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Sunday, 29 February 2004
Byron Hyde MD
The Nightingale Research Foundation

I am in an unusual position among ME/CFS disabled individuals. I am probably the only one in North America who has certain curious qualifications.
(1) I have been studying the disease processes leading to this illness since 1984 like Dr. Bell and a few others.However, there is more. Due to the curious health systems in the world,
(2) I and physicians in Canada can access any medical test available in Canada without cost to the patient. There are a few exceptions and these in the area of Neuropsychological testing that costs circa $1,500 and QEEG that are computer driven EEGs but we do access these at no cost for native Canadians and those whose cases I aminvestigating for unions. Patients involved in court cases can also get their costs back if they win and I usually win in court if I find sufficient grounds to take on the case. Other Canadian physicians can do the same think but few have the time in on investigation and in addition you simply cannot earn a living in this type of work. So no other Canadian physicians have done what I have done simply due to the fact they would be bankrupt. I makemy funds by winning legal cases for my patients. Believe me it doesn't make much money in Canada and any school teacher would be paid more than I am. However the work is fascinating and I wouldn't leave it for any money. The Americans are blind sided to some degree since they cannot write the tests on every patients that I do since their private and government insurances simply do not allow this. In addition, it is my belief that most clinical research is performed in the US with patients who are on welfare, who have no insurance and who claim they have ME/CFS to obtain free medicine. Many of these people are depressed or mentally aberrant and so this skewers the US figures. I worked for one day in a very prominent US clinic that produces an enormous amount of CFS paper and literally none of the patients had been accessed to any degree and most were depressed or suffering from obvious problems that it serves no purpose in getting into.

In my investigations of ME/CFS patients I find pychiatric disease but only in 3-4% of patients investigated and this is clearly less than the amount of psychiatric disease found in the general public. Why should this be. Cleary my population of ME/CFS patient have achieved considerable academic or financial advancement in relation to the general public prior to their falling ill. To achieve these goals one has to be not only bright but also must have less depression or other limiting psychiatric diseases. Over 15 years we reviewed some 2000 of our patients and what we found was that the biggest incidence of illness by profession per 10,000 population and this was among lung assessment technicians, all in constant contact patients with chronic or acute infectious diseases.
The group of ill patients in sheer numbers were those in the health and teaching professions. Front line workers in infectious disease. Among these two groups, the individuals who had the highest levels of illness were health care workers and teachers involved in residential schools and hospitals for the mentally ill or chronic disabled children. In both environments, areas of rapidly spreading infectious disease and those with decreased cleanliness caused by their disability and proximity. Then again there are the multiple epidemics, several that I have studied personally. One has to come to the conclusion that we are dealing with the consequence of infectious disease.

Who among these groups actually fall ill since not all of them do. That too has become increasingly clear.
(1)_ Individuals with previous significant head trauma so that the blood brain barrier is probably injured and allows infectious disease more ready access to the brain,
(2) individuals who have prior immune dysfunction
illnesses or conditions and more likely to become involved in autoimmune diseases,
(3) patients who have an employment where work & home conditions allow them to become chronically over exhausted such that these individuals cannot react to routine infections with a normal immune response,
(4) patients in the first few weeks after receiving Recombinant Hepatitis B immunization where some may be immune depressed at the time of immunization and some may encounter a neurotropic infection immediately after immunization.
Recombinant Hepatitis B immunization is manufactured to form a sequence of the surface antigen of Hepatitis B and although this sequence is not infectious nor can it apparently be reproduced in the body, the surface antigen of Hepatitis B is known to paralyse the immune system temporarily and allow minor neurotropic infections to become chronic and recognized as self during this period of immune paralysis.

I don't believe that those pushing for a psychiatric identity for ME patients have ever done any in depth investigation of their patients.
Psychiatric definitions tend to be made on a shoot from the hip basis in which the physician acts on total faith of their own mythology and simply has turned their backs to the wealth of investigational tools that we have today. As you also know, many physicians and psychologists who have attempted to state these patients are primarily or in a large part psychiatric are supported by the pharmaceutical industry or insurance companies in various manners.
This connection also gives these individuals vast abilities to access the medical medias of publication of "scientific literature".

Byron Hyde MD
The Nightingale Research Foundation
121 Iona Street
Ottawa, Canada, K1Y 3M1

Posted by peter200015 at 11:03 PM EAST
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Thursday, 19 February 2004
Why did Chris Ellis resign?

Reposted from Chris Ellis:

I have waited sometime before coming forward with my own statement on my resignation as Chairman of the MEA. The counter punch is always easier.The Board, however, nearly spiked my guns by deciding, very wisely, to cite "irreconcilable differences" as the reason for my departure, a most apposite phrase. Certainly, it was in complete contrast to an earlier draft statement which was unaccountably sent to me and which was loaded with " it was all agreed" all over the place- an obvious travesty of the truth.

Unfortunately, the authors could not resist the luxury of a littleput-down which gives me an excuse for replying in the same vein. Afterall, Sir Thomas More, later a saint no less, said that "let a person step on your toe in the morning and by evening (he) will be stepping onyour face. Or, if you would "nemo me impune lacessit" -ah you can always tell the old Grammar School boys.

It is this "acting" Chairman bit. A few weeks earlier, the final MEA proclamation of intent had been produced (and not by me) over a clear "Chairman" etc. authority. On resignation, I appear to have been demoted .Well now, "reluctant" yes but "acting" I will not have. I seem to remember single-handedly setting up and organizing the unning of an open-ended E-mail Board Meeting from mid-December onwards to enable actions to be taken by an otherwise paralysed Board. At the Board Meeting on 20th Jan, I seem to have been the only trustee to have taken the trouble to arm himself with the relevant details of current bank accounts, expected income flow on a monthly basis and figures related tto immediate liabilities.

If one wanted to apply the word "acting" one might do so to the previous Board from whom the parlous state of the MEA was inherited and, in particular to the Treasurer for the past two years, who remains uundaunted as Trustee. I hold no personal rancour since I have only met the man once and spoken to him on the telephone twice only but the record speaks for itself. At that meeting on 20th Jan, called essentially to discuss the financial viability of the MEA his sole suggestion was that we use an Auditor's report dating back nine or so months i.e. before the Appeal made by the MEA and before the Val Hockey redundancy package all of which had some little bearing on the matter under discussion.(Incidentally, as it turned out, the Appeal Fund might well be named The Val Hockey Redundancy Fund). When the "acting " Treasurer for the past 2 years was unable to tell the Board which monies in a particular account were available to cover immediate expenses and which part of same were reserved for research then all calculations became absurd.

Before continuing, I wish to make one thing clear. Insofar as the new Board are having to tackle the horrendous problems left by the previous administration they deserve everybody's support. However, insofar as their initial steps or lack of them to solve the problems are concerned then herein lies my reasons for resigning. Why are the two remaining members of the old Board left to obstruct progress? Can you see a new Tory government continuing with Gorden Brown and John Prescott in tthe Cabinet? Starting in December, with their wrangling over certain proposed articles in the Magazine and then on to their opposition to the newly proposed policy for the MEA, the two members of the old regime are allowed to continue with a policy of resistence. As predicted by me in my previous E-mail they are fighting word by word and I know this because, yet again unaccountably, I was sent an E-mail outlining opposition to the need to update MEA literature in line with the new direction of the Association.

One really upsetting factor for me was to find the prodigal spending of the Association in respect of premises. The business which I owned prior to retirement occupied one tenth the area and yet had six times the turnover, three times the staff and paid the equivalent of a fifth of the rent. Why Buckingham? Well it was near the home of the then Chief Executive and given the importance of this function, not an unjustifyable choice when stated alongside the reason that "rents in Milton Keynes are more expensive". However, for the new Board to contemplate staying because of "valued staff" and because "Buckingham is cheaper than Milton Keynes" yet again, seems to me absurd. Is this a national charity or what? Is Milton Keynes a national first alternative or what? Do not many members have to pay for all this out of meagre Benefits? I give up.

So there it is and yet I would have stayed on if only I had had just one solid supporter. Dr Charles Shepherd? I am sorry to say I think not. As our good correspondent, Robert Napier has succinctly put it, the medical profession is run on an hierarchical basis and Dr Shepherd is compromised by his need to act accordingly if he is to make progress in his career. Notwithstanding this realisation, I had always kept Dr.Shepherd in good regards and just before 20th Jan when the Hooper Report came out, I had written to him offering him my support against his accusers in that document. Then came the Board Meeting, on the way home from which the penny dropped. Three separate remarks by Dr Shepherd came into fusion. Firstly,I remembered that Dr.Shepherd had floated the possibility of sharing premises with AfME when the question of the MEA lease was being discussed. (Unthinkable as the two lady comrades themselves expressed to their credit whilst the two old guard looked on amazed at the opposition.) Secondly, he advised that he had been speaking to Chris Clarke and reported that a meeting with him and his Chairman had been discussed. I was left to decide the venue. Finally, in an aside, he told me conversationally that he often talked with Simon Wessley and "if only he had half an hour to spare I could ...." and here we were back in the Board discussion. On the train home it came to me that he had been about to take on the position of apologist for Simon Wessley. You know, the sort you have all heared before. The sort that runs ...Hitler was not all bad. He built the Autobahns, you know. He rebuilt the German economy. Well, dear readers, make what you like of the above. I have formed my own opinion.

I may well be back in true Arnie fashion. All that is needed is six good men/ women.Good and true.


Posted by peter200015 at 11:23 PM EAST
Updated: Thursday, 19 February 2004 11:33 PM EAST
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Friday, 13 February 2004
Montague and Hooper reply to Dr Shepard and HealthWatch

Part 2 Continued from Feb12(part1)

Re: HealthWatch

1. ????? In his letter of 11 July 2001 HealthWatch Chairman and solicitor Malcolm Brahams of Messrs David Wineman (Craven House, 121 Kingsway, London WC2B? 6NX)? states that the Montague / Hooper paper? "makes a number of statements about HealthWatch which are completely inaccurate and are almost certainly defamatory".? In his subsequent letter of 13 July 2001 enclosing a submission (which Dr Shepherd states in correspondence he asked the HealthWatch Press Officer Michael E Allen to prepare), Malcolm Brahams further states: "There are no grounds whatsoever for suggesting either that we are funded by drug companies or that we were set up to serve their interest.? Your assertions to that effect are unjustified and are an insult to the highly qualified and hard working people who make up my committee".

2. ????? In the accompanying submission? (the one which also appeared on the HealthWatch website), it states:

(i) ????? ? "HealthWatch is funded in the main by membership
subscriptions.? In the distant past, small sums have been received from Pharmaceutical Companies".

(ii) ????? ?? "HealthWatch has issued a number of Position Papers which contain views endorsed by the committee....we have looked at all these
and cannot find the? phrase represented as if a quotation:? `Diagnoses...that may encourage unnecessary treatment for non-existent diseases'"

(iii)?? "Some of our members are opposed to various methods of treatment "

(iv)? "Membership of HealthWatch is open to anyone who agrees with our constitutional aims".

3.? In his various correspondence Dr Shepherd states about HealthWatch:

(a) ????? "It is untrue to say that HealthWatch is funded by drug

(b) ????? "It is untrue to say that the clearly- stated aims are to promote pharmacological interventions and oppose all forms of alternative and complementary forms of therapy.? No such statement exists"

(c) ????? It is untrue to say that HealthWatch is specifically opposed
to specific interventions such as homoeopathy, acupuncture, dietary modulation etc. Recent speakers at HealthWatch meetings have included John Diamond (the distinguished journalist who recently died from cancer)

(d) ????? It is untrue to say that membership is only open to those who promote the pharmaceutical industry

Shepherd categorically states :? "There really is no evidence to support these highly derogatory allegations about HealthWatch".???? We respond to these various points in conjunction with each other.

4. ????? re: Healthwatch being funded by drug companies.????? We note the admission by the Press Officer of HealthWatch that in the past,
the organisation has received money from Pharmaceutical Companies.? In our belief that this was indeed the case, we relied upon the book Dirty Medicine, which states

???????????? "In 1992, the minutes of the Campaign Against Health Fraud? (the name of the organisation before it changed its name to HealthWatch) Annual General Meeting disclosed that in the year 1991-1992 the Campaign received a grant from the Wellcome Foundation.? Other granting bodies included medical insurance companies and other pharmaceutical companies".

????? The book also makes it plain that it was public knowledge that
the Campaign was? funded by the Wellcome Foundation.?

?????? We further rely upon Hansard (Lords) 28 April 1993:364-382, which records a debate in the House of Lords in which the Earl Baldwin of Bewdley said:

"Drugs company money has gone into Healthwatch, the body that has set itself up to expose unacceptable practices in medicine (but unacceptable, one may ask, according to whose agenda?)...
I know of examples where highly promising lines of research into? complementary medicine are being stifled by the influence of drugs company funding....Vitamins and minerals cannot be patented".

?????? We also rely upon Hansard (Lords) 10 May 1995:66-68, which
records another? debate in the House of Lords in which the Countess of Mar said:

???????????? "Is the noble Baroness? (the Minister of State, Home Office) aware of the activities of an organisation - formerly the Campaign Against Health Fraud and now called HealthWatch--which has been systematically destroying the reputations of people working in complementary medicine, particularly those in nutritional medicine??????????????? The information which HealthWatch has provided to the media has subsequently been proved false...."

??????? The Minister of State replied:

??????????????? "The noble Countess is right in saying that HealthWatch has been subject to investigation....if any organisation uses its funds in order to campaign against another organisation on the basis of flawedresearch,the Charity Commission will be concerned".

???????? The Countess of Mar said:

??????????????? "Does the noble Baroness approve of the fact that the organisation is supported by the Wellcome Foundation and by Private Patients Plan, amongst other pharmaceutical and insurance companies?"

?????? On the basis of the above, we cannot accept either from Dr
Shepherd or from the Chairman of HealthWatch (acting in his dual capacity as a solicitor in the firm of Messrs David Wineman) that what the paper stated about HealthWatch was ? defamatory. Moreover the information upon which we relied was already in the public domain.


5. ????? re: the claim by HealthWatch that no statement exists which
says that the organisation? opposes "Diagnoses...that may encourage unnecessary treatment for non-existent? diseases".??? We note the acknowledgment by the Press Officer of HealthWatch (Michael E Allen) in his Submission which accompanied a letter dated 13 July 2001 to Professor Hooper from the Chairman of HealthWatch that? "we have looked...and cannot find the phrase represented as if a quotation: `Diagnoses...that may encourage unnecessary treatment for non-existent diseases' ".

???? The information upon which we rely comes from the HealthWatch organisation itself.

???? It is the HealthWatch Subscription form for 1990, a copy of which we possess.? That document gives a contact telephone number (then given as 01-673-4401) and the document clearly states the campaign's aims as being? " To promote...Better understanding by the public and the media that valid clinical trials are the best way of ensuring public protection.?? To oppose...Diagnoses that are misleading or false, or that may encourage unnecessary treatment for ...non-existent diseases".???? Quite certainly Simon Wessely unceasingly promotes his belief that despite it being? formally classified since 1969 in the WHO International Classification of Diseases as a neurological disorder, ME is a non- existent disease? (for example: Microbes, Mental? Illness, the Media and ME: The Construction of Disease.? Simon Wessely.
The 9th Eliot Slater? Memorial Lecture, London, 12 May 1994;?
Eradicating ME: Report of a meeting held on 13 April 1992 at Belfast Castle. Pfizer / Invicta Pharmaceuticals:4-5).

???? The HealthWatch document also states:

?????????????????? "The Campaign Against Health Fraud (`Quackbusters') exists to combat the growing problem of quackery.It was formed by a group containing doctors, lawyers, journalists and others who are worried that quackery has acquired a veneer of respectability and has worked its way into otherwise respectable news media. It plans a programme of public

?????? The same HealthWatch document also states (in bold type) "Leading members of? the Campaign include.... Professor Iain Chalmers.... Dr David Pearson....Dr Chris Bass....Dr Simon Wessely" (amongst others).

????? We therefore retain our belief that we made no "false or misleading allegations"? about HealthWatch.

6. ????? re: HealthWatch being opposed to alternative and complementary medicine?????? We note that in the Submission prepared by the HealthWatch Press Officer, it is acknowledged that some of the Campaign's members are opposed to various methods of treatment.

?????? It is known that HealthWatch members appear generally to be opposed to the use of? non-pharmacological interventions, especially treatments which are referred to as ????? "alternative and complementary" such as dietary modulation and nutritional supplementation.?

?????? This often-stated position of HealthWatch members is clearly of some relevance in the organisation.? It becomes even more relevant when members or associates of HealthWatch sit on Government advisory committees.

?????? In the past, HealthWatch members (including Dr Charles
Shepherd) have been involved in a number of cases where medical practitioners were brought before the? Court, professional tribunals and media regulators.? Members of the charity have also been involved in public and highly critical media exposure of medical practitioners ? who practise alternative and complementary medicine.

?????? We refer to the fact (mentioned in correspondence by Dr
Shepherd) that the late John? Diamond was a speaker at HealthWatch meetings.? In this respect, we recall that ?????? John Diamond received the HealthWatch `journalist of the year' award and that he was well-known for his regular articles in the Saturday Times Magazine and in other media outlets (including television) in which he attacked alternative and complementary therapies.

????? In view of the above, we retain out belief that we have made
no "false or misleading allegations" about HealthWatch.

7.?? re: membership of HealthWatch

???? We here rely on our knowledge that membership of HealthWatch has been refused to those who promote `natural' medicine. Further, whilst professing that " Membership is open to anyone who agrees with our constitutional aims", the organisation's own literature states "Applications are subject to approval by a Membership committee".

With the above in mind, we retain our belief that no-where in the original paper did we make "false and misleading allegations" about Dr Shepherd or about HealthWatch, nor did we make a "personal attack" upon either Dr Shepherd, Professor Pinching or Professor Wessely.? On the contrary, we simply presented factual information.

We confirm that the original paper has been amended accordingly.

We also confirm that a copy of this document will be sent to Professor Liam Donaldson (Chief Medical Officer); to Professor Allen Hutchinson (Chairman of the CMO's Working Group on CFS/ME); to Professor Peter Fidler (Vice Chancellor, University of Sunderland) and to Ms Alison Steel (Head of Corporate Affairs, University of Sunderland).? A copy will also be sent to Dr Shepherd.

The known correspondence which Dr Shepherd has sent concerning the Montague / Hooper paper is listed in Appendix (3) to this present document.

Sally Montague

Malcolm Hooper?

Part3 tomorrow Feb14

Posted by peter200015 at 10:35 PM EAST
Updated: Friday, 13 February 2004 10:38 PM EAST
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Thursday, 12 February 2004
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


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 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.


Posted by peter200015 at 10:38 PM EAST
Post Comment | Permalink
Wednesday, 11 February 2004

The ME Association
Resignation of acting chairman

Posted 9th February 2004

The Board of Trustees regret to announce the resignation of Mr Chris Ellis as acting chairman due to irreconcilable differences with other members of the board. Mr Ellis had been acting chairman since our AGM on 6 December 2003.

The Board would like to thank Mr Ellis for his valuable contribution during this crucial time for the Association.

MEA resignation

Posted by peter200015 at 10:14 PM EAST
Updated: Wednesday, 11 February 2004 10:16 PM EAST
Post Comment | Permalink
Sunday, 8 February 2004
ME/cfs Scandal Continues
Below is the email that I have received from Joe Marsh of the
Kent/Sussex ME Group and AfME affiliate. I have also had an email in
from Colin Barton, but I think that posting this one on its own will

This email constitutes abuse. It casts aspersions on my care of my
sick son amongst its other comments. It is vicious.

A copy of this email has now gone to The Times, The Sunday Times, The
Telegraph, The Big Issue and Disability Now.

This is what AfME affiliates do to people who raise
serious,legitimate and legal concerns over the workings of these
supposedly ME/CFS patient focussed organisations.

They try to use scare tactics. They try to frighten. And they do it
late at night. This is how they behave.


London UK

-----Original Message-----
From: Joe Marsh []
Sent: 08 February 2004 00:21
Cc: 'Colin Barton'
Subject: Useless information

Mrs. Bryant,

As usual you never cease to amaze me. For someone who claims to be a
journalist I would have thought that there was one element you got
right..... the truth!!

But yet again we see you criticise, taunt and immaturely abuse people
on your site. From Dr Shepherd to AYME, you seem relentless in your
quest to upset as many people as possible with misinformation and
false statements. Well now it is time for you to learn a lesson.... It
is called THE LAW.

And very soon you are going to find out what happens to people who
abuse it. People who lie, and twist information and make things up!!
One day you, I hope, you will see that all these people you "slag"
off are there solely to help your son. I hope one day he recovers
from this illness.... Although it is well known that support from
family helps. And one cant help but wonder how much time you spend
with him. After all you seem to spend all your time on the computer
slagging everyone off that is trying to help him. No doubt you will
put this on your site and have a "bitch" at it like you do all other
information you steal from IMEGA-e but for once perhaps you can face
your peers and answer what exactly you do.... Why you think you are a
doctor of M.E. and why you think you know so much about this illness
that you can criticise all others who try to help!! It would be
interesting to see what you actually do that is positive and helps
people with M.E. because as far as I can tell all you seem to do is
look for the negative and then abuse it as much as possible. Perhaps
you should be looking at positive information and recoveries that
people have made and therefore have a varied report on your site.
Sometimes I wonder why sites like yours exist. All you seem to do is
try and bring down those who are there to help! Do you think we do
our jobs for fun?? I look forward with interest to your reply to
this message.


Joe Marsh | Development Officer | Sussex & Kent ME/CFS Society
I wonder if the members of this "society" are aware of the above e-mail

Posted by peter200015 at 11:19 PM EAST
Post Comment | Permalink
Thursday, 5 February 2004
ME/CFIDS/CFS/FM Unhelpful Counsel Cont.
Page6,    Continued from Feb 4
Page1 jan31, page2 Feb1,page3 Feb2, page4 Feb3, page5 Feb4,

Unhelpful Counsel

End piece - Patient voices

In the plethora of views about the research and management of this illness, the authentic voice of the sufferer is rarely heard. For this reason some individual poignant experiences are given below.

"I was eighteen years old when I was struck down with severe, virally-induced ME. I am now thirty-three. It has destroyed my quality of life. My feelings of loss and helplessness are often overwhelming. My parents have to care for me and the illness has deprived me of a career, a social life, and the possibility of marriage and children. I am 90% bed-bound and feel wretchedly ill every waking moment. At worst I am unable to hold a conversation, watch TV, or even read. My only hope is for a research breakthrough in this illness. More than anything else, I want to see ME recognised and a treatment found." Clare

"The worst thing about having ME is, obviously, having ME. It is spending three years in your bedroom looking at the walls, in pain, isolated, unable to read, write, or talk, with a brain like spaghetti. The worst thing is having a brain which no longer works and which I can't do anything about. It's like being in solitary confinement, except that I haven't done anything wrong." Josh

"The feelings of pain and sickness are with me all the time. The illness has changed my life. I can do none of my former hobbies, and am left hanging around on the fringes of a no man's land between the dying and the well. It's a double torture - having the illness and having it unrecognised. It has been said that patients like me should just move on, but after twenty years it seems to me that the only things moving on in this illness are professionals - medical and charitable - making careers out of my misery. A little humility and some humanity by those in the so-called `caring professions' would go a long way towards helping me cope with what has been a truly awful experience." Alex

25% ME Group. Survey of housebound/bedridden severly-ill ME patients. (Re-analysis by MERGE.) 2000. Available from Simon Lawrence, The 25% ME Group, Troon, Ayrshire, Scotland KA10 6SQ.
Abbot NC & Spence VA. The National Research Register and ME/CFS: an analysis by MERGE. February 2002. Available from
Acheson ED. The clinical syndrome variously called benign myalgic encephalomyelitis, Icelandic disease and epidemic neuromyasthenia. American Journal of Medicine 1959; 569: 595.
Bested AC et al. Chronic fatigue syndrome: neurological findings may be related to blood-brain barrier permeability. Medical Hypotheses 2001; 57(2): 231-7.
Bolsover N. Commentary: the evidence is weaker than claimed. British Medical Journal 2002; 384: 294.
Bombardier CM & Buchwald D. Chronic fatigue, chronic fatigue syndrome, and fibromyalgia. Disability and healthcare use. Medical Care 1996; 34: 924-30.
Bou-Holaigah I et al. The relationship between neurallymediated hypotension and the Chronic Fatigue Syndrome. Journal of the American Medical Association 1995; 274; 961-7.
Brazelmans E et al. Is physical deconditioning a perpetuating factor in chronic fatigue syndrome? A controlled study on maximal exercise performance and relations with fatigue, impairment and physical activity. Psychological Medicine 2001; 31: 107-14.
Chalder T et al. Prevalence of Gulf war veterans who believe they have Gulf war syndrome: questionnaire study. British Medical Journal 2001; 323: 473-6.
Chaudhuri A & Behan PO. Fatigue and the basal ganglia. Journal of Neurological Science 2000; 179: 34-42.
Clark C et al. Chronic Fatigue Syndrome: a step towards agreement. Lancet 2002; 359: 97-8.
De Becker et al. A definition based analysis of symptoms in a large cohort of patients whith CFS. Journal of Internal Medicine 2001; 250: 334-40.
Dowsett EG et al. Myalgic encephalitis - a persistent enteroviral infection? Postgraduate Medical Journal 1990; 66: 526-30.
Eaton L. Recognising chronic fatigue is the key to improving outcomes. British Medical Journal 2002; 324: 131.
Freiberg F. A subgroup analysis of cognitive behavioural treatment studies. Journal of Chronic Fatigue Syndrome 1999; 5: 3-4 & 149-59.
Fukuda K et al. The chronic fatigue syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine 1994; 121: 953-9.
Hansard Report. The House of Lords debate on ME/CFS. 16th April 2002. Col 899. Available from The Lords Hansard full text database.
Harland J et al. The Newcastle exercise project: a randomised controlled trial of methods to promote physical activity in primary care. British Medical Journal 1999; 319: 828-32.
Hines GME & McLusky DR. Retrospective study of the chronic fatigue syndrome. Proceedings of the Royal College of Physicians . of Edinburgh 1993; 23: 10-14.
Ho Yen D & McNamara I. General practitioners' experience of chronic fatigue syndrome. British Journal of General Practice 1991; 41: 324-6.
Holmes J. All you need is cognitive behavioural therapy? British Medical Journal 2002; 384: 288-90.
Jason LA et al. Politics, Science, and the Emergence of a New Disease: The Case of Chronic Fatigue Syndrome. American Psychologist 1997; 52(9): 973-83.
Johnson H. Osler's Web. Crown Publishers Inc., New York, 1996.
Katon W & Russo J. Chronic fatigue syndrome criteria. A critique of the requirement for multiple physical complaints. Archives of Internal Medicine 1992; 152: 1604-9.
Lane RJ et al. Muscle fibre characteristics and lactate responses to exercise in chronic fatigue syndrome. Journal of Neurology, Neurosurgery and Psychiatry 1998; 64: 362-7.
Lane RJ. Chronic fatigue syndrome: is it physical? Journal of Neurology, Neurosurgery and Psychiatry 2000; 69: 280.
Lewis G & Wessely S. The epidemiology of fatigue: more questions than answers. Journal of Epidemiology and Community Health 1992; 46: 92-7.
Manu P et al. The frequency of the chronic fatigue syndrome in patients with symptoms of persistent fatigue. Annals of Internal Medicine 1988; 109: 554-6.
McCully KK & Natelson BH. Impaired oxygen delivery to muscle in chronic fatigue syndrome. Clinical Science (Colch) 1999; 97(5): 603-8.
Michiels V & Cluydts R. Neuropsychological functioning in chronic fatigue syndrome: a review. Acta Psychiatr Scandinavica 2001; 103(2): 84-93.
Patarca-Montero R et al. Review: Immunology of Chronic Fatigue Syndrome. Journal of Chronic Fatigue Syndrome 2000; 6: 69-107.
Patarca-Montero R et al. Cytokine and other immunologic markers in chronic fatigue syndrome and their relation to neuropsychological factors. Applied Neuropsychology 2001; 8(1): 51-64.
Paul L et al. Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome. European Journal of Neurology 1999; 6(1): 63-9.
Pinching AJ. Chronic Fatigue Syndrome. Prescriber's Journal 2000; 40; 99-106.
Prins JB et al. Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre randomised controlled trial. Lancet 2001; 357: 841-7.
Ramsay AM. Myalgic encephalomyelitis or what? Lancet 1988; 100.
Royal Colleges of Physicians, Psychiatrists and General Practitioners. Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners: Chronic fatigue syndrome. 1996, London: Cathedral Print Services.
Scott LV & Dinan TG. The neuroendocrinology of chronic fatigue syndrome: focus on the hypothalamicpituitary-adrenal axis. Functional Neurology 1999; 14(1): 3-11.
Shepherd C. Pacing and exercise in chronic fatigue syndrome. Physiotherapy 2001; 87: 395-6.
Sontag S. Illness as Metaphor. Penguin Books, UK, 1983.
Spence VA et al. Enhanced sensitivity of the peripheral cholinergic vascular response in patients with chronic fatigue syndrome. American Journal of Medicine 2000; 108: 736-9.
Steven ID et al. General practitioners' beliefs, attitudes and reported actions towards chronic fatigue syndrome. Australian Family Physician 2000; 29: 80-5.
Tan EM et al. The case definition of chronic fatigue syndrome. Journal of Clinical Immunology 2002; 22: 8-12.
Van der Werf et al. Identifying physical activity patterns in chronic fatigue syndrome using actigraphic assessment. Journal of Psychomotor Research 2000; 49: 373-9.
Vercoulen JH et al. Prognosis in chronic fatigue syndrome: a prospective study on the natural course. Journal of Neurology, Neurosurgery and Psychiatry 1996; 60: 489-94.
Wessely S. Chronic fatigue syndrome-trials and tribulations. Journal of the American Medical Association 2001; 286: 1378.
Whiting P et al. Interventions for the treatment and management of chronic fatigue syndrome: a systematic review. Journal of the American Medical Association. 2001; 286: 1360-8.

Postscript by MERGE

This document is the creation of theMERGE staff, Dr Neil C. Abbot and Dr Vance A. Spence. A substantial contribution, including to the production and design, was made by Dr David J. Newton. The sections dealing with social care were prepared following expert advice from Mr William Dockery.

MERGE has links with the 25% ME Group which represents the severest ME sufferers in the UK and this analysis of the CMO report has, in part, been carried out with this particular group in mind. We acknowledge the many patients, carers and concerned professionals from the Friends of MERGE scheme for their contributions and support to the production process.

MERGE exists to fund scientific investigation into the causes and treatment of myalgic encephalomyelitis (ME), to provide information and education about the condition, and to support sufferers. The charity was founded by Dr Vance Spence and Mr Robert McRae, both ME sufferers forced to retire early from their professions. With Roger Jefcoate CBE as its founding patron, and The Countess of Mar as its patron, MERGE obtained charitable status in April 2000 and, after establishing itself successfully, commenced its five-year plan of expansion from May 2001. Ambitiously, we aim to commission and fund a variety of research projects into the pathophysiological basis of the illness, and to establish a social care programme.


Following publication of the Working Group's report to the CMO, there was some debate about the future direction of research into CFS/ME in the UK. In particular, great reliance was placed on the "research" evidence documented in the National Research Register.

During a debate in the House of Lords on the Working Group's report on CFS/ME (16th April 2002), mention was again made of the role of the National Research Register in informing policy in this area. Accordingly, MERGE has included the executive summary of its document, Research into ME/CFS in the United Kingdom: Can the National Research Register inform future policy, in this Appendix. Electronic copies of the full document (50 pages, with 39 pages of tables) are available from

Research into ME/CFS in the United Kingdom:
Can the National Research Register inform future policy?

An analysis by MERGE, February 2002 - Dr NC Abbot and Dr VA Spence
Executive Summary
There is presently a debate in the United Kingdom about future direction of public policy regarding research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Energising the debate is an apparent increase in the scale of the problem nationally and, recently, publication of a report by an independent working group to the Chief Medical Officer of England. However, policy must be guided by good data and great reliance has been placed on the UK National Research Register (NRR) of completed and ongoing medical studies as a resource for informing debate. This register is a database of ongoing and recently completed research projects funded by, or of interest to, the United Kingdom's National Health Service. This analysis of the information on ME/CFS contained within the NRR was designed to answer a specific question: given the interest in the development of a research policy for ME/CFS in the medium to long term, is the information contained in the NRR records robust and accurate enough to inform policy-makers?

The total raw number of studies on ME/CFS retrieved from the NRR was 28 ongoing and 133 completed studies (partial records are presented in a 35-page Appendix to this report). From each, the following key data were extracted: Title; End date; Contact person; Principal research question; Sample group description; Funding source and amount. Each record was assigned to an ad hoc "research category" (of interest to researchers), and a "clinical category" (of more interest to the public and policy-makers) on the basis of the professional and/or departmental affiliation of the "contact person".

Of the 161 NRR reports retrieved, 10 appeared not to involve ME/CFS patients directly, and 12 appeared to be duplicates of existing reports. Thus, only 139 (23 ongoing and 116 completed) could be classed as "relevant" reports - representing 0.17% of the 80,000 on the entire NRR database. Eighteen reports (5 ongoing and 13 completed) concerned research in Scotland. Many reports were incomplete: 35% and 31% of ongoing and completed study records, respectively, had missing descriptions of the proposed sample group; 22% and 28%, respectively, had missing details of sources of funding; and the amount of funding received was not stated in more than a half of all entries. In addition, some records had very similar content, despite a difference in "end dates" which varied by up to 18 months, raising the possibility that some records describe extensions of an existing project rather than separate discrete investigations.

When classified by clinical category, 41% of reports had "contact persons" whose professional association was with "psychiatry, psychological medicine or mental health". The second and third largest categories were neurology, neurosciences or neurophysiology (13%) and general medicine/medical care research (12%), respectively. When classified by research category, investigations with some scientific rationale and some relevance to the pathophysiology of the illness constituted the largest group of records (43%), but many of these were smaller exploratory studies (evidenced by relatively small sample sizes) that are unlikely to have given a definitive answer to the initial research question. The main other categories contained clinical trials or other investigations of essentially biopsychosocial interventions (17%), followed by surveys pertaining to biopsychosocial interventions (14%), and surveys of welfare or social aspects (9%).

Given that the amount of funding received was not stated in more than a half of all entries, no definitive conclusions can be drawn from the information on source or amount of funding. However, the clinical category "psychiatry, psychological medicine or mental health" is the most successful in attracting research funding. Overall, however, few public resources (NHS or Research Council) have been directed towards researching this illness.

In conclusion, the NRR records tend to be incomplete; to contain inadequate descriptions of the research proposed; and to have no cross-reference to the results emanating from the research. The records relating to ME/CFS reveal that comparatively little research has been done given the scale of the problem in the UK and that few public resources have been directed towards research, particularly into the pathophysiological basis of the illness. Much of the research undertaken has been led by investigators with a professional or departmental affiliation to Psychiatry, Psychological Medicine and Mental Health, and none of the 139 studies were conducted on the most severely-ill patients.

Given the recent recommendations of the Chief Medical Officer of England that government investment in research on ME/CFS should be comprehensive and include a range of studies designed to "elucidate its aetiology and pathogenesis, clarify its epidemiology and natural history; characterise its spectrum and/or subgroups; and assess a wide range of potential therapeutic interventions including symptom control measures", we conclude that the NRR is not robust enough, as an information source or as a research resource, to inform the direction of future policy.

MERGE is the Myalgic Encephalomyelitis Research Group for Education and Support MERGE: the Myalgic Encephalomyelitis Research Group for Education and Support

Posted by peter200015 at 5:16 PM EAST
Updated: Thursday, 5 February 2004 6:13 PM EAST
Post Comment | Permalink
Wednesday, 4 February 2004
ME/CFIDS/CFS/FM Unhelpful Counsel Cont.
Page5 &bnsp;&nbvsp;Continued from Feb 3
Unhelpful Counsel

3.5 Failure to highlight data on the most severely ill patients
At several points, the report mentions the problems of the most severely ill patients:

"Severely ill are severely overlooked; just ignored and invisible." (2.3.1)

"In general, this group is excluded from research, so they may not fulfil criteria used to test evidence-based approaches. Some report that they want to believe doctors and feel `frightened to say no' or that they do not have the energy to disagree. Fears were also expressed over: being branded as a `difficult patient', losing benefits, letting people down, not trying, losing the love of the family, and being labelled as mentally ill." (

"Not enough is known about severe forms of the condition CFS/ME that are reported to affect up to 25% of patients." (4.4.1)

Yet, a database of information collected and analysed on behalf of severely-ill sufferers by the 25% ME Group, which was presented to the Working Group, has not been used to full effect, and remains unmentioned in Annexe 3 (Patient Evidence).

MERGE takes the opportunity of highlighting it in Table 2 below.

The 25% group, in a questionnaire report (25% ME Group, 2000), revealed that of 215 questionnaires returned some interesting observations could be made: 55% of respondents had been ill for more than ten years, and 50% of them had taken more than two years to obtain a formal diagnosis of CFS/ME. Twenty-five percent of respondents described themselves as bedridden, and 57% had been either housebound or bedridden for more than six years. As regards appropriate medical advice or treatment, 29% reported that none had been offered during the course of their illness. Only 25% of respondents felt that their condition was improving, or had improved from an even more chronic level. Important additional findings were that 76% (162/212) of respondents felt that the lack of a diagnosis or appropriate advice in the early stages of their illness had impacted on the severity and longevity of their symptoms; that 38% (81/212) described themselves as totally dependent on others; and that 48% (104/215) reported no regular assessment or management of their condition. The management strategies recommended by the report are inappropriate for this group of sufferers, whose continued ill health - its aetiology, perpetuation and cure - remains a neglected challenge.

Table 2. Survey of severely affected CFS patients, reproduced courtesy of the 25% group
Age (years) Number (%)
<205 (3)
20-3970 (36)
40-5990 (47)
>6028 (14)
Years Housebound/bedridden
YearsNumber housebound (%)Number bedridden (%)
<210 (5)10 (5)
2-549 (24)19 (9)
6-1059 (29)16 (8)
>1035 (17)35 (17)
Present Condition
improved/improving53 (25)
stable low level functioning105 (49)
slowly deteriorating56 (26)
Duration of illness (years)
Duration (years) Number (%)
2-531 (14)
6-1066 (31)
10-1449 (23)/td>
>1568 (32)
Illness onset
sudden104 (49)
gradual110 (51)
Time to formal diagnosis (months)
<1276 (36)
13-2428 (13)
25-6053 (25)
>6053 (25)
Time to appropriate advice/treatment(months)
<1266 (32)
13-2414 (7)
25-6040 (20)
>6024 (12)
none given60 (29)

3.6 Undue prominence given to the `biopsychosocial' model of the illness

From the report of the first recorded outbreak in 1934 until the late 1980s, the emphasis was on the elucidation and treatment of the biomedical aspects of the illness (e.g., Acheson, 1959). Since then, a "biopsychosocial model" has been proposed - primarily by psychiatric/psychological professionals - defined by the report as:

"The biopsychosocial model of pathophysiology, applicable to all disease, suggests that once an illness has started its expression is affected by beliefs, coping styles, and behaviours, while consequential physiological and psychological effects act in some ways to maintain and/or modify the disease process." (3.3.4)

"Illness beliefs - The way in which abnormal illness behaviour and illness attributions (especially about cause) may be perpetuating ill health and disability in some CFS/ME patients remains a contentious issue." (3.3.3)

Psychological factors do, of course, accompany chronic illness - every patient has a mind and feelings which are affected by the experience of disease. The problem concerns the ascription of causation. The view that "psychosocial factors" either precede (cause?) CFS/ME, or play a major role in maintaining the illness after it has developed, has taken root among some, but not all, members of the medical profession, and has influenced the perception of CFS/ME in the media and among the general public. Naturally, patients have come to feel stigmatised and alienated, and perceive the influence of the model, particularly among medical practitioners, to have a pernicious effect on their care. To complicate matters, patients' beliefs that their illness is "physical" are seen by proponents of the biopsychosocial model as a sign of psychological dysfunction. Such psychologising of patients illness experience is not unique to CFS/ME patients. A recent study on Gulf War Syndrome was entitled: "Prevalence of Gulf war veterans who believe they have Gulf war syndrome" (Chalder et al, 2001). The principal author of this study was one of the Key Group members of the report. Many CFS/ME patients await with interest the next study in the series: to continue the analogy of the amputee used above, it could perhaps be on amputees (with or without CFS/ME) who believe that they have lost a limb. The CMO report itself - in select sections possibly written to assuage its lay members - does state the central problem with this model succinctly:

"Although they may have speculated about causation, mostly what has been demonstrated is an association. For example, the various psychological factors claimed to be causal may be a consequence of severe, prolonged CFS/ME." (

"Certain strongly held attitudes to the illness and coping mechanisms do seem to be associated with a poorer prognosis, but studies done so far have not enabled the direction of causation to be determined. Some have inferred that a poorer prognosis may be caused by such attitudes, but it can equally be argued that severe, prolonged illness may have a negative impact on attitudes and coping mechanisms... the various psychological factors claimed to be causal may be a consequence of severe, prolonged CFS/ME, and for the most part the study designs adopted would not enable the question of causality to be resolved." (

"However, it seems likely that cognitive dysfunction in CFS/ME cannot be explained solely by the presence of a coexistent psychiatric disorder." (3.3.4)

"The biopsychosocial model of CFS/ME has influenced its perception among the general public."

Nevertheless, peppered throughout the remainder of the report are examples of classical biopsychosocial model-ism, despite the resignation of its supporters from the Key Group on the grounds that "the condition's psychological aspects were being underplayed" (Hospital Doctor, 17th Jan 2002). Thus, "An individual's symptom profile is modified by the impact of illness on the person affected and those around them." (3.4.2)

"Re-enablement should encompass cognitive, emotional, and social aspects as well as physical aspects." (4.1.2)

"Ideally, services would be patient-centred, and adopt a biopsychosocial model or a holistic view of care." (3.3.4)

"It is thought that certain strongly held beliefs about the cause of the illness can impede progress. These include the view that the illness is entirely physical or is caused by a persistent virus. These beliefs could be partially correct - e.g., a virus could have provoked a persistent or prolonged change in physical functioning. However, they could also act as obstacles to recovery or to necessary treatment." (3.3.3)

Given that the evidence of efficacy for these interventions in CFS/ME sufferers is weak (Whiting et al, 2001), the relevance of these statements in the Working Group report is questionable. Why should the "ideal" service (which patients and their carers are paying for through their taxes) be one which adopts a biopsychosocial model, given the available evidence? More generally, how would it be if the same statements were applied to either asthma or angina, both of which have psychosocial elements yet are recognised as predominantly physical illnesses? As Susan Sontag says in her book, Illness as Metaphor (1978), "Theories that diseases are caused by mental states and can be cured by will power are always an index of how much is not understood about the physical terrain of a disease." Some consider this insight to be particularly apt in the case of CFS/ME at the beginning of the 21st century.

3.7 Downgrading of relevant research findings

At points the Working Group's report mentions its role in assessing research evidence: "...we sought to bring together knowledge on CFS/ME to support initiatives to improve care for patients. This has been an intricate process, drawing on research evidence, the experience of patients and diverse clinical opinion." (Foreword) "... make recommendations for further research into the care and treatment of people with CFS/ME." (Remit, 1.1)

Yet, despite this, the main body of the CMO report deals with the research findings in 639 words (section 3.3.4) out of a total of some 34,600 in the main report. However, there is a large body of research literature on CFS/ME. As the CFIDS Association of America makes clear, though the aetiology of the illness remains elusive, numerous biological abnormalities have been reported in:

  • Immune function - in the form of cytokine overproduction or poor cellular function (Patarca-Montero et al, 2000; Patarca-Montero et al, 2001).
  • Brain and CNS - with possible involvement of the basal ganglia (Chaudhuri & Behan, 2000) or the functioning of the blood-brain barrier (Bested et al, 2001).
  • Muscle - in the form of oxidation defects (McCully & Natelson, 1999) or post-exertional deficits (e.g., Lane, 2000; Paul et al, 1999).
  • Autonomic functioning - as neurally-mediated hypotension (e.g., Bou-Holaigah et al, 1995).
  • Hormonal function - most prominently at the hypothalamic-pituitary-adrenal axis (e.g., Scott & Dinan, 1999).
  • Cardiovascular integrity - endothelial sensitivity to acetylcholine (e.g., Spence et al, 2000).
  • Neuropsychological functioning - including impaired working memory and information processing unrelated to psychiatric illness (review: Michiels & Cluydts, 2001).

"The research literature contains several hypotheses and proposals to explain how CFS/ME may be caused or maintained. The quality of the evidence is variable, however, and many suggested mechanisms are as yet based on associations rather than cause or linkages." (3.3.4)

Interestingly, these reasons for bypassing a full consideration of the research evidence, namely, the variable quality and lack of causal evidence, could also apply to the evidence for the choice of management strategies (cognitive behavioural therapy, graded exercise therapy, and pacing) and, it could be plausibly argued, to the biopsychosocial model itself.

The downplaying of the research evidence partly reflects the constrained remit, which was restricted to management strategies. With a different remit, the report might have been able to recommend a direction for future fundamental research after a thorough review of the literature. Instead, the message presented to the media, the public and opinion formers is that the best that can be done is to manage symptoms, most prominently with psychological strategies.

3.8 Inadequate coverage of social care and welfare issues

The foreword to the report states that: "In 1998, the Working Group on CFS/ME set out to consider how the NHS might best provide care for people of all ages who have this complex illness."

While the NHS is the major player in care provision for patients, it is only one agency among many providing care for people. By focusing so closely on one agency, the CMO report has missed an opportunity to highlight more clearly the responsibilities to CFS/ME patients of other agencies and the professionals who work for them. The nature of the illness and its practical consequences, particularly for the severest sufferers, are such that social services should be closely involved in both care planning and direct service provision. Consideration should be given to those most severely affected, identifying them as a special interest group in terms of joint community care planning and in planning for children and young people's services.

"The report's message is that the best that can be done is to manage symptoms."

The report recognises that, on the ground at present, the range of services are not `joined up'.

"Beyond primary care level, the issue that causes most concern is the lack of specialists and services... Some patients find themselves in geographical `black holes' that lack specialist provision." (2.2.4)

"Patients can encounter arbitrary and poorly informed decision-making on other issues such as home help and mobility badge schemes, as well as sheer resource limitation. Failure to access appropriate support from social services can be compounded if doctors fail to provide clear guidance about diagnosis and need." (3.5.1)

While the recommendations on equipment and practical assistance (4.3.3) and the call for service networks (6.3) is welcome, statements about the services CFS/ME sufferers `should' receive in the community are little more than howling for the moon: without the full support and practical backing of local social work departments, sufferers will struggle to see these needs either fully met or met appropriately. For example, a recommendation that clinicians should inform patients about local services is one thing, but providing clinicians with the ability to refer patients to the relevant agencies themselves would be truly useful. Indeed, with the advent of joint social work/health teams, this is no longer impractical. As regards recommendations to employers - even the NHS itself - the Working Group's report is light on the provision of practical advice about how the illness should be managed in the workplace. A fuller exploration of this issue would have been a welcome extension to the report, as would advice on good employment practice to all tax-funded employers.

It is re-assuring to see that Welfare Benefits have been accorded their own priority by the Working Group:

"A small subgroup of the Working Group was established to produce a paper on CFS/ME and the benefits system. This working paper was then submitted to the CMO in April 2000. Professor Donaldson formally copied the paper to the Chief Medical Advisor of the Department of Social Security to inform that Department's Working Group, which was established to review the benefits system for people with chronic illness." (1.3)

Yet, how useful it would have been, for patients and carers, to have had this information summarised in the main report, and attached in full as another Appendix.

The journey through public service provision is often a daunting one that can leave individuals feeling powerless and damaged by the very system that is supposed to support them. The experiences of patients in the health service, service users in local authorities, and claimants in the welfare benefits system, continually highlight the need for more independent advocacy services to ensure that people receive the services and support to which they are entitled, and to receive them with their dignity intact. Unfortunately, the Working Group report barely addresses these issues.

3.9 Words are not action - will anything actually change?

Though the CMO report makes some heroic suggestions for improving the quality of the patient-provider interaction, insisting that "Patients can be empowered to act as partners in care" (4.0), it carries with it no executive power, no funding to stimulate change, and no commitment to reconvene at a future date to report on the changes which may have been implemented. This severely limits its usefulness.

Given this, several aspects of the situation on the ground make significant beneficial change unlikely in the short to medium term. First, a significant number of patients have not been well served by healthcare professionals. For example, section 3.5 (above) has shown that 61% of the most severely ill patients report waiting more than 2 years for appropriate advice and symptomatic help (there is no `treatment'). Although the Working Group is, in places, upbeat about the prognosis for patients with the illness, e.g., "The likelihood is that most patients will show some degree of improvement over time, especially with treatment... Gradually progressive deterioration is unusual in CFS/ME." (1.4.3), research studies on prognosis (e.g., Bombardier & Buchwald, 1995; Hines et al, 1993; Vercoulen et al, 1996) are less optimistic: around one third of sufferers regain up to 80% of their premorbid levels, but the remainder experience remissions and relapses, albeit at a `stable' level of functioning, often for years, or steadily deteriorate into severe incapacity and dependency.

"The report carries no executive power, funding, or commitment to follow up its recommendations."

This often occurs without any support or significant help from healthcare professionals: without teeth, the recommendations of the Working Group are unlikely to alter this unfortunate picture. Again, research reports have shown that a substantial roportion of GPs do not believe they are dealing with a distinct clinical entity when they see CFS/ME patients (Stevens et al, 2000; Ho Yen & McNamara, 1991). A MERGE in-house analysis found that 20% of patients reported changing GP at some stage during their illness, and that roughly one third found their GP's attitude to be at best non-committal and sometimes openly sceptical. In a recent development, "Chronic fatigue syndrome/Myalgic encephalomyelitis" was voted by 12.6% (72/570) of respondents to the website of the British Medical Journal as one condition that best fitted the description of a "nondisease" (BMJ 2002; 324: 7334, data supplement). Published items of in-house literature for doctors perhaps clearly reveal how some feel about these patients:

"Never let patients know you think ME doesn't exist and is a disease of malingerers. Never advise an ME patient to make a review appointment. At the end of the consultation, I say goodbye, not au revoir." Dr Mary Church (a member of the BMA Medical Ethics Committee) quoted in the GP magazine, Pulse. 20th October 2001.

"Question: What would be your initial response to a patient presenting with a self-diagnosis of ME? Possible answers:

a) Are you by any chance a teacher?
b) Thank you for making the effort to come along. I am sure we will be able to help.
c) For God's sake, pull yourself together, you piece of pond life.
d) Well, lets just explore that, shall we?"

Dr Tony Copperfield (a pseudonym), described as being a GP in Essex, in Doctor magazine, 2000.
(The `correct' answer was (c).)

"I have every symptom of the disease. The pathogenesis of ME is increasing workload; being undervalued socially, politically, and financially; and being abused by those I try to help. You just have a get on with life." Name and address withheld. Doctor magazine. 18th March 1995.

"If they really insist on a physical diagnosis tell them chronic fatigue syndrome is a complex disorder in which multiple biopsychosocial factors are mediated via the anterior hypothalamus - in other words, it's all in the mind." Dr Douglas Carnall, Bluffer's Guide: Chronic Fatigue. 12th January 1995.

"ME is usually (in my surgery, always) a self-diagnosis: somebody comes in, sits down and says, `I think I've got ME, doc'. This is what we in general practice call a `heart-sink encounter'." Dr Michael Fitzpatrick, "The making of a new disease". The Guardian 7th February 2002.

These quotes sit uneasily with the aspiration in the CMO report:

"The doctor's job should be to `heal sometimes, relieve often, comfort always'." (4.1.2)

"Positive attitudes and cooperation based on mutual respect seem likely to produce best outcomes." (3.3.3)

Rather than promoting a culture in which CFS/ME patients and their carers can begin to be `partners in care', a more likely outcome is the imposition of cognitive behavioural therapy and graded exercise therapy on some patients due to the media spin surrounding the report's conclusions. Patients should remember, however, that doctors have a duty to prescribe cognitive-behavioural interventions or exercise regimens with as much care as they prescribe drugs, and that CFS/ME patients who experience adverse effects or relapse - as indicated by patient reports of graded exercise therapy - may well be entitled to redress though the courts.

page6 Cont tomorrow Feb 5

MERGE is the Myalgic Encephalomyelitis Research Group for Education and Support MERGE: the Myalgic Encephalomyelitis Research Group for Education and Support

Posted by peter200015 at 1:15 PM EAST
Updated: Thursday, 5 February 2004 6:17 PM EAST
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Tuesday, 3 February 2004
ME/CFIDS/CFS/FM Unhelpful Counsel
Continued from Feb 2
Unhelpful Counsel

3. Limitations of the report

The positive aspects of the report listed in Section 2 concern the recognition of ME and the need for illness management in a variety of forms. However, the report has limitations. Some, such as the constrained remit, are obvious, but others are apparent only to those au fait with the issues, whether the research evidence or the deliberations of the Working Party.

3.1 Constrained remit
The report describes its own remit clearly:

"To review management and practice in the field of CFS/ME with the aim of providing best practice guidance for professionals, patients, and carers, to improve the quality of care and treatment for people with CFS/ME, in particular to: develop good clinical practice guidance on the healthcare management of CFS/ME for NHS professionals, using best available evidence; make recommendations for further research into the care and treatment of people with CFS/ME; identify areas which might require further work and make recommendations to CMO." (1.1)

Given the controversy surrounding the illness, this remit seems primarily designed to contain and manage the clinical problem. By concentrating principally on management and `guidance', the report has ensured that the focus is on containment and coping, rather than on addressing the clinical conundrum of causation. Though the cause of CFS/ME has yet to be elucidated, it is important to consider the various possibilities at length within the context of management options. The narrow focus also neatly sidesteps the problem of the preference of some clinicians for the umbrella term `CFS', obscuring specific diagnosis and possibly, in the long run, influencing management and practice for the worse.

The result is that the Working Group has taken three years to uncover the obvious - that, for a variety of reasons, the available `management strategies' are cognitive behavioural therapy and graded exercise therapy, both with a very weak and rudimentary evidence base (Whiting et al, 2001), and `pacing', which is little more than a commonsense approach to physiological limitation. Welcome though recognition of the illness is, we should not forget that for patients and carers little if anything has changed, or probably will change, as a consequence of developing `best practice guidance'.

3.2 Unbalanced composition of the Working Group

The final Working Group consisted of Professor Allen Hutchinson (Chair), Dept. of Public Health, Sheffield; Professor Anthony J Pinching (Deputy Chair), Dept. of Human Science and Medical Ethics, St Bartholomew's Hospital, London; Dr Tim Chambers (Chair of the Children's sub-group), Southmead Hospital, Bristol; and three groups - the Key Group (responsible for surveying the evidence, developing the main report, and agreeing the final recommendations to the CMO), the Children's and Young People's Group, and the Reference Group (with an ad hoc advisory/consultative role). The Report also concedes the input of un-named others not included in the above groups. The breakdown of the Working Group by professional interest is shown in Table 1 below. Due to a misprint in the final CMO report (page 72), the members of the Children's Group are designated as "Key Group Observers", though the existence of the Children's Group is mentioned at several points in the text. Table 1, however, shows the composition of both groups.

Table 1. Composition of the Working Group - excluding the Chair and Deputy Chair - by professional interest at September 2001
Key groupChildren's group
Patient representatives3 (2*)1
Representatives of ME associations34
Psychiatrists/psychologists3 (3*)1 (1*)
Public health specialists2 (1*)0
Nurses 01

(*In parentheses are the numbers of this professional interest group who refused to endorse the final Working Group report in January 2002. Four of these were professionals with an affiliation to psychiatry/psychology, one was a consultant in Public Health Medicine, and two were patient representatives.)

Given the range of clinical signs and symptoms exhibited by CFS/ME patients, the volume of published research evidence on pathophysiological mechanisms, and a large body of professional opinion supporting a `biomedical' model of the illness, it seems negligent that three of the clinicians on the Key Group should have been psychiatrists/psychologists and that four should have been co-authors of scientific papers supporting the use of biopsychosocial interventions for CFS/ME. Interestingly, the Deputy Chair of the Working Group in a recent paper (Pinching, 2000) advocated the use of the management strategies - cognitive behavioural therapy and graded exercise - finally identified as the therapeutic interventions of choice by the Working Group. The composition of the Children's Group was less skewed towards the psychiatric or the psychological, both of which are generally recognised to be far less appropriate models in children.

In total, six members (46%) of the Key Group refused to endorse the final report, a remarkable attrition rate for a Working Group reporting to the Chief Medical Officer of England. The four professional resigners from the Key Group argued that the report paid too little attention to biopsychosocial aspects (Clark et al, 2002). In Hospital Doctor, 17th Jan 2002, one of them, Dr Alison Round, was reported as saying that the report neglected the "biopsychosocial" aspects of the illness. Another, Dr Peter White, was reported to say, "All the evidence taken together suggests that the condition is biopsychosocial - both physical and mental factors are involved." This kerfuffle has not been universally welcomed: in a recent debate on CFS/ME in the House of Lords, Lord Clement-Jones said, "Some recent articles written by doctors in the wake of the report are absolutely disgraceful and ignorant. I feel strongly about some of those reactive reports" (Hansard, 2002). Patients and carers can only speculate on the kind of report that might have emerged (and the different emphases that might have been placed on psychological strategies) if these professionals had `resigned' at the beginning of the process rather than at the end. As a patient said wistfully, "After all that... it's like cuckoos leaving their trademarks but not their signatures."

3.3 Problem of diagnosis and use of the composite term CFS/ME

Terminology is the `hot' issue in ME and CFS: it energises the debate between patients and healthcare professionals, particularly psychiatrists. It also impacts on patient management and clinical practice since the results of clinical trials are determined by entrance criteria used to recruit patients to them.
The issue can be simply put. The original case description of the illness, `ME' (Acheson, 1959; Dowsett et al, 1990) described a condition, commonly of infectious onset, characterised by:
Exercise-induced fatigue precipitated by trivial exertion (physical or mental). Neurological disturbance, especially of cognitive, autonomic, and sensory functions. This could include impairment of short-term memory and loss of powers of concentration, usually coupled with emotional lability, nominal dysphasia, disturbed sleep patterns, dysequilibrium and/or tinnitus. An extended and relapsing course with fluctuation of symptoms, usually precipitated by either physical or mental exercise; typically, the symptoms vary capriciously from hour-to-hour and day-to-day with varying involvement of the cardiac, gastro-intestinal, and lymphoid systems.

Since the late 1980s, however, the medical profession has been urged by some of its members to adopt the term Chronic Fatigue Syndrome (CFS), a more wide-ranging diagnostic category which includes patients whose dominant symptom is medically unexplained, on-going, or chronic fatigue (in conjunction with several other physical or psychological symptoms) who would not necessarily fulfil the criteria for ME.

There are now several definitions of CFS. In the USA, the 1994 CDC case-definition of CFS is currently utilised (Fukuda et al, 1994), supplanting its predecessor, the 1988 CDC criteria, and has similarities with - but is not identical to - the classical description of ME. However, in the UK, a frequently-used case definition is the `Oxford criteria' which includes patients with no physical signs and inadvertently selects subgroups of patients with high levels of psychiatric diagnoses (Katon & Russo, 1992; Freiberg, 1999). These definitions have been used to recruit to randomised clinical trials, including some of the trials of `psychological' interventions, cognitive behavioural therapy, and graded exercise therapy, which form the basis of the management strategies uncovered by the Working Group report. Since the adoption of a particular case-definition of CFS will greatly influence the outcome of particular studies, it is perhaps no surprise that psychiatric research groups researching biopsychosocial strategies in these patients should find some encouraging results. However, as many patients and carers in CFS/ME support groups in the UK invariably point out:

Fatigue is not their primary problem: musculoskeletal pain and post-exertional myalgia along with other physical signs are far more prominent, corresponding more closely to the classical definition of ME. The World Health Organisation International Classification of Diseases (ICD) has, since 1969, classified ME separately as a neurological problem (ICD 10 93.3), with `CFS' incorporated into the current ICD as a sometime synonym for ME. The chronic fatigue states per se are listed under mental and behavioural disorders (F 48.0), a category which specifically excludes ME/PVFS/CFS.

For these reasons, many CFS/ME patients - particularly the most severely affected - resent being provided with non-curative coping strategies, such as cognitive behavioural therapy, by healthcare workers who have no interest in their particular symptom complex. In this, they are supported by a growing number of experts who consider that there is a strong, perhaps overwhelming, case for unpacking the term `CFS' and reclassifying and renaming in accordance with more specific clinical criteria (De Becker et al, 2001; Tan et al, 2002), such as the criteria for ME described above. The report alludes to the problem:
"The issue of subgroups or discrete entities within CFS/ME was the subject of much debate by the Working Group. We are conscious that some sectors strongly hold the view that the term ME defines a subgroup within CFS, or even a distinct condition. The Working Group accepts that some patients' presentation and symptoms align more closely to the original clinical description of ME." (3.4.1)

To complete its task, the Working Group side-stepped the issue:
"We recognise that no current terminology is satisfactory, so in line with our original terms of reference [MERGE emphasis] we have used the composite CFS/ME for the purposes of this report, acknowledging that CFS is widely used among clinicians and ME among patients and the community." (3.2)
"For how much longer will anomalies in nomenclature complicate and obscure clinical care?"

The issues surrounding the establishment of CFS as a diagnostic category, and the inaccurate and biased characterisations of CFS that have subsequently arisen, have been well reviewed by Jason et al (1997):

"Over the past ten years, a series of key decisions were made concerning the criteria for CFS diagnosis and the selection of psychiatric instruments, which scored CFS symptoms as medical or psychiatric problems. At least some of these decisions may have been formulated within a societal and political context in which CFS was assumed to be a psychologically determined problem (Manu et al. 1988). Many physicians and researchers believed that CFS was similar to neurasthenia and that CFS would eventually have a similar fate once people recognised that most patients with this disease were really suffering from a psychiatric illness. Psychiatrists and physicians have also regarded fatigue as one of the least important of presenting symptoms (Lewis & Wessely, 1992). These biases have been filtered to the media, which has portrayed CFS in simplistic and stereotypic ways... One major consequence is that many CFS patients feel dissatisfied with their medical care... and have gone outside traditional medicine to be treated for their illness...

"A significant complicating factor in understanding the dynamics of this illness is that there are probably different types of illnesses now contained within the CFS construct... We believe that it is crucial for CFS research to move beyond fuzzy recapitulations of the neurasthenia concept and clearly delineate precise criteria for diagnosing pure CFS and CFS that is comorbid with psychiatric disorders. It is also necessary to better differentiate CFS from other disorders which share some CFS symptoms but are not true CFS cases."

One of the most poignant sentences in the report is:

"The severely ill reflected strong loathing of the name CFS because fatigue is often not perceived to be their main problem; ME is a preferred term by many." (

For these and other patients, the question is how much longer anomalies in nomenclature will be allowed to complicate and obscure clinical care. Given that the term `CFS' most probably groups different kinds of patients under one umbrella, management recommendations are likely to be inadequate and probably misleading.

3.4 Choice and interpretation of best management strategies

It is important to realise that the Working Group was empowered to identify evidence for "management strategies" not treatments, since it is clear that none of the forty-four randomised clinical trials found and reviewed (Whiting et al, 2001) supplies convincing evidence of treatment efficacy for a specific symptom or condition. At first sight, the process of identification of `useful' management strategies appears clear:

"Where research evidence exists we have been guided by it. (1.0) ...We used a trident approach to review and synthesise three lines of evidence: research findings, patient reports, and clinical opinion... Members of the Working Group expressed widely differing opinions on the potential benefits and disadvantages of these approaches. However, we agreed that all could be considered as management options in line with general principles outlined here... The Working Group agreed that there is no cure for CFS/ME but identified three specific strategies as potentially beneficial in modifying the illness: graded exercise, cognitive behavioural therapy, and pacing." (4.4.2)

Though the report contains several caveats about all three `management strategies' - perhaps as a sop to the non-biopsychosocial opinion on the committee (i.e., patients and carers) - it is the choice of these which, in the end, provides justification for the existence of the Working Group and the money spent (including that provided by the Linbury Trust) on the CMO report. Yet how each of the three strategies was determined to be "potentially beneficial" is not as clear as it might appear. As regards the published evidence, the thorough review by Whiting et al (2001) state that it is very difficult to draw overall conclusions (from the forty-four randomised clinical trials) since very little information is available on baseline functioning. Most of the interventions were evaluated in only one or two studies, so the validity of generalising the findings is limited. Since there are few patient reports favouring cognitive behavioural therapy, and a sizeable proportion of patients feel that graded exercise therapy worsens their condition, the inference must be that the major recommendation for the use of cognitive behavioural therapy and graded exercise therapy was clinical opinion, the only other source of evidence left to the Working Group. If this is the case, then the professional composition of the Key Group was the crucial factor in determining the strength of recommendation for particular "potentially beneficial" management strategies.

It is also important to realise that research funding is critical to whether or not evidence is available. There are indications that psychiatric and psychological research groups conducting trials of cognitive behavioural therapy and graded exercise therapy have been particularly well-funded (Abbot & Spence, 2002); hence, the forty-four trials available for analysis by Whiting et al (2001). This funding bias is itself worthy of examination as it informs us that the research agenda in CFS/ME has been driven, in the main, by a relatively small number of clinicians with a professional interest in exploring biopsychosocial models of illness. These clinicians were proportionately well-represented within the Working Group.

3.4.1 Cognitive behavioural therapy

The issues surrounding the true usefulness of cognitive behavioural therapy for CFS/ME patients have been widely discussed (e.g. Lancet 2001; 358: 239-41) but can be summarised as follows:

Of the forty-four randomised clinical trials identified, only five involved some variant of cognitive behavioural therapy, and of these, three had a `positive' result and two a `negative' result. Two of these trials used the Oxford criteria which greatly limits the applicability of the findings as far as ME and CDC-defined `CFS' is concerned. Dropout rates were high - 40% in the active arm (vs. 20% in the control) of the flagship trial on cognitive behavioural therapy by Prins et al (2000). As Whiting et al (2001) state in their review: "Dropout rates may be an indication of the acceptability of an intervention" and "cognitive behavioural therapy may be acceptable to only a small number of patients, limiting generalisability."
As is the case with most clinical trials, the results cannot be extrapolated to apply to the most severely ill (up to 25% in CFS/ME), nor to children or young people. Both categories having been excluded from these trials.

While cognitive behavioural therapy most likely has some role in helping some patients to better cope with their symptoms until a cure is found, this role is limited (as it would be with cancer patients) and non-curative.

Cognitive behavioural therapy is expensive and, with such a variable outcome, the cost-benefit ratio is problematic.
As well as the limitations of the clinical trials in CFS/ME patients, there are doubts even among professionals about the specific efficacy of cognitive behavioural therapy. As a recent review commented:

"...the foundations on which it rests are not as secure as some of its proponents would have us believe." (Holmes, 2002).

"The foundations of cognitive behavioural therapy are not as secure as its proponents suggest."
Though the CMO report states that "application of a cognitive behavioural model to CFS/ME has been found successful in most patients in the trials" (, this bald statement is almost certainly untrue: of five randomised controlled trials, two were negative, dropouts were high, and some `improvements' were seen in the control groups, indicating that not all improvement can be ascribed to CBT. The same section of the report contains a remarkable statement:

"The Working Group accepts that appropriately administered cognitive behavioural therapy can improve functioning in most patients with CFS/ME who attend adult outpatient clinics." (

This is a masterful piece of drafting which skilfully suggests great benefits of cognitive behavioural therapy while leaving several exits in case of attack. What is "appropriately administered" cognitive behavioural therapy? What aspect of `functioning' is meant? How can the Working Group accept that `most' patients improve on the basis of the extrapolation of the results of three positive and two negative trials to the whole population of CFS/ME patients in the UK?

There are several quotations in the report which - probably unwittingly - go to the heart of the matter:

"Cognitive behavioural therapy for people with CFS/ME is currently unavailable or very difficult to obtain in much of the UK." (

"There was disagreement among clinicians as to the precise value and place of cognitive behavioural therapy, which partially reflected the varying models of the therapy and disease." (

"We also noted that misunderstanding, misplaced concern, and poor practice in this area could potentially undermine the beneficial application of this therapy or its principles in patients with CFS/ME." (

"In one patient-group survey, only 7% of respondents found the therapy [CBT] `helpful', compared with 26% who believed it made them `worse'. The remaining 67% reported `no change'." (

As these quotes help to illustrate, cognitive behavioural therapy is non-curative (Wessley, 2001); is expensive and time-consuming, and beyond the resources of Health Authorities to fund; has an irrecoverably poor reputation among ME patients, especially the severely ill whom it incenses; has been found helpful by only a small minority of patients surveyed; and requires skilled therapists who need the consent of malleable patients rather than irate unwilling ones. As a recent commentary in the British Medical Journal stated:

"Until the limitations of the evidence base for cognitive behavioural therapy are recognised, there is a risk that psychological treatments in the NHS will be guided by research that is not relevant to actual clinical practice and is less robust than is claimed." (Bolsover, 2002).

Or, as one patient has said, cognitive behavioural therapy is "not curative, not cheap, not accepted, and not the answer for everyone."

3.4.2 Graded exercise therapy

Graded exercise therapy was the other "potentially useful" therapy identified by the Working Group on the basis of the three positive clinical trials out of the forty-four identified. The limitations of these trials have been discussed in depth elsewhere (BMJ 1997; 315: 947 and electronic responses to BMJ 2001; 322: 387), but the main points can be summarised as follows:

The success of randomised controlled trials depends on strict comparability of control to treatment groups. In these trials there was not the same contact with the controls and patients, raising the possibility that factors other than treatment were involved in the "positive" outcome.

All three trials consisted of patients classified by the Oxford criterion which does not diagnose ME or the CDC-CFS criteria (Fukuda et al, 1994) exclusively. The weakly-positive trial results may reflect this bias, have little relevance to CFS/ME patients, and have no relevance to the large numbers of severely affected or young sufferers. Graded exercise therapy involves a patient-motivation component to encourage compliance with the exercise regimen. However, the true usefulness of such programs is by no means clear (Harland, 1999).

Its use is predicated on the belief that deconditioning is a factor in the perpetuation of illness in CFS/ME patients. However, there is good evidence that deconditioning is not a significant factor (Brazelmans, 2001; Van der Werf, 2000) and that it cannot account for delayed post-exertional symptoms or the documented changes in muscle metabolism (Lane et al, 1998; Lane, 2000).

None of these is successfully dealt with in the CMO report, though some limitations are alluded to:

"One key controversy that exists over graded exercise rests on whether the nature of the treatment is appropriate for the nature of the disease, at least in some individuals. Existing concerns from voluntary organisations and some clinicians include the belief that some patients may have a primary process that is not responsive to or could progress with graded exercise, and that some individuals are already functioning at or very near maximum levels of activity." (4.4.2)

"Voluntary organisations, as well as the Sounding Board events, note that graded exercise therapy can be effective in some individuals, but substantial concerns exist regarding the potential for harm." (

Fortunately, some hard evidence from patient surveys is shown in the Working Group's report, albeit in Annexe 3. This showed that of 1,214 patients using graded exercise therapy, 34% found it helpful but 50% (610 patients) reported that it made them worse. Graded exercise therapy had the greatest number of `worse' reports of any therapy.

Clearly, as a management strategy, graded exercise therapy has its limitations for CFS/ME patients:
"Best practice in this area indicates that the initial stages of any graded exercise programme should only be carried out by therapists (i.e., occupational therapists, physiotherapists, exercise physiologists, sports therapists, etc.) who have the necessary expertise to manage CFS/ME patients."
( At present, very few therapists are available with such expertise.

3.4.3 Pacing

In contrast with the two professionally-dictated interventions, pacing has been included as a `management strategy' in response to patient experience - an example (some might say) of patients voting with their feet. Pacing allows patients to choose their own acceptable level of activity in accord with their fluctuating symptoms. It accepts that in the rehabilitation of sufferers, rest and relaxation also have an important role to play (Shepherd, 2001). The report clearly states the rationale for pacing:

"Clinical wisdom suggests that management of limited energy and supervision of any increases in physical or mental activity are an essential part of ongoing care for individuals with CFS/ME." (4.4.2)

"A survey of more than 2,000 members of a voluntary organisation (Annexe 3, section 3) who were or had been severely unwell showed that 89% of group members found pacing `helpful'." (

While pacing is intuitively sensible, its status as a clinical management strategy chosen after three years of deliberation by a Working Group is debatable, and there is a lingering suspicion that it has been recommended by the Working Group only as a concession to patient-based opinion. Whether sufferers will be allowed by healthcare professionals to choose this "recommended" therapeutic strategy in preference to psychological strategies is an open question. Indeed, almost as soon as the Working Group's report was published, an item in the British Medical Journal commented: "The clinicians argued that the psychosocial side of the condition should have had greater emphasis and were concerned that `pacing'... was included as a form of treatment," and quoted one professional as saying that "...doctors would not accept pacing just because it was recommended in the report" (Eaton, 2002).

3.4.4 Conclusions about the choice of management strategies

The preamble to the CMO report was explicit in its aims:

"Throughout, we have aimed where possible to base our commentary and recommendations on the best quality evidence, and from a range that includes randomised controlled trials and clinical anecdote. In the absence of research evidence to inform many issues, the bulk of the report is derived from a synthesis of patients' and clinical experience. Where some data exist, albeit incomplete and not fully agreed, we considered the trident approach together with the likely resource implications to inform our conclusions." (1.3.3)

How far have these aims been achieved? By conventional standards of literature reviewing, formal evidence for the use of cognitive behavioural therapy, graded exercise therapy and pacing is rudimentary. The fact that a few more clinical trials exist for cognitive behavioural therapy and graded exercise therapy than for any other intervention merely reflects the funding support which the interventions attract in the UK (Abbot & Spence, 2002).
Patient evidence suggests that a small subgroup of patients might find either cognitive behavioural therapy or graded exercise therapy helpful (7% and 34% respectively) - possibly reflecting the heterogeneity of the patient grouping inside the construct `CFS' - but that a substantial proportion (93% or 66% of patient responders, respectively) either find them ineffective or harmful. Pacing is nothing more than a commonsense approach enforced on most patients by their circumstances, and can hardly be described as a therapeutic management strategy. To use an analogy, pacing could describe the ability of an amputee to hobble around in difficult circumstances:
a "therapeutic management strategy", however, might include a new prosthesis individually designed. Strangely, in a recondite section (but not in the easily-accessible overall conclusions) the report itself admits the truth:

"Review of the evidence highlights the lack of good quality research to support effectiveness of various therapies. Patient responses suggest that no approach is universally beneficial and that all can cause harm if applied incorrectly." (4.0)

Continued tomorrow Feb 4

MERGE is the Myalgic Encephalomyelitis Research Group for Education and Support MERGE is the Myalgic Encephalomyelitis Research Group for Education and Support

Posted by peter200015 at 11:25 PM EAST
Updated: Wednesday, 4 February 2004 1:31 PM EAST
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Monday, 2 February 2004
ME/CFIDS/CFS/FM Unhelpful Counsel Cont.
Continued from Feb 1

Unhelpful Counsel

2. Positive aspects of the report

Since the publication of the heavily-criticised 1996 Joint Royal Colleges report on CFS, there has been a black hole in the professional and public recognition of the illness. The CMO report advances current thinking in several key aspects.

2.1 Recognition of CFS/ME as an illness
The report gives an authoritative statement that CFS/ME is a real illness which requires professional help, and has particular problems owing to the controversy which surrounds it. It consolidates the acceptance of the disorder previously expressed by the Departments of Health and
Social Security and by the BMA as long ago as 1988:

"CFS/ME is a genuine illness and imposes a substantial burden on the health of the UK population. Improvement of health and social care for people affected by the condition is an urgent challenge." (1.0)

"Patients, their carers, and healthcare professionals encounter different levels and varying manifestations of disbelief and prejudice against people affected by the condition." (1.0)

"CFS/ME is a genuine illness. It should cease
to be a waste bucket for heart-sink patients"

2.2 Recognition that CFS/ME can be clinically diagnosed
The report makes it clear that CFS/ME can be clinically recognised for management purposes, and lists in Annex 6 the clinical assessment investigations that should be performed. These include:
Full clinical history
Physical examination
Mental health evaluation
Sleep evaluation
Basic screening tests, which can involve
Full blood count
C-reactive protein (CRP) concentration
Blood biochemistry tests including concentrations of creatinine, urea, electrolytes, calcium, phosphate, glucose, liver enzymes, and markers of thyroid function
Simple urine analysis
Other tests determined by history or examination

The diagnosis is based on the characteristic pattern of symptoms, once alternative diagnoses are excluded.

"Although the disorder is clinically recognisable, CFS/ME assumes many different clinical forms and is highly variable in severity and duration, but lacks specific disease markers."(3.0)

2.3 Importance of a positive diagnosis
The report stresses that CFS/ME should cease to be a waste bucket for `heart-sink' patients.

"A diagnosis of CFS/ME relies on the presence of a set of characteristic symptoms together with the exclusion of alternative diagnoses." (

"A positive diagnosis of CFS/ME is needed, rather than one of exclusion. Without a validated test for the illness, diagnosis is based on recognition of the typical symptom pattern together with exclusion of alternative conditions. Thus, a positive diagnosis can usually be made from clinical history, examination, and a few appropriate laboratory investigations, as in other chronic illnesses of uncertain nature." (4.2.1)

2.4 Need for action
The clear emphasis on the need for health and social care provision in CFS/ME is perhaps the most important thrust of the report.

"Appropriate management and service provision for patients with CFS/ME and their carers are urgent priorities." (4.0)

In the view of the report, `action' includes further research, especially concerning the severely affected.

"We suggest that the prevalence and impact of severe disease, the pathways to chronicity and to becoming severely affected, and strategies that would benefit such individuals urgently need further study." (4.4.1)

2.5 Estimation of prevalence and service need
Given the wide variation in estimates of prevalence - partly a function of differences in case definition - the report comes up with a sensible estimate:

"On the basis of a reasonable estimate of adult population prevalence of 0.4%, a general practice with a population of 10,000 patients is likely to have 30 to 40 patients with CFS/ME, about half of whom may need input from services. The proportion of the latter patients who are severely affected by the disease is thought to be up to 25%." (4.5.1)

2.6 Suggestions for best practice
At present, there are no guidelines on what clinicians should do with CFS/ME patients. The report has attempted to fill this gap.

"The incremental development of a locally based service, including provision of domiciliary care for severely affected patients, would significantly improve care for all patients with CFS/ME, but especially for this most disadvantaged of patient groups. The general components of such a service are: medical care, support for adjustment and coping, facilities for energy/activity management, and nursing and personal care." (4.5.2)

2.7 Instruction to clinicians on patient management
In contrast with sensational media reports about the benefits of cognitive behavioural therapy and graded exercise, the report is clear about the limitations of current management strategies:

"No management approach to CFS/ME has been found universally beneficial, and none can be considered a cure." (4.1.2)

Chapter 4 of the report details the general principles and some specific advice for management of the condition by GPs and healthcare professionals. Its key messages are important and are worth restating:

Initial professional responses to CFS/ME can have major impact on the patient and carers. Clinicians should listen to, understand, and help those affected to cope with the uncertainty surrounding the illness.
Early recognition with an authoritative, positive diagnosis is key to improving outcomes. Symptoms are diverse, but increased activity invariably worsens fatigue, malaise, and other symptoms with a characteristically delayed impact.
All patients need appropriate clinical evaluation and follow-up, ideally by a multidisciplinary team... The overall aim of management must be to optimise all aspects of care that could contribute to any natural recovery process... Patients can be empowered to act as partners in care.
Although care packages need to be individually tailored, where appropriate they should include visits from primary care teams, and assessment and provision of equipment practical assistance. (4.1.2)

2.8 Description of CFS/ME in children
The section of the report dealing with children and young people with CFS/ME is particularly well-written. There is a clear description of the impact of the illness on the child, the family, and the community. The development of an integrated and multidisciplinary package of services is recommended as a matter of urgency, and the statement of rights is particularly welcome:

"Children's rights are safeguarded by UN convention and need to be respected at all times by professionals and parents/carers. The rights to be heard, to have their views taken into account, to access quality medical treatment, and to be protected from abuse both by individuals and by systems need particular attention." (5.0)

2.9 Recommendations to healthcare professionals about benefit provision
The report encourages healthcare professionals to be sensitive about their role as facilitators of welfare provisions:

"Negotiations with insurance companies and the Department of Social Security about proportional and rehabilitation benefits and therapeutic work can improve outcomes, and health professionals have an important role to play by providing support and advice in these negotiations. The same level of understanding needs to be shown by medical advisors to insurance companies and the Benefits Agency about the condition, its natural course, prognosis, and range of available approaches to recovery." (4.4.5)

"It is not appropriate that participation in a particular treatment regimen is made an absolute condition for continuation of sickness/disability payments." (4.4.2)

"No management approach has been found universally beneficial."

2.10 Appropriate attitude for healthcare professionals
There are also some clear warnings for healthcare professionals:

"Healthcare professionals should adopt an understanding attitude and should not get into disputes with patients about what to call the illness, or about the belief that it doesn't exist." (4.1.1)

"Treatment should always be a collaboration between the patient and the clinician, and not something imposed. Good communication and a good therapeutic relationship can make an appreciable difference." (4.4)

"...our conclusion is that clinicians need to apply current knowledge despite the remaining uncertainty [about disease cause or process]; inaction due to ignorance or denial of the condition is not excusable." (4.1)

"CFS/ME should be treated in the same way as any other chronic illness of unknown aetiology. The aim is to develop a supportive relationship, and provide information and education to assist the patient, families, and carers towards self management with support." (4.1.2)

"All interventions need to be administered with thought and care, and in accordance with revised Department of Health recommendations on informed consent." (4.4.2)

2.11 Importance of patient consent for management strategies
The need for the active consent of patients to therapeutic interventions is stressed at various points in the report.

"The decision to recommend a particular approach is best guided by the individual's illness and circumstances."

"The content and development of any such approach should be mutually agreed by both clinician and patient and informed by up-to-date specialist knowledge."

"It is not appropriate that participation in a particular treatment regimen is made an absolute condition for continuation of sickness/disability payments." (4.4.2)

"Management strategies supervised by a therapist, including activity management, cognitive behavioural therapy, and so on, can be beneficial, provided that they are agreed and viewed as a partnership." (4.1.2)

2.12 Needs of the severest suffers
One welcome note in the report is the recognition of the particular needs of severest sufferers. While the Working Group chose not to highlight valid data collected by the 25% ME group, which represents the severest sufferers, in the final report, it nevertheless seems to have recognised the plight of these patients.

"A minority of those with CFS/ME remain permanently severely disabled and dependent on others... Current provision of services falls well below what is needed for the vast majority of severely and very severely affected patients... Yet, even if we lack easy solutions, professionals can still support, care, and provide for many patients' needs by reaching such patients in their homes, maintaining contact, and continually exploring potential options." (

"In general, this group is excluded from research, so they may not fulfil criteria used to test evidence-based approaches. For example, many comment on the inappropriateness of extreme exercise regimens that have been studied in less adversely affected patients... Care is an urgent challenge that must be addressed in appropriate and imaginative ways, drawing from service models applied to other severe chronic disabilities." (4.4.1)

"The Working Group is concerned that it is necessary to make these points [about severity and its consequences] for CFS/ME, when such considerations are self-evident and part of usual clinical practice for other disorders that are better recognised." (3.4.3)

"In many chronic illnesses, daily functioning, including mobility, cooking, cleaning, dressing, personal care, and social support, can be improved dramatically by sympathetic provision of appropriate practical assistance." (4.3.3)

"Inaction due to ignorance or denial is not excusable."

2.13 Voicing of patient and carer concerns
Use of patient voice throughout the report strengthens the narrative. They give voice to the patient concerns, and - importantly - justification to the antipathy towards health professionals felt by many people with CFS/ME. The chief points arising from the patient voices are poor recognition of CFS/ME by professionals, difficulties that arise over diagnosis, and lack of professional and public acceptance and acknowledgement.

"Participants felt that the widespread lack of understanding of the condition is not specific to clinicians but includes other healthcare and social care professionals. This lack of knowledge was identified by the majority of those consulted, together with a lack of communication and advice, especially in the early stages, on how to cope in general with long-term illness for families and sufferers." (2.2.2)

"There is evidence that some patients `fight' for referrals, and in general GPs are confused over where to refer patients... The overall experience of specialist and hospital services among participants was predominantly negative... Some patients find themselves in geographical `black holes' that lack specialist provision." (2.2.4)

"Severely ill are severely overlooked; just ignored and invisible... Some report that they want to believe doctors and feel `frightened to say no' or that they do not have the energy to disagree. Fears were also expressed over: being `branded' as a `difficult patient', losing benefits, letting people down, not trying, losing the love of the family, and being labelled as mentally ill." (

"Some carers were clearly distressed about being ignored by GPs, and some reported unpleasant behaviour." (2.3.4)

"A proportion of patients feel alienated from clinical professionals by early responses to their symptoms, illness experience, and disability." (3.5.2)

"People with CFS/ME frequently experience problems with accessing state benefits." (3.5.1)

2.14 Summary
The positive aspects of the report listed above represent an advance in terms of recognition of the illness and its consequences. Sufferers and their carers can now state, not only that CFS/ME is a genuine illness which can be clinically diagnosed, but that the elements of best practice and management have been sketched out and that inaction by healthcare professionals due to ignorance or denial of the condition is not excusable.

However, the report does not describe how or when change is to occur. It does not describe the cost implications, it does not call for directives to be issued to the various health agencies or professional bodies, and it does not propose any mechanism for checking that changes will be made. Crucially, it gives no indication that the illness will be looked at again in the medium to long term, to assess whether real, meaningful change has come about.

MERGE is the Myalgic Encephalomyelitis Research Group for Education and Support MERGE is the Myalgic Encephalomyelitis Research Group for Education and Support

Cont. tomorrow Feb 3

Posted by peter200015 at 11:26 PM EAST
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