Prof.Hooper -MRC Draft Report CFS/ME Research

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28 December 2002

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Response to the MRC Research Advisory Group (RAG) Draft

Document for Public Consultation on " CFS/ME " Research Strategy

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dated 17th December 2002

M Hooper 1 EP Marshall 2 M 2

Preface: On 14th January 2003 there is to be a meeting at The Royal

Society of Medicine entitled " Chronic fatigue syndrome and factitious

illness: interface between child psychiatric and paediatric services " .

[According to the Concise English Dictionary (Bloomsbury 2001),

" FACTITIOUS " means " contrived or insincere rather than genuine; not real

or natural but artificial or invented " ].

Speakers include Professor Elena Garralda (a psychiatrist and one of the

authors of the 1996 Joint Royal Colleges' report CR54 on " CFS " which in its

Summary directed that " No investigations should be performed to confirm

the diagnosis (as) revealed changes are rarely substantial " and which

dismissed ME, claiming at para 13.3 " Previous studies have counted

people with ME, but these studies reflect those who seek treatment rather

than those who suffer the symptoms " ); Dr Harvey Marcovitch (editor- in

-chief of The Archives of Disease in Childhood: in 1999 after transmission

of the BBC " Panorama " programme on ME which exposed the harrowing

stories of several families whose very sick children had been removed from

their home and locked away in " secure " psychiatric units, Marcovitch wrote

that the BBC had performed a hatchet job on one of the psychiatrists

involved for his use of 'active rehabilitation' as a treatment for chronic

fatigue syndrome and stated " it's about time the (medical) profession hit

back at those who are vilifying our colleagues " -- Diagnose and be damned:

BMJ 1999:319:1376); Dr White (who led the walk-out of psychiatrists

from the CMO's Working Group on " CFS/ME " because he felt there was

insufficient emphasis on psychiatric aspects in the final version of the

CMO's report) and Professor Sir Roy Meadow, Emeritus Professor of

Paediatrics and Child Health (known for his view that children with " ME "

have parents who suffer from Munchausen's Syndrome by proxy). For the

record, Munchausen's Syndrome is now known as " FII " , which stands for

" Fabricated and Induced Illness " .

Response to the MRC draft document

We welcome the acknowledgement by the MRC " CFS/ME " Research

Advisory Group (RAG) of the heterogeneity of the condition and the need for

future research. We support the urgent need for a clinically accurate case

definition, the need for carefully designed epidemiological studies and the

need for the severely affected to be included in appropriate future research.

We note the welcome inclusion of lay participation and hope this will include

liaison with independent local ME groups and not only with the two

prominent ME charities. However, it seems premature to agree with the

uncritical acceptance of the MRC's draft document as manifest by the

charity Action for ME: on 17th December 2002 The Scotsman carried an

item by Phil Hazelwood which quoted Dow (Press and Campaigns

Manager for Action for ME) as stating " As far as we're concerned, the MRC

has fulfilled its side of the bargain " . Others, including ourselves, are

of the view that there must surely be concerns about the following

paragraphs in the draft document, which exemplify a stance that is

distinctly disadvantageous (and even actively harmful) to those with

myalgic encephalomyelitis (ME).

paragraph 3: (Summary) " The MRC CFS/ME Research Advisory Group

fully endorses the conclusion of the Report of the CMO's Independent

Working Group… "

The CMO's Working Group on " CFS/ME " was not in any way " independent " :

it was financially supported by the Linbury Trust of the Sainsbury

(supermarket) family (indeed, the MRC itself is often now funded by

partnership schemes with industry). Since 1991, the Linbury Trust has

provided over £4 million, mostly to adherents of the " Wessely School " . to

fund almost exclusively psychiatric research into chronic fatigue (which is

then referred to as the chronic fatigue syndrome). The Linbury Trust states

that it has " funded the great bulk of CFS research conducted in the UK " ; that

" we can state confidently that CFS is not an inflammation of brain or a

muscle disease " and that " numerous psychological disturbances have been

identified " . Concerning " treatment " , the Linbury Trust approach states

that it " deals only with graded exercise, cognitive behaviour therapy and

antidepressants " . (1)

The views of members of The Linbury Trust about " CFS " are well-known,

particularly their claim that " Before the Linbury Trust initiative, much

of the knowledge base in this area was erroneous " (2), thereby

summarily dismissing 60 years of documented medical history of

myalgic encephalomyelitis (ME) and its recorded signs and symptoms.

The Linbury Trust established a Scientific Advisory Panel on " CFS " , one

member being Professor Alan McGregor of Kings College Hospital,

London, who has co-authored papers on " CFS " with Simon Wessely (3), (4)

and who is now one of the members of the MRC " CFS/ME " Research

Advisory Group. Another member of the MRC Group is Professor Philip

Cowen (psychopharmacologist), who has co-authored on " CFS " with

psychiatrist Sharpe (5) and who contributed a chapter on " CFS " in

one of the Linbury Trust publications entitled " Abnormalities of Mood " . (2)

There has been considerable concern expressed by the ME community that

the Office of Science and Technology and the MRC may be only too eager

to accept advice from these " fresh to the field of CFS/ME " and

" independent " members of the MRC " CFS/ME " Research Advisory Group

(including those who have been funded by the Linbury Trust) that " CFS/ME "

is, after all, nothing more than a chronic " fatigue syndrome " and that the

MRC will recommend the direction of future studies accordingly. If they are

not to lose credibility, how could Linbury Trust members and beneficiaries

advise otherwise?

It may be salutary to reflect that since 1996, Sainsbury has donated

£7 million to the Labour Party; in 1998 he resigned as Chairman of his

family's supermarket chain to become Labour Minister for Science and is

now Lord Sainsbury of Turville (not to be confused with his brother , now

Lord Sainsbury of Preston Candover). This made Sainsbury the

Parliamentary Under-Secretary of State for Science and Innovation, giving

him responsibility for the Office of Science and Technology, together with

the chemical and biotechnology industries as well as all the Research

Councils, including the MRC (where psychiatrist Simon Wessely is a

member of various boards, including, perhaps significantly, the Health

Services and Public Health Research Board -- see comments on

paragraph 13 below --; Neurosciences and Mental Health Group and the

Monitoring and Evaluating Group (MESG). Of possible relevance in the

overall context, it may be noted that Wessely's wife Dr Garrada is

Senior Policy Adviser to the Department of Health).

The Office of Science and Technology monitors all Government funding of

research and controls policy on the direction of that research. It has

already been officially confirmed that it is " policy " which determines the

research which is funded: " The Department funds research to support

policy " . (6) This seems not to accord with the MRC's often-repeated

assertion that funding depends entirely on the satisfactory calibre of the

submitted research proposals.

paragraph 6: " A strategy is proposed which reflects the current state of

knowledge of CFS/ME and which aims to provide a rational framework for

advancing the understanding of the illness and its management "

For the reasons set out re paragraphs 35 and 36 below, this claim is

meaningless without knowledge of which of the two interpretations of the

term " CFS " is being used.

paragraph 10: " the MRC CFS/ME Research Advisory group considers that

the research community should be encouraged to develop high quality

research proposals…that are amenable for study at the present time "

What is meant by " amenable for study at the present time " ? This raises

concerns, given that one prominent " CFS/ME " investigator holds the view

that people should not be too distracted by investigations and ideas which

are on the borders of our present knowledge: (7) surely advances in medical

science are achieved by intellectual rigour and commitment and by

resolutely pushing beyond the borders of current knowledge. As the

Countess of Mar has pointed out: " Why should the doctor and the patient

accept the limitations of scientific knowledge? I ask whether we would have

been able to eradicate smallpox, prevent the infectious diseases of

childhood or establish the link between asbestos and lung disease if the

medical practitioners of the time had accepted the limitations of scientific

knowledge " (8)

paragraph 11: " studies investigating…causal pathways and

mechanisms…would not have…immediate impact on increasing

understanding of CFS/ME "

paragraph 12: " the MRC CFS/ME Research Advisory Group considers it is

appropriate to explore potential interventions for CFS/ME in the absence of

knowledge of causation or pathogenesis "

These two paragraphs seem to echo the Linbury Trust view (written by

Simon Wessely) that " It is usual to try to discover the cause of an illness

before thinking about treatment (but) some illnesses are treated without

knowledge of the cause…examples include chronic fatigue syndrome " (2).

(See also paragraph 82 below)

paragraph 13: " Given the present difficulties in identifying priorities for

health services research in CFS/ME, it is not clear whether it is appropriate

to make (such research) a priority at this time "

Have the MRC " CFS/ME " Research Advisory Group members any intention

or plans to visit any of the severely affected in their homes in order to

focus their collective mind about what ought to be a health services

research priority? As noted above, Simon Wessely is a member of the

Health Services Research board at the MRC and in 15 years of his

extensive publications he has never included those severely affected by

ME/ ICD-CFS in his studies of his own definition of " CFS " . With such a

precedent, is it likely to be the case that, despite lip-service to the plight

of the severely affected in this draft document, the severely affected will

turn out not to be a priority, and their suffering will yet again be deemed

" inappropriate " and therefore ignored?

paragraph 14: " It is essential that the researcher-funder-lay partnership is

nutured…(we) consider that there is a key role for the patient organisations

to help attract participants to research "

We agree that there is a key role for lay participation, but not simply as a

means of producing participants for research purposes.

What is needed is participation of the patient as expert: this should be

fully recognised in the way now promoted by the Department of Health

in its booklet " The Expert Patient: A New Approach to Chronic Disease

Management for the 21st Century " (Department of Health, September

2001).

It is important that lay participation should be at a more inclusive level

than was the case with the Chief Medical Officer's Report of January

2002 and that participation should involve individual patients and local

groups of affected patients who are not necessarily associated with the

ME Association or with Action for ME but whose voice needs to be heard.

It is vital that the best interests and concerns of such people are

addressed regarding important areas for research, as expressed in the

Appendix to the Summary Report on MRC Consultation Questionnaire

(see below).

paragraph 24: " the MRC agreed to convene a CFS/ME Research Advisory

Group made up of individuals who were not active in the CFS/ME field "

See comments re paragraph 3 above.

The original Briefing given at the All-Party Parliamentary Group on ME by Dr

, Director of the MRC Research Management Group, stated

that the " CFS/ME " Group " comprised leading experts from various fields

who did not previously specialise in CFS/ME, because since this was 'such

a broad area, it was felt important to get a wide range of

specialities' and to have an independent and fresh look at the

issue " (9)

In response to written representations to Professor Sir Radda

(Chief Executive of the MRC) arising as a result of the MRC's claim that the

panel of experts appointed to the " CFS/ME " Research Advisory Group were

all " independent " and " fresh " to the subject of " CFS/ME " , Radda was

compelled to concede that this was not in fact the case: his reply was

somewhat curious: " We are aware of Prof McGregor's involvement with the

Linbury Trust. You cite papers from some years ago in which he is a

co-author…..The inclusion of Profs McGregor and Cowen is consistent with

MRC's intention to select the working group from experts in various fields

who do not specialise in CFS/ME " (10)

paragraph 27: " …the MRC CFS/ME Research Advisory Group did not

consider the issue of service provision as this area was not within its role "

Research into service provision for those with ME/ICD-CFS is important

and necessary. Whilst there is an obvious distinction between medical

research and provision of care for those whose disorder is being

researched, this admission in paragraph 27 seems to be a worrying echo of

the remit of the CMO's Working Group on " CFS/ME " , which was expediently

limited to looking only at " management " of ME and CFS. Seemingly the

remit of the MRC Research Advisory Group excludes consideration relating

to the care (including respite care) or any other NHS service provision for a

UK population of at least 0.2% - 0.4%, which is 120,000 to 240,000 sick

people (prevalence statistics taken from the CMO's Report on " CFS/ME " of

January 2002), of whom at least 25% (ie. 30,000 - 60,000) are severely

affected and are bed- or housebound.

By comparison, the Multiple Sclerosis Society states that there are 85,000

sufferers of MS in the UK.

paragraph 35: " the MRC CFS/ME Research Advisory Group did not revisit

this topic (of terminology) "

Why not? Terminology lies at the very heart of this issue and requires to be

addressed with diligence, otherwise there will be no real progress resulting

from the MRC Research Advisory Group. Currently, due to the ambiguity of

the chosen terminology, only the authors of both the CMO's Report on

" CFS/ME " and the current draft document from the MRC have any idea of

the patient population they are talking about.

The essence of this on-going confusion concerns the use of the combined

term " CFS/ME " , given that " CFS " means different things to different people.

To the international research community, CFS is one of the names by which

ME has come to be known and as such is the term used when referring to

the disorder, but to the psychiatrists and adherents of the Wessely School,

" CFS " means a somatoform (psychiatric) disorder in which personality style,

suggestibility, depressed mood, avoidance of exercise, aberrant illness

beliefs and dysfunctional behaviour are central, constituting a functional

somatic syndrome which is amenable to behavioural modification regimes.

This dichotomy has been summarised by Fred Friedberg, Clinical Professor

in the Department of Psychiatry at the State University of New York:

" Descriptive studies of CFS patients in England, the US and Australia

suggest that the CFS population studied in England shows substantial

similarities to depression, somatization and phobic patients, while the US

and Australian research samples more closely resemble fatiguing

neurological illnesses " . (11) Thus, the term " CFS/ME " as used in the MRC

document means whatever the reader interprets it to mean, and is therefore

meaningless.

How can sound research strategies be produced by the MRC Group on the

basis of the combined term " CFS/ME " , when there are two differing

interpretations of the term " CFS " ? Is this obfuscation acceptable to the

MRC?

We once again ask that care be taken to clarify the correct situation, which

is that ME / ICD-CFS is a formally classified disorder of the nervous system

(ICD10- G93.3, WHO:1992) but that syndromes of chronic fatigue are

formally classified as " Mental and Behavioural " disorders (ICD10- F48.0

WHO:1992), a category from which ME / ICD-CFS is expressly excluded.

Without understanding, acceptance and exposition of this clear distinction,

and by continuing to equate one specific syndrome with another syndrome

which does not have the same features, the MRC " CFS/ME " Research

Advisory Group perpetuates a grave disservice both to those who suffer

from ME / ICD-CFS and to medical science itself.

It is scientifically unacceptable that one name should refer to two different

case definitions, each of which having different symptom profiles.

paragraph 36: " There are separate entries in the World Health

Organisation's International Classification of Diseases (ICD-10) for " chronic

fatigue syndrome " and " myalgic encephalomyelitis "

See comments re paragraph 35 above. This statement in paragraph 36 is

erroneous (and can readily be shown to be erroneous) but it echoes the

same obfuscation made in the CMO's Report of January 2002: even though

this same error was pointed out to the authors of that report many times

before the final version was published, clarification was not addressed.

Given the number and nature of the documents known to have been sent to

the MRC for the attention of the ME and CFS Research Advisory Group, it is

not credible to assume that the error about ICD classification is a simple

mistake or that the members of the Group are unaware of the correct ICD

classification.

The ignoring of the evidence on this issue must thus be seen as deliberate.

It would certainly be in accordance with countless attempts to eradicate ME

/ICD-CFS and to subsume this distinct disorder within the undifferentiated

term " CFS " . The most blatant unauthorised re-classification of ME from a

neurological disorder to a psychiatric disorder is to be found in Wessely's

contribution to the WHO Guide to Mental Health in Primary Care (November

2000), which states about his own version of " CFS " that " It is often known

as 'ME' (and therefore, according to the Guide's title, by definition ME

becomes a " mental " disorder). As members of the UK WHO Collaborating

Centre, Wessely et al were perfectly entitled to use the WHO imprimatur, but

they did so apparently without such a change of classification having been

approved by the World Health Assembly or by the WHO; moreover, the

WHO has confirmed that it has no plans to change the classification of ME /

ICD-CFS and that there is a " clear distinction " between ME / ICD-CFS on

the one hand and syndromes of chronic fatigue on the other.

Notwithstanding, the pervasive re-classification " policy " from neurological to

psychiatric was again presented as a fait-accompli in January 2002 in a

document from the Royal College of Paediatricians and Child Health

entitled " The Next Ten Years: Educating Paediatricians for New Roles in the

21st Century " . This is a joint training project with the Royal College of

Psychiatrists: a project director (Dr Quentin Spender, Senior Lecturer and

Consultant in Child and Adolescent Psychiatry at St 's and

Chichester) was appointed, whose job is to liase with psychiatrists about the

most common mental health disorders of childhood. On page 30, under a

heading " Support for children with mental health problems " is to be found

" chronic fatigue syndrome " (along with substance abuse).

Not to be overlooked in the game of re-classification is the publication by

the Royal College of Psychiatrists (2nd edition: October 2001) of their Fact

Sheets entitled " Mental Health and Growing Up: Fact Sheets for parents,

teachers and young people " Fact sheet 32 covers " medically unexplained

physical symptoms " and includes chronic fatigue syndrome. Fact sheet 33

is called " Chronic Fatigue Syndrome - helping your child to get better " and it

talks about " tiredness " and states that symptoms are made worse by

" worries " and by " emotional problems " . The fact sheets give the

internationally discredited Joint Royal Colleges' Report on CFS (14) as a

source of further information.

The determination by psychiatrists of the Wessely School to re-classify

ME/ICD-CFS as psychiatric is formidable and unceasing: it is therefore

most unlikely that there will be a change of direction on the part of the MRC.

Given the meeting which is to take place at the RSM on 14th January 2003

(referred to at the beginning of these comments), it seems clear that, in

continued defiance of the biomedical evidence, " policy " will not change.

Of potential significance is the fact that American researchers have

demonstrated that in ME/ICD-CFS, a particular pathway in the body which is

affected by viruses is also affected by chemicals (12). Is the endless

insistence that " CFS " is a psychiatric disorder in any way connected with the

fact that the incidence of ME/ICD-CFS is known to be increasing

alarmingly? It is certainly the case that some doctors who have been funded

by sources with links to the same industry that manufactures the chemicals

which may be contributing to the rise in incidence are those who most

persistently argue against an organic pathoaetiology for ME / ICD-CFS. If

influential doctors can succeed in portraying ME as non-existent and " CFS "

as psychiatric in origin, then the chemical / pharmaceutical companies and

the governments who granted them product licences would not be at risk of

being accountable, should there turn out to be a provable link with the

synergistic effects of so many chemicals, daily exposure to which is now

unavoidable.

paragraph 47: " An integrated approach to determining causal pathways is

needed. It could ombine…functional (and) behavioural approaches. There

is undoubted benefit to employing a multidisciplinary approach to research

on CFS/ME, where experience and expertise from appropriate disciplines

can be brought together "

Why is it necessary to emphasise " behavioural " approaches to research

strategies for

ME / ICD-CFS (a neurological disorder which the current Chief Medical

Officer himself said on 11th January 2002 on BBC News should be classed

as a chronic condition with long term effects on health, alongside other

illnesses such as multiple sclerosis and motor neurone disease)? The use

of specific terms such as " integrated approach " in which " behavioural "

aspects feature clearly conveys to experienced NHS personnel (who are

trained to understand the implied meaning of such terms) the preferred

direction of approach.

Equally, the use of the term " multidisciplinary approach " signifies to the

medical establishment that a disorder has a psychiatric component, whilst

" expertise from appropriate disciplines " unmistakably signifies that input

and control by psychiatrists is necessary.

paragraph 48: " Predisposing factors included gender, personality (and)

previous mood disorder…thus reported abnormalities may not reflect a true

causal association "

The implications of this paragraph are unmistakable. With regard to ME /

ICD-CFS, they are incorrect and need to be robustly challenged. Nowhere

in the " true " ME literature is such a statement supported.

paragraph 49: " Many reported findings in the area of pathophysiology are

not published in the peer-reviewed literature, or are not well

described…..the lack of methodological rigour and independent replication

mean that many of these claims find little support from the wider medical

community, but may have strong currency among some patients and

practitioners "

It appears that the MRC " CFS/ME " Research Advisory Group members are

unacquainted with what has been published on ME/ICD-CFS in international

journals, (including peer-reviewed and high-impact factor journals), for

example The New England Journal of Medicine; JAMA (Journal of the

American Medical Association); ls of Internal Medicine, Reviews of

Infectious Diseases; Biological Psychiatry; Clinical Infectious Diseases;

Archives of Internal Medicine; CRC Critical Reviews in Neurobiology;

Journal of The Royal Society of Medicine; European Neurology, Biologist;

Postgraduate Medical Journal, Quarterly Journal of Medicine; Journal of the

Royal College of General Practitioners; Journal of Neurology, Neurosurgery

and Psychiatry; Journal of Infection; Infectious Diseases in Clinical

Practice; Journal of Psychiatric Research; Annual Reviews in Medicine;

American Journal of Medical Science; Journal of Investigative Medicine;

Journal of Clinical Pathology; Journal of Psychosomatic Research; Journal

of Clinical Endocrinology; Current Therapy in Endocrinology and

Metabolism; Proceedings of the Royal College of Physicians of Edinburgh;

ls of the New York Academy of Sciences; Acta Neurol Scand:

Psychoneuroendocrinology; Clinical Autonomic Research; Applied

Neuropsychology; American Journal of Roentgenology; Psychiatric ls;

Journal of Virological Methods; Journal of General Virology; Journal of

Medicine; Journal of Medical Virology; Immunopharmacology &

Immunotoxicology; Journal of Clinical Virology; Journal of Immunology;

International Archives of Allergy and Applied Immunology; Journal of Clinical

Microbiology; Clinical Experimental immunology; Journal of Clinical

Investigation; Clinical Immunology and Immunopathology; Clinical and

Diagnostic Laboratory Immunology; ls of Allergy; Journal of Allergy and

Clinical Immunology; European Journal of Medical Research; Toxicology;

Clinical Physiology; Nuclear Medicine Communications; Journal of the

Neurological Sciences; International Journal of Neuroscience; Journal of

Virological Methods; Archives of Neurology; Journal of Clinical and

Experimental Neuropsychology; International Journal of Molecular Medicine;

British Journal of Clinical Psychology; Arthritis and Rheumatism; Seminars

in Arthritis and Rheumatism; Journal of Rheumatology; European Journal of

Medical Research; Advances in Neuroimmunology; Angiology. (This list is

not comprehensive but merely illustrative).

In addition, there is the Journal of Chronic Fatigue Syndrome which,

although denigrated by some UK " CFS " investigators, carries impeccably

referenced papers, for example " Review: Immunology of Chronic Fatigue

Syndrome " by Professors o Patarca-Montero, -Ann Fletcher and

Klimas, a major review which lists 212 references (see below and

reference 29).

Further, there are the published abstracts of countless international research

and clinical conferences on ME/ICD-CFS.

It is hardly surprising that some of these prestigious journals " may have

strong currency among some patients and practitioners " .

From the 1950s to the 1980s, both the Lancet and the BMJ used to carry

articles of repute on ME but now seem to have an editorial policy of

publishing only studies on " CFS " as part of a psychiatric " Functional

Somatic Syndrome " , along with globus hystericus and pre-menstrual

tension, (Functional somatic syndromes; one or many? S Wessely, M

Sharpe et al Lancet 1999:354:936-939) and even of ridiculing patients'

suffering. Recently, the BMJ ran a poll (organised by Wessely) asking

readers to submit a list of what they considered " non-diseases " : ME/

chronic fatigue syndrome was nominated, along with bags under the eyes,

freckles and being overweight. Following intense media publicity, the poll

was headline news, with banner headlines proclaiming " Obesity and ME

are not diseases, say doctors " (Daily Telegraph, 11th April 2002).

Following the BMJ poll, unsurprisingly, yet more ME sufferers were struck off

their GP's list, being told that it was the practice's policy not to treat

" non-diseases " .

paragraph 55: " The lack of validated biological markers for CFS/ME has

further hampered diagnosis "

Whilst there is as yet no single, definitive diagnostic test for ME/ICD-CFS,

nevertheless throughout the extensive literature there are established,

internationally accepted, reproducible biological markers for it (but not for

" CFS " as defined by the Wessely School) which in combination with the

clinical picture enable a diagnosis to be made; thus for the MRC " CFS/ME "

Research and Advisory Group to attempt to equate the two disparate

conditions is unscientific and will inevitably result in failure to provide a

suitable research strategy for those with ME/ICD-CFS. Is this the underlying

political objective?

paragraph 60: " The MRC CFS/ME Research Advisory Group has noted

that there is support among some sections of the community for the use of

the description of ME from Ramsay (Ramsay 1998)….(but the MRC

Advisory Group) believes that researchers who wish to pursue this approach

will need to operationalise the Ramsay criteria and then demonstrate their

validity through peer-reviewed publication "

The reference supplied at paragraph 222 of the MRC draft document for

" (Ramsay 1998) " is cited as " Myalgic encephalomyeltitis and post fatigue

states - the saga of Royal Free disease. Gower Medical Publishing 1998 "

(sic). Dr Ramsay died in 1990. His monograph is entitled " Myalgic

Encephalomyelitis and Postviral Fatigue States. The saga of Royal Free

disease " . It was published (as a second edition) in 1988, not 1998.

As noted above, the intention of Simon Wessely (and those whose " policy "

he follows or perhaps initiates) has long been to eradicate ME (13), (14):

paragraph 60 seems to be yet another attempt to re-write medical history as

far as ME is concerned and to air-brush it from both existence and memory.

In so doing, he and his political masters are wiping out everything of value

about ME and about patients' experiences of it in continuing defiance of the

evidence.

It is surely extraordinary how " evidence-based " medicine can exclude

evidence which does not accord with a personal belief system or " policy " .

The disorder ME does not need to be " operationalised " . Since 1969, ME

has been defined as a discrete disorder with specific signs and symptoms,

and its diagnostic triad was established by Dr Melvin Ramsay in 1981 in

conjunction with the UK ME Association.

The term " ME " was first introduced in 1956 in a Leading Article in the Lancet

written by ED Acheson, who went on to become Sir Acheson, Chief

Medical Officer for England and Wales. Acheson wrote a major review of

ME in the American Journal of Medicine in 1959 in which he assiduously

recorded the many features, signs and symptoms (15). In 1978, the Royal

Society of Medicine held a symposium on ME at which the disorder was

accepted as a nosological entity. ME has been accepted by the WHO since

1969, yet here we have the MRC " CFS/ME " Research Advisory Group

dictating that it needs to be " operationalised " and validated " through

peer-reviewed publication " (which they know would not now be possible in

the UK due to the prevalent bias of editors of UK medical journals in favour

of the Wessely School beliefs).

Such a suggestion raises the question as to whether the MRC Group of

chosen experts is even minimally acquainted with the published literature on

ME / ICD-CFS (see comments on paragraphs 49 above and 82 below).

The very first port of call (indeed, the priority) for the MRC " CFS/ME "

Research Advisory Group should surely have been to study the literature:

had they done so, their ignorance (or their political agenda) might not have

been so manifestly exposed in this draft consultation document.

paragraph 61: " The MRC CFS/ME Research Advisory Group considers

that case definition is a key area for research but believes….the use of

broad inclusion criteria should allow subsequent re-appraisal of

experimental results (the Group considers that) it would not be possible to

identify potential subgroups unless inclusion criteria are broad enough to

encompass the necessary heterogeneity "

Why does the MRC Research Advisory Group recommend " broad inclusion

criteria " for research strategies into an ICD-classified neurological

disorder?

Is it the case that the MRC recommends " broad inclusion criteria " for

research strategies into all medical disorders which have as yet no single,

definitive diagnostic test (and there are many), or is this special pleading

only for " CFS/ME " ? Would the MRC identify other poorly-understood

medical disorders for which they would recommend that research strategies

must be based on " broad inclusion criteria " .

By what means does the MRC " CFS/ME " Research Advisory Group

propose to identify subgroups from " broad inclusion criteria " ?

paragraph 67: " There is a lack of basic epidemiological evidence to help

develop….management options for CFS/ME. This may stem from…the

historical failure to recognise CFS/ME as an illness "

There has been no historical failure to recognise ME as an illness. It has

been documented in the medical literature since 1938 (16). There has,

however, been denigration by psychiatrists of those with ME starting with

McEvedy and Beard in the 1970s, when they claimed (without ever seeing

a single patient) that the outbreak of ME in 1955 at The Royal Free Hospital

had been " mass hysteria " . Subsequently, one of the authors apparently

admitted that he had no interest in ME as such, but was merely seeking a

topic for a PhD thesis.

Without definition of the newly-coined composite term " CFS/ME " (used in

the CMO's report of January 2002), it is not possible to recognise it as an

illness and therefore the composite term can have no history.

paragraph 82: " The MRC CFS/ME Research Advisory Group has not

undertaken a detailed review of the current level of scientific knowledge on

the aetiology or pathogenesis of CFS/ME, as this was not its function. The

Group notes that the recent report of a Working Group convened under the

auspices of the Royal Australasian College of Physicians (2002) has

assessed the strength of evidence for a number of factors in the

pathophysiology of CFS (sic)….As a consequence of the lack of consistent

evidence, the MRC CFS/ME Research Advisory Group has considered a

number of broad thematic areas with regard to research on CFS/ME "

As noted above, it ought to have been a primary task of the MRC Group to

have made a detailed study of all the mainstream published literature on

ME/ICD-CFS (as well as on " CFS " of the Oxford definition so that

comparison and distinction could readily be made). This is a remarkable

omission and is surely essential if the MRC Group wishes to produce a

credible research strategy.

It seems singularly disingenuous (or perhaps politically expedient) for the

MRC Group to claim reliance on the Royal Australasian College of

Physicians (RACP) report, given the abundance of substantial flaws which

that report has been shown to contain. The ME/CFS Association of

Australia Ltd (an affiliation of all State Associations of ME/CFS) is

firmly of the opinion that publication of the RACP report will result in

" further

cases of misdiagnosis, inappropriate and inadequate medical care and the

promotion of widespread misconceptions about the illness, with potentially

far-reaching and long-lasting adverse effects for the 40 -140,000

Australians with (ME)CFS " . (17)

In a broadcast interview, Simon Molesworth AM, QC (President of the

ME/CFS Association of Australia) said he was concerned that the

guidelines suggest that " CFS " was " largely of the mind. The overall

impression is that it's an illness that's very much exacerbated or somehow

caused by perceptions " . He registered his dismay that the Australasian

report presented the syndrome as primarily psychological; that it

characterised patients as malingerers and that it under-emphasised

emerging research pointing to biological causes, whilst stressing

psychological interventions which could be dangerous for those who are

very sick.

Australians have warned that the Royal Australasian College of Physicians

(which developed the Guidelines) and the Medical Journal of Australia

(which published them) could be held legally liable if patients are made

more ill as a result of doctors following the report's recommendations for

graded exercise and cognitive behavioural therapy.

The international ME / ICD-CFS community was further outraged to read on

Co-cure that in response to extensive legitimate criticism, the Convenor of

the RACP report (Dr Rob Loblay) stated " The Guidelines provide an

accurate summation of the best available evidence or, where evidence is

lacking, a reliable consensus of professional opinion in this field " and that

Professor Lloyd was on record as stating " CFS cannot be

classified as a disease because the underlying mechanism that causes the

condition is not known or understood " . The fallacy of such a pronouncement

was quickly pointed out by Dr Enlander, an ME/CFS specialist from

New York, who said that on such a premise, cancer, MS and lupus were not

diseases either, because the mechanism for those conditions is not

understood. (Co-cure: 9th May 2002)

For the MRC " CFS/ME " Research Advisory Group to rely upon the RACP

report shows either a surprising lack of professionalism and of scientific

rigour, or else a sinister international political agenda.

paragraph 83: " …the research areas discussed below are not the only

ones where there is potential for advancing our understanding of the

pathogenesis of CFS/ME, but reflect the areas that currently show the most

promise "

Comments on the areas which the MRC Group considers " show the most

promise " are addressed in individual paragraphs below.

paragraph 86: (Infections): " ….in the great majority of cases no infectious

cause can be found by routine microbiological investigation. There is

reasonably strong evidence that ….enteroviruses are not causally related to

CFS/ME "

Routine investigations are not sufficient for such a complex disorder.

In July 2001 the American Medical Association issued a statement

explaining that 90% of ME/ICD-CFS patients show normal results on basic

investigations: Komaroff, Associate Professor of Medicine at

Harvard, said " 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 " . (18)

Whilst it may be true that enteroviruses may not be causally implicated in

ME/ICD-CFS, nevertheless there is a substantial body of evidence which

clearly demonstrates enteroviruses are involved in some patients with

ME/ICD-CFS (19) (20) 21) (22) (23). These papers suggest that an

on-going enteroviral infection may exist in some patients with (ME) CFS.

's recent book (Enteroviral and Toxin Mediated Myalgic

Encephalomyelitis / Chronic Fatigue Syndrome: Haworth Medical Press,

New York 2001) is described by Professor Mowbray as " a

remarkable clinical discourse of disease associated with enteroviruses " .

However, if investigators are repeatedly directed by " official " policy not to

look for enteroviruses (or any other viruses which may be involved with the

disorder) and if no funding is made available, they are not going to find

them.

In Professor o Patarca-Montero's latest book (Chronic Fatigue

Syndrome and the body's immune defence system: Haworth Medical Press,

New York, 2002) the author stipulates that enteroviruses might be important

in some patients with (ME)CFS,

Patarca is one of the foremost researchers in the field of immunology. This

book is a synthesis of reports by several hundred medical research experts

based on worldwide studies. It provides information relating to the

autoimmune consequences of ME/ICD-CFS in exceptional depth, together

with a review of therapeutic interventions that are immune-based (including

herbal medicine). It also explores the links between immune, endocrine and

nervous system abnormalities and stresses the need for a combined,

aggressive research approach by these respective disciplines. The book

explains the connection between (ME) CFS, fibromyalgia, Gulf War

syndrome and multiple chemical sensitivity.

We would urge each of the MRC " CFS/ME " Research Advisory Group of

independent experts to familarise themselves with this book before

finalising their research strategy proposals.

paragraph 95: (Neurology): " As the RACP report indicated, there is good

evidence that muscle strength, endurance and recovery are normal. It is

likely that abnormalities may be detected in the neuromuscular system of

patients who are…immobile "

Both the RACP and the MRC " CFS/ME " Research Advisory Group appear

to be sadly unaware of the laboratory evidence which convincingly

demonstrates that patients with ME/ICD-CFS reach exhaustion more rapidly

than normal controls and that there is a continued loss of post-exertional

muscle power (giving an additional loss of power) with delayed recovery for

at least 24 hours, whereas sedentary controls recovered full muscle power

after 200 minutes (24). Such effects are not due to de-conditioning or to

patients being immobile.

paragraph 96: (Neurology): " Clinical experience would indicate that most

patients with CFS/ME have neurological signs that lie within the normal

range "

This is an interesting statement from the MRC Group, because both the

1991 Oxford criteria and the 1994 CDC criteria expressly exclude patients

who have any clinical signs;

indeed, the 1994 Fukuda criteria are unequivocal: " We dropped all physical

signs " . (25)

Are members of the MRC Group aware of the fact that nystagmus is a

common finding in ME? Are they unaware of the papers documenting

neurological involvement in ME/ICD-CFS? (26) (27). Professor Komaroff

from Harvard states unambiguously that " The evidence indicates pathology

of the central nervous system and the immune system " .(28). What disorder

is the MRC " CFS/ME " Research Advisory Group talking about? It cannot be

ME/ICD-CFS, which is formally classified by the WHO as a neurological

disorder.

paragraph 97: (Neurology): " magnetic resonance (MR), SPECT and PET

are relatively new techniques to have been developed "

MRI scans have been in common use in the UK for over 20 years, ie. from

the early 1980s. Notably, there is no mention of magnetic resonance

spectroscopy (MRS), even though this has been shown to be very valuable

in identifying significant biochemical deficits in the basal ganglia and brain

stem (whereas MRI scans show no abnormality).

paragraph 102 (Muscle Fatigue and Weakness): " The general opinion is

that there is no physiological basis to the weakness and/or fatigue. These

are general assertions and at no point has the literature been systematically

reviewed… "

Is the MRC " CFS/ME " Research Advisory Group hoping to rely on input

arising from the consultation process to point out what is in the literature?

How can they draw up even a draft document about research strategy if they

do not know the literature which so clearly demonstrates delayed muscle

recovery in ME/ICD-CFS ? (24).

paragraph 105 (Immunology): " There does not seem to be a consensus on

the nature and extent of immunological disturbance in CFS/ME "

It would be true to say that there is more published evidence of the disrupted

immunology of ME/ICD-CFS than on any other aspect of the disorder:

Professors Patarca-Montero, Fletcher and Klimas state in the opening

sentence of their major review of the immunology of (ME) CFS that patients

" have two basic problems with immune function that have been documented

by most research groups: immune activation and poor cellular function (with)

frequent immunoglobulin deficiencies. These findings have a waxing and

waning temporal pattern " (29). In the US, the disorder is known as Chronic

Fatigue and Immune Dysfunction Syndrome for this reason. In 1994,

Professor Levine from the Viral Epidemiology Branch, Epidemiology

and Biostatistics Programme, National Cancer Institute, Bethesda,

land, stated " the spectrum of illnesses associated with a dysregulated

immune system now must include (ME)CFS " (30)

paragraph 106: (Immunology): " proinflammatory cytokines act in the brain to

induce a syndrome known as " sickness behaviour syndrome " which includes

reduced motivation…lethargy and loss of appetite "

paragraph 108: (Immunology): " Animal studies, particularly in " sickness

behaviour syndrome " , have potential implication for CFS/ME. It will be

important to develop and study models of " sickness behaviour syndrome " , to

assess outcomes and influences relevant to CFS/ME "

paragraph 109: (Immunology): " Clinical neuroimmunological studies are

much more difficult to undertake and measurements of inflammatory

mediators (eg. cytokines) are likely to be of limited value…. The Royal

Australasian College of Physicians Working Group suggested that

heterogeneity of findings might be explained in terms of…inadequate

consideration of potential confounding variables "

(ie. psychiatric morbidity).

On what evidence does the MRC " CFS/ME " Research Advisory Group state

that results of clinical neuroimmunological studies " are likely to be of

limited value " ? This is hardly a scientific approach worthy of the MRC.

These three paragraphs seem to indicate the intention of the MRC

" CFS/ME " Research Advisory Group to recommend instead a research

strategy (which the Group regards as " important " ) to study " sickness

behaviour " . It seems that such studies will meet with the approval of the

MRC Health Services Research board, which will decide that studying

" sickness behaviour " is a " priority " after all (see comments re paragraph 13

above).

Wessely et al have studied " behaviour " in their own definition of " CFS " since

1987 and despite their immense efforts, they themselves are forced to

concede that after a relatively short time, there was no difference between

those who underwent a behavioural reconditioning programme and those

who did not, as Sharpe confirmed at an international conference

held in Boston on 10-11 October 1998.

We submit that the MRC should be looking at provocation of cytokine

release, ie. the origin of the illness, rather than looking at effects of

final symptoms as expressed in a " sickness behaviour syndrome "

paragraph 112: (Neuroendocrinology): " The high degree of co-morbidity of

CFS/ME and depression would mean that studies in this area are fraught

with potential confounds "

The only studies which find a high degree of depression are those carried

out by psychiatrists of the Wessely School, which are looking at

heterogeneous " CFS " populations (31) (14) and this might indicate nothing

more substantive than bias in patient selection. Studies carried out by

non-biased investigators using more strictly defined cohorts do not find such

a high degree of depression. Further, rates of depression are well-known

to be increased in those who are medically ill (32), so even if rates of

depression are higher than in the general population, this is not a

psychiatrically-defining characteristic of ME/ICD-CFS.

paragraph 117: (Central Nervous System Function): " Key symptoms of

CFS/ME include fatigue, cognitive dysfunction and sleep disturbance, which

are associated with disordered functioning of the CNS "

Whilst these are key features of " CFS " , there are other key features of

ME/ICD-CFS which the MRC document fails to mention, such as

post-exertional muscle fatiguability, intense malaise, vertigo, photophobia,

dysequilibrium, neuromuscular incoordination, myalgia, cardiac involvement,

pancreatic involvement, liver dysfunction, shortness of breath, irritable

bowel, frequency of micturition, thermodysregulation, rashes, allergies, hair

loss, spontaneous bleeds, prostatitis etc. These significant features are not

usually considered by those who look only at " CFS " , but they have enormous

impact on the patient's quality of life and ability to function independently

(and hence on cost considerations).

paragraph 126: (Cognitive Performance): " despite reproducible

demonstration of some reduction in performance, the specific nature of such

deficits has not been identified "

The authors of the MRC draft document appear to be unaware of the

published work on ME/ICD-CFS of Sheila Bastien, neuropsychologist from

Berkeley, California, for example, Patterns of Neuropsychological

Abnormalities and Cognitive Impairment in Adults and Children . (33) Is the

MRC " CFS/ME " Research Advisory Group aware that in 1993, a paper

published in Biological Psychiatry found that in ME / ICD-CFS, cognitive

impairment included difficulty with memory sequencing, processing speed,

word searching, dyslogia, spatial organisation, calculation and

decision-making; in relation to degree of impairment, the researchers found

that " the performance of the CFIDS patients was sevenfold times worse

than either the control or the depressed group. These results indicated that

the memory deficit in CFIDS was more severe than assumed by the CDC

criteria. A pattern emerged…supporting neurological compromise in

CFIDS " (34).

paragraph 128: (Cognitive Performance): " The effects of suggestibility

…have only recently begun to be investigated "

To bring " suggestibility " into potential research strategies for ME / ICD-CFS

is offensive but it exposes the underlying agenda of the MRC " CFS/ME "

Research strategy.

It is also indicative of the contempt in which some clinicians and

investigators hold those suffering from a disorder which the CMO himself

has made clear is a serious one ranking with other neurological disorders

such as MS and MND.

paragraph 136: (Psychological factors): " Several studies have suggested

that personality factors may differ between those with CFS (sic) and other

disorders…

A prospectively designed study could allow the differentiation of the

interplay between biological and psychological factors which may

influence…maintenance of the disorder "

Given the concern expressed in paragraph 13 about identifying " priorities "

for health services research in " CFS/ME " and whether it is " appropriate " to

make HSR " a priority at this time " , might it not be more cost-efficient to

focus on research strategies which would be likely to deliver biological

markers? In other disorders (such as lupus), it has been the discovery of

biological markers which has enabled greater diagnostic precision.

[ At paragraph 170, the document makes clear that the Health Services

Research " is used to guide research into the cost-effectiveness of

management strategies " ].

paragraph 137: (Psychological factors): " Given that the co-morbidity of

CFS/ME with depression may be as high as 50%… "

see comments re paragraph 112 above.

paragraph 138 ff (INTERVENTIONS)

This section is a re-inforcement of the alleged benefits of CBT: the

document states that the MRC " CFS/ME " Research Advisory Group has

chosen to consider how the " evidence-base " for such interventions can be

strengthened. The document states at paragraph 166: " Further research

should concentrate on the effects of these interventions across the spectrum

of the disorder " (ie. on both the least severe and on the most severe

cases).

At paragraph 184 (Strengthening Research Capacity), there is a sentence

which many patients may find chilling: " There may be a need for specific

measures to promote multidisciplinary collaboration….such collaboration

offers established centres of excellence the kind of new scientific

opportunities that are essential if they are to sustain their competitiveness

internationally " .

Comments:

--------------

Currently, within the NHS, the only " centres of excellence " for " CFS " are

psychiatric units, whilst clinics for ME patients have now been closed (for

example, Preston).

The MRC Research Advisory Group seems unaware of the substantial and

growing concern about the dangers of CBT and graded exercise upon the

severely affected. (35)

The Medical Adviser to the UK ME Association (Dr Shepherd)

wrote in Medical & Welfare Bulletin (published by the ME Association,

Spring 2001) that he continues to receive more adverse reports about

graded exercise than any other form of intervention and that there is clear

confirmation that many people with ME/ICD-CFS are suffering relapses

through such programmes. Shepherd reminds people that doctors have

now been warned by their insurance companies that any form of exercise

treatment needs to be prescribed with just as much care as drug treatments,

otherwise doctors could be taken to court.

It is intolerably patronising to insist that CBT and graded exercise therapy

should be the way forward in " CFS/ME " on the grounds that such

interventions may help patients suffering from other " physical " disorders

such as cancer to manage their situation better, whilst at the same time

promoting and limiting research into " CFS/ME " to that designed to

" strengthen " psychotherapy strategies rather than looking into underlying

causes (as is the case in cancer).

The MRC " CFS/ME " Research Advisory Group seems not to agree that

" Behavioural and rehabilitative strategies are fine as far as they go, but

attention (and funding) must be focused on developing diagnostic tests and

medical interventions to address the biological and physiological

underpinnings of the illness " (36).

It is noted with particular regret that no-where in the MRC draft document is

there any mention of the RiME petition (Research into ME): this petition

carried over 16,000 signatures and it asked:

" That a panel of specialists in the fields of Neurology,

Immunology, Endocrinology and other disciplines, but with the

exception of Psychiatry, be established to commission research

into the aetiology (underlying physical causes) of ME.

That a research programme be up and running by the end of

2002 " .

This petition was handed in to the MRC on 2nd September 2002.

The very next day, it emerged that the MRC was minded to grant £2.6 million

to psychiatrists of the Wessely School for further research into cognitive

behavioural therapy in " CFS/ME " .

The MRC Group might soon be judicially required to consider the effects of

their preferred approach (ie. the prevailing somatisation orthodoxy) upon

ME / ICD-CFS sufferers' physical and mental health because as Barbara

Rubin states: " The patient who is prematurely judged to have a psychiatric

disorder or to be " malingering " will face medical, social, legal and financial

penalties that can destroy them and their families " (37). This is indeed the

case and currently there is in existence documentary evidence (which the

present authors have seen) of a major action already lodged in the UK

Courts against the Department of Health, specifically naming certain people

prominent in the field of " CFS " .

paragraph 201: (Conclusions and Recommendation): " A strategy is

proposed which reflects the current state of knowledge in CFS/ME "

It is disputed that the MRC " CFS/ME " Research Advisory Group is aware of

the current state of knowledge in ME/ICD-CFS.

Without such knowledge, it is not possible for the MRC " CFS/ME " Research

Advisory Group to deliver any credible research strategy.

One is left with the disturbing conclusion that the recommendation

underpinning the 1996 Joint Royal Colleges' Report on CFS (14) remains

current, namely, that the many documented abnormalities found in

ME/ICD-CFS " should not deflect the clinician from the (psychiatric)

approach…and should not focus attention towards a search for an 'organic'

cause " .

Summary Report on MRC Questionnaire

Appended to the main body of the document is a Summary Report on MRC

CFS/ME Consultation Questionnaire (November 2002); it is an analysis of

the responses to the MRC questionnaire (which had to be returned by 28th

August 2002).

The Report states that only 187 responses were received by the MRC. This

may have been because there was almost no publicity about the

questionnaire so most people were unaware of it: it seems that the ME

Association did not make it known to all its members and that Action for ME

submitted a response on behalf of its members. An electronic response was

requested by the MRC, which immediately eliminated many people who

might have wished to respond.

An Appendix to this Summary Report lists important areas for research

submitted by respondents to the questionnaire; these include cell biology;

genetics; environmental influences; virology; epidemiology; diagnosis

(including triggers and the use of imaging techniques) and case definition.

(To this list, many patients would like to add nutritional interventions).

Inevitably, there is no mention of the 16,000 signature RiME petition in this

Summary Report.

It is important to note that this appendix is not an appendix to the main

document but only to the Summary Report of respondent's views of areas

which should be addressed; (these being areas which have already

provided evidence of abnormalities and of potential treatment direction).

CONCLUSION

Most importantly, the authors of the MRC draft document have ignored all

the justified criticism of the information on which they place so much

reliance; this is momentous, because that criticism revealed the

misrepresentations, the misinterpretations, the denial of available credible

evidence, the deception, the selectivity in use of the available evidence, the

methodological flaws and the many omissions which pervade so much of

the Wessely School literature. Both the Joint Royal Colleges' Report and

the Royal Australasian College of Physicians' Report were very heavily and

cogently criticised. Significantly, claims made by these psychiatrists are

not established facts at all, nor are they supported in the international

literature.

Is there a credible explanation?

The MRC " CFS/ME " Research Advisory Group is doubtless aware of an

interesting and relevant document which is now in the public domain: it is

called Trends in Health and Disability 2002 and is produced by UNUM

Provident, one of the major insurance companies. The Report opens with an

Introduction by the Chief Executive Officer of UNUM who sets the scene:

" Mental health issues have been of particular importance to us recently " .

Psychiatrist Sharpe (long known to be associated with UNUM and

for his recommendation that claimants with ME/CFS should be subjected to

covert video surveillance) provides a timely exposition of the politics behind

the ME/ICD-CFS situation in his contribution entitled " Functional Symptoms

and Syndromes: Recent Developments " (in which he includes " post-viral

fatigue syndrome / CFS), as revealed by the following extracts:

" It is becoming increasingly clear that the problem of patients

who have illness that is not clearly explained by disease is a

large one.

There is a great deal of confusion about what to call such

illness. A wide range of general terms has been used including

'hysteria', 'abnormal illness behaviour', 'somatisation' and

'somatoform disorders'. Recently the terms 'medically

unexplained symptoms (MUS) and 'functional' symptoms have

become popular amongst researchers.

Classification is also confusing as there are parallel medical and

psychiatric classifications. The psychiatric classifications

provide alternative diagnoses for the same patients.

The majority will meet criteria for depressive or anxiety disorders

and most of the remainder for somatisation disorders of which

hypochondriasis and somatoform disorder have most clinical

utility.

The psychiatric classification has important treatment

implications. Because patients may not want a psychiatric

diagnosis, this may be missed.

There is strong evidence that symptoms and disability are

shaped by psychological factors. Especially important are the

patients' beliefs and fears about their symptoms.

Possible causal factors in chronic fatigue syndrome:

------------------------------------------------------------------------

PSYCHOLOGICAL: personality, disease attribution, avoidant

coping style.

SOCIAL: information patients receive about the symptoms and

how to cope with them; this information may stress the chronicity

and promote helplessness. Such unhelpful information is found

in 'self-help' books. Unfortunately doctors may be as bad.

Obstacles to recovery:

------------------------------

The current system of state benefits, insurance payment and

litigation remain potentially major obstacles to effective

rehabilitation.

Furthermore patient groups who champion the interest of

individuals with functional complaints (particularly chronic fatigue

syndrome) are increasingly influential; they are extremely

effective in lobbying politicians. The ME lobby is the best

example.

Functional symptoms are not going to go away. However, the

form they take is likely to change. Possible new functional

syndromes are likely to include those associated with pollution

(chemical, biological and radiological).

As the authority of medicine to define what is a legitimate illness

is diminished, increasingly consumer oriented and privatised

doctors will collude with the patient's views that they have a

disabling and permanent illness.

In other words, it may be difficult for those who wish to champion

rehabilitation and return to work to 'hold the line' without seeming

to be 'anti-patient'.

It will be imperative that health and social policy address this

problem.

This will not be easy. However, there are glimmers of progress.

An example is recent developments in the politics of CFS. One

of the major charities (Action for ME) is aligning itself with an

evidence-based approach. These are early days but if this

convergence of rehabilitation oriented clinicians and a patient

advocacy group is successful, there could be very positive

implications for insurers.

Funding of rehabilitation by commercial bodies has begun in the

UK (with organisations such as PRISMA) and is likely to

continue.

..an increased availability of rehabilitative treatment facilities is

highly desirable. The NHS is not likely to pay for these.

Both health services and insurers now need to take a more

positive approach. "

Also in Trends in Health and Disability 2002 is a contribution by Mansel

Aylward, Medical Director for The Department of Work and Pensions, who

sets out some of the Government " planned initiatives " in the areas of Health

and Welfare:

" There is a common interest across several Government

Departments in measures which would reduce the high costs of

sickness absence and improve the quality and availability of

…rehabilitation.

The Government shares an interest…in the public, private and

voluntary sectors which have a stake in the development of more

effective models of rehabilitation.

Growth in benefit recipients due to mental and behavioural

disorders has been rapid during the last five years….Another

interpretation might be a migration in the diagnostic label from

other medical conditions to 'mental health problems' " .

In the light of such clarification (notably about PRISMA, a multi-national

healthcare company working with insurance companies to arrange

rehabilitation programmes for those with " medically unexplained symptoms " ,

where Simon Wessely is a member of the Supervisory Board, which in

order of seniority is higher than the Board of Management) and despite the

carefully-drafted reassuring words and lip-service to the value of " lay

participation " in the MRC draft document, it seems inevitable that as far as

ME / ICD-CFS is concerned, bad science will continue unabated in the UK

and it will even be promoted by Government agencies. It also seems

inevitable that there will be a corresponding growth in PRISMA company

profits.

Bad science, bad " policy " and vested commercial interests deserve to be

exposed and criticised but, as ever, it seems to be left to sufferers to do

so. Even when they have done so, it seems likely from the MRC " CFS/ME "

Research Advisory Group draft document that a substantial number of very

sick people with a complex neuro-endocrine-immuno-vascular disorder are

not going to be allowed to stand in the way of those vested interests.

Malcolm Hooper 1

Emertitus Professor of Medicinal Chemistry

Department of Life Sciences

University of Sunderland

SR2 7EE, UK

EP Marshall 2

M 2

ME Research (UK)

c/o The British Library

Science Reference & Information Service

Boston Spa

Wetherby

West Yorkshire LS23 7QB

27th December 2002

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Royal Society of Medicine Press, 2000

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4. Neuroendocrine responses to d-fenfluramine and insulin-induce

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6. Hansard 11th May 2000 461W - 462W

7. personal communication

8. Hansard (Lords):19th December 1998:1011-1024

9. Posting by the Sussex ME / CFS Society: Co-Cure Act:14th June 2002

10 Letter from Professor Sir Radda 15th July 2002

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Fred Friedberg Journal of Chronic Fatigue Syndrome

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14. Chronic Fatigue Syndrome: report of a joint working group of the

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15. The Clinical Syndrome Variously Called Benign Myalgic

Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia. ED

Acheson Am J Med 1959:569-595

16. Epidemiological study of an epidemic diagnosed as poliomyelitis

occurring among the personnel of Los Angeles County General Hospital

during the summer of 1934. Gilliam AG. Public Health Bulletin, US

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17. Letter to The Medical Journal of Australia. Simon R Molesworth AM,

QC

7th March 2002

18. American Medical Association Statement, Co-Cure 17th July 2001

19. Persistence of Enteroviral RNA in Chronic Fatigue Syndrome is

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December 2002

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