ME/CFIDS/CFS/FM UK Scandal
Montague and Hooper reply to Dr Shepard and HealthWatch
Part 1
Without prejudice For information
Response by Montague and Hooper to criticisms about their paper dated 1st May 2001 (Concerns about the forthcoming UK Chief Medical Officer's Report on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), notably the intention to advise clinicians that only limited investigations are necessary) raised by Dr Charles Shepherd and by HealthWatch
Introduction
In May 2001 Professor Malcolm Hooper and Sally Montague produced a draft discussion paper entitled "Concerns about the forthcoming UK Chief Medical Officer's Report on Myalgic encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), notably the intention to advise clinicians that only limited investigations are necessary". The paper was sent to a few concerned individuals for their comments.
The arguments expressed in that paper fell into two main categories:
firstly and most importantly were our concerns about the fact that certain members of the Chief Medical Officer's Working Group on CFS/ME were advising that only limited clinical investigations are necessary in cases of ME/CFS. Such advice contrasts with a key concept which emerged from the Fifth International Research and Clinical Conference of the American Association of Chronic Fatigue Syndromes held in Seattle in January 2001, namely that basic laboratory testing is not sufficient for patients with this complex disorder and that advanced immunological tests including immune
function and antibodies to the neurological system are needed.
Moreover, compelling evidence was presented at Seattle which demonstrated that contrary to the belief of some members of the CMO's Working Group, there is no relationship between the number of
medically unexplained symptoms and psychiatric disorder; specifically, psychiatric disorder is not a core aspect of CFS/ME.
These findings were set out in the Montague / Hooper paper.
Secondly, concerns were expressed in the paper about the affiliations and involvement of some members of the Working Group with HealthWatch, a charity which has campaigned against alternative and complementary medicine, and against concepts of food allergy and
chemical sensitivity.
No-one associated with the Montague / Hooper paper is opposed to orthodox pharmaceutical intervention when appropriate. Our concern is that in ME / CFS, not only are many patients unable to tolerate
such interventions but also that food and chemical sensitivities are an integral component of the disorder. There is an extensive literature on this point. (For illustrative references 1984 - 2000,
see Appendix 1 to this present document).
This being so, we believe that given the current lack of useful pharmacological intervention, complementary and nutritional management options should be given fair consideration.
Our concern was (and remains) that an inappropriate psychiatric model of management will be recommended in the forthcoming CMO's Report on CFS/ME as the treatment of choice, and that such recommendations will militate against comprehensive investigation in a clinical setting.
Inevitably, if such management approaches are recommended in a Government report, they will become approved NHS policy for such patients.
Furthermore, we remain concerned about the apparent determination of some members of the CMO's Working Group to deny the existence of ME and to insist that it is synonymous with CFS.
On this point we are mindful that since 1969, ME has been classified in the International Classification of Diseases under disorders of the nervous system (WHO: ICD 8: code 323, page 173) and that ME is
still thus classified (ICD 10: G.93.3).
By direct communication, the World Health Organisation has confirmed to the authors that there are no plans whatsoever to remove ME from its formal classification as a neurological disorder and to re-
classify it in the psychiatric section in the next ICD (Version 10.2) which is due in 2003.
Specifically, we have been advised by the WHO that when considering the correct classification for ME /CFS, the syndrome should be regarded as neurological, and that fatigue states which are
classified at section F 48 as "Behavioural and Mental Disorders"do not relate to ME ( a claim which has frequently been made by some members of the CMO's Working Group).
ME has been documented in the medical literature since 1938. It used to be known as "atypical poliomyelitis" and neurological deficits are an integral component; it was accepted as a nosological entity by the Royal Society of Medicine in 1978.
By comparison, "CFS" did not exist until 1988 and its case definition was based on the symptoms of glandular fever.
Whilst we accept that ICD classifications change over time as medical knowledge expands, we and many others are increasingly concerned that, under sustained pressure from a group of psychiatrists known colloquially as the "Wessely School" (ref: Hansard(Lords): 19 December1998:1013), the CMO's forthcoming Report regards the two distinct conditions as one and the same. On this point we are
profoundly concerned that some members of the CMO's Working Group believe that the matter of distinguishing between those with ME and those with CFS (or between subgroups of CFS) "may be considered a matter of semantics and personal philosophy".
It is perhaps worth remembering that the American term "CFS" has come to reflect those patients who are likely to have ME rather than a psychiatric disorder as described by the 1991 (Oxford) CFS case definition (much used by psychiatrists of the Wessely School, who were participants in its formulation). That case definition of CFS specifically includes those with psychiatric illness and has thereby led to considerable obfuscation which possibly underlies the differing response to different management approaches.
Having provided a summary of why the authors of the Montague / Hooper paper considered it necessary to voice their concerns, the authors here address the criticisms levelled at them personally and at their
paper by Dr Charles Shepherd and HealthWatch.
re: Professor Malcolm Hooper
1. Professor Hooper was one of the authors and as is recognised practice, his name and mail address at the
University of Sunderland were quoted on the front page of the document.
2. The paper was not submitted to any journal for publication and no deceit has taken place by the use of a pseudonym. The reason for the collective name was made public on 7 July 2001. It is because some of the contributing authors are themselves severely affected by ME and are not well enough to deal with the anticipated critical onslaught which, in the event, has come from both HealthWatch and Dr Shepherd.
3. As Emeritus Professor, Malcolm Hooper does not fall within
the jurisdiction of the University of Sunderland so the University takes no position in this matter.
4. The authors did not put the document on the internet and no
responsibility is accepted by them for any amendments by unknown others which have not been authorised.
The authors have no responsibility for or connection with any website.
re: Dr Charles Shepherd
We note that Dr Shepherd has not addressed the fundamental issues in the Montague / Hooper document. He fails to address the wider concerns set out by Montague and Hooper and instead he has concentrated only on what he considers to be his personal position.
1. "In our view, as Medical Director of the ME Association, Dr Shepherd is supposed to be representing members of the ME Association and he therefore has an obligation to represent the best interests of all members of the ME Association who have to rely on his advocacy"
On reflection, we have clarified this to read:
"Dr Shepherd is Medical Director of the ME Association; in this role, he is charged with representing the medical interests of Association members".
2. "We believe that this should involve actively pressing for the setting up of research units and specialist clinics within the National Health Service for ME/CFS sufferers, certainly not concurring with the psychiatrists' recommendation and advising that only limited investigations are necessary for such patients "
On reflection, we have clarified this to read:
"The approach which Dr Shepherd takes to the diagnosis and
treatment of ME in respect of the ME Association is entirely a matter for him and the members of that Association. Dr Shepherd has over the years shown himself to be committed to the cause of ME. We, however, are of the opinion that any Government review of this disorder should advise the setting up of research units and specialist clinics within the NHS. We also believe that the best interests of patients are not served by following a psychiatric or behavioural model of evaluation which suggests that only limited investigations are necessary for such patients. As mentioned in the original paper (reference 58), UK researchers looked at the common neuroendocrine tests (which are often normal in ME/CFS) and concluded that the tests were inadequate for ME/CFS patients. We are strengthened in our belief by the fact that in July 2001 the American Medical Association issued a statement explaining that 90% of CFS/ME patients show normal test results on basic investigations and that studies designed for specific subgroups are needed. Professor Anthony Komaroff stated:
"Researchers are already using imaging technology to measure brain hormones and are examining the function of the immune system.
There is considerable evidence already that the immune system is in a state of chronic activation in many patients with CFS". (ref: AMA, Co-Cure, 17 July 2001).
3. "Dr Shepherd's own private beliefs are a matter only for him, but at present his private beliefs seem to be influencing his professional obligations to the patients he represents and to be adversely affecting decisions which are being made on behalf of those patients".
On reflection, we have deleted this sentence from the paper.
4. "We believe that such advice is at variance with good medical practice and that assessment of these patients should be particularly thorough; we are not alone in this view, because US Professors Fred Friedberg and Leonard Jason make the point in their recent book (8), noting that "Some physicians make the odd assumption that we know all we need to know about these illnesses, thus obviating the need for further research and greater understanding of these patients".
On reflection, we have clarified this to read:
"As we will show in this paper, it is clear that best clinical
practice in this area is increasingly being understood to involve a comprehensive battery of sophisticated tests to facilitate a better understanding of this complex disorder. US Professors Fred Friedberg and Leonard Jason make the point in their recent book (8), noting that
"Some physicians make the odd assumption that we know all we need to know about these illnesses, thus obviating the need for further research and greater understanding of these patients".
5. "In our opinion, for the Medical Director of the UK ME
Association to advise that no RNase L investigations are necessary defies reason". "From these illustrations, we believe it may be appropriate for the Medical Director of the UK ME Association to be required to supply a credible explanation as to why he recommends that investigation of urinary markers in ME/CFS is `unnecessary and unproven".
The matter of these sentences seems now to have been resolved by Dr Shepherd himself in his letter dated 17 July 2001 to the Chief Medical Officer. In his letter Dr Shepherd states " I acknowledge that I have opposed the inclusion of testing for RNase L (an antiviral marker) and CFS urinary markers ( a test which is advocated by a group of Australian researchers)....One of the major problems with both of these tests is that all the published information so far comes from researchers who have a financial interest in their promotion - a situation which involves a clear conflict of interest". We will now include this explanation in the paper.
6. In correspondence to the CMO, Dr Shepherd claims that "I have been singled out for particular criticism on the grounds that .... I have exerted undue influence in persuading my colleagues on the Key Group to arrive at their conclusions in relation to the process of diagnostic assessment". Nowhere in the paper does it state or imply that Dr Shepherd has "exerted undue influence" over his professional colleagues on the Key Group. The paper states simply that Dr Shepherd has advised the Key Group that only limited investigations are necessary.
7. In correspondence, Dr Shepherd makes the point that the concerns expressed in the paper should first have been directed to a representative of the CMO's Working Group. In fact those involved with the paper made substantial attempts to do so but were repeatedly thwarted. Correspondence has gone unacknowledged, including correspondence sent personally to the Chairman, Professor Allen Hutchinson. Letters sent directly to the CMO have been forwarded to Leeds to be dealt with by the NHS Executive. Written submissions to Key Group members remain unacknowledged and appear to have been ignored. Moreover, by letter dated 14 March 2000, Mrs Helen Wiggins of the NHS Executive stated: "Regarding contacting members of the CFS/ME Working Group...as a result of numerous requests...and correspondence, a decision was made to stop facilitating these requests so that Working Group members would not be inundated with unsolicited correspondence".
8. Dr Shepherd may have overlooked the fact that, as its title makes plain, the paper deals entirely with concerns about the intention to advise clinicians that only limited investigations are necessary in suspected cases of ME/CFS. Concerning Dr Shepherd, therefore, the paper relates only to his advice to the Key Group on this one issue.
The paper does not question any other aspect of Dr Shepherd's
professional advice or ability.
9. In correspondence, Dr Shepherd states that no attempt was made by the authors to check the way in which members of HealthWatch may be involved in the preparation of the CMO's report on CFS/ME. No assertions whatsoever are made in the paper about the influence of members of the CMO's Working Group who are also members or associates of HealthWatch upon the preparation of the CMO's report on CFS/ME.
10. In correspondence, Dr Shepherd states that the paper provides an inaccurate representation of some of the views of Simon Wessely on the cause and management of ME/CFS, specifically that "It is untrue to state that Professor Wessely believes CFS is amenable to antidepressant medication " . We refer to Appendix (2) to this present document, which provides illustrations of Professor Wessely's published views on the use of antidepressant medication in ME/CFS.
It is upon those published views that the authors of the Montague / Hooper paper relied.
11. In correspondence to Professor Hooper dated 10 July 2001, Dr
Shepherd states "It is untrue to state that the most influential members of the CMO's Working Group are all members of HealthWatch. Apart from myself, I am not aware of anyone else on the entire Working Group who is a member of HealthWatch....the organisation has no influence whatsoever in the operations of the CMO's Working Group. I shall be asking Professor Allen Hutchinson, Chairman of the Working Group, to also write to you to refute this allegation". On reflection, we accept that the word "all" should be removed from the original document. We point out that Dr Shepherd must surely be aware that Professor Simon Wessely is a member of HealthWatch; Wessely has been a member of the organisation since its inception in the UK in 1989, and in HealthWatch's own literature, Wessely is listed as a "leading member of the campaign". It cannot, we believe, be in doubt that Professor Wessely is most influential on matters relating to ME/CFS. From the sheer volume of his publications (which number over 200), it can be seen that his influence is phenomenal. Wessely is a named member of the CMO's Working Group. It is a matter of
public record that it was Wessely's own personal database of reference papers which formed part of the systematic review of the literature on the management of ME/CFS carried out by the York-based Centre for Reviews and Dissemination. The CRD is a sibling of the Cochrane Collaboration, the body set up to prepare an international database of what its members consider to be the best management strategies for all medical conditions. Professor Wessely is said to be responsible for the section on ME/CFS. The Chairman of the Cochrane Collaboration is Professor Sir Iain Chalmers who, as Wessely, is listed in HealthWtach's own literature as being " a leading member of the campaign ".
To mention that Charles Shepherd and Simon Wessely are members
of HealthWatch does not, in our view, constitute a "very personal accusation", as claimed by Dr Shepherd, especially when that information is already in the public domain.
12. In correspondence, Dr Shepherd states that the paper claims that HealthWatch is " running " the CMO's Working Group on ME/CFS. This is misrepresentation on the part of Dr Shepherd: nowhere in the paper do the authors make any such claim.
The paper merely notes that the Working Group's most
influential members are members or associates of HealthWatch.
re: Professor Tony Pinching
1. Dr Shepherd states in correspondence that the paper makes "false and misleading allegations" about Professor Pinching. The paper refers specifically to Professor Pinching's " involvement " with HealthWatch: it does not state that he is or was a member of HealthWatch. It is a matter of indisputable published record that Professor Pinching has been closely involved with HealthWatch members. We have in mind his involvement as a member of the committee which produced the Royal College of Physicians' 1991 report "Allergy: Conventional and Alternative Concepts" in the compilation of which leading members of the HealthWatch campaign were instrumental, notably Dr David Pearson and Caroline Richmond. We are mindful that the draft version of that report was withdrawn on the grounds that Fellows of the College found it to be "wildly inaccurate" and misleading, and that it required amendment before being officially released. We also have in mind Professor Pinching's association with the journalist Duncan Campbell (listed in HealthWatch's own 1990 literature as the organisation's " Writer" and as a "leading member of the campaign"); our information in this respect comes from the book Dirty Medicine by Martin J Walker. We note that in correspondence, Dr Shepherd refers to this book as " a scurrilous publication which should have no place in the referencing of a scientific paper ". We are aware that book sold over 7000 copies and that it gathered outstanding reviews in a number of influential journals and papers, including the Guardian Saturday magazine. In correspondence, Dr Shepherd states about Dirty Medicine that it is " a book which has quite rightly been withdrawn from sale". That statement is untrue. The book was not withdrawn from sale.
2. In our belief that Professor Pinching holds views common to
those of Dr Shepherd concerning the advice that only limited investigations are necessary in ME/CFS, we rely upon a paper entitled Chronic Fatigue Syndrome by Anthony J Pinching published in Prescribers' Journal 2000:40:2:99-106. In this article, of which Pinching was the sole author, he states "over-investigation can be harmful....causing (patients) to seek abnormal test results to validate their illness". Whilst no-one could dispute that "over-investigation " is counter-productive, few would go so far as to suggest that patients actually seek "abnormal test results to validate their illness".
It is this particular view which causes us to believe that Professor Pinching, like Dr Shepherd, considers that only limited investigations are necessary in ME/CFS.
Our belief is further strengthened because in his article Professor Pinching also states " Complementary therapists....reinforce unhelpful illness beliefs. Cognitive behaviour therapy...can substantially optimise rehabilitation. The essence of treatment is activity management and graded rehabilitation ".
3. Consequently, we retain our belief that neither of the
references to Professor Pinching in the paper constitutes either "false or misleading allegations" or a "personal attack" as claimed by Dr Shepherd.
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MERGE: the Myalgic Encephalomyelitis Research Group for Education and Support