “chronic fatigue syndrome”, a somatoform disorder (i.e. psychiatric). They insist that doctors should avoid legitimisation of symptoms8 and recommend that no investigations should be conducted to confirm the diagnosis.9 Despite well documented evidence to the contrary10, in 1997 Michael Sharpe stated his view that “Suicide is the only cause of death in CFS”.11 The Wessely School “medical” advisors are influential in the UK
benefits system and oppose the payment of disability benefits to
“CFS/ME” claimants.12 In 1999 Michael Sharpe revealed his view towards “CFS/ME” patients by referring to them as “the undeserving sick”. This campaign of misinformation13 has led to some ME sufferers being dismissed as malingerers by their doctors and on occasion verbally abused.14 There have also been attempts to have ME reclassified as a psychiatric disorder.15
NICE does not acknowledge or recommend the tests that diagnose ME.
Instead NICE recommends tests known not to show disease and as a result
there is no empirical diagnosis available on the NHS. There are many
abnormalities to be found in ME patients, when the correct tests are done,
including abnormal blood flow to the brain, brain lesions, abnormal spinal
fluid and immune system dysfunction.16 Instead diagnosis remains that of
“exclusion” and the absence of a proper medical investigation also leads to
misdiagnosis and neglect of patients with treatable conditions.17
The government-funded MRC18 is intended to be an independent body that
supports research across the biomedical spectrum. With regards to ME, this is
not the case. The soon to be published MRC PACE19 trial, studying the
effects of CBT and GET, is just one example of government funds being
awarded solely to psychologically based studies. This misuse of millions of
pounds of tax payers' money is an insult to ME sufferers and their care givers. Professor Malcolm Hooper lodged a formal complaint against the MRC PACE
trial highlighting the dangers of such a study on ME patients. Sir Michael
Rawlins, the chairman of NICE, is ultimately responsible for providing
guidance on the appropriate treatment and care of people with specific
diseases and conditions. He refused to even read the Report of Evidence20
Professor Hooper sent him supporting his complaint.
Sufferers of ME desire to know why the MRC is withholding files from the general public on ME that date back to 1988. These files are to remain closed until at least 2071, an extraordinarily long period for files that are of great significance to public health.21
A peer reviewed study by the Whittemore Peterson Institute(WPI)22, recently
published in Science, strongly links the newly discovered human retrovirus
XMRV to a well defined cohort of ME patients. Why was a UK XMRV study
by Imperial College London, involving psychiatrists, then quickly rushed
through and given only four days for peer review? The resulting study was
unable to find XMRV in any of the 186 samples, whereas the WPI study
found XMRV in 3.7% of controls. Even if every patient in the Imperial
College cohort had idiopathic chronic fatigue and not ME, if their testing had
been done adequately they should still have detected XMRV in several
samples. How can the Department of Health justify never having commissioned or
evaluated any research on the relationship between ME and blood-related
disorders? There have been well documented outbreaks of ME dating back to
1955 and the potential for transmission through blood, organs, and sperm. A
Freedom of Information request revealed that the UK Advisory Committee on
the Virological Safety of Blood discussed the need to screen blood for the
infection that causes ME in 1991 - why was this never acted on? It is a fact
that XMRV23 is present in the UK as more than a dozen ME sufferers have
already tested positive through VIPdx.24
The recently published findings from the All Party Parliamentary Group on
ME25 conclude that the government has given “insufficient attention to
biomedical research.” To prevent further mistreatment and neglect of ME
sufferers there is an urgent need for the government to recognise, manage and
research ME as a serious disease. Until the government corrects its approach
towards the diagnosis, treatment and research of ME, patients will remain
vulnerable to coercion by doctors into potentially harmful GET and CBT
programmes. Those severely affected remain at risk of being sectioned under
the Mental Health Act, an inexcusable action which in Sophia Mirza's case
hastened her death.26 Yours Sincerely,
1. Myalgic Encephalomyelitis: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation.
2. Lynn Gilderdale 1977-2008 http://www.lynngilderdale.net/tribute.html
3. “I hope you are not saying that (ME)CFS 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/CFS physicians, Professor of Medicine and Immunology, University of Miami. New York Times, 15th October 2009.
6. Professor Simon Wessely, Institute of Psychiatry, King's College London and his peers including Michael Sharpe. See Illustrations
of Wessely's Words pages 23-30 of “Magical Medicine: How to make a disease disappear”
7. “The label of CFS avoids the connotations of pseudo-disease diagnoses such as ME" Chronic fatigue syndrome and occupational health. A Mountstephen and M Sharpe Occup Med 1997:47:4:217-227
8. “The conventional wisdom is that illnesses are made real when they are
legitimised by a doctor's diagnosis..... reinforcement of unhelpful illness beliefs can have an unhelpful
effect on patients”
“ME: What do we know (real physical illness or all in the mind?)”
Lecture given in October 1999 by Michael Sharpe, hosted by the University of
Strathclyde. Referenced from http://www.meactionuk.org.uk/Quotes_from_Mike_Sharpe.htm
9. “The use of tests to diagnose the chronic fatigue syndrome should be done only in the setting of protocol-based research.......We consider a mental status examination to be the minimal acceptable level of assessment." The Chronic Fatigue Syndrome: A Comprehensive Approach to its Definition and Study. K. Fukuda, S. Straus, M Sharpe et al Ann Int Med 1994:121:12:953-959
10. See ME/CFS causes death pages 15-17 of “Magical Medicine: How to make a disease disappear” http://www.meactionuk.org.uk/magical-medicine.pdf
11. Chronic Fatigue Syndrome: A Practical Guide to Assessment and
Management. M Sharpe et al Gen Hosp Psychiat 1997:19:3:185-199
12. See UNUMProvident Policy that underlies the MRC PACE Trial and The Woodstock Connection pages 60-62 “Magical Medicine: How to make a disease disappear.” http://www.meactionuk.org.uk/magical-medicine.pdf
13. Illustrations of the effects of the psychiatric lobby’s dissemination of misinformation pg 83-85 “Magical Medicine: How to make a disease disappear.” http://www.meactionuk.org.uk/magical-medicine.pdf
14. Comments of doctors to ME patients pages 85-86 of “Magical Medicine: How to make a disease disappear.” http://www.meactionuk.org.uk/magical-medicine.pdf
15. In 2001 the WHO Collaborating Centre for Research and Training for Mental Health, Institute of Psychiatry, Kings College, London tried and failed to unofficially change the classification of CFS and ME to F48.0. See also “Attempts to reclassify ME/CFS as a mental disorder” on page 53 of “Magical Medicine: How to make a disease disappear.” http://www.meactionuk.org.uk/magical-medicine.pdf
18. The MRC receives annual ‘grant-in-aid’ funding from Parliament
through the Department for Business, Innovation and Skills (BIS)
19. Pacing, Graded Activity, Cognitive Behavioural Therapy: a Randomised Evaluation.
20. The report entitled “Magical Medicine: How to make a disease disappear” is a 442 page document prepared by Professor Malcolm Hooper in support of his formal complaint with regards to the MRC PACE Trial.
21. Files on Myalgic encephalomyelitis (ME)/postviral fatigue syndrome
(PFS): papers and journal articles; correspondence and enquiries with
MRC replies, item code FD 23/4553/1, in the National Archives at Kew.
http://www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATLN=7&CATID=-5475665&j=1 For further reading see The MRC's Secret Files on ME/CFS pages 44-48 of “Magical Medicine: How to make a disease disappear” http://www.meactionuk.org.uk/magical-medicine.pdf
22. The Whittemore-Peterson Institute for neuro-immune disease in Reno Nevada.
23. Xenotropic Murine leukaemia virus Related Virus, a human retrovirus.
24. VIPdx is licensed to use the WPI's protocols, http://www.vipdx.com
25. As noted in the Gibson report, there has also been far too much emphasis in the past on psychological research and insufficient attention to biomedical research.” All Party Parliamentary Group on ME Inquiry into NHS Service Provision for ME/CFS published March 2010. http://www.meassociation.org.uk/images/stories/appg_final_report.pdf
26. Sophia Mirza died from ME in 2005. The Case of Sophia Mirza pages 81-83 of “Magical Medicine: How to make a disease disappear”.