A critical response to the Inquiry into the status of CFS/ME and research into causes and treatment by the Group on Scientific Research into Myalgic Encephalomyelitis (ME) : The “Gibson Report”.
Greg & Linda Crowhurst February 1st 2007
“Please take this illness seriously. Thousands of people are affected. It ruins lives, it’s ruined mine – I used to be a happy, very active, young person with a good job and a great social life – I am now housebound (back living with my parents), with a painful debilitating condition which affects every part of my life. More money has to go into researching this very physical condition to find a cure or if not an effective treatment.”
25% Group Member
“In making its recommendations the Report serves the needs of the poor, sick, disadvantaged and marginalised. It has also exposed so much that can only be viewed as calculated deception or gross incompetence within the medical, scientific, commercial, and political establishments.
There is much that needs urgent follow-up.”
Professor Malcolm Hooper (2006)
"The Gibson Report is the best Report on CFS/ME to appear since the National Task Force Report in 1994; it should be acknowledged as such and its many strengths should be recognised and utilised."
Margaret Williams (2006)
The 25% Group’s submission to the Gibson Inquiry (2005) “presented shocking evidence of abuse at the hands of the psychiatric lobby. Our members have reported being locked in secure psychiatric wards or AIDS units and their lack of response to “treatment” being taken as an
indication of their misguided thinking.“
One member stated: “ This will be revealed as one of the biggest medical scandals in history.” In our submission to the Inquiry, 25% Group members asked for the following:-
Funding for physical research
People with WHO-defined ME to be separated from those suffering from Chronic fatigue.
An epidemiological study
Appropriate diagnostic criteria
Correct treatment
To “sincerely and proactively promote the truth that severe ME/CFS is a profoundly disabling condition affecting multiple systems of the body and that people who have the condition are Not malingering; Not just tired; Not just not trying hard enough, and urgently require adequate and appropriate support.”
The Report’s conclusions broadly echo the call of the 25% Severe ME Group. Here is an opportunity for change. It must be grasped.
The Report needs to be read with awareness and insight. It is important to emphasise that the Gibson Report is written in the scientific style of reporting information, with observation and conclusion, based “on the available evidence” (1.2).
Every comment needs to be seen in context of the Report’s overarching concerns:
The condition does not currently have a name, or suitable diagnostic criteria that reflects its pathology (1.1)For the severely affected the current regime of symptomatic and psychosocial treatments are not satisfactory. (1.1). The intention is to highlight the ongoing struggle of the ME community and to make the voice of the patient heard. (1.2) It is vital that much more research is conducted into causes and treatment (1.5:7)
None of these assertions lend any support to the prevailing psychiatric paradigm; which is exposed and found wanting.
The report’s contents can be broken down into three powerful campaign platforms:
1. Massive investment into and commissioning of biomedical research projects.
• The Group is particularly concerned that key recommendations of the CMO’s Report (2002) have been ignored, that NICE does not mention the possibility of organic causes, and that the Medical Research Council (MRC) has not funded any major biomedical research, and should do more to encourage applications for this (5.2)
• Since April 2003 the MRC has turned down 10 biomedical applications (5.2) and advocated concentrating research effort on case management and interventions rather than causes, pathogenesis or means of confirming the diagnosis (5.2)
• The Group believes that more research into potential causes might lead to better diagnostic tests. (1.4) This is vital in order to ensure that people are treated appropriately.
• The Oxford criteria focus very little on symptoms, are too inclusive of other fatigue conditions, and are out of date (2.5.2).
• Despite the fact that Parliament has recognised ME as a physical illness since 1988 (2.2), there has been a clear historical bias towards research into the psychosocial explanations of ME (2.2), with ME currently listed, wrongly, in leading medical textbooks under the psychology section (2.5).
• ME has innumerable potential causes, but not enough research has been done in order to verify any one cause. (The great disappointment of Gibson’s Report is that there is not yet enough research evidence to validate the biomedical findings fully, which is no wonder with virtually no research money being allocated. Scientific research needs to be comprehensive and repeatable, with clear criteria in order to make any findings helpful to the ME community. Gibson is apparently backing the Canadian definition and the biomedical approach, but cannot do more because of current limited evidence.)
• Alongside research into causes it is just as important to research potential new therapies (4.0)
• CBT, GET, Pacing are recognised as potential symptomatic treatments and not cures, GET in particular is recognised as potentially dangerous (4.6) and evidence from the 25% Group is used to show this.
• The group supports the new ME/CFS treatment centres currently under development stating that they would be ideal places to undertake large-scale epidemiological research, however they may need to change their focus and their treatment (5.0).
2. The establishment of an independent panel made up of virologists, immunologists, biochemists, endocrinologists, geneticists to review the international and UK biomedical evidence to identify areas for further research. (3.0 and 7.0)
• Specifically this “panel should exclude psychiatrists and psychologists and be independent of the existing CFS/ME debate.” (Dr Gibson’s letter to the Chief Medical Officer).
3. The highly unsatisfactory NICE and DWP guidelines on CFS/ME.
• There is a blatant conflict of interests with numerous advisors to the DWP having consultancy roles in medical insurance companies. There should be a full investigation of this by the appropriate standards body (6.3).
• NICE must urge research into causation, therapeutic interventions and models of care (5.0).
• At present ME / CFS is defined as a psychosocial illness by the DWP and medical insurance companies, which could be in both their financial interests (6.0). Not one representative who appeared at the Oral hearings proposed that ME/CFS was entirely psychosocial (7.2.3) Yet this is the only “treatment “ on offer. The need to offer appropriate treatment is urgent, as one of our members commented in the 25% Group’s Submission to the Inquiry: “To go through so much and to have so little understanding or even sympathy is really indescribable. My nightmare is far from over. I would gladly have chosen death, and may yet have to. I do not suffer from clinical depression, nor have I ever. I was a happy, social young woman, (working as a nurse) when I first became ill. My life has been ruined now beyond repair.”
• The group feels that ME sufferers should be offered high rate DLA and that the sooner there is a biomedical model of assessment for this illness the better (6.1).
• At the moment patients are at a major disadvantage because of the controversy surrounding the cause of their illness and suggestion that it might be psychosomatic (6.2). This means that ME sufferers have to live with the double burden of fighting for their health and their benefits (6.2) and the new benefits policy may still be discriminatory (6.3). This must be addressed and put right.
The Challenge
“The challenge facing us is to learn to perceive and ride the waves of change or else risk sinking in an over-populated pool of confused, dispirited and frantic people.” Greg Crowhurst (1993)
The Report does not just ask for more funding, it clearly exposes why, it shows the danger of not having a clearly identifiable disease entity, it exposes how easily the ME illness can be confused with other illnesses without tighter criteria and it exposes the DWP, the MRC and NICE.
Parts of the report are controversial, especially the assertion that “ME is very unlikely to occur in infants and young children” (2.4) and the seeming legitimacy given to the unproved construct of MSBP (F11) - Munchausen Syndrome By Proxy.
As we emphasised at the beginning though, Gibson’s Report is a review of scientific evidence, not a debate. It can only concern itself with the evidence that is presented to it and evaluate that evidence from an objective, scientific perspective.
Unfortunately, “the positive aspects of the Report have been criticised and the reviewers have been verbally abused, often forcefully.” (William's 2006). It is extremely important not to let criticism of the report deflect from this, the best chance of some change the ME community has had for many years
Conclusion
The three potential campaign platforms indicated in this Report:-
o lobbying the MRC to fund biomedical research
o advocating for the establishment of a medical review panel, that specifically excludes psychiatrists and psychologists
o tackling NICE and the DWP head-on, by calling for a Standard’s Body investigation of the DWP and urging NICE to recommend research into causation, therapeutic interventions and models of care.
o offer enormous potential to meet the expectations and demand of members that services are moved away from the inappropriate involvement of the psychiatric lobby, and for proper treatment and even a cure.
They must be realised.
References :
Crowhurst G (2005) 25% Group Submission to the Gibson Inquiry www.25megroup.org
Hooper M (2006) A Response and Appreciation of the Gibson Inquiry Report 5th Dec 2006
www.meactionuk.org.uk/Hooper_response_to_Gibson_Report.htm
Williams M (2006) A Few facts About the Gibson Report 28th Nov 2006
www.meactionuk.org.uk/A_few_facts_about_the_Gibson_Report.htm
Crowhurst G, Riding the Wave, Community Living Magazine, July 1991, pp14-16
Friday, 9 February 2007
Wednesday, 7 February 2007
Feedback from The ME Association
MAY BE REPOSTED
Below is a summary of key points raised by The ME Association during the meeting at the House of Commons on Tuesday 6 February to discuss feedback to the Gibson Inquiry Report.
A detailed summary of the meeting is being prepared for the March issue of ME Essential magazine.
Dr Charles Shepherd
Medical Adviser, The ME Association
-------------------------------------------------------
1 THE MEA RESPONSE
The ME Association has already made it clear in our public statement that we welcome many of the key recommendations and conclusions in the report.
We have set up an archive blog for all the presentations to the five oral hearings (http://meagibsoninq uiry.blogspot. com) and a feedback blog (http://gibsonfeedba ck.blogspot. com) where anyone can post comments on the report. The feedback blog was set up following a request from Dr Richard Taylor MP for the MEA to act as a central collecting point for public comment. We hope that members of the Inquiry group will take time to read the comments that have been posted on the feedback blog.
We are also very keen to continue to co-operate with the Gibson Inquiry team regarding future initiatives, in particular the proposed Early Day Motion (EDM).
2 CONCERNS ABOUT SPECIFIC SECTIONS IN THE REPORT
We share some of the concerns that have been expressed by our members about a number of either unhelpful or inaccurate statements in certain key areas of the report.
In particular:
SECTION 2.4 ME IN TEENAGERS AND CHILDREN
This section should have included specific reference to the important information given by Dr Nigel Speight in his presentation to the fourth oral hearing. The sentence containing the statement ....possibly in children is going to be interpreted as indicating that a diagnosis of ME/CFS is unlikely in children. It should therefore be rewritten.
SECTIONS 3.1 THE ORAL HEARINGS & 3.2 OTHER EVIDENCE WE RECEIVED
This should include a complete list of speakers (possibly as an appendix) from all five oral hearings
In relation to the evidence presented by Dr Byron Hyde (3.2) on neuroimaging studies (ie MRI, PET and SPECT scans), it is incorrect for the report to say that Again, others have yet to confirm or refute these observations. The results of a considerable number of published papers relating to abnormal findings using neuroimaging techniques add considerable weight to the classification by WHO of ME (and CFS) as a neurological disorder in G93:3 of ICD 10. Further evidence of neuroimaging abnormalities, including references to published papers, was presented to the first oral hearing by the MEA. A transcript of this presentation is available on the official Gibson Inquiry website: http://erythos. com/gibsonenquir y/PresDocs. html
SECTION 3.3.4 VACCINATION
We know of no evidence to support the claim that Vaccination is often blamed for unexplained outbreaks of illness and regularly appears in the media being accused of such. The evidence for vaccines acting as a trigger factor in ME/CFS is both theoretical (as the CMO report acknowledged) and anecdotal - with at least four physicians who presented evidence to the oral hearings (ie Drs Hyde, Shepherd, Weir and Professor Pinching) having experience of cases where vaccines have been involved - hepatitis B in particular. The statement that The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be the cause is therefore most unhelpful and will no doubt be used to deny industrial injury benefits to people with vaccine precipitated ME/CFS who may well have a good case to make.
SECTION 4.2 EXISTING TREATMENTS
It is incorrect to include pacing (in 4.5) as the third of the three psychosocial therapies.
SECTION 6.0 BENEFIT ENTITLEMENT
It is incorrect to state in 6.1 in reference to the Disability Living Allowance that: Therefore claimants are not entitled to the higher level of benefit payments. People with ME/CFS do have great difficulty in claiming higher rate care and/or mobility component of DLA (as acknowledged in the ministerial reply from Maria Eagle quoted in 6.2) but there has been no statement from the DWP to indicate that higher rate claims cannot be made. A number of people with ME/CFS do, in fact, successfully claim higher rates of DLA. Unfortunately, this inaccuracy has now been repeated in the press (ie You magazine, Mail on Sunday, January 21) and this may well result in people with severe ME/CFS not submitting a claim for higher rate DLA because they assume they cannot do so.
Whilst appreciating that the report was finalised in very difficult circumstances in order to meet the deadline for submissions to the NICE guideline development process, we believe that these sections must be looked at again and some form of clarification or correction made.
3 HOW CAN THE REPORT BE USED TO CHALLENGE DAMAGING NEW GUIDANCE FROM THE DWP, NICE AND NHS PLUS?
Consideration now needs to be given as to how the key message in this report - ie that the past and current clinical and research emphasis on psychological and social factors in causation and management has been highly detrimental to patients - must be taken forward, especially in relation to unacceptable guidance on the illness that:
a.. has already been issued by NHS Plus in relation to employment
b.. is about to be issued by the DWP in relation to disability benefits
c.. is being proposed by NICE in relation to clinical assessment and management
NB Joint responses from the main ME/CFS support organisations have already been sent to the DWP and NICE. The MEA is currently co-ordinating a joint response to the NHS Plus guidance.
The ME Association
6 February 2007
Below is a summary of key points raised by The ME Association during the meeting at the House of Commons on Tuesday 6 February to discuss feedback to the Gibson Inquiry Report.
A detailed summary of the meeting is being prepared for the March issue of ME Essential magazine.
Dr Charles Shepherd
Medical Adviser, The ME Association
-------------------------------------------------------
1 THE MEA RESPONSE
The ME Association has already made it clear in our public statement that we welcome many of the key recommendations and conclusions in the report.
We have set up an archive blog for all the presentations to the five oral hearings (http://meagibsoninq uiry.blogspot. com) and a feedback blog (http://gibsonfeedba ck.blogspot. com) where anyone can post comments on the report. The feedback blog was set up following a request from Dr Richard Taylor MP for the MEA to act as a central collecting point for public comment. We hope that members of the Inquiry group will take time to read the comments that have been posted on the feedback blog.
We are also very keen to continue to co-operate with the Gibson Inquiry team regarding future initiatives, in particular the proposed Early Day Motion (EDM).
2 CONCERNS ABOUT SPECIFIC SECTIONS IN THE REPORT
We share some of the concerns that have been expressed by our members about a number of either unhelpful or inaccurate statements in certain key areas of the report.
In particular:
SECTION 2.4 ME IN TEENAGERS AND CHILDREN
This section should have included specific reference to the important information given by Dr Nigel Speight in his presentation to the fourth oral hearing. The sentence containing the statement ....possibly in children is going to be interpreted as indicating that a diagnosis of ME/CFS is unlikely in children. It should therefore be rewritten.
SECTIONS 3.1 THE ORAL HEARINGS & 3.2 OTHER EVIDENCE WE RECEIVED
This should include a complete list of speakers (possibly as an appendix) from all five oral hearings
In relation to the evidence presented by Dr Byron Hyde (3.2) on neuroimaging studies (ie MRI, PET and SPECT scans), it is incorrect for the report to say that Again, others have yet to confirm or refute these observations. The results of a considerable number of published papers relating to abnormal findings using neuroimaging techniques add considerable weight to the classification by WHO of ME (and CFS) as a neurological disorder in G93:3 of ICD 10. Further evidence of neuroimaging abnormalities, including references to published papers, was presented to the first oral hearing by the MEA. A transcript of this presentation is available on the official Gibson Inquiry website: http://erythos. com/gibsonenquir y/PresDocs. html
SECTION 3.3.4 VACCINATION
We know of no evidence to support the claim that Vaccination is often blamed for unexplained outbreaks of illness and regularly appears in the media being accused of such. The evidence for vaccines acting as a trigger factor in ME/CFS is both theoretical (as the CMO report acknowledged) and anecdotal - with at least four physicians who presented evidence to the oral hearings (ie Drs Hyde, Shepherd, Weir and Professor Pinching) having experience of cases where vaccines have been involved - hepatitis B in particular. The statement that The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be the cause is therefore most unhelpful and will no doubt be used to deny industrial injury benefits to people with vaccine precipitated ME/CFS who may well have a good case to make.
SECTION 4.2 EXISTING TREATMENTS
It is incorrect to include pacing (in 4.5) as the third of the three psychosocial therapies.
SECTION 6.0 BENEFIT ENTITLEMENT
It is incorrect to state in 6.1 in reference to the Disability Living Allowance that: Therefore claimants are not entitled to the higher level of benefit payments. People with ME/CFS do have great difficulty in claiming higher rate care and/or mobility component of DLA (as acknowledged in the ministerial reply from Maria Eagle quoted in 6.2) but there has been no statement from the DWP to indicate that higher rate claims cannot be made. A number of people with ME/CFS do, in fact, successfully claim higher rates of DLA. Unfortunately, this inaccuracy has now been repeated in the press (ie You magazine, Mail on Sunday, January 21) and this may well result in people with severe ME/CFS not submitting a claim for higher rate DLA because they assume they cannot do so.
Whilst appreciating that the report was finalised in very difficult circumstances in order to meet the deadline for submissions to the NICE guideline development process, we believe that these sections must be looked at again and some form of clarification or correction made.
3 HOW CAN THE REPORT BE USED TO CHALLENGE DAMAGING NEW GUIDANCE FROM THE DWP, NICE AND NHS PLUS?
Consideration now needs to be given as to how the key message in this report - ie that the past and current clinical and research emphasis on psychological and social factors in causation and management has been highly detrimental to patients - must be taken forward, especially in relation to unacceptable guidance on the illness that:
a.. has already been issued by NHS Plus in relation to employment
b.. is about to be issued by the DWP in relation to disability benefits
c.. is being proposed by NICE in relation to clinical assessment and management
NB Joint responses from the main ME/CFS support organisations have already been sent to the DWP and NICE. The MEA is currently co-ordinating a joint response to the NHS Plus guidance.
The ME Association
6 February 2007
Thursday, 1 February 2007
from Douglas Fraser
During the UK Medical Research Council’s Public Consultation period for ME/ CFS in 2002-2003, and while the PHRU’s Report on that Consultation was being suppressed by the MRC, the following individuals, amongst others being criticised within the PHRU document, were appointed to MRC Boards - ‘acting as a core body of scientific advisors, assessing applications to the MRC..’.
Dr T Chalder HSPHRB Representative, Department of Psychological Medicine Institute of Psychiatry London
Dr A Cleare NMHB Representative, Department of Psychological Medicine Institute of Psychiatry London
Professor A David NMHB Representative, Department of Psychological Medicine Institute of Psychiatry London
Professor A E Farmer Ordinary Member, Social, Genetic & Developmental Psychiatry Institute of Psychiatry London
Dr J R Geddes NMHB Representative, Department of Psychiatry University of Oxford
Dr S M Lawrie NMHB Representative, Department of Psychiatry University of Edinburgh
Dr M C Sharpe Ordinary Member, Department of Psychological Medicine University of Edinburgh.
Dr T Wykes Ordinary Member, Psychology Institute of Psychiatry
Professor PD White at the Department of Psychological Medicine at St Bartholomew's London is a more recent addition, along with Professor R P Bentall from the School of Psychological Sciences at the University of Manchester and Professor P Cowen at the Psychopharmacology Research Unit Warneford Hospital in Oxford.
Professors K Bhui of Barts, R Bentall, S Wessely and F Creed have all been MRC Board Members in the recent past.
“Insider trading” is a criminal offence in Finance incurring unlimited fines and custodial sentencing, and it is surely time and even more important to apply the same or similar regulations and penalties for its equivalent in the field of Medicine and Public Health.
Monday, 29 January 2007
from Tom Kindlon (2)
In my last piece, I mentioned that I thought the MRC Research Strategy for CFS/ME http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC001895
was deeply flawed and suggested comparing and contrasting it with the requests for research applications that the NIH has prepared in the US. In my submission to you in December 2005 (which I can send again if you would like), I wrote (with the help of a colleague, Orla Ni Chomhrai) about the problems we saw in the final MRC Research Strategy. We gave them the following loose headings:
A) The first problem was that they did not undertake a review of the scientific literature on ME/CFS
B) They did not follow their terms of reference
(i.e. "To consider the Report of the CMO’s working party on CFS/ME, including its recommendations for research, To consider other recent reviews of current knowledge and understanding of CFS/ME, To take account of patient and lay perspectives, To recommend to MRC a research strategy to advance understanding of the aetiology, epidemiology and biology of CFS/ME and, In the light of current knowledge suggest what areas of further research are needed with regard to possible prevention, management (including diagnosis) and treatment." Minutes of 1st meeting, 4/9/2002).
These terms of reference weren’t just taken out of the air but from a specific request from the Dept. of Health e.g. “Mr. Todd: To ask the Secretary of State for Health what recent research his Department has commissioned into the causes of myalgic encephalomyelitis. [79186]
Ms Blears: The Department has asked the Medical Research Council (MRC), which receives its grant-in-aid from my right hon. Friend, the Secretary of State for Trade And Industry, via the Office of Science and Technology, to develop a broad strategy for advancing biomedical and health services research on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME),“
http://www.parliament.the-stationery-office.co.uk/pa/cm200102/cmhansrd/vo021107/text/21107w27.htm or Vhttp://tinyurl.com/32ra7v
C) "They see the problem with the lack of biomarkers but perpetuate it"
D) The report is overly dismissive of evidence for biological abnormalities and is written in a way that might turn researchers off looking at key areas of interest
E) Problematic view on role of infections
F) Serious error in section on Neurology
G) Immunology (i.e. problems with the Immunology section)
H) Problems with the discussion on interventions and almost uncritical examination of the evidence for CBT/GET's effectiveness
The final strategy was similar to the draft strategy (see below) so reading critiques of it (many can still be found on the Internet e.g. at http://listserv.nodak.edu/archives/co-cure.html ) will also give ideas about the problems I and others see in the "MRC Research Strategy for CFS/ME".
Part of the problem is that, for a person from outside the area, the "wool can be pulled over their eyes” by the strategy e.g. if you are not aware of the many things and ideas not covered by it. As I said, the final strategy was similar to the draft strategy except, helped by the feedback, they seemed to “soften down” statements that particularly jarred or were more overtly biased. Unfortunately they did not seem to take on board some of the more substantial points in the critiques of the draft.
In my last message I said I thought that the "MRC Research Strategy for CFS/ME" was drawn up in a very "peculiar" way.
I thought I would justify this comment, especially if a new committee might be formed to come up with a new strategy.
Firstly in 2002, Dr Chris Watkins was CFS/ME Programme Manager. This in itself may be significant as his general title was at the time "MRC Programme Manager for Research on Mental Illness and Drug Addiction." For an illness that is recognised as a neurological illness by the World Health Organisation, this seems a strange state of affairs and possibly suggests the attitude the MRC has to ME/CFS i.e. sees it as a mental health issue. [Unfortunately nothing much seems to have changed within the MRC - Dr Gavin Malloch, Programme Manager for Mental Health and Addiction, has responsibility for CFS/ME (ref. http://www.mrc.ac.uk/consumption/groups/public/documents/content/mrc001972.pdf) ]
The advisory panel that was drawn up to come up with the strategy was said to be "independent and fresh" when it was announced by Dr. Diana Dunstan at the All Party Parliamentary Group (APPG) on ME/CFS on the 12th June 2002. They were said to be "leading experts from various fields who did not previously specialise in CFS/ME".
This announcement was strange for two main reasons:
(i) It seems unlikely if they were coming up with a research strategy in another field that they would make a virtue out of not have knowledgeable people from the field involved - would they do this with Cancer, Multiple Sclerosis, Arthritis, AIDS, etc? It could be useful to have a panel with some new people to help brain-storm but a panel would normally have others with existing knowledge there to make comments e.g. about areas of research that are worth exploring further, areas of research that have been neglected or underfunded, issues about diagnostic criteria, etc.
(ii) The other obvious reason the announcement was strange was that the faces weren't totally fresh at all as two had been published in the CFS area before:
a) Alan McGregor had previously published two PubMed-listed papers on CFS before, both co-written with the psychiatrist Simon Wessely.
Prof. McGregor was also listed "Member of the Linbury Advisory Panel on CFS" in the first Linbury Trust "Member of the Linbury Advisory Panel on CFS" in the first Linbury Trust "Research Portfolio on Chronic Fatigue, edited by Robin Fox, published by the Royal Society of Medicine, London, July 1998. Indeed in media pieces in July 1998, Prof. McGregor is described as chairman of the Linbury Trust's scientific advisory panel on ME so clearly had already been involved in many discussions about ME/CFS.
I think it is interesting to read a short critique by Margaret Williams and Eileen Marshall of this booklet which Alan McGregor launched at a press conference in July 1998, given that he, like the other members of the MRC RAG, was being presented as “fresh and independent”:
“In July 1998 the Linbury Trust produced a booklet entitled "A Research Portfolio on Chronic Fatigue" (note: not chronic fatigue syndrome) it was published by The Royal Society of Medicine and was edited by Robin Fox for the Linbury Trust. Sixty-three per cent of the Linbury contributors are psychiatrists who might be said to belong to the "Wessely" school. Seventy per cent of the reported work supported by the Linbury Trust has a psychiatric - psychological dimension. Much of the work contained in the Linbury “portfolio" is based on the same poor epidemiology; the psychiatrists continue to confuse ME with chronic fatigue and with psychological illnesses such as depression. Evidence which shows ME to be an organic illness is excluded or devalued. The plight of the severely affected (and of children with ME) is ignored altogether.
On page 67 of the Linbury Trust "research portfolio" on chronic fatigue, there is an "Editorial Afterword": it contains a diagram drawn by Dr Anthony Cleare (who co-authored with Wessely the paper which states "There lies at the heart of CFS not a virus (or) immune disorder, but a distortion in the doctor-patient relationship": Anthony J Cleare. Simon C Wessely. Update 1996:61-69).
In summary, the "Editorial Afterword" affirms that patients with psychological defects are predisposed to develop ME / CFS owing to the mis-attribution of their symptoms to a physical cause. This prompts patients to avoid physical activity, which causes them to become deconditioned, which increases fatigue and psychological disturbance.
The message of the "research portfolio" into "CFS" is clear: cognitive behaviour therapy and drug therapy will control the patient’s mis-attributions.
Searching for causes is not only futile but may prevent recovery.
The first paper in the "research portfolio" is by Simon Wessely and is entitled "Epidemiology in CFS"; it has 18 references, of which no less than 10 (55%) are Wessely’s own papers. Ignoring all seminal papers which have charted the course of ME over the last 60 years, from sporadic cases to endemic clusters and as world-wide epidemics, Wessely recounts only his own work from 1988.
No attempt has been made in the Linbury Trust "research portfolio" to include the seriously and chronically disabled in any individual study.
Notwithstanding, in his "Editorial Afterword", Robin Fox proclaims: "we can state confidently that CFS is s symptom complex rather than a disease. . ..it is not an inflammation of brain or a muscle disease. . .numerous psychological disturbances have been identified"
If taken to its logical conclusion, much of this "research" work re-inforces the inhuman child protection system, directly leading children diagnosed as having ME I CFS to be forced into psychiatric units against their parents’ wishes. (Acknowledgment to Dr B.Dowsett: "Chronic Fatigue" and The Linbury Trust Research Portfolio: August 1998).
In the second Linbury Trust "Portfolio" on Chronic Fatigue published in 2000, Professor McGregor is still listed as "Member of the Linbury Trust Advisory Panel on CFS”. In the book, it states that "The Linbury Trust…began funding research into chronic fatigue syndrome in 1991 and has since become the major source of funding in this disease area….Before the Linbury Trust initiative, much of the knowledge base in this area was erroneous" [Between 1991 and 1998, the Linbury Trust gave £4 million to research into ME/CFS (I'm unsure of the total amount it has given).]
In a book review “New Research Ideas in Chronic Fatigue. Frackowiak R and Wessely, S (Eds.) Royal Society of Medicine. 2001.” http://freespace.virgin.net/david.axford/bookrev6.htm , Dr Ellen Goudsmit who did her Ph.D. on M.E. and is very knowledgeable about the literature that has been published, discusses the Linbury Trust:
“This is a book directed at patients and self-help groups, based on a conference organised jointly by the Novartis Foundation and the Linbury Trust. For the uninitiated, the Novartis Trust has a long history of hostility towards patients with CFS, which is why it virtually never invites any ME specialists or researchers from outside the CBT school to any of its conferences. They certainly didn’t this time. The Linbury Trust is a Sainsbury charity, which is not overtly hostile, but just has a strong ‘preference’ for research and other activities supporting the CBT explanation. (Most of their grants are for studies using the Oxford criteria, which in practice, exclude most people with ME. It also funded a booklet on exercises written by a patient of a psychiatrist from the CBT school. However, it refused three applications from scientists outside the CBT school, who wanted to compile updates featuring balanced and reliable medical information on CFS.) The background and motives are important as they explain why most of the discussion at this conference focused on issues like altered perception of effort, maladaptive self-monitoring, disordered attention, depression etc), why no one was interested in symptoms other than fatigue, lethargy, tiredness, pain and fragmented sleep*, why the title refers to chronic fatigue (as opposed to CFS) or why no one had the knowledge or interest to correct misconceptions or errors relating to the research.”
Here is another comment about the Linbury Trust written by Malcolm Hooper et al
The Linbury Trust has been funding almost exclusively psychiatric research into “chronic fatigue” since 1991. Those whose work has been supported by this Trust include psychiatrists Simon Wessely (a Reference Group member), Peter White, Anthony Cleare and behaviour therapist Trudie Chalder (all members of the influential Key Group). Anthony Cleare is a Linbury Trust Research Fellow. Other psychiatrists of the Wessely School who have been funded by the Linbury Trust include Anthony David ((see page 5 above) and Michael Sharpe. In its first “Research Portfolio” on “chronic fatigue”, the Linbury Trust states that one of its primary aims is to ensure that “the Government and its agencies…develop appropriate patient-support mechanisms”, which seems to bear resemblance to the stated aims of PRISMA. (ref: Research Portfolio on chronic fatigue, ed. R.Fox; RSM 1998). (Composite Response on the Final Version of the CMO’s Report of 31st August 2001 on CFS/ME edited by Professor Malcolm Hooper)
In a letter to Simon Lawrence, Co-Ordinator of the 25% ME Group (for people severely affected by ME), Prof. Radda (who was then the Chief Executive of the MRC) said they were "aware of Prof Macgregor's involvement with the Linbury Trust."
Professor McGregor was an important person on the panel as he was supposed to cover both immunology and endocrinology (and in itself it seems a bit unusual to have one person covering these two areas). It is not hard to argue that he should not have part of a “fresh and independent” panel.
B) Philip Cowen had co-written five PubMed-listed papers before, four of which were also co-written by the psychiatrist Michael Sharpe.
C) A third member of the panel was clearly very likely coming from a particular direction: Professor Til Wykes (who, like Simon Wessely, was in the Institute of Psychiatry). She was on record as believing about CBT that "If you encourage them to do things, as part of a treatment called cognitive behaviour therapy, then you do see improvement. It's a way of getting people to take control of their lives. It works, and it certainly shows that ours is not an aimless, ineffective science".
In the November 2002 issue of the journal "Psychological Medicine" a paper on Gulf War Syndrome co-written by her and Simon Wessely amongst others was published. Given the length of time it usually takes from when a paper is first written to when it is finally published (as they often have to be re-submitted and then aren't generally published instantaneously as a slot has to be found on it), this paper (or the research involved) had almost certainly been started when the panel was put together. Gulf War Syndrome and Chronic Fatigue Syndrome have been closely associated, both by psychiatrists and others.
I mention Simon Wessely and Michael Sharpe as they, along perhaps with Peter White and Trudie Chalder, could be described as the chief proponents of the "CBT school of thought" about CFS (some people even call it the "Wessely School of Thought" as Simon Wessely is so closely associated with it). They generally believe that CFS is largely perpetuated by maladaptive illness beliefs and behaviours and can be treated effectively by Graded Exercise (or activity) Therapy (GET) programmes along with Cognitive Behaviour Therapy (CBT) programmes based on Graded Exercise/Activity. Patients are seen as being deconditioned. These days they will sometimes say the condition is both physical and psychological but this seems to me to be more for P.R. reasons than anything else as the physical side of things is not seen as significant, and with symptoms seen as simply due to deconditioning, poor sleep, etc rather than an ongoing disease process. This view contrasts with the views of most patients and many other scientists and clinicians, who believe that the condition is "largely physical" i.e. there is a disease process (although accepting psychological factors can play a part in some patients). I think they could be described as “one trick ponies” - they seem to have made little effort to use the biomedical research that has been published to make more varied suggestions about what should be done for patients (especially given that there is a lot of evidence that there are subgroups within the vague “Chronic Fatigue Syndrome” definition (i.e. the Oxford criteria) that they have used in much of their research. So three people on this panel, who were likely to be coming from the CBT school of thought approach to the illness, had been selected for a panel of 12 (11 initially). There can always be random errors but the fact that three panellists were coming from this position while none seemed to be coming from a position which saw ME/CFS as largely physical/involving a disease process, seems unusual.
Also some of us had question marks over other members of the panel e.g. Dr Jackie Oldham. She was described, when the panel was announced, as covering “Muscle physiology”. This is an important area as muscle problems are a major part of M.E. When we looked into her background, we found that, at that stage, she had been working for many years in the Rehabilitation area. [Indeed in the completed research strategy, her area of expertise is described as “Muscle Physiology/Rehabilitation”].
This is interesting as one possible way to describe the "CBT school of thought" could be to say that they believe patients with "ME/CFS" can be rehabilitated. Drugs or biomedical methods are not a major part of their views. The problem of course is that in practice many people have not been able to rehabilitate themselves and indeed many patients believe their efforts to rehabilitate themselves have made them worse. Many patients and patient advocates believe any possible benefits that can be obtained by rehabilitation methods in the illness have been "hyped" by the proponents of the "CBT model for the illness". One comparison that could be made is that proponents of CBT model often appear to be like "drug peddlers"/salespeople for a treatment, hyping up the supposed efficacy of the treatment they promote and down-playing possible adverse effects from the treatment.
I do not know whether Dr Oldham's views about the illness were known at the time but she seems the sort of person who might get enthusiastic about the idea that patients could be rehabilitated or at least seems like a person who is less likely to suggest that the patients can't be rehabilitated.
So many felt they already knew the direction the panel was likely to go: there were a few people on the panel who could be proposing the CBT/rehabilitation/biopsychosocial model for the illness and there was no obvious person who was likely to criticise it. If another panel is set up it is important that this be rectified. If for some reason, a panel was being set up that did not have any people from the M.E. field on it who would challenge the CBT/Rehabilitation/Biopsychosocial model, perhaps someone like George Davey Smith (Professor of Clinical Epidemiology, Department of Social Medicine, University of Bristol) who has shown a willingness to explore and challenge the biopsychosocial model (judging by his chapter: "The biopsychosocial approach: a note of caution" in "Biopsychosocial Medicine: An integrated approach to understanding illness", edited by Peter White) could be useful? He summarised his piece as follows: This chapter will provide a cautionary critique of whether the biopsychosocial (BPS) model is useful in understanding aetiological factors in chronic diseases. I will illustrate the arguments by referring to studies of peptic ulcer and ischaemic heart disease. I will show that bias and confounding can generate spurious findings and associations, especially in observational studies. When interventional studies have been used to examine the efficacy of a psychosocial approach the results have been disappointing.
[Aside: I don't know enough about George Davey Smith to say whether he would be sufficient on his own -I think to have any sort of balance in a panel, one needs to have at least one person who is firmly convinced (either through having the illness themselves or close knowledge of the lives of sufferers) that many/most/all people with M.E. can’t recover through rehabilitation methods. Otherwise one can end up with a strategy where “all the eggs have put into one basket” (i.e. based on the idea that patients can be fully “rehabilitated”) despite the fact that most people in the area should know this is not true]
The next stage of drawing up the strategy was the first consultation. This involved replying to a questionnaire. Many people commented on the Internet that they felt this questionnaire was quite directed and did not give much space for comments. If there was another review and if it involved a consultation, it should learn from the problems with this one. It would be also interesting to know how this questionnaire was drawn up given that - for example, who did it and did they have an agenda when doing it? It was drawn up and circulated and its consultation period ended before the first meeting of the advisory panel on 4/9/2002.
A few months later, a draft research strategy was released. The file had Dr. Chris Watkins name on it so there seems a good chance he wrote it or at least it was prepared on his computer.
The file used to be available until recently on the MRC website at
http://www.mrc.ac.uk/pdf-cfs_consultation_draft_final_version.pdf but has recently been deleted - it is still available at http://www.meactionuk.org.uk/pdf-cfs_consultation_draft_final_version.pdf
I and many others were very unhappy with recommendations contained in it such as the following in the summary:
“In view of the probable multiplicity of causal factors and the widely disparate findings so far reported, the MRC CFS/ME Research Advisory Group considers that studies investigating potential causal pathways and mechanisms, whilst having merit, would not have the same immediate impact on increasing understanding of CFS/ME, nor reducing the suffering of patients.”
This is a very strange statement when one considers one of the terms of the advisory group:
“To recommend to MRC a research strategy to advance understanding of the aetiology, epidemiology and biology of CFS/ME.”
It would be very interesting to find out who actually wrote this draft strategy - was it the same person who drew up the questionnaire that was devised before the panel met? Did they consult with people outside the panel?
This draft strategy was then released for consultation on the 17th of December, 2002. People were asked to send in their comments by the 31st of January of the following year. This did not give much time for people to read such a relatively long document and then comment on it (remembering that many people have other commitments and many have M.E.). The thought occurs that perhaps they were hoping some people wouldn't have time to comment?
Anyway, many people did make an effort to read it and then comment on it, with the expectation that their views would be taken on board. Unfortunately, when the final draft was released, many were very disappointed. The research strategy had not changed much in substance. The main changes seemed to be, to a large extent, cosmetic.
The research strategy document makes numerous references to patient participation such as:
- “The Terms of Reference for the MRC CFS/ME Research Advisory Group were:
... To take account of patient and lay perspectives”
- “8. The value of lay participation.
The participation of affected individuals and their carers, researchers with experience of patient support, and advocacy groups has enriched the process of developing a research strategy for CFS/ME.”
- 8.1 Research agenda
Consumers have been closely involved in the development of this research strategy,”
[..]
- 9. Conclusions and Recommendations
172. It is essential that the researcher-funder-lay partnership is nurtured, to ensure that the best evidence is easily available to all, and to facilitate the growth of consumer involvement in the design, conduct and dissemination of research - as a means to enhancing its quality, relevance, and credibility.
But in spite of all this talk, even though it came out clearly from the consultation that patients wanted biomedical research and research into causes, the research strategy seemed to lean in favour of research into behavioural strategies, that most patients had found either to be of limited value, useless or harmful.
The following comment also shows that they weren't listening very well to the submissions of the lay people they claim they were listening closely to:
"3.3 Terminology
The MRC CFS/ME Research Advisory Group has noted the concerns of many respondents to both consultation exercises over neurological and psychiatric aspects of CFS/ME. It is the firmly held belief of the Group that psychiatric illnesses are no less real or debilitating than neurological illnesses."
This comment shows they missed the point. Most of the arguments about psychiatric versus neurological as expressed by patients are more to do with what the research priorities should be, and how the illness should be treated, rather than about severity.
So for example if you had MS would you want to be dealing primarily with a neurologist or psychiatrist for treatment and research? Or if you had an infection would you want to get anti-virals or psychiatric treatment for you 'abnormal illness belief'?
Many doctors think that ME/CFS will resolve quickly by itself, or think that it is a relatively minor disorder. Even a lot of the better doctors think some of these things, possibly because they confuse it with post-viral fatigue. Some think that it is readily treatable with CBT/GET.
Patients suffer medical and social neglect because of this attitude and ignorance. Many doctors don't realise that ME/CFS can lead to various organ system medical problems, including possibly a greater risk of cardiac problems and possibly a greater risk of dying early of certain types of cancer:
Dr Leonard Jason, Ph.D. who has done a lot of epidemiological studies in the US, mostly notably a large study in Chicago which cost over $1 million (possibly several million), is one person who has made comments to this effect. The following is taken from the "Lifeline" news magazine of the Wisconsin CFS Association - it included the text of a talk given to the group on Sept. 17, 2005:
"I also wanted to mention that chronic fatigue syndrome is an illness that has devastating consequences, and I know people here know this. We have a paper coming out in the next couple of months, where we have actually looked at causes of death for people who have died of chronic fatigue syndrome. What we have found is that individuals seem to die of three causes, heart disease, cancer and suicide.
"What's interesting is that you say, well, everyone has to die eventually of something, so if you follow people long enough, they will probably die of those types of causes. However, we found that those individuals who died, actually died significantly younger, about ten years younger of those causes, than would be expected based on national mortality data. I strongly feel that the tissue and blood bank that Pat Fero is establishing for research is absolutely critical. It might be that complications occur with having CFS that ultimately lead to immune system breakdowns that could, ultimately, result in some very fatal conditions."
Unfortunately one can say little with certainty about this issue because of the lack of research.
Some doctors think that ME/CFS patients may be malingering, imagining symptoms, or 'adopting the sick role for secondary illness gain'. Sometimes doctors even joke about or mock patients.
So this is one of the many reasons why patients make such a big issue about whether ME is psychiatric or not, and are unhappy with the undue influence of psychiatrists in the field of research and treatment. It is also an added reason to push for more biomedical research: what other way are they to get treated humanely and prove that their symptoms have a basis in reality and are not a figment of their imagination, a result of some sort of alleged personality defect, or behavioural problem?
Anyway, since the strategy was published, as far as I know, only psychiatric/behavioural research and epidemiological research (led by psychiatrists) has been funded by the MRC, exactly the opposite of what most patients wanted. For example in Appendix 2 of the research strategy that summarises the first phase of the consultations, patients 'criticise what they see as a dominance by psychiatry of research'. But this dominance is what the MRC has perpetuated to the detriment of good quality biomedical research by its funding practices.
Of course, possibly the most noticeable thing about the research strategy was that it did not include any report on the second consultation. The research strategy contained a report on the first consultation as an Annex but didn't include any report on the second consultation which many people had put a lot of work into. I have corresponded with several people who felt that this was basically because there were too many negative comments in the second consultation about the draft strategy and many of these criticisms could also be said about the final research strategy. A friend of mine with M.E. tried for many months to get a copy of this document from the MRC without success. It wasn't until it was suggested that people write in in numbers to the Public Health Resource Unit (PHRU) and MRC that the document was finally released, the following January (i.e. January 2004). So the document did exist but the MRC chose not to include it in the final research strategy document and indeed to my knowledge it has never appeared on the MRC website unlike a lot of other information relating to the strategy.
I think it should be remembered that a couple of weeks after the Research strategy was announced two major MRC-funded projects, the FINE and PACE trials, were announced. It would be interesting to know whether these two trials influenced the MRC Research Strategy. It looks like these trials fit in with the research strategy even though they wouldn't spring to mind in most people's minds if they were designing a strategy to study the illness. Were the members of the advisory panel aware of these trials either individually or together? Unless it can be shown otherwise, I think it is fair to speculate that the research strategy would have been written differently if the MRC wasn't about to announce these trials; if for example a research strategy had been produced which did not recommend these types of research it would seem strange or embarrassing for the MRC to have approved them. Of course fear of embarrassment is not a good way to draw up a research strategy on a serious illness that affects millions worldwide.
This has got long so I won't write more about the flaws I see in the final research strategy that is on the MRC website but I discussed them in detail in my submission to you (which I can send again if you like).
One further problem with this flawed strategy is that it is on very public display on the MRC’s website. Conceivably this might not only affect MRC research but also influence and affect the views of researchers (and potential researchers) and other possible funders both in the UK and also around the world (research into M.E. is only in its infancy outside of a small number of countries in the world such as the UK).
As I have suggested, one of the reasons I have written all this is to ensure that if another panel is set up, it does not repeat the same mistakes as the last panel and its report. Any new panel should consist of people who genuinely recognise there is a serious illness that affects directly and indirectly hundreds of thousands (if not millions) in the UK (when one includes close family members and partners) as well as millions worldwide and should be willing to question the hypothesis that all that is required is rehabilitation methods and the like and see the need for research into aetiology and pathophysiology. Also there should be greater transparency if there is consultation process.
To finish, currently on the MRC website it says:
"The MRC CFS/ME research strategy was published on May 1 2003, and the full document is available on the MRC website (www.mrc.ac.uk). Future grant applications to fund research into any aspects of this condition are likely to be judged according to how well they fit within the proposed framework in addition to their scientific quality." (ref:
http://www.mrc.ac.uk/consumption/idcplg?IdcService=GET_FILE&dID=9214&dDocName=MRC003412&allowInterrupt=1 or http://tinyurl.com/ydh867)
Given that I, you (judging by your report) and many others believe the research strategy to be flawed it seems important that this is not allowed continue and that future applications are not judged "according to how well they fit within the proposed framework in addition to their scientific quality."
One final point: unfortunately I feel the patient group Action for M.E. should not be the prime or sole patient voice in future discussions or consultations about the MRC and its approach. For a number of years, it has been receiving money from the MRC and I feel, partly based on some comments by its former chief executive, this may be compromising its position to speak up as strongly as is necessary.
Tom Kindlon
was deeply flawed and suggested comparing and contrasting it with the requests for research applications that the NIH has prepared in the US. In my submission to you in December 2005 (which I can send again if you would like), I wrote (with the help of a colleague, Orla Ni Chomhrai) about the problems we saw in the final MRC Research Strategy. We gave them the following loose headings:
A) The first problem was that they did not undertake a review of the scientific literature on ME/CFS
B) They did not follow their terms of reference
(i.e. "To consider the Report of the CMO’s working party on CFS/ME, including its recommendations for research, To consider other recent reviews of current knowledge and understanding of CFS/ME, To take account of patient and lay perspectives, To recommend to MRC a research strategy to advance understanding of the aetiology, epidemiology and biology of CFS/ME and, In the light of current knowledge suggest what areas of further research are needed with regard to possible prevention, management (including diagnosis) and treatment." Minutes of 1st meeting, 4/9/2002).
These terms of reference weren’t just taken out of the air but from a specific request from the Dept. of Health e.g. “Mr. Todd: To ask the Secretary of State for Health what recent research his Department has commissioned into the causes of myalgic encephalomyelitis. [79186]
Ms Blears: The Department has asked the Medical Research Council (MRC), which receives its grant-in-aid from my right hon. Friend, the Secretary of State for Trade And Industry, via the Office of Science and Technology, to develop a broad strategy for advancing biomedical and health services research on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME),“
http://www.parliament.the-stationery-office.co.uk/pa/cm200102/cmhansrd/vo021107/text/21107w27.htm or Vhttp://tinyurl.com/32ra7v
C) "They see the problem with the lack of biomarkers but perpetuate it"
D) The report is overly dismissive of evidence for biological abnormalities and is written in a way that might turn researchers off looking at key areas of interest
E) Problematic view on role of infections
F) Serious error in section on Neurology
G) Immunology (i.e. problems with the Immunology section)
H) Problems with the discussion on interventions and almost uncritical examination of the evidence for CBT/GET's effectiveness
The final strategy was similar to the draft strategy (see below) so reading critiques of it (many can still be found on the Internet e.g. at http://listserv.nodak.edu/archives/co-cure.html ) will also give ideas about the problems I and others see in the "MRC Research Strategy for CFS/ME".
Part of the problem is that, for a person from outside the area, the "wool can be pulled over their eyes” by the strategy e.g. if you are not aware of the many things and ideas not covered by it. As I said, the final strategy was similar to the draft strategy except, helped by the feedback, they seemed to “soften down” statements that particularly jarred or were more overtly biased. Unfortunately they did not seem to take on board some of the more substantial points in the critiques of the draft.
In my last message I said I thought that the "MRC Research Strategy for CFS/ME" was drawn up in a very "peculiar" way.
I thought I would justify this comment, especially if a new committee might be formed to come up with a new strategy.
Firstly in 2002, Dr Chris Watkins was CFS/ME Programme Manager. This in itself may be significant as his general title was at the time "MRC Programme Manager for Research on Mental Illness and Drug Addiction." For an illness that is recognised as a neurological illness by the World Health Organisation, this seems a strange state of affairs and possibly suggests the attitude the MRC has to ME/CFS i.e. sees it as a mental health issue. [Unfortunately nothing much seems to have changed within the MRC - Dr Gavin Malloch, Programme Manager for Mental Health and Addiction, has responsibility for CFS/ME (ref. http://www.mrc.ac.uk/consumption/groups/public/documents/content/mrc001972.pdf) ]
The advisory panel that was drawn up to come up with the strategy was said to be "independent and fresh" when it was announced by Dr. Diana Dunstan at the All Party Parliamentary Group (APPG) on ME/CFS on the 12th June 2002. They were said to be "leading experts from various fields who did not previously specialise in CFS/ME".
This announcement was strange for two main reasons:
(i) It seems unlikely if they were coming up with a research strategy in another field that they would make a virtue out of not have knowledgeable people from the field involved - would they do this with Cancer, Multiple Sclerosis, Arthritis, AIDS, etc? It could be useful to have a panel with some new people to help brain-storm but a panel would normally have others with existing knowledge there to make comments e.g. about areas of research that are worth exploring further, areas of research that have been neglected or underfunded, issues about diagnostic criteria, etc.
(ii) The other obvious reason the announcement was strange was that the faces weren't totally fresh at all as two had been published in the CFS area before:
a) Alan McGregor had previously published two PubMed-listed papers on CFS before, both co-written with the psychiatrist Simon Wessely.
Prof. McGregor was also listed "Member of the Linbury Advisory Panel on CFS" in the first Linbury Trust "Member of the Linbury Advisory Panel on CFS" in the first Linbury Trust "Research Portfolio on Chronic Fatigue, edited by Robin Fox, published by the Royal Society of Medicine, London, July 1998. Indeed in media pieces in July 1998, Prof. McGregor is described as chairman of the Linbury Trust's scientific advisory panel on ME so clearly had already been involved in many discussions about ME/CFS.
I think it is interesting to read a short critique by Margaret Williams and Eileen Marshall of this booklet which Alan McGregor launched at a press conference in July 1998, given that he, like the other members of the MRC RAG, was being presented as “fresh and independent”:
“In July 1998 the Linbury Trust produced a booklet entitled "A Research Portfolio on Chronic Fatigue" (note: not chronic fatigue syndrome) it was published by The Royal Society of Medicine and was edited by Robin Fox for the Linbury Trust. Sixty-three per cent of the Linbury contributors are psychiatrists who might be said to belong to the "Wessely" school. Seventy per cent of the reported work supported by the Linbury Trust has a psychiatric - psychological dimension. Much of the work contained in the Linbury “portfolio" is based on the same poor epidemiology; the psychiatrists continue to confuse ME with chronic fatigue and with psychological illnesses such as depression. Evidence which shows ME to be an organic illness is excluded or devalued. The plight of the severely affected (and of children with ME) is ignored altogether.
On page 67 of the Linbury Trust "research portfolio" on chronic fatigue, there is an "Editorial Afterword": it contains a diagram drawn by Dr Anthony Cleare (who co-authored with Wessely the paper which states "There lies at the heart of CFS not a virus (or) immune disorder, but a distortion in the doctor-patient relationship": Anthony J Cleare. Simon C Wessely. Update 1996:61-69).
In summary, the "Editorial Afterword" affirms that patients with psychological defects are predisposed to develop ME / CFS owing to the mis-attribution of their symptoms to a physical cause. This prompts patients to avoid physical activity, which causes them to become deconditioned, which increases fatigue and psychological disturbance.
The message of the "research portfolio" into "CFS" is clear: cognitive behaviour therapy and drug therapy will control the patient’s mis-attributions.
Searching for causes is not only futile but may prevent recovery.
The first paper in the "research portfolio" is by Simon Wessely and is entitled "Epidemiology in CFS"; it has 18 references, of which no less than 10 (55%) are Wessely’s own papers. Ignoring all seminal papers which have charted the course of ME over the last 60 years, from sporadic cases to endemic clusters and as world-wide epidemics, Wessely recounts only his own work from 1988.
No attempt has been made in the Linbury Trust "research portfolio" to include the seriously and chronically disabled in any individual study.
Notwithstanding, in his "Editorial Afterword", Robin Fox proclaims: "we can state confidently that CFS is s symptom complex rather than a disease. . ..it is not an inflammation of brain or a muscle disease. . .numerous psychological disturbances have been identified"
If taken to its logical conclusion, much of this "research" work re-inforces the inhuman child protection system, directly leading children diagnosed as having ME I CFS to be forced into psychiatric units against their parents’ wishes. (Acknowledgment to Dr B.Dowsett: "Chronic Fatigue" and The Linbury Trust Research Portfolio: August 1998).
In the second Linbury Trust "Portfolio" on Chronic Fatigue published in 2000, Professor McGregor is still listed as "Member of the Linbury Trust Advisory Panel on CFS”. In the book, it states that "The Linbury Trust…began funding research into chronic fatigue syndrome in 1991 and has since become the major source of funding in this disease area….Before the Linbury Trust initiative, much of the knowledge base in this area was erroneous" [Between 1991 and 1998, the Linbury Trust gave £4 million to research into ME/CFS (I'm unsure of the total amount it has given).]
In a book review “New Research Ideas in Chronic Fatigue. Frackowiak R and Wessely, S (Eds.) Royal Society of Medicine. 2001.” http://freespace.virgin.net/david.axford/bookrev6.htm , Dr Ellen Goudsmit who did her Ph.D. on M.E. and is very knowledgeable about the literature that has been published, discusses the Linbury Trust:
“This is a book directed at patients and self-help groups, based on a conference organised jointly by the Novartis Foundation and the Linbury Trust. For the uninitiated, the Novartis Trust has a long history of hostility towards patients with CFS, which is why it virtually never invites any ME specialists or researchers from outside the CBT school to any of its conferences. They certainly didn’t this time. The Linbury Trust is a Sainsbury charity, which is not overtly hostile, but just has a strong ‘preference’ for research and other activities supporting the CBT explanation. (Most of their grants are for studies using the Oxford criteria, which in practice, exclude most people with ME. It also funded a booklet on exercises written by a patient of a psychiatrist from the CBT school. However, it refused three applications from scientists outside the CBT school, who wanted to compile updates featuring balanced and reliable medical information on CFS.) The background and motives are important as they explain why most of the discussion at this conference focused on issues like altered perception of effort, maladaptive self-monitoring, disordered attention, depression etc), why no one was interested in symptoms other than fatigue, lethargy, tiredness, pain and fragmented sleep*, why the title refers to chronic fatigue (as opposed to CFS) or why no one had the knowledge or interest to correct misconceptions or errors relating to the research.”
Here is another comment about the Linbury Trust written by Malcolm Hooper et al
The Linbury Trust has been funding almost exclusively psychiatric research into “chronic fatigue” since 1991. Those whose work has been supported by this Trust include psychiatrists Simon Wessely (a Reference Group member), Peter White, Anthony Cleare and behaviour therapist Trudie Chalder (all members of the influential Key Group). Anthony Cleare is a Linbury Trust Research Fellow. Other psychiatrists of the Wessely School who have been funded by the Linbury Trust include Anthony David ((see page 5 above) and Michael Sharpe. In its first “Research Portfolio” on “chronic fatigue”, the Linbury Trust states that one of its primary aims is to ensure that “the Government and its agencies…develop appropriate patient-support mechanisms”, which seems to bear resemblance to the stated aims of PRISMA. (ref: Research Portfolio on chronic fatigue, ed. R.Fox; RSM 1998). (Composite Response on the Final Version of the CMO’s Report of 31st August 2001 on CFS/ME edited by Professor Malcolm Hooper)
In a letter to Simon Lawrence, Co-Ordinator of the 25% ME Group (for people severely affected by ME), Prof. Radda (who was then the Chief Executive of the MRC) said they were "aware of Prof Macgregor's involvement with the Linbury Trust."
Professor McGregor was an important person on the panel as he was supposed to cover both immunology and endocrinology (and in itself it seems a bit unusual to have one person covering these two areas). It is not hard to argue that he should not have part of a “fresh and independent” panel.
B) Philip Cowen had co-written five PubMed-listed papers before, four of which were also co-written by the psychiatrist Michael Sharpe.
C) A third member of the panel was clearly very likely coming from a particular direction: Professor Til Wykes (who, like Simon Wessely, was in the Institute of Psychiatry). She was on record as believing about CBT that "If you encourage them to do things, as part of a treatment called cognitive behaviour therapy, then you do see improvement. It's a way of getting people to take control of their lives. It works, and it certainly shows that ours is not an aimless, ineffective science".
In the November 2002 issue of the journal "Psychological Medicine" a paper on Gulf War Syndrome co-written by her and Simon Wessely amongst others was published. Given the length of time it usually takes from when a paper is first written to when it is finally published (as they often have to be re-submitted and then aren't generally published instantaneously as a slot has to be found on it), this paper (or the research involved) had almost certainly been started when the panel was put together. Gulf War Syndrome and Chronic Fatigue Syndrome have been closely associated, both by psychiatrists and others.
I mention Simon Wessely and Michael Sharpe as they, along perhaps with Peter White and Trudie Chalder, could be described as the chief proponents of the "CBT school of thought" about CFS (some people even call it the "Wessely School of Thought" as Simon Wessely is so closely associated with it). They generally believe that CFS is largely perpetuated by maladaptive illness beliefs and behaviours and can be treated effectively by Graded Exercise (or activity) Therapy (GET) programmes along with Cognitive Behaviour Therapy (CBT) programmes based on Graded Exercise/Activity. Patients are seen as being deconditioned. These days they will sometimes say the condition is both physical and psychological but this seems to me to be more for P.R. reasons than anything else as the physical side of things is not seen as significant, and with symptoms seen as simply due to deconditioning, poor sleep, etc rather than an ongoing disease process. This view contrasts with the views of most patients and many other scientists and clinicians, who believe that the condition is "largely physical" i.e. there is a disease process (although accepting psychological factors can play a part in some patients). I think they could be described as “one trick ponies” - they seem to have made little effort to use the biomedical research that has been published to make more varied suggestions about what should be done for patients (especially given that there is a lot of evidence that there are subgroups within the vague “Chronic Fatigue Syndrome” definition (i.e. the Oxford criteria) that they have used in much of their research. So three people on this panel, who were likely to be coming from the CBT school of thought approach to the illness, had been selected for a panel of 12 (11 initially). There can always be random errors but the fact that three panellists were coming from this position while none seemed to be coming from a position which saw ME/CFS as largely physical/involving a disease process, seems unusual.
Also some of us had question marks over other members of the panel e.g. Dr Jackie Oldham. She was described, when the panel was announced, as covering “Muscle physiology”. This is an important area as muscle problems are a major part of M.E. When we looked into her background, we found that, at that stage, she had been working for many years in the Rehabilitation area. [Indeed in the completed research strategy, her area of expertise is described as “Muscle Physiology/Rehabilitation”].
This is interesting as one possible way to describe the "CBT school of thought" could be to say that they believe patients with "ME/CFS" can be rehabilitated. Drugs or biomedical methods are not a major part of their views. The problem of course is that in practice many people have not been able to rehabilitate themselves and indeed many patients believe their efforts to rehabilitate themselves have made them worse. Many patients and patient advocates believe any possible benefits that can be obtained by rehabilitation methods in the illness have been "hyped" by the proponents of the "CBT model for the illness". One comparison that could be made is that proponents of CBT model often appear to be like "drug peddlers"/salespeople for a treatment, hyping up the supposed efficacy of the treatment they promote and down-playing possible adverse effects from the treatment.
I do not know whether Dr Oldham's views about the illness were known at the time but she seems the sort of person who might get enthusiastic about the idea that patients could be rehabilitated or at least seems like a person who is less likely to suggest that the patients can't be rehabilitated.
So many felt they already knew the direction the panel was likely to go: there were a few people on the panel who could be proposing the CBT/rehabilitation/biopsychosocial model for the illness and there was no obvious person who was likely to criticise it. If another panel is set up it is important that this be rectified. If for some reason, a panel was being set up that did not have any people from the M.E. field on it who would challenge the CBT/Rehabilitation/Biopsychosocial model, perhaps someone like George Davey Smith (Professor of Clinical Epidemiology, Department of Social Medicine, University of Bristol) who has shown a willingness to explore and challenge the biopsychosocial model (judging by his chapter: "The biopsychosocial approach: a note of caution" in "Biopsychosocial Medicine: An integrated approach to understanding illness", edited by Peter White) could be useful? He summarised his piece as follows: This chapter will provide a cautionary critique of whether the biopsychosocial (BPS) model is useful in understanding aetiological factors in chronic diseases. I will illustrate the arguments by referring to studies of peptic ulcer and ischaemic heart disease. I will show that bias and confounding can generate spurious findings and associations, especially in observational studies. When interventional studies have been used to examine the efficacy of a psychosocial approach the results have been disappointing.
[Aside: I don't know enough about George Davey Smith to say whether he would be sufficient on his own -I think to have any sort of balance in a panel, one needs to have at least one person who is firmly convinced (either through having the illness themselves or close knowledge of the lives of sufferers) that many/most/all people with M.E. can’t recover through rehabilitation methods. Otherwise one can end up with a strategy where “all the eggs have put into one basket” (i.e. based on the idea that patients can be fully “rehabilitated”) despite the fact that most people in the area should know this is not true]
The next stage of drawing up the strategy was the first consultation. This involved replying to a questionnaire. Many people commented on the Internet that they felt this questionnaire was quite directed and did not give much space for comments. If there was another review and if it involved a consultation, it should learn from the problems with this one. It would be also interesting to know how this questionnaire was drawn up given that - for example, who did it and did they have an agenda when doing it? It was drawn up and circulated and its consultation period ended before the first meeting of the advisory panel on 4/9/2002.
A few months later, a draft research strategy was released. The file had Dr. Chris Watkins name on it so there seems a good chance he wrote it or at least it was prepared on his computer.
The file used to be available until recently on the MRC website at
http://www.mrc.ac.uk/pdf-cfs_consultation_draft_final_version.pdf but has recently been deleted - it is still available at http://www.meactionuk.org.uk/pdf-cfs_consultation_draft_final_version.pdf
I and many others were very unhappy with recommendations contained in it such as the following in the summary:
“In view of the probable multiplicity of causal factors and the widely disparate findings so far reported, the MRC CFS/ME Research Advisory Group considers that studies investigating potential causal pathways and mechanisms, whilst having merit, would not have the same immediate impact on increasing understanding of CFS/ME, nor reducing the suffering of patients.”
This is a very strange statement when one considers one of the terms of the advisory group:
“To recommend to MRC a research strategy to advance understanding of the aetiology, epidemiology and biology of CFS/ME.”
It would be very interesting to find out who actually wrote this draft strategy - was it the same person who drew up the questionnaire that was devised before the panel met? Did they consult with people outside the panel?
This draft strategy was then released for consultation on the 17th of December, 2002. People were asked to send in their comments by the 31st of January of the following year. This did not give much time for people to read such a relatively long document and then comment on it (remembering that many people have other commitments and many have M.E.). The thought occurs that perhaps they were hoping some people wouldn't have time to comment?
Anyway, many people did make an effort to read it and then comment on it, with the expectation that their views would be taken on board. Unfortunately, when the final draft was released, many were very disappointed. The research strategy had not changed much in substance. The main changes seemed to be, to a large extent, cosmetic.
The research strategy document makes numerous references to patient participation such as:
- “The Terms of Reference for the MRC CFS/ME Research Advisory Group were:
... To take account of patient and lay perspectives”
- “8. The value of lay participation.
The participation of affected individuals and their carers, researchers with experience of patient support, and advocacy groups has enriched the process of developing a research strategy for CFS/ME.”
- 8.1 Research agenda
Consumers have been closely involved in the development of this research strategy,”
[..]
- 9. Conclusions and Recommendations
172. It is essential that the researcher-funder-lay partnership is nurtured, to ensure that the best evidence is easily available to all, and to facilitate the growth of consumer involvement in the design, conduct and dissemination of research - as a means to enhancing its quality, relevance, and credibility.
But in spite of all this talk, even though it came out clearly from the consultation that patients wanted biomedical research and research into causes, the research strategy seemed to lean in favour of research into behavioural strategies, that most patients had found either to be of limited value, useless or harmful.
The following comment also shows that they weren't listening very well to the submissions of the lay people they claim they were listening closely to:
"3.3 Terminology
The MRC CFS/ME Research Advisory Group has noted the concerns of many respondents to both consultation exercises over neurological and psychiatric aspects of CFS/ME. It is the firmly held belief of the Group that psychiatric illnesses are no less real or debilitating than neurological illnesses."
This comment shows they missed the point. Most of the arguments about psychiatric versus neurological as expressed by patients are more to do with what the research priorities should be, and how the illness should be treated, rather than about severity.
So for example if you had MS would you want to be dealing primarily with a neurologist or psychiatrist for treatment and research? Or if you had an infection would you want to get anti-virals or psychiatric treatment for you 'abnormal illness belief'?
Many doctors think that ME/CFS will resolve quickly by itself, or think that it is a relatively minor disorder. Even a lot of the better doctors think some of these things, possibly because they confuse it with post-viral fatigue. Some think that it is readily treatable with CBT/GET.
Patients suffer medical and social neglect because of this attitude and ignorance. Many doctors don't realise that ME/CFS can lead to various organ system medical problems, including possibly a greater risk of cardiac problems and possibly a greater risk of dying early of certain types of cancer:
Dr Leonard Jason, Ph.D. who has done a lot of epidemiological studies in the US, mostly notably a large study in Chicago which cost over $1 million (possibly several million), is one person who has made comments to this effect. The following is taken from the "Lifeline" news magazine of the Wisconsin CFS Association - it included the text of a talk given to the group on Sept. 17, 2005:
"I also wanted to mention that chronic fatigue syndrome is an illness that has devastating consequences, and I know people here know this. We have a paper coming out in the next couple of months, where we have actually looked at causes of death for people who have died of chronic fatigue syndrome. What we have found is that individuals seem to die of three causes, heart disease, cancer and suicide.
"What's interesting is that you say, well, everyone has to die eventually of something, so if you follow people long enough, they will probably die of those types of causes. However, we found that those individuals who died, actually died significantly younger, about ten years younger of those causes, than would be expected based on national mortality data. I strongly feel that the tissue and blood bank that Pat Fero is establishing for research is absolutely critical. It might be that complications occur with having CFS that ultimately lead to immune system breakdowns that could, ultimately, result in some very fatal conditions."
Unfortunately one can say little with certainty about this issue because of the lack of research.
Some doctors think that ME/CFS patients may be malingering, imagining symptoms, or 'adopting the sick role for secondary illness gain'. Sometimes doctors even joke about or mock patients.
So this is one of the many reasons why patients make such a big issue about whether ME is psychiatric or not, and are unhappy with the undue influence of psychiatrists in the field of research and treatment. It is also an added reason to push for more biomedical research: what other way are they to get treated humanely and prove that their symptoms have a basis in reality and are not a figment of their imagination, a result of some sort of alleged personality defect, or behavioural problem?
Anyway, since the strategy was published, as far as I know, only psychiatric/behavioural research and epidemiological research (led by psychiatrists) has been funded by the MRC, exactly the opposite of what most patients wanted. For example in Appendix 2 of the research strategy that summarises the first phase of the consultations, patients 'criticise what they see as a dominance by psychiatry of research'. But this dominance is what the MRC has perpetuated to the detriment of good quality biomedical research by its funding practices.
Of course, possibly the most noticeable thing about the research strategy was that it did not include any report on the second consultation. The research strategy contained a report on the first consultation as an Annex but didn't include any report on the second consultation which many people had put a lot of work into. I have corresponded with several people who felt that this was basically because there were too many negative comments in the second consultation about the draft strategy and many of these criticisms could also be said about the final research strategy. A friend of mine with M.E. tried for many months to get a copy of this document from the MRC without success. It wasn't until it was suggested that people write in in numbers to the Public Health Resource Unit (PHRU) and MRC that the document was finally released, the following January (i.e. January 2004). So the document did exist but the MRC chose not to include it in the final research strategy document and indeed to my knowledge it has never appeared on the MRC website unlike a lot of other information relating to the strategy.
I think it should be remembered that a couple of weeks after the Research strategy was announced two major MRC-funded projects, the FINE and PACE trials, were announced. It would be interesting to know whether these two trials influenced the MRC Research Strategy. It looks like these trials fit in with the research strategy even though they wouldn't spring to mind in most people's minds if they were designing a strategy to study the illness. Were the members of the advisory panel aware of these trials either individually or together? Unless it can be shown otherwise, I think it is fair to speculate that the research strategy would have been written differently if the MRC wasn't about to announce these trials; if for example a research strategy had been produced which did not recommend these types of research it would seem strange or embarrassing for the MRC to have approved them. Of course fear of embarrassment is not a good way to draw up a research strategy on a serious illness that affects millions worldwide.
This has got long so I won't write more about the flaws I see in the final research strategy that is on the MRC website but I discussed them in detail in my submission to you (which I can send again if you like).
One further problem with this flawed strategy is that it is on very public display on the MRC’s website. Conceivably this might not only affect MRC research but also influence and affect the views of researchers (and potential researchers) and other possible funders both in the UK and also around the world (research into M.E. is only in its infancy outside of a small number of countries in the world such as the UK).
As I have suggested, one of the reasons I have written all this is to ensure that if another panel is set up, it does not repeat the same mistakes as the last panel and its report. Any new panel should consist of people who genuinely recognise there is a serious illness that affects directly and indirectly hundreds of thousands (if not millions) in the UK (when one includes close family members and partners) as well as millions worldwide and should be willing to question the hypothesis that all that is required is rehabilitation methods and the like and see the need for research into aetiology and pathophysiology. Also there should be greater transparency if there is consultation process.
To finish, currently on the MRC website it says:
"The MRC CFS/ME research strategy was published on May 1 2003, and the full document is available on the MRC website (www.mrc.ac.uk). Future grant applications to fund research into any aspects of this condition are likely to be judged according to how well they fit within the proposed framework in addition to their scientific quality." (ref:
http://www.mrc.ac.uk/consumption/idcplg?IdcService=GET_FILE&dID=9214&dDocName=MRC003412&allowInterrupt=1 or http://tinyurl.com/ydh867)
Given that I, you (judging by your report) and many others believe the research strategy to be flawed it seems important that this is not allowed continue and that future applications are not judged "according to how well they fit within the proposed framework in addition to their scientific quality."
One final point: unfortunately I feel the patient group Action for M.E. should not be the prime or sole patient voice in future discussions or consultations about the MRC and its approach. For a number of years, it has been receiving money from the MRC and I feel, partly based on some comments by its former chief executive, this may be compromising its position to speak up as strongly as is necessary.
Tom Kindlon
Wednesday, 10 January 2007
from Tom Kindlon (1)
(I hope to give more feedback but wanted to get this quick piece in before the deadline).
I would like to thank the people who gave up their time to take part in the process thus far. I hope at least some will keep an interest in the area and for example keep some focus on the Medical Research Council (MRC) and its funding of research in the area.
Normally I understand that politicians generally don't get a big say on a lot of issues regarding medical research funding. However this seems exceptional circumstances given the funding patterns thus far by the MRC (all the money has gone to researchers of a particular "school of thought" who seem to have a rather "one-dimensional" view of the illness) and for example the deeply flawed Medical Research Council Research Strategy for CFS/ME
and the very "peculiar" way it was drawn up.
It is interesting to compare the MRC document and recommendations with the much broader requests for research applications produced by the National Institute of Health
(See "Funding Opportunity Description" for the basic information in each page)
Chronic Fatigue Syndrome: Pathophysiology and Treatment (R01)
Chronic Fatigue Syndrome: Pathophysiology and Treatment (R03)
Chronic Fatigue Syndrome: Pathophysiology and Treatment (R21)
Neuroimmune Mechanisms and Chronic Fatigue Syndrome
For the latter, US$4 million was ring-fenced. This is on top of the several million the CDC has been ploughing into research each year.
Also it is interesting to note that, for example, the PACE trial is
Being funded by the Department of Health, the Department of Work and Pensions and the Scottish Chief Scientist Office as well the Medical Research Council (MRC); so it would be interesting to find out whether they would be willing to support biomedical research into the illness (rather than solely supporting what most patients seem to believe to be a deeply flawed (but expensive) trial run by psychiatrists and psychologists with a particular viewpoint about the illness, its nature, etc).
We need advocates such as those who wrote the report to help us ensure that there is a more balanced portfolio of research that is funded. It should be easy to embarrass the MRC on this issue given what has happened up to now but unfortunately it looks like it will take people of influence such as MPs and members of the House of Lords to do it. Hundreds of thousands of people in the UK and millions worldwide who are currently affected by the illness really need your help.
Tom Kindlon
I would like to thank the people who gave up their time to take part in the process thus far. I hope at least some will keep an interest in the area and for example keep some focus on the Medical Research Council (MRC) and its funding of research in the area.
Normally I understand that politicians generally don't get a big say on a lot of issues regarding medical research funding. However this seems exceptional circumstances given the funding patterns thus far by the MRC (all the money has gone to researchers of a particular "school of thought" who seem to have a rather "one-dimensional" view of the illness) and for example the deeply flawed Medical Research Council Research Strategy for CFS/ME
and the very "peculiar" way it was drawn up.
It is interesting to compare the MRC document and recommendations with the much broader requests for research applications produced by the National Institute of Health
(See "Funding Opportunity Description" for the basic information in each page)
Chronic Fatigue Syndrome: Pathophysiology and Treatment (R01)
Chronic Fatigue Syndrome: Pathophysiology and Treatment (R03)
Chronic Fatigue Syndrome: Pathophysiology and Treatment (R21)
Neuroimmune Mechanisms and Chronic Fatigue Syndrome
For the latter, US$4 million was ring-fenced. This is on top of the several million the CDC has been ploughing into research each year.
Also it is interesting to note that, for example, the PACE trial is
Being funded by the Department of Health, the Department of Work and Pensions and the Scottish Chief Scientist Office as well the Medical Research Council (MRC); so it would be interesting to find out whether they would be willing to support biomedical research into the illness (rather than solely supporting what most patients seem to believe to be a deeply flawed (but expensive) trial run by psychiatrists and psychologists with a particular viewpoint about the illness, its nature, etc).
We need advocates such as those who wrote the report to help us ensure that there is a more balanced portfolio of research that is funded. It should be easy to embarrass the MRC on this issue given what has happened up to now but unfortunately it looks like it will take people of influence such as MPs and members of the House of Lords to do it. Hundreds of thousands of people in the UK and millions worldwide who are currently affected by the illness really need your help.
Tom Kindlon
Sunday, 7 January 2007
from Suzy Chapman - ME, MSBP and the under 5s
On 27 November, I wrote to Dr Nigel Speight, consultant paediatrician and expert in childhood ME, with my concerns for the meaning and implications of the following section of the "Gibson Report". Dr Speight also acts as medical adviser to a number of national ME organisations and gave oral evidence as a Witness at the Gibson Inquiry Oral Hearing 4.
http://www.erythos.com/gibsonenquiry/Report.html
Extract from the Gibson Inquiry Report
2.4 ME in Teenagers and Children
We included this section because it was previously thought that children could not have CFS/ME. The Group received numerous submissions from parents whose children had or were suspected to have CFS/ME. It has been thought that children could not suffer from CFS/ME but the Group accepts that CFS/ME is prevalent amongst teenagers and possibly in children. However it is very unlikely to occur in infants and young children and so should not be confused with Munchausen by proxy for example.
On 29 November, I received a response from Dr Speight:
Dr Speight agreed that I had cause for concern. In his email, he told me that the Gibson Group could have said that they had received medical evidence that ME occurs in children and young people. He went on to say that if the Group had referred back to him he could have confirmed that he has seen it in the under 5 age group and that disbelief about this had itself left children at risk of being diagnosed as MSBP. His youngest case, he told me, probably had its onset at 6 months of age.
The October 2006 edition of ME Association's magazine, ME Essential, carried an article on Page 5 called "Caitlin's Story", written by the little girl's mum, Laura Ballard. Caitlin is three and has been ill since she was eighteen months old.
The two children's charities AYME and The Young ME Sufferers Trust both have young members.
The remit of the Gibson Group did not include evaluating whether and at what age ME occurred in children. The Group was not, in any case, qualified to make this judgement.
The statements made in this section are highly ambiguous and highly contentious and require reconsideration, as AfME and others have rightly recognised.*
Dr Gibson and his committee should be prepared to acknowledge this.
The "clarification" proffered by Dr Gibson concerning age related prevalence of ME in childhood or perceived age related incidence of MSBP (FII) in families has served only to confirm Dr Gibson's inability to recognise that in making these pronouncements, in the first place, his committee has dangerously exceeded its brief.
Furthermore, it is disturbing that his committee should seek to legitimise the construct of MSBP (FII) which has never been proven as a discrete syndrome nor considered to be a "safe" scientific theory and offer, in defence of their assertions, unsupported statements such as "[MSBP] only exists in children less than 5 or infants". Ironically, Dr Richard Taylor, a member of the Gibson Group, is also a member of the MSBP Group championing the cause of families suffering accusations of alleged MSBP.
Dr Gibson's clarification of statements made in Section 2.4: ME in Teenagers and Children:
"The Group believes Munchausen Syndrome or FII does exist and is a serious problem for paediatricians. However, it only exists in children less than 5 or infants, whilst according to the evidence we received ME only occurs in children over 5. Therefore they should not be confused. We intended to express our concern and sympathy to parents of older children who had been mislabelled as Munchausen. We do believe that older children and teenagers get ME and it should not be mislabelled Munchausen."
[NB. No references were supplied in the "Gibson Report" in relation to Section 2.4 ME in Teenagers and Children or in relation to Dr Gibson's clarification above. The correct terminology for the construct now known as "FII" is "Munchausen's Syndrome by Proxy" or "MSBP" not "Munchausen Syndrome" as Dr Gibson has stated, which is a different construct.] Dr Gibson is on record as having said that The Gibson Inquiry is not out for consultation/amendment.
Suzy Chapman
suzy.chapman@virgin.net
http://www.erythos.com/gibsonenquiry/Report.html
Extract from the Gibson Inquiry Report
2.4 ME in Teenagers and Children
We included this section because it was previously thought that children could not have CFS/ME. The Group received numerous submissions from parents whose children had or were suspected to have CFS/ME. It has been thought that children could not suffer from CFS/ME but the Group accepts that CFS/ME is prevalent amongst teenagers and possibly in children. However it is very unlikely to occur in infants and young children and so should not be confused with Munchausen by proxy for example.
On 29 November, I received a response from Dr Speight:
Dr Speight agreed that I had cause for concern. In his email, he told me that the Gibson Group could have said that they had received medical evidence that ME occurs in children and young people. He went on to say that if the Group had referred back to him he could have confirmed that he has seen it in the under 5 age group and that disbelief about this had itself left children at risk of being diagnosed as MSBP. His youngest case, he told me, probably had its onset at 6 months of age.
The October 2006 edition of ME Association's magazine, ME Essential, carried an article on Page 5 called "Caitlin's Story", written by the little girl's mum, Laura Ballard. Caitlin is three and has been ill since she was eighteen months old.
The two children's charities AYME and The Young ME Sufferers Trust both have young members.
The remit of the Gibson Group did not include evaluating whether and at what age ME occurred in children. The Group was not, in any case, qualified to make this judgement.
The statements made in this section are highly ambiguous and highly contentious and require reconsideration, as AfME and others have rightly recognised.*
Dr Gibson and his committee should be prepared to acknowledge this.
The "clarification" proffered by Dr Gibson concerning age related prevalence of ME in childhood or perceived age related incidence of MSBP (FII) in families has served only to confirm Dr Gibson's inability to recognise that in making these pronouncements, in the first place, his committee has dangerously exceeded its brief.
Furthermore, it is disturbing that his committee should seek to legitimise the construct of MSBP (FII) which has never been proven as a discrete syndrome nor considered to be a "safe" scientific theory and offer, in defence of their assertions, unsupported statements such as "[MSBP] only exists in children less than 5 or infants". Ironically, Dr Richard Taylor, a member of the Gibson Group, is also a member of the MSBP Group championing the cause of families suffering accusations of alleged MSBP.
Dr Gibson's clarification of statements made in Section 2.4: ME in Teenagers and Children:
"The Group believes Munchausen Syndrome or FII does exist and is a serious problem for paediatricians. However, it only exists in children less than 5 or infants, whilst according to the evidence we received ME only occurs in children over 5. Therefore they should not be confused. We intended to express our concern and sympathy to parents of older children who had been mislabelled as Munchausen. We do believe that older children and teenagers get ME and it should not be mislabelled Munchausen."
[NB. No references were supplied in the "Gibson Report" in relation to Section 2.4 ME in Teenagers and Children or in relation to Dr Gibson's clarification above. The correct terminology for the construct now known as "FII" is "Munchausen's Syndrome by Proxy" or "MSBP" not "Munchausen Syndrome" as Dr Gibson has stated, which is a different construct.]
*In their public response to the Gibson Report, AfME commented:
"The Group accepts that CFS/M.E. is prevalent amongst teenagers and possibly in children but says, "it is very unlikely to occur in infants and young children" and that it "should not be confused with Munchausen by proxy for example." Action for M.E. feels that this statement is unhelpful and contrary to the Group's apparent acceptance of the biological basis of the illness, lack of epidemiological data, understanding of the need for accurate diagnostic tests and commitment to the need for further research. We ask the Group to reconsider this statement."
"The Group accepts that CFS/M.E. is prevalent amongst teenagers and possibly in children but says, "it is very unlikely to occur in infants and young children" and that it "should not be confused with Munchausen by proxy for example." Action for M.E. feels that this statement is unhelpful and contrary to the Group's apparent acceptance of the biological basis of the illness, lack of epidemiological data, understanding of the need for accurate diagnostic tests and commitment to the need for further research. We ask the Group to reconsider this statement."
Suzy Chapman
suzy.chapman@virgin.net
Saturday, 6 January 2007
GSMRE News Bulletin: January 5
http://www.erythos.com/gibsonenquiry/News.html
On 21st December 2006, the GSRME began to implement the final phase of its Inquiry, ‘Making the Report Count’. To this end the Report was sent to all MPs, the relevant Ministers and Senior Medical and Scientific Figures for review. The covering letters sent with the report are available to read below.
The Report was also sent to Health Minister Andy Burnham in early December asking for his comments. The Department of Health had been in regular contact regarding the report and were expecting a copy.
The Group hopes to use the report to highlight the ongoing struggle facing CFS/ME patients and to help secure a commitment to recognition, funding, treatment and research in the field. Colin Blakemore of the Medical Research Council has sent a preliminary response and has promised to give a full response to the report once he returns from annual leave.
The Group is aware that holding a public meeting on the report is a crucial next step. We have been having some logistical difficulties, however we hope to make an announcement very soon.
Letter to The Rt Hon Stephen Timms – Chief Secretary to the Treasury
Dear Stephen
I am contacting you in my capacity as Chair of the Group on Scientific Research into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Over the past year this group has conducted an Inquiry into the issues surrounding CFS/ME. I attach a copy of the Inquiry’s Report for you to review.
There are 250,000 people suffering from CFS/ME in the UK, yet we have fallen behind the rest of the world when it comes to researching and recognising a biomedical model of the illness. The only treatments available to patients are symptomatic and there has been no major scientific research into its causes on a national level. This is despite the fact that CFS/ME is now five times more prevalent in the UK than AIDS and can be just as debilitating. The Group feels that this issue must be addressed.
The Report calls for massive investment into and commissioning of biomedical research projects. The Group found that in the UK there has been a historical bias towards funding research into the psychosocial model of the illness. This model is contradicted by work in Canada, the US and Australia. The Group is concerned for patients who at present are only offered symptomatic treatments and can find it extremely difficult to get the recognition or benefits they need from the government. We are also concerned that the UK appears to be falling behind the rest of the world when it comes to research and innovation in this area.
The Report also calls for an independent panel made up of virologists, immunologists, biochemists, endocrinologists, geneticists to review the international and UK biomedical evidence to identify areas for further research. This panel should exclude psychiatrists and psychologists and be independent of the existing CFS/ME debate.
The Group urges you to read our report and look into establishing proper funding for research in this area. We would welcome your views and the chance to discuss making a difference in this important area. 2007 will see the publication of both NICE and DWP guidelines on CFS/ME. We have an unprecedented opportunity to make a real difference to patients’ lives and to give the illness the recognition it deserves. We must ensure we do not let this opportunity pass us by.
Kind Regards
Ian
Dr Ian Gibson
MP for Norwich North
Chair of the Group for Scientific Research into CFS/ME
Tel: 0207 219 1100
Letter to Jim Murphy MP - Minister for Work
Dear Jim
I am contacting you in my capacity as Chair of the Group on Scientific Research into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Over the past year this group has conducted an Inquiry into the issues surrounding CFS/ME. I attach a copy of the Inquiry’s report for you to review.
There are 250,000 people suffering from CFS/ME in the UK, yet we have fallen behind the rest of the world when it comes to researching and recognising a biomedical model of the illness. The only treatments available to patients are symptomatic and there has been no major scientific research into its causes on a national level. This is despite the fact that CFS/ME is now five times more prevalent in the UK than AIDS and can be just as debilitating. The Group feels that this issue must be addressed.
The Report calls for massive investment into and commissioning of biomedical research projects. The Group found that in the UK there has been a historical bias towards funding research into the psychosocial model of the illness. This model is contradicted by work in Canada, the US and Australia. The Group is concerned for patients who at present are only offered symptomatic treatments and can find it extremely difficult to get the recognition or benefits they need from the government. We are also concerned that the UK appears to be falling behind the rest of the world when it comes to research and innovation in this area.
The Report also calls for an independent panel made up of virologists, immunologists, biochemists, endocrinologists, geneticists to review the international and UK biomedical evidence to identify areas for further research. This panel should exclude psychiatrists and psychologists and be independent of the existing CFS/ME debate.
We are aware the DWP is formulating draft guidelines on CFS/ME at present and are keen for the Inquiry’s report to be taken into account. 2007 will see the publication of both NICE and DWP guidelines on CFS/ME. We have an unprecedented opportunity to make a real difference to patients’ lives and to give the illness the recognition it deserves. We must ensure this opportunity does not pass us by.
Kind Regards
Ian
Dr Ian Gibson
MP for Norwich North
Chair Group for Scientific Research into CFS/ME
Tel: 0207 219 1100
Letter to Sir Liam Donaldson - Chief Medical Officer
Dear Sir Liam
I hope you are well. I am contacting you in my capacity as Chair of the Group on Scientific Research into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). As you may be aware, over the past year this group has conducted an Inquiry into the issues surrounding CFS/ME. I attach a copy of the Inquiry’s Report for you to review.
There are 250,000 people suffering from CFS/ME in the UK, yet we have fallen behind the rest of the world when it comes to researching and recognising a biomedical model of the illness. The only treatments available to patients are symptomatic and there has been no major scientific research into its causes on a national level. This is despite the fact that CFS/ME is now five times more prevalent in the UK than AIDS and can be just as debilitating. The Group feels that this issue must be addressed.
The Report calls for massive investment into and commissioning of biomedical research projects. The Group found that in the UK there has been a historical bias towards funding research into the psychosocial model of the illness. This model is contradicted by work in Canada, the US and Australia. The Group is concerned for patients who at present are only offered symptomatic treatments and find it extremely difficult to get the recognition or benefits they need from government. We are also concerned that the UK appears to be falling behind the rest of the world when it comes to research and innovation in this area.
The Report also calls for an independent panel made up of virologists, immunologists, biochemists, endocrinologists, geneticists to review the international and UK biomedical evidence to identify areas for further research. This panel should exclude psychiatrists and psychologists and be independent of the existing CFS/ME debate.
Important recommendations for ‘Research’ and ‘Recognition and definition of the illness’ were made in the Chief Medical Officers Report on CFS/ME 2002. We are concerned that many of the recommendations made were not addressed at the time. We are keen to build on the 2002 Chief Medical Officer’s Report and push this issue up the political agenda. In light of this, we would welcome your comments and the opportunity to discuss these issues and establish a viable way forward. 2007 will see the publication of both NICE and DWP guidelines on CFS/ME. We have an unprecedented opportunity to make a difference to patients’ lives and ensure that this illness receives the recognition it deserves. We must ensure this opportunity does not pass us by.
Kind Regards
Ian
Dr Ian Gibson
MP for Norwich North
Chair of the Group on Scientific Research into CFS/ME
Tel: 0207 219 1100
Letter to Colin Blakemore - Chief Executive of the Medical Research Council
Dear Colin
I hope you are well. I am contacting you in my capacity as Chair of the Group on Scientific Research into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). As you may be aware, over the past year this group has conducted an Inquiry into the issues surrounding CFS/ME. I attach a copy of the Inquiry’s Report for you to review.
There are 250,000 people suffering from CFS/ME in the UK, yet we have fallen behind the rest of the world when it comes to researching and recognising a biomedical model of the illness. The only treatments available to patients are symptomatic and there has been no major scientific research into its causes on a national level. This is despite the fact that CFS/ME is now five times more prevalent in the UK than AIDS and can be just as debilitating. The Group feels that this issue must be addressed.
The Report calls for massive investment into and commissioning of biomedical research projects. The Group found that in the UK there has been a historical bias towards funding research into the psychosocial model of the illness. This model is contradicted by work in Canada, the US and Australia. The Group is concerned for patients who at present are only offered symptomatic treatments and find it extremely difficult to get the recognition or benefits they need from government. We are also concerned that the UK appears to be falling behind the rest of the world when it comes to research and innovation in this area.
The Report also calls for an independent panel made up of virologists, immunologists, biochemists, endocrinologists, geneticists to review the international and UK biomedical evidence to identify areas for further research. This panel should exclude psychiatrists and psychologists and be independent of the existing CFS/ME debate.
The Group urges you to read our report and look into establishing a programme of funding for biomedical research in this area. The Chief Medical Officers Report of 2002 identified how little was known about this illness in the UK and made several recommendations for further research which have not been implemented. We would welcome your views and the chance to discuss making a difference in this important area. 2007 will see the publication of both NICE and DWP guidelines on CFS/ME. We have an unprecedented opportunity to make a real difference to patients’ lives and to give the illness the recognition it deserves. We must ensure this opportunity does not pass us by.
Kind Regards
Ian
Dr Ian Gibson
MP for Norwich North
Chair of the Group on Scientific Research into ME
0207 219 1100
Letter to John Bell - Chief Executive of the Academy of Medical Sciences
On 21st December 2006, the GSRME began to implement the final phase of its Inquiry, ‘Making the Report Count’. To this end the Report was sent to all MPs, the relevant Ministers and Senior Medical and Scientific Figures for review. The covering letters sent with the report are available to read below.
The Report was also sent to Health Minister Andy Burnham in early December asking for his comments. The Department of Health had been in regular contact regarding the report and were expecting a copy.
The Group hopes to use the report to highlight the ongoing struggle facing CFS/ME patients and to help secure a commitment to recognition, funding, treatment and research in the field. Colin Blakemore of the Medical Research Council has sent a preliminary response and has promised to give a full response to the report once he returns from annual leave.
The Group is aware that holding a public meeting on the report is a crucial next step. We have been having some logistical difficulties, however we hope to make an announcement very soon.
Letter to The Rt Hon Stephen Timms – Chief Secretary to the Treasury
Dear Stephen
I am contacting you in my capacity as Chair of the Group on Scientific Research into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Over the past year this group has conducted an Inquiry into the issues surrounding CFS/ME. I attach a copy of the Inquiry’s Report for you to review.
There are 250,000 people suffering from CFS/ME in the UK, yet we have fallen behind the rest of the world when it comes to researching and recognising a biomedical model of the illness. The only treatments available to patients are symptomatic and there has been no major scientific research into its causes on a national level. This is despite the fact that CFS/ME is now five times more prevalent in the UK than AIDS and can be just as debilitating. The Group feels that this issue must be addressed.
The Report calls for massive investment into and commissioning of biomedical research projects. The Group found that in the UK there has been a historical bias towards funding research into the psychosocial model of the illness. This model is contradicted by work in Canada, the US and Australia. The Group is concerned for patients who at present are only offered symptomatic treatments and can find it extremely difficult to get the recognition or benefits they need from the government. We are also concerned that the UK appears to be falling behind the rest of the world when it comes to research and innovation in this area.
The Report also calls for an independent panel made up of virologists, immunologists, biochemists, endocrinologists, geneticists to review the international and UK biomedical evidence to identify areas for further research. This panel should exclude psychiatrists and psychologists and be independent of the existing CFS/ME debate.
The Group urges you to read our report and look into establishing proper funding for research in this area. We would welcome your views and the chance to discuss making a difference in this important area. 2007 will see the publication of both NICE and DWP guidelines on CFS/ME. We have an unprecedented opportunity to make a real difference to patients’ lives and to give the illness the recognition it deserves. We must ensure we do not let this opportunity pass us by.
Kind Regards
Ian
Dr Ian Gibson
MP for Norwich North
Chair of the Group for Scientific Research into CFS/ME
Tel: 0207 219 1100
Letter to Jim Murphy MP - Minister for Work
Dear Jim
I am contacting you in my capacity as Chair of the Group on Scientific Research into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Over the past year this group has conducted an Inquiry into the issues surrounding CFS/ME. I attach a copy of the Inquiry’s report for you to review.
There are 250,000 people suffering from CFS/ME in the UK, yet we have fallen behind the rest of the world when it comes to researching and recognising a biomedical model of the illness. The only treatments available to patients are symptomatic and there has been no major scientific research into its causes on a national level. This is despite the fact that CFS/ME is now five times more prevalent in the UK than AIDS and can be just as debilitating. The Group feels that this issue must be addressed.
The Report calls for massive investment into and commissioning of biomedical research projects. The Group found that in the UK there has been a historical bias towards funding research into the psychosocial model of the illness. This model is contradicted by work in Canada, the US and Australia. The Group is concerned for patients who at present are only offered symptomatic treatments and can find it extremely difficult to get the recognition or benefits they need from the government. We are also concerned that the UK appears to be falling behind the rest of the world when it comes to research and innovation in this area.
The Report also calls for an independent panel made up of virologists, immunologists, biochemists, endocrinologists, geneticists to review the international and UK biomedical evidence to identify areas for further research. This panel should exclude psychiatrists and psychologists and be independent of the existing CFS/ME debate.
We are aware the DWP is formulating draft guidelines on CFS/ME at present and are keen for the Inquiry’s report to be taken into account. 2007 will see the publication of both NICE and DWP guidelines on CFS/ME. We have an unprecedented opportunity to make a real difference to patients’ lives and to give the illness the recognition it deserves. We must ensure this opportunity does not pass us by.
Kind Regards
Ian
Dr Ian Gibson
MP for Norwich North
Chair Group for Scientific Research into CFS/ME
Tel: 0207 219 1100
Letter to Sir Liam Donaldson - Chief Medical Officer
Dear Sir Liam
I hope you are well. I am contacting you in my capacity as Chair of the Group on Scientific Research into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). As you may be aware, over the past year this group has conducted an Inquiry into the issues surrounding CFS/ME. I attach a copy of the Inquiry’s Report for you to review.
There are 250,000 people suffering from CFS/ME in the UK, yet we have fallen behind the rest of the world when it comes to researching and recognising a biomedical model of the illness. The only treatments available to patients are symptomatic and there has been no major scientific research into its causes on a national level. This is despite the fact that CFS/ME is now five times more prevalent in the UK than AIDS and can be just as debilitating. The Group feels that this issue must be addressed.
The Report calls for massive investment into and commissioning of biomedical research projects. The Group found that in the UK there has been a historical bias towards funding research into the psychosocial model of the illness. This model is contradicted by work in Canada, the US and Australia. The Group is concerned for patients who at present are only offered symptomatic treatments and find it extremely difficult to get the recognition or benefits they need from government. We are also concerned that the UK appears to be falling behind the rest of the world when it comes to research and innovation in this area.
The Report also calls for an independent panel made up of virologists, immunologists, biochemists, endocrinologists, geneticists to review the international and UK biomedical evidence to identify areas for further research. This panel should exclude psychiatrists and psychologists and be independent of the existing CFS/ME debate.
Important recommendations for ‘Research’ and ‘Recognition and definition of the illness’ were made in the Chief Medical Officers Report on CFS/ME 2002. We are concerned that many of the recommendations made were not addressed at the time. We are keen to build on the 2002 Chief Medical Officer’s Report and push this issue up the political agenda. In light of this, we would welcome your comments and the opportunity to discuss these issues and establish a viable way forward. 2007 will see the publication of both NICE and DWP guidelines on CFS/ME. We have an unprecedented opportunity to make a difference to patients’ lives and ensure that this illness receives the recognition it deserves. We must ensure this opportunity does not pass us by.
Kind Regards
Ian
Dr Ian Gibson
MP for Norwich North
Chair of the Group on Scientific Research into CFS/ME
Tel: 0207 219 1100
Letter to Colin Blakemore - Chief Executive of the Medical Research Council
Dear Colin
I hope you are well. I am contacting you in my capacity as Chair of the Group on Scientific Research into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). As you may be aware, over the past year this group has conducted an Inquiry into the issues surrounding CFS/ME. I attach a copy of the Inquiry’s Report for you to review.
There are 250,000 people suffering from CFS/ME in the UK, yet we have fallen behind the rest of the world when it comes to researching and recognising a biomedical model of the illness. The only treatments available to patients are symptomatic and there has been no major scientific research into its causes on a national level. This is despite the fact that CFS/ME is now five times more prevalent in the UK than AIDS and can be just as debilitating. The Group feels that this issue must be addressed.
The Report calls for massive investment into and commissioning of biomedical research projects. The Group found that in the UK there has been a historical bias towards funding research into the psychosocial model of the illness. This model is contradicted by work in Canada, the US and Australia. The Group is concerned for patients who at present are only offered symptomatic treatments and find it extremely difficult to get the recognition or benefits they need from government. We are also concerned that the UK appears to be falling behind the rest of the world when it comes to research and innovation in this area.
The Report also calls for an independent panel made up of virologists, immunologists, biochemists, endocrinologists, geneticists to review the international and UK biomedical evidence to identify areas for further research. This panel should exclude psychiatrists and psychologists and be independent of the existing CFS/ME debate.
The Group urges you to read our report and look into establishing a programme of funding for biomedical research in this area. The Chief Medical Officers Report of 2002 identified how little was known about this illness in the UK and made several recommendations for further research which have not been implemented. We would welcome your views and the chance to discuss making a difference in this important area. 2007 will see the publication of both NICE and DWP guidelines on CFS/ME. We have an unprecedented opportunity to make a real difference to patients’ lives and to give the illness the recognition it deserves. We must ensure this opportunity does not pass us by.
Kind Regards
Ian
Dr Ian Gibson
MP for Norwich North
Chair of the Group on Scientific Research into ME
0207 219 1100
Letter to John Bell - Chief Executive of the Academy of Medical Sciences
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