Extra-contractural referrals (ECRs /OATs), which previously enabled
some severely ill patients to obtain helpful assessment and support from ME
;experts outside the area of their own NHS Trust are threatened with
being withdrawn; if so, this would inevitably lead to more unnecessary
suffering.
(viii) Children with ME I CFS have been forcibly removed from
their parents and taken into care. (This issue was raised at the CMO’s
Childrens’ sub-group meeting in April 1999: consultant paediatrician Dr
Nigel Speight reported pressure on children to attend school and the
mandatory involvement of a child psychiatrist, with rejection of input
by a paediatrician, and a frequency of psychiatrists diagnosing
Munchausen’s Syndrome by Proxy which amounted to an epidemic.
(Perspectives:1999:72:9)
(ix) The truly severely ill are left to perish or survive as best
they can; they are simply forgotten about, and receive no help or
support. Those who have no family to call upon are in quite desperate
straights. There are documented cases where Social Services have failed
to supervise the Agencies to whom they have delegated community care,
with the result that "carers" supplied by Agencies have ill-treated the
"clients"; have threatened extremely vulnerable sick people; have raided
their homes, or have failed to turn up at all. In one case, a woman was
locked in her bathroom. In another particular case, a severely sick and
incapacitated woman with ME was left alone in her bed for four days with
no food.
(x) There is virtually no provision, nor any proposed provision, for
specialist referral for the most severely ill.
(xi) Patients with ME I CFS reported a change in attitude by
doctors and hospital consultants, and even in the attitude of their own
relatives.
(xi) The Department of Health has not commissioned any research in
this area and has no plans to do so.
(xii) ME I CFS is no longer covered by some private medical
insurance firms.
Wessely and his co-authors of the joint Royal Colleges’ Report CR54 would
naturally seek to dissociate themselves from all these consequences of their
published Report, but due consideration of the facts and the
evidence reveal that Wessely is the common denominator.
The woefully inadequate response from the now retired President of the
Royal College of Physicians (Professor Sir Leslie Tumberg) to the many
detailed and justified criticisms of CR54 gave rise to further concern: on
the prinicple that if a product is shown to be faulty, it can be taken back
to the vendor or supplier for replacement, why should the Royal Colleges and
/ or the Chief Medical Officer not be equally accountable for the
distribution of material which can be shown to be faulty, flawed and
misleading?
Further Direct Consequences of the Report of the Joint UK Royal Colleges
1. A Petition to Her Majesty’s Government
The published criticisms of CR54 and the many informed critical responses
were ignored or were met with dismissive and patronising rebuttal by the
Presidents of the three Royal Colleges.
Patients, their families and friends were outraged, as were medical
practitioners who were experienced in helping those with genuine ME.
A group of people who were involved with ME came together to organise a
petition that the joint Royal Colleges’ Report should be withdrawn.
That petition was called "Fighting For Truth" or "ForT" and it was signed
by 12,500 people. Those signatures, together with supportive documentary evidence (in
triplicate) were presented to the Countess of Mar on College Green outside the House
of Lords in London on 26th November 1997.
At 2.38 pm that same day, the Countess of Mar rose in the House of Lords
to ask the following question:
"What is the current advice upon which general medical practitioners base
their diagnosis and treatment for the illness myalgic encephalomyelitis (ME)
or, as known by some psychiatrists, chronic fatigue syndrome".
This was followed by six supplementary questions from supporters in the
House of Lords.
The Minister of State for Health ( Baroness Jay of Paddington —the former
Margaret Jay, daughter of the former Labour Prime Minister James Callaghan)
responded in negative and evasive terms, saying that she was unaware of the
petition.
This was untrue, as she had previously personally responded to various
letters about the petition; Lady Jay subsequently had to apologise and to
concede (in writing) that she had indeed mislead the House of Lords; this
was deemed by MPs and others to be a very serious matter.
At 3.07 pm, the Countess of Mar presented the petition, extracts of which
are as follows:
"To the Right Honourable the Lords Spiritual and Temporal in Parliament
assembled
"The humble petition sheweth
"that, on behalf of the organisation Fighting For Truth (ForT) she has
received a petition calling for the rejection and withdrawal from
circulation of the Royal Colleges’ Report on Chronic Fatigue Syndrome
(CR54).
"that CR54 advises that all patients suffering from chronic fatigue
should be rehabilitated by re-education, that is, by psychological therapy,
which aims at changing the patients’ belief that they are ill, that the
Report stipulates antidepressants should be given even to those who are not
depressed and recommends participation in programmes of graded exercise, no
matter how severely ill the patient,and that it claims a successful recovery
rate from such programmes,despite the fact that international published
evidence concludes that such programmes are ineffective and sometimes
harmful;
"that a diagnosis of ME should only be made when fatigue of a wholly
incapacitating nature is present and is unequivocally accompanied by neuro-immunological
components which together form a consistent, reproducible, well-defined and
recognisable pattern for medical practitioners who are familiar with the
specific sub-category of ME;
"This claim is based upon a considerable body of published material which
demonstrates organic abnormalities in the brain, muscle, vascular system,
gut, immune and endocrine systems of those with ME, and that these areas are
virtually ignored, trivialised or dismissed in CR54;
"that medical experts in these areas were actively prevented by the Royal
Colleges’ Working Party from participating in the preparation of this
Report, and that any input from medical experts involved with the ME
Charities Alliance was deliberately excluded by members of the CR54 Working
Party;
"that eight out of sixteen members of the CR54 Working Party were
psychiatrists and seven were physicians well known for their bias towards a
psychiatric diagnosis of ME;
"that extensive published medical evidence supports the view that to
diagnose "CFS" without full investigations (a course recommended by CR54) is
potentially damaging;
and prays that the House of Lords will take note of the Petition
organised by Fighting for Truth which calls for the rejection and withdrawal
of the Royal Colleges’ Report on Chronic Fatigue Syndrome (CR54) which has
been signed by 12,500 people and further prays that the House of Lords will
call upon Her Majesty’s Government to review that scientific evidence upon
which diagnosis and treatment of ME are based.
"And you petitioners will ever pray etc’.
The Minister of State for Health ( Baroness Jay) did not respond to the
petition; she suggested that those with ME take their grievances directly to
the Royal Colleges.
The petition was rejected in that the Presidents of the Royal Colleges
refused (in writing) to withdraw the joint Report CR54.
By contrast, in 1995-96, the US government voted $11.8 million to CFS
research.
2. A private meeting with the Chief Medical Officer. Sir Kenneth
Calman
At the instigation of one or two people closely involved with ME, the CMO
agreed to meet The Countess of Mar, Dr Betty Dowsett ( honorary consultant
microbiologist with a lifetime’s experience of ME) and independent ME
researcher Mrs Doris Jones MSc; this meeting took place at the Department of
Health on 11th March 1998. Its’ aim was to present to the CMO and
to the Minister of State for Health (Baroness Jay of Paddington) some of the
published evidence on the organic basis of ME.
Although previously scheduled to be present, Baroness Jay failed to
attend. This meeting had nothing to do with the meeting with Department of Health
officials in February 1998,attended by consultant immunologist Dr Anthony
Pinching and members of the UK ME Association, although the combined effects
clearly supported each other.
The CMO and an official from the Department of Health were presented with
73 major published references to the organic basis of ME I CFS
(including a copy of "The Clinical and Scientific Basis of Myalgic
Encephalomyelitis edited by Byron Hyde of Ottawa), together with evidence of
recent difficulties in obtaining appropriate benefit and support for
patients with ME I CFS.
Evidence was supplied on the general problems found in ME; on the
historical reviews; on the epidemiology (non-psychiatric) of ME and on the
clinical aspects; on virological and environmental factors; on
neuroendocrmnological disturbances; on nuclear medicine findings; on muscle
and exercise findings; on cardiovascular aspects; on immunological findings;
on neuropsychiatric findings, particularly those ignored in CR54; on
treatment and rehabilitation; on children and adolescents with ME and on
visual disturbances in ME. An outline was given of the potential costs to
the nation of the illness.
A detailed section dealt with case-histories of actual patients and the
many problems which beset them.A further section was entitled "Chronicity - Severity - Deaths", with
long-term follow-up details.
Sir Kenneth Calman made the following remarks:
A) He expressed great surprise that a report from the Royal Colleges
should have made such an impact on the way doctors treat patients: he
said that as a rule, such reports were either ignored or not taken
seriously.
B) He said that the purpose of CR54 was not to advise doctors on
diagnosis and treatment, but to ascertain whether the disease existed or
not, and that this had been established. In that context, the causes
were of little consequence.
C) The Countess of Mar then pointed out that in this instance,
general practitioners were being guided by CR54 recommendations, not
only for patients with ME / CFS but also for Gulf War syndrome veterans
and organophosphate victims. The CMO acknowledged her concerns.
D) The CMO asked that a copy of everything presented to him that day
be sent to Professor George Alberti at The Royal College of Physicians
(who had succeeded Professor Sir Leslie Turnberg as President of the
Royal College of Physicians), promising that he would take up the issues
himself with the Royal Colleges.
E) The CMO requested the Countess of Mar to take up the benefits
issue with Dr Mansel Aylward, Chief Medical Adviser, Department of
Social Security.
F) The CMO said that Lord Sainsbury (who is believed to be a
personal friend of Simon Wessely) had generously donated £4 million
for research into CFS.
G) The CMO concluded by saying that ways should be found to make life
easier for those afflicted by ME I CFS.
Both Sir Kenneth and the official from the D0H appeared to understand
that there were big problems for ME I CFS patients.
3 A Meeting in the Grand Committee Room of The House of Commons
This was another patient initiative in protest at CR54; it was organised
by Tania Harrison, a severely affected young person with ME and consisted of a
packed audience of the seriously ill and their carers, together with 52 Members
of Parliament.
4. The setting up by the Chief Medical Officer of a new working group
On 16th July 1998 to mark the occasion of his retirement, in a
widely-publicised press release, Sir Kenneth Calman announced that the
Department of Health was to set up a new Working Group on ME I CFS,
and that it should involve patients and carers. It was to be funded by the
Linbury Trust (which is the Trust of the Sainsbury Supermarket family).
Whilst welcoming this news, many of the better-informed in the ME
community had grave reservations about the fact that the Government appeared
to have handed over financial control of the new Working Party to the
Linbury Trust.
In July 1998 the Linbury Trust produced a booklet entitled "A Research
Portfolio on Chronic Fatigue" (note: not chronic fatigue syndrome) it
was published by The Royal Society of Medicine and was edited by Robin Fox for the Linbury Trust. Sixty-three per cent of the Linbury contributors are psychiatrists who
might be said to belong to the "Wessely" school. Seventy per cent of the reported work supported by the Linbury Trust has
a psychiatric - psychological dimension. Much of the work contained in the Linbury "portfolio" is based on the
same poor epidemiology; the psychiatrists continue to confuse ME with
chronic fatigue and with psychological illnesses such as depression. Evidence which shows ME to be an organic illness is excluded or devalued. The plight of the severely affected (and of children with ME) is ignored
altogether.
On page 67 of the Linbury Trust "research portfolio" on chronic fatigue,
there is an "Editorial Afterword": it contains a diagram drawn by Dr Anthony
Cleare (who co-authored with Wessely the paper which states "There lies
at the heart of CFS not a virus (or) immune disorder, but a distortion in
the doctor-patient relationship": Anthony J Cleare. Simon C Wessely. Update
1996:61-69).
In summary, the "Editorial Afterword" affirms that patients with
psychological defects are predisposed to develop ME / CFS owing to the mis-attribution
of their symptoms to a physical cause. This prompts patients to avoid
physical activity, which causes them to become deconditioned, which
increases fatigue and psychological disturbance.
The message of the "research portfolio" into "CFS" is clear: cognitive
behaviour therapy and drug therapy will control the patient’s mis-attributions.
Searching for causes is not only futile but may prevent recovery.
The first paper in the "research portfolio" is by Simon Wessely and is
entitled "Epidemiology in CFS"; it has 18 references, of which no
less than 10 (55%) are Wessely’s own papers. Ignoring all seminal papers
which have charted the course of ME over the last 60 years, from sporadic
cases to endemic clusters and as world-wide epidemics, Wessely recounts only
his own work from 1988.
No attempt has been made in the Linbury Trust "research portfolio" to
include the seriously and chronically disabled in any individual study.
Notwithstanding, in his "Editorial Afterword", Robin Fox proclaims:
"we can state confidently that CFS is s symptom complex rather than a
disease. . ..it is not an inflammation of brain or a muscle disease.
. .numerous psychological disturbances have been identified"
If taken to its logical conclusion, much of this "research" work re-inforces
the inhuman child protection system, directly leading children diagnosed as
having ME I CFS to be forced into psychiatric units against their
parents’ wishes.
(Acknowledgment to Dr B.Dowsett: "Chronic Fatigue" and The Linbury
Trust Research Portfolio: August 1998).
It is not therefore surprising that alarm bells are ringing loudly about
the fact that the CMOs new Working Group is in the hands of the Linbury
Trust.
Alarm bells are also ringing loudly about the fact that Simon Wessely
(now Professor of Epidemiological and Liaison Psychiatry at King’s College
School of Medicine, London) is one of the members of the CMO’s Working Group, as
are his close colleagues and collaborators Dr Anthony Cleare, (Senior
Lecturer and Linbury Trust Fellow, Department of Psychological Medicine, King’s
College Hospital, London); Dr Trudie Chalder (a cognitive behaviour therapist at
Kings College Hospital, London) and Dr Peter White (consultant psychiatrist, St BartholomeWs Hospital, LOndon), all of whose trenchant views on ME are documented only too well.
One illuminating disclosure is that the Chairman of the CMO’s Working
Party (Professor Allen Hutchinson of the School of Health and Related Research
at Sheffield University) has made it known that he will hear no criticism of
Simon Wessely (personal communication).
Another is that the library of over 3,000 articles, editorials and
letters etc relating to ME / CFS which will form the database of the Working
Group has been donated by Simon Wessely.
5. The Publication of Research Paper 98/107 Chronic Fatigue Syndrome
I ME I 1st December 1998. House of Commons Library,
London. by Dr Alex Sleator
This 47-page document purports to discuss the "controversy surrounding
Chronic Fatigue syndrome I ME". It is in the House of Commons Library and is for the use and
enlightenment of Members of Parliament; it is standard practice for the House of Commons Library to publish documents on issues of current interest to MPs.
Whilst the first 18 pages give the impression that this is a fair
assessment, it then becomes clear that it is little more than an endorsement
of the joint Royal College’s Report CR54, with undue emphasis on the
psychiatric - psychological bias of that Report.
The extent and degree of the justified criticisms of CR54 are grossly
understated, which is misleading.
Quoted details on the Incapacity Handbook for the Medical Services
doctors state there is no firm evidence that ME is different from CFS, nor
that CFS is a physical disease. (One of the issues raised by
differentiating between ME and CFS is the difference in relation to cortisol
levels, but this is not mentioned).
The most telling details appear on page 39, where Baroness Hayman states
"The Department of Health has not commissioned any research in this area,
and has no present plans to do so. We are, however, working with the Linbury
Trust on issues related to the treatment and management of the problem".
Perhaps those who anticipate that the outcome of the CMO’s new Working
Party on ME I CFS is a foregone conclusion may be justified in their
negative expectations: it seems that Wessely’s influential involvement with
industry (both Wellcome — who fund the Medical Research Council — and the
Sainsbury’s Linbury Trust) determines who gets the financial grants and
which research is done on ME I CFS in the UK.
(Chronological review of short selection of Wesselv & associates’ papers
I continued from page 46)
Neuropsychological deficits n chronic fatigue syndrome: artefact or
reality?
EDITORIAL: Rona Moss-Morriss et al. Department of Psychiatry, Auckland
University Medical School, New Zealand (JNNP 1996:60:474-477)
Whilst not authored by Wessely or his close colleagues, this paper is
based on Wessely & colleagues’ views and influence — see
references.
The stated aim of this review is to provide a comprehensive summary and
discussion of the results from neuropsychological studies which have
compared CFS patients with controls or normative data.
Areas mentioned include global intellectual functioning, receptive
functions, mental activity rate, attentional activities, memory, cognition,
psychological factors and cognitive deficits, and physical factors and
cognitive deficits.
The authors state that "A consistent finding across studies is the
discrepancy between objective performance and subjective reports of
cognitive difficulty.... Subjective reports of impairment have been
consistently related to higher levels of psychopathology, anxiety,
depression, and somatic complaints".
"In summary, depression, emotional distress, fatigue and somatic ratings
have all shown some relations to impaired performance in chronic fatigue
syndrome".
"Consequently, there is almost no evidence to date that organic factors
contribute to the neuropsychological impairment in chronic fatigue
syndrome".
"Somatic focus and overconcern about symptoms may play an important part
in speed of information processing by competing for attentional resources".
1997
Chronic Fatigue Syndrome: is ME nothing more than chronic fatigue...?
Frances Lee. Health & Fitness, January 1997, pp 8 1-82
It is not only in the medical press that Wessely and colleagues promote
their own views; this article serves as another vehicle for the
psychiatrists.
"Myalgic encephalomyelitis (ME) is dead but chronic fatigue syndrome
(CFS) lives on, according to a controversial new report".
"Although ME has long been recognised as a physical disease by the World
Health Organisation, psychiatrists in Britain have claimed it as their
territory".
"A research group from three major medical bodies, the Royal Colleges of
Physicians, Psychiatrists and General Practitioners.., decided that ME... is
simply CFS and is best treated by exercise and phsyiotherapy".
"According to Dr Robert Kendell, president of the Royal College of
Psychiatrists, the name has been changed to CFS because ... ‘there’s no such
evidence of any inflammation, therefore (the use of ME) is inappropriate’ ".
"Dr Simon Wessely . . . says ‘because of the research, we are a lot more
positive and optimistic about the best forms of management and
rehabilitation’".
"The Royal Colleges insist.., that the search for any other tangible
cause is likely to lead up a blind alley".
"The Colleges reject any link between CFS and muscle disorders. Any
muscle changes, they say, are the result of inactivity".
"..anxiety and depression are the strongest risk factors so far
identified for CFS".
In this article, Dr Kendell says "It is important that everybody —
patients, their relatives and their doctors — should realise that the
distinction between mental and physical is illusory" (see letter from
H.J.H.Berger on page 67 above).
Five days that shook the world. Ann Boston. Guardian: 11th
March, 1997, p 16 This is an article about the potential dangers of
psychotherapy.
"‘People involved in psychotherapy should know that it has side effects
and risks’ said Dr Simon Wessely at the Maudsley Hospital. ‘There’s evidence
that some intensive courses do have rates of casualties’".
(Cognitive behaviour therapy (which Wessely promotes for those with ME /
CFS) is a form of psychotherapy, soit is notable that Wessely is aware that
psychotherapy has side effects and risks, given that he and his close
colleagues promote it in ME I CFS on the grounds that it is safe, effective
and "acceptable to patients").
You have to be mad to work there. Jeremy Clarke.
Sunday Telegraph, 1.6.97
Jeremy Clarke makes the point that in One Flew Over the Cuckoo’s
Nest, author Ken Kesey makes the startling suggestion that some
mental illnesses exist only in the minds of psychiatrists — all of
whom are acting on behalf of the state.
The germ bug. Hilary Bower. Independent on Sunday,8.6.97
Germs may be responsible for many of the illnesses blamed on genes and
vices:
this article states that "Diseases that were once thought to be caused by
our way of life, or by something wrong with the body, are turning out to be
due to germs".
Various examples are given, including Chlamydia pneumoniae, which is now
known to set the scene for a heart attack.
The article discusses stealth viruses (how some viruses hide in the cells
as parasites, just marking time until something — such as stress — triggers
them into higher activity). Dr John Fazackerly, senior lecturer in virology
at the University of Edinburgh, explained about viral "deviousness", ie.
when the virus is not immediately obvious but when immune tolerance is
broken, which results in auto-immune reaction. He made the point that if the
virus goes away, one is left with auto-immune disease (and not an
obvious viral infection).
(This pathway has been postulated as possible in ME).
Although not a virologist, Simon Wessely gives his opinion that "we are a
long way from proving viral causes of mental illness". He adds "Mood can
alter immunity, so infection could in fact be a consequence of
a disorder rather than a cause".
Clinical improvement in chronic fatigue syndrome is not associated
with lymphocyte subsets of function or activation
Peakman M; Deale A; Wessely S et al C/in Immunol Immunopathol 1997: 82:1:83-91
Immune function was assessed in 43 patients with CFS (using the Oxford
criteria including patients with depression and anxiety), and in 20 healthy
controls.
The authors found no correlation between any immune variable and measures
of clinical status ( except a weak correlation between total CD4 T cells and
fatigue).
The authors conclude "we have been unable to replicate previous findings
of immune activation in CFS and unable to find any important associations
between clinical status, treatment response, and immunological status".
(Compare these findings by Wessely with the papers listed on page 36 above)
Changes in growth hormone. insulin, insulin-like growth factors (IGFs)
and IGFbinding protein-I in chronic fatigue syndrome
Allain TJ; Beam JA, Wessely S et al Bio/ Psychiatry 1997:41:5:567-5 73
The aim of this study was to determine whether patients with CFS have
abnormalities of the growth hormone / IGF axis basally or following
hypothalamic stimulation with insulin-induced hypoglycaemia.
The authors state "This study provides preliminary data abnormalities of
the GH-IGF axis in CFS".
However, they then conclude "It is not apparent whether these changes
are... acquired secondary to behavioural aspects of CFS such as reduced
physical activity".
Cognitive behaviour therapv for chronic fatigue syndrome: a randomised
controlled trial
Deale A; Chalder T: Marks I; Wessely S. Am J Psychiat
1997:154:3:408-14
CBT for CFS was compared with relaxation in a randomised controlled
trial. Treatment was completed by 53 patients.
According to the authors, at final follow-up (six months), 70% of the CBT
group who completed the course achieved good outcomes, compared with 19% of
those in the relaxation group who completed treatment.
(Note that there are no details regarding any history of infection, and
there are no details about the presence of (or the effects on) any symptoms
other than
"fatigue" and depression; since ME symptoms fluctuate, a percentage of
patients should have improved regardless of treatment, however, the controls
did not do so and some patients were worse than if they had received no
intervention. Also, a 70% improvement rate is not impressive when one
considers that other studies have shown that evening primrose oil and
magnesium injections both showed improvement rates of 80%).
The prognosis of chronic fatigue and chronic fatigue syndrome
Joyce J, Hotopf M, Wessely S. QJM 1997:90:3:223-233
This claims to be a "review" of "all" the research on the prognosis of
patients with CF and CFS.
(Note it did not include the research which indicates that attributions
do not influence outcome).
Of note is the fact that the authors concede "As the definition becomes
more stringent, the prognosis appears to worsen".
The authors rely on the study by their close colleague Michael Sharpe
(Followup of patients presenting with fatigue to an infectious diseases
clinic. Sharpe M et a!. BMJ 1992.305-147-152), which found that
belonging to a self-help organisation is associated with a poor outcome.
The overall conclusion was that in both CF and CFS, the untreated
prognosis is essentially poor, and that "consistently reported" risk factors
for poor prognosis include "illness beliefs" and "faulty attributions".
In a brilliantly argued response (which the editor of the QJM printed
unamended and in full), Dr T.E. Hedrick from the USA (see pages 65 -67
above) made the following points: (Chronic fatigue syndrome: TE Hedrick.
Quarterly Journal of Medicine 1997:90:723-725)
"As a psychologist and research methodologist, I am very concerned that
the recent article by Joyce, Hotopf and Wessely contained misleading
conclusions about the prognostic importance of psychological risk factors
for persons with CFS.
"Physicians may be led to erroneously conclude that CFS patients can be
treated either by changing an individual’s belief that he I she has a
physical illness or by solely focusing on psychiatric problems.
"The research cited does not support these conclusions.
"By grouping studies according to age and the stringency of the illness,
they showed that recovery rates varied enormously.
"Unfortunately, when the authors summarized studies on the prognostic
importance of psychological risk / illness beliefs, they were much less
careful.
"The drew conclusions across seven studies that were based on different
populations (from simple fatigue of 30 days to chronic severe fatigue of
decades), different diagnostic instruments and definitions of improvement,
and different timing of measures (prior to illness, at intake, years after
onset of illness, at final follow-up).
"They did not assess the adequacy of the analyses performed, or discuss
plausible alternative explanations for the findings.
"In some cases, they even left out findings from the cited studies that
were inconsistent with their own conclusions.
"They fail to mention that one of their cited studies concluded that the
same prognostic indicators were not valid for CFS vs chronic fatigue
cases.
[see: Outcome and prognosis of patients with chronic fatigue vs chronic
fatigue syndrome. Bombadier CH and Buchwald D. Arch Intern Med
1995:155:2105-10].
"Joyce et al state that ‘Psychiatric disorder is consistently associated
with a poor outcome. Another consistent feature is the patient’s belief in a
physical cause of their symptoms which predicted poor outcome in every study
in which it was measured’ (p 225).
"These statement are then used to discuss opportunities for clinical
intervention as if it is legitimate to assume that the two factors actually
caused poor outcomes.
"In fact, the studies cited by Joyce et al do not yield a
consistent pattern between psychiatric disorder and poor prognosis.
"A diagnosis of somatization disorder (SD) may be so arbitrary as to be
rendered meaningless in controversial illness such as CFS (ref 7 to
response). "Also, in one study, an overwhelming majority of individuals
categorized by the researchers as ‘recovered’ had rated themselves as only
slightly more than halfway recovered.
"Studies and review articles on psychiatric factors and CFS need to be
subject to the same standards of scientific inquiry as studies investigating
organic
factors, lest the theoretical stance of the authors turns out to be the
most powerful predictor of results.
"Not only did the Joyce et al article fail to summarize the psychiatric
literature accurately, it omitted discussion of the many avenues now being
explored on the organic underpinnings of CFS".
(Note that Simon Wessely contacted Dr Hedrick, and that he unequivocally
blamed his peer-reviewers for not having
spotted the points raised by Dr
Hedrick. Dr Hedrick told Wessely that he was hurting the very
people he was supposed to be helping; that he should make it very clear that
patients generally are not recovering; that his data did not support
his conclusions; that he was over-stating his beliefs and that he was
harming people and should back off and take a little more time. Wessely
did his utmost to persuade Dr Hedrick to review his (then) forthcoming book
on CFS, but she declined - personal communication).
Reading about: Chronic Fatigue Syndrome
Simon Wessely. B J Psychiat 1997:171:92-93
Wessely here reviews books on CFS, both professional and "The view from
W.H.Smith".
Unsurprisingly, Wessely promotes his own book "History of Clinical
Psychiatry" (Lutz and Wessely, 1996) which contains two essays on
neurasthenia and chronic fatigue.
He dismisses the Jenkins / Mowbray 1991 textbook (The
Post-viral Fatigue Syndrome: ed. Rachel Jenkins & James Mowbray, 1991: John
Wiley & Sons, Chichester) saying that "it marks the golden age of the
viral hypothesis, and much is now outdated".
He skips over other "professional" books, stating that in 1991,
"the emphasis on virology (that was the year of the persistent virus) is now
dated, but good essays start to emerge on ... psychiatry and management".
He praises the CIBA Foundation book (Chronic Fatigue Syndrome (CIBA
Foundation Symposium) ed Bock GR and Wheelan J. 1993 John Wiley & Sons,
Chichester), claiming that "this time, the essays were of a uniformly
high standard". (see Denigration by Design? for a critique of the paper
by Anthony David).
Wessely states "The Americans have never been particularly sold on the
idea of a persistent viral cause for chronic fatigue (this is true, but
the Americans
differentiate between chronic fatigue and chronic fatigue syndrome)
but instead are enthusiastic for the concept of an immunological
deficit".
He then mentions the book published by The American Psychiatric
Association entitled "Chronic Fatigue and Related Immune Deficiency
Syndromes"(1993) edited by Goodnik F and Klimas N., saying that the title
"did not bode well (as it is) a deliberate echo of AIDS. Unfortunately (or
perhaps fortunately) CFS is not an immune deficiency syndrome".
"In contrast, what soon must be called the ‘Oxford School’ have taken a
broader view, and extend the frame to include chronic fatigue within the
spectrum of medically unexplained syndromes". He then promotes "The
Treatment of Functional Somatic Symptoms" , edited by his close associates
Richard Mayou, Christopher Bass and Michael Sharpe (OUP 1995).
Wessely then states "The most recent serious title also reflects the
weakening of exclusively immunological or virological theories. Edited by
two psychiatrists, Mark Demitrack and Susan Abbey, it concentrates on
psychological and neurobiological aspects of the condition, and also
provides much-needed practical reviews on sensible management".
"I would be failing my co-authors if I did not mention the first
non-edited book, written by myself, Matthew Hotopf and Michael Sharpe
(Wessely et al 1997). We attempt a comprehensive review of chronic fatigue
and its syndromes. Our royalty payments will tell us how successful we
were".
"But there is more. To understand (what is really happening), we have to
go down to W.H.Smith’s. It is in the paperback self-help books that we find
a completely different discourse.
"First, the confessional. Most are written by people drawing on their own
experiences. This gives them the energy to get their message across, and the
required credibility.
"Next, the polemic. The bitterness of being misunderstood, of being
denied a label, or even worse, given the wrong one.
"One can empathise with the hurt of being told there is nothing wrong
when you are suffering, unable to work, unable even to get out of bed.
"Rather more often, the sufferer is told there is something wrong, but
the diagnosis is not to their liking.
"Let’s face it, when sufferers protest about being asked to see one of
us, they are right. Modern psychiatry has little to offer those who do not
hear voices.
(As he is discussing books on ME, one doubts that Wessely was here
referring to those with psychotic illness (who do "hear voices"), it is more
likely that he is again mocking those with true ME who steadfastly refuse to
"hear" what he and his colleagues are preaching, ie. that ME does not
exist).
"After that, all turn to treatment... .the exact permutation varies but
the basic menu remains unchanging (a long list of things to avoid —
chemicals, toxins, certain foods).
"What we are seeing is the rise of modem illnesses. Nearly all include a
guide to the current Zeitgeist, the immune system.
"What is at stake is not an attack on science, but on doctors. We are
being told to get our act together and convert the sufferer’s experience of
illness into the legitimacy of disease.
"We as psychiatrists are the prime obstacle to this endeavour.
Wessely describes Hillary Johnson’s "Osler’s Webb" (Crown
Publishers Inc, New York 1996 but for which he does not bother to provide a
reference) as "nasty". He states that this book "is a warning of the coming
clash between our desire for decision-making on the basis of evidence and
... the opposite demands of consumers and lobbyists". He states that the
book is "a Greek tragedy of a decent scientist who could not face the
possibility that she might be mistaken".
Wessely then states "If you want the facts, turn to the recent report
produced by the three Royal Colleges (1996). It is brief,
evidence based (and) practical" (emphasis added).
Chronic FatiQue Syndrome: a 20th century illness?
Wessely S. Scand J Work Environ Health 1997:23, S3: 17-34
"The chronic fatigue syndrome has become the fin du siecle illness, now
getting similar attention to that of neurasthenia at the turn of the
century.
"Myalgic encephalomyelitis was an early term introduced in the UK in 1957
(for someone who professes to value "evidence based medicine", Wessely
would do well to get his facts right) but it had little or no public or
professional prominence".
"Myalgic encephalolyelitis continues to be the usual label in the UK".
(If a label has lasted for over 40 years, surely this contradicts Wessely’s
claim that the term ME had little or no public or professional prominence).
The "relevant research linking CFS with somatization" is reviewed in this
article. "Understanding the nature of somatization can still shed some light
on the meaning of chronic fatigue at the end of the 20th
century".
When a niggle becomes a pain
Ann Robinson. Guardian: Health:9. 9.97
One person’s headache is another’s imagined brain tumour. So what can we
do to prevent worriers draining the NHS and help them to get on with their
lives?
"Undiagnosable common symptoms that worry people is the biggest single
drain on NHS resources.
"According to Dr Simon Wessely, reader in liaison psychiatry at The
Maudsley Hospital in London.... it is vital that doctors acknowledge that
symptoms can be worrying even if there is no underlying medical cause.
"Professor Richard Mayou, of Oxford University Department of
Psychiatry... believes that for those of us who are not reassured by our
doctor, referral for cognitive behaviour therapy is increasingly being seen
as the answer.
"Dr Wessely says ‘It’s such a shame that at a time when human beings have
never been healthier, we feel sicker than ever".
The prevalence and morbidity of chronic fatigue and chronic fatigue
syndrome: a prospective primary care study
Wessely S, Chalder T et al Am J Public Health 1997:87:9:1449-1455
The authors claim that this study examined the prevalence and public
health impact of chronic fatigue and chronic fatigue syndrome in primary
care patients in England.
Measures included chronic fatigue, psychological morbidity, depression,
anxiety, somatic symptoms, symptoms of chronic fatigue syndrome (ie.
symptoms which the psychiatrists’ believe represented chronic fatigue
syndrome:),functional impairment and psychiatric disorder.
The authors state that "functional impairment was profound and was
associated with psychological disorder"; they conclude that both CF and CFS
are common in primary care patients and represent a considerable public
health burden.
Chronic fatigue syndrome. A practical guide to assessment and
management
Sharpe M; Chalder T, Wessely S et at Gen Hosp Psychiatiy 1997:
19:3:185-199
This is a review of management advice for CFS which focuses exclusively
on the authors’ beliefs about one type of fatigued patient.
In the authors’ view, the patients who cause the greatest clinical
difficulty are those with both severe symptoms and strong beliefs, ie "with
a belief that he / she has a fatiguing illness such as CFS, chronic
fatigue and immune deficiency syndrome (CFIDS) or myalgic encephalomyelitis
(ME)". (Note that "CFIDS" stands not for immune "deficiency" syndrome but
for chronic fatigue and immune dysfunction syndrome, which is
different).
The authors state "The majority of patients seen in specialist clinics
typically believe that their symptoms are the result of an organic disease
process, and resent any suggestion that they are psychological in origin or
psychiatric in nature. Many doctors believe the converse".
The authors state the need to explore the patient’s own understanding of
the illness, as this "forms the basis for education of the patient... .
Beliefs are probable illness-maintaining factors and targets for therapeutic
intervention".
The authors state "Many patients receive financial benefits and payments
which may be contingent on their remaining unwell. Gradual recovery may
therefore pose a threat of financial loss".
"Most sufferers are seeking confirmation of their own intuition that they
are suffering from a particular condition, rather than reassurance that they
are not".
"The (patient) literature is replete with statements such as ‘CFS is a
real illness - it is not psychiatric’ and ‘CFS is a genuine physical
disorder and not a psychiatric problem’ ".
In the section entitled "Presenting Complaints", these authors state that
listening to the patient may "reveal the presence of symptoms other
than fatigue, eg. major depressive disorder", but they make no mention of
any of the well-documented neuroimmunological or neuroendocrine symptoms,
for example, vertigo, relentless frequency of micturition, ataxia,
orthostatic hypotension,
or to untoward hyperimmune response to things which the patient likes,
eg. alcohol, hair loss etc.
The authors are categoric that "a large number of somatic symptoms
suggests a greater likelihood of psychiatric disorder and a poorer outcome".
The authors state "Abnormal physical signs should not be accepted as
compatible with a diagnosis of CFS" (In ME/CFS there is frequently a
positive Romberg sign, for which these authors do not look or else ignore.).
As in other articles, these authors stress the importance of challenging
patients’ rigid ideas, and they stress the need to discourage maladaptive
coping strategies.
They state that patients’ "beliefs" should be treated with "respect",
even when they are inaccurate. (Patients who have attended Wesse/y’s
CFS clinic report that they are aware he is patronising them).
The authors promote their view that the research evidence of
immunological abnormalities is of no clinical significance.
The authors also disapprove of the persistent viral infection model.
They state that "the assessment of possible co-morbid psychiatric
disorder.., is mandatory".
They stress that "treatment" requires that the patients be told the
difference between factors which may have predisposed them to become sick
(listed as "personality"), factors which may have triggered the illness
(listed as "infection, life events") and factors which perpetuate the
illness (listed as inconsistent activity, "misunderstanding of the illness,
and fear of making it worse").
The authors state "Interventions are then aimed at overcoming these
factors".
"The only treatment strategies of proven efficacy are cognitive
behavioural ones... We have developed a more intensive therapy (ie CBT). .
.this form of therapy is acceptable to patients, safe, and more effective
that either standard medical care or relaxation therapy. It has also been
shown to be cost effective".
"An important task of treatment is to return responsibility to the
patient for management and rehabilitation without inducing a sense of guilt,
blame or culpability for his I her predicament".
"It is usually possible to persuade these patients to try
antidepressants... . CFS patients are also markedly sensitive to side
effects so doses need to begin as low as possible".
"Disability systems and insurance agencies are sceptical about CFS.
..much of the self-help literature on both sides of the Atlantic concerns
the iniquities of the various benefits systems".
The authors conclude by claiming that there must be an on-going review of
any ‘catastrophic’ mis-interpretation of symptoms, and that CFS provides an
example for the "positive management of medically unexplained illness in
general". (Note: this article contains a number of factual errors).
Self-help treatment of chronic fatigue in the community: a randomised
controlled trial
Chalder T, Wallace P and Wessely S. Brit J Health Psychol
1997:2:189-197
This study compared 70 patients with "chronic fatigue" with 80
no-treatment controls. The intervention group were assessed and then given a self-help booklet
containing advice about balancing rest and activity. The drop-out rate was 16.6%
The authors claim that 71% of patients in the intervention group said
they had read the booklet and of these, 84% said they found it helpful.
According to the authors, general practitioners should be encouraged to
use self-help literature in the management of patients with chronic fatigue.
Puzzling patients: Annabel Ferriman on how doctors are learning to
deal with unexplained symptoms
Daily Telegraph MagazIne: 25.10.97/Health
This is yet another bouquet for cognitive behaviour therapy by several
close associates of Wessely.
"You see your doctor, list your symptoms... it’s best if the diagnosis is
in Latin... .for some people, however, the symptoms do not go away... .these
people
go to specialist after specialist.., the patient is made to feel a fraud
for having a collection of symptoms that do not fit neatly into a modern
medical diagnosis.
"Some doctors are beginning to get to grips with this problem, which they
say is huge. ‘These patients account for a quarter of general practitioner
consultations, as many as half of outpatient clinic attendances, and many
hospital admissions’ says Dr Michael Sharpe, senior lecturer in
psychological medicine at the Royal Edinburgh Hospital.
"The professionals ... .want to see a greater awareness of unexplained
symptoms because ... . it can result in over-investigation and serious
over-treatment.
"In a recent editorial in the British Medical Journal, Dr Sharpe and
Professor Richard Mayou, of Oxford University’s Department of Psychiatry (of
which Sharpe was a member until his appointment in Edinburgh) outline
what can and should be done for patients with unexplained symptoms.
‘The first step is acknowledging the patient’s problem’ they say. ‘The
second is identifying the factors that perpetuate the illness,
including….misinterpretation of bodily sensations (and) unhelpful coping
behaviour".
"The third step is to make a management plan that targets the most
important of these factors For example, a patient with chronic fatigue may
benefit from information to combat unfounded fears.
"... mood-altering drugs. .can be helpful. For others, therapy can be
useful.
"Cognitive behaviour therapy, in particular, helps patients to think
about their symptoms in a different way...
"Many patients with medically unexplained symptoms (MUS) end up seeing
infectious disease consultants, because GPs think that a virus is
responsible. One such physician, Dr Tim Peto (a signatory to the Oxford
1991 CFS criteria and a member of the joint Royal Colleges’ working party
which produced the much criticised CR54 report on CFS) has made a
particular study of the problem.
"(Dr Peto says) ‘We now have newer methods for helping people to cope,
and the beauty of the cognitive techniques is that they work, whatever the
cause of the disability’. (Compare this with the double blind, placebo
controlled studies which found that CBT is no more effective than a placebo,
eg.Immunologiic and psycholoqic therapy for
patients with chronic fatigue syndrome: a double-blind.
placebo-controlled study.. Lloyd AR et al. Am J Med
1993:94:197-203).
"‘In the long term, tackling this problem properly will save a huge
amount of money for the health service’... Dr Sharpe says.
"What can patients do in this situation? ‘It may mean seeing a
psychologist or psychiatrist, but patients should not be put off by that.
Such professionals may be the most useful people’ (said Dr Sharpe).
Chronic fatigue syndrome and occupational health
A.Mountstephen and M.Sharpe Occup Med 1997:47:4:217-227
Not authored by Wessely, but by his close co-author Michael Sharpe, who
was a signatory to the Oxford 1991 criteria for CFS
The authors claim to review the nature and definition of CFS, the
prinicple aetiologic hypotheses and the evidence concerning prognosis. The
authors state that the conclusions of their review are then applied to the
disability discrimination field. They argue that much can be done to improve
the outcome in CFS, and that the most urgent need is for improved education
and rehabilitation, especially in regard to employment.
The authors state "This paper considers first the nature of CFS and
current views on its causation", but then they immediately ask "What is
fatigue?"
The authors make full use of the opportunity to be dismissive about the
term myalgic encephalomyelitis, stating that it "has been used... .to define
a supposedly specific disease associated with viral infection... .Despite
this, the existence of ME as a specific syndrome remains unestablished
(despite the fact that it is listed in lCD 10) and no specific disease
process has so far been identified. Use of the term is best avoided".
"Psychiatrists on the other hand have tended to assume that patents
complaining of fatigue suffer from a psychological disorder, usually
depression. Where depression was not obvious, it was often considered to be
‘masked’ or ‘atypical’ ".
"At present, a sensible approach is to qualify a diagnosis of CFS by any
coexisting psychiatric syndromes".
"The label of CFS. avoids the ... . connotations of ‘pseudo-disease’
diagnoses such as... ME".
"Patients’ beliefs and behaviour are often a prominent and
important part of the clinical presentation... (which) is most commonly...
.diagnosed in young and middle-aged females".
"... .the role of chronic infection in perpetuating CF~S is doubtful the
evidence for an association between immunologic abnormalities and CFS ...
remains unclear".
"Importantly, current evidence suggests that exercise is not harmful for
people with CFS".
"...‘somatization’ is commonly invoked to explain why patients present
with medically unexplained complaints such as fatigue. It implies that the
symptoms of CFS are caused by emotional distress being expressed
somatically...".
"Both self-help books and the media have tended to emphasise ‘medical’
explanations for the symptoms of CFS at the expenee of more psychiatric or
psychological conceptualisations".
"... CFS may serve as a culturally defined function of social
communication, which allows a socially acceptable. ..expression of
distress".
"For the purpose of planning treatment, illness perpetuating factors are
more important than predisposing or precipitating factors".
"...psychiatric assessment is recommended in every case" (authors’
emphasis). "In most cases of chronic fatigue, few laboratory investigations
are necessary". "Important aspects to be included are the individual’s
beliefs about their illness".
Under "General strategies" of management, the authors state it is basic
"to provide education about the nature of the syndrome to both the patient
and their family... and to encourage a return to normal functioning by
overcoming avoidance. This. .15 a prerequisite to any more specialised form
of treatment".
"To date, (no pharmacological treatments) have been shown to be of proven
efficacy and several are potentially harmful Despite this.., there is some
evidence to support the use of (antidepressants) even in the absence of
definite depressive disorder".
"Exercise therapy... should be considered for patients who are physically
inactive".
"Patients may be reluctant to consider the role of psychological factors
making the application of psychotherapy potentially difficult, but not
impossible... .the only psychological treatment supported by the evidence is
cognitive behavioural therapy (which) is well-fitted to the task of helping
patients to achieve a more helpful view of the illness and to adopt more
effective coping strategies". "A further concern arises where there is the
possibility of exposure to agents in the working environment which may
themselves give rise to symptoms which may resemble those of CFS. ..for this
reason work which may involve potential significant exposure to substances
such as heavy metals or solvents is probably inadvisable for those with
persisting CFS symptoms".
Under "Referrals of existing employees to occupational physicians", the
authors state "referral to multiple ‘specialists’ should be avoided as they
can entrench illness behaviour and make return to work less likely".
"Clearly the sufferer’s beliefs.., will have a powerful effect upon any
such programme (of occupational rehabilitation)".
"..a process of education to address inaccurate and unhelpful attitudes
and beliefs may be a necessary preliminary step".
"Our. .survey of occupational physicians indicated that they sough to
promote rehabilitation of employees with CFS by advising.., an early return
to work".
Under "Eligibility for benefits", these authors state "..the occupational
physician should be aware of the Department of Social security’s current
view on sufferers’ entitlement to Incapacity and Disability benefits where
the diagnosis is one of CFS, the All Work test is likely to be applied..,
those who fail the All Work test would normally be referred to the
Employment Service with a view to a planned programme of rehabilitation".
"The advice of the OLA Advisory Board is that the case for CFS being a
physical disease is unproven".
"The DSS’s Handbook further advises adjudication officers that in CFS
there is unlikely to be a need for assistance with attending to bodily
functions or with mobility unless inactivity has been so severe and
protracted that muscle atrophy has occurred".
"At present, less than I % of successful claims for Severe Disablement
Allowance have a diagnosis of CFS or ME".
Under "CFS and the Disability Discrimination Act", the authors state "It
will be unfortunate if the Act leads to an undue focus on long term
disability at the expense of efforts directed at rehabilitation and
recovery".
Under "A Plan for Action", these authors state "An awareness of the
therapeutic approaches available and the evidence for their effectiveness is
an essential prerequisite (for the occupational physician)".
Randomised controlled trial of graded exercise in patients with the
chronic ftigue syndrome
Fulcher KY and White PD. BMJ 1997:314:1647-52
Note that consultant psychiatrist Peter White was a signatory to the
Oxford 1991 consensus criteria on CFS and was a member of the joint Royal
Colleges’ working group which produced the Report CR54.
This study purports to test the efficacy of graded aerobic exercise
programme in patients with CFS.
Patients met the Oxford criteria for CFS.
The authors claim that graded exercise was more effective than relaxation
and stretching exercises.
Five patients declined to participate and a further five were too ill to
attend as outpatients.
The authors state that "almost three quarters of patients followed up
felt better" and in a similar sample, only 2% reported spontaneous
resolution of fatigue at 18 months: the authors thus claim "hence it is
unlikely that spontaneous improvement would have occurred without
significant exercise in our series".
The authors state "The only other treatment of the chronic fatigue
syndrome to show promise is cognitive behaviour therapy" (citing papers by
Sharpe and Wessely in support of this claim).
The following replies were published:
Graded exercise in chronic fatigue syndrome
Charles Shepherd, Ann Macintyre. BMJ 1997:315:947
In a response to the article by Fulcher & White on graded exercise in CFS
(Randomised controlled trial of graded exercise in patients with the
chronic fatigue syndrome. Fulcher KY, White PD. BMJ 1997:314:1647-1652),
Shepherd and Macintyre of the UKME Association make the folIowing points:
-
- they remain firmly opposed to graded exercise for patients with CFS
which encourage them to increase their levels of physical activity
without making allowances for fluctuating levels of disablement
(ii) they have concerns about the way in which psychiatrist Dr
White’s results have been over-simplified in the media
(iii) their concern is whether the results are as impressive as they
seem; it seems strange that patients in the exercise group who rated
themselves as "better" showed no significant improvement in either peak
oxygen consumption or muscle strength than did other patients
(iv) Shepherd & Macintyre note that no information is provided by the
authors about what percentage of patients had stopped claiming long term
sickness benefit — perhaps the most objective assessment of improvement.
(v) Severely affected patients were excluded from the study.
(vi) Fulcher & White seem to dismiss any possibility that fatigue
could involve underlying physiological or biochemical defects.
Including patients who rated themselves as a little better would have
altered results
Alan J Franklin (ibid)
Dr Franklin (a paediatrician specialising in ME/ CFS) makes the point
that it should be made clear that Fulcher & White were treating a small
subgroup of patients who were well enough to attend an outpatient
department, whereas to most doctors dealing regularly with CFS patients,
such patients are a small proportion (perhaps a tenth) of the total.
Dr Franklin states "Unfortunately, some doctors have trivialised this
illness; ridiculed patients and their supporters; and subjected a few of
them, including children, to oppressive, perhaps even abusive, forms of
treatment".
Patients were selected group
Mike Sadler. (ibid)
Mike Sadler, a consultant in public health medicine, writes:
"Those readers who delve no further than the abstract and key points may
welcome this ‘take home message’. Several flaws in the paper... make
accurate interpretation of the findings difficult.
"Firstly, less than two fifths of those screened for the trial actually
entered it.
"Many of those who did not enter it were excluded on the basis of current
psychiatric disorder, even though the Oxford criteria used by the authors do
not specifically exclude patients with anxiety or depression.
"Given that this is already a subgroup selected by their referral to a
psychiatric outpatient department, to select out those with a current
psychiatric disorder makes them an unusual group indeed.
"In short, for those considering the options for managing this condition,
especially those who commission services, the message should be that we need
more information before we can tell if graded exercise will help most
patients with the chronic fatigue syndrome".
Increased serotonin function in men with chronic fatigue syndrome
M.Sharpe et al BMJ 1997:315:164-165
The authors state that recent neuroendocrine studies suggest that
patients with CFS may have increased brain serotonin activity, and serotonin
pathways have a role in mediating central fatigue.
The authors aimed to measure the increase in plasma prolactin after
administation of the selective serotonin releasing agent D-fenfluramine in
ten men rigorously assessed as having CFS, and in matched healthy controls.
The results "show a significant rise in prolactin responses to D-fenfluramine
in men with narrowly defined CFS".
"This finding supports some, but not all, previous neuroendocrine
studies, and suggests that the CFS is associated with increased brain
serotonin function".
"Though depressive symptoms are common in CFS, patients with major
depression have unchanged or lowered prolactin responses to D-fenfluramine,
making it unlikely that CFS and depression share a common pathophysiology".
Nothing daunted, however, Sharpe et al are minded to conclude:
"Increased prolactin release mediated by serotonin in the CFS might... be
a secondary consequence of behavioural changes such as prolonged
inactivity..".
Treating medically unexplained physical symptoms
EDITORIAL. EDITOR’S CHOICE. Richard Mayou, Professor, Oxford University
Department of Psychiatry and Michael Sharpe, Senior Lecturer, Edinburgh
University Department of Psychiatry. BMJ 1997:3 15: 561-562
(Sub-heading: Effective interventions are available).
"Chest pain, back pain, headache, muscular pains, bowel symptoms,
breathlessness, dizziness, and fatigue often remain unexplained after
medical assessment. Such cases may be referred to as functional syndromes of
chronic fatigue, chronic pain, fibromyalgia and irritable bowel syndrome, or
as somatoform (somatisation) disorders".
"In many cases, the symptoms ... .cause considerable healthcare costs"
(quoting joint Royal Colleges’ Report CR54).
"Evidence for the superiority of new ways of thinking about and managing
such patients is growing".
"Several recently published randomised trials show that new treatments
are both acceptable to patients and more effective than conventional medical
care".
"These new treatments, often referred to as cognitive behavioural
therapies.. .take an approach... (that is) in keeping with the evidence that
the perpetuation of unexplained somatic symptoms is best understood in terms
of... psychological factors...".
"This integrative approach (includes).., identifying .. .the principal
factors that perpetuate illness, including .... misinterpretation of
associated bodily sensations... .unhelpful coping behaviour..."
"Implementation of this new approach will require changes in both medical
practice and the organisation of services".
"Innovative service developments such as joint medical-psychiatric
clinics and dedicated liaison psychiatry... services will provide for
patients who require more intensive treatment".
"The small but conspicuous group of patients who present with recurrent
and multiple physical symptoms will be given pro-active and co-ordinated
care aimed at limiting unnecessary medical intervention".
"If these simple and inexpensive changes in practice and service
provision could improve patient care, why have they not been implemented?
One reason is the widespread lack of awareness that effective evidence-based
treatments are available... . Perhaps the main obstacle to change is the
remarkable persistence
of mind-body dualism overcoming this intellectual obstacle.., will
require changes in doctors’ professional training and a greater dialogue
with colleagues in psychiatry...".
"There are welcome signs of change, as evidenced by the recent royal
college reports".
The relationship between infection and fatigue
EDITORIAL: Peter D.White Journal of Psychosomatic Research
1997:43:4:345-350
The author states that there is no consistent evidence that patients with
CFS have a persistent viral infection.
He promotes his colleague Wessely (referring to "this carefully conducted
study), stating that Wessely found no excess fatigue in those clinically
diagnosed as having an infection six months earlier.
What causes postinfectious fatigue? The "obvious aetiological candidates
are the cytokines... . however, no consistent relationship between the CFS
and cytokines has been found".
"The reduced HPA axis activity may be secondary to the behavioural
changes in CFS".
"The link with stressful life events and CFS may be related to comorbid
psychiatric disorder".
"Premorbid psychological distress, styles of coping, holding a physical
attribution and personality may perpetuate fatigue".
"There is now increasing evidence that chronic fatigue syndromes... are
not maintained by the infectious agent but by a patient’s consequent
adaptation. This adaptation may be mediated by... physical deconditioning...
.Added to this, personality, illness beliefs.., as well as the doctor’s own
beliefs, may influence the long term outcome".
Note that this article relies on 34.8% of references by the author’s
colleagues who hold similar views to his own.
GPs "to blame for problem patients"
John Illman. The Observer, 28.12.97, page 13
"The New Year could be a happy one for thousands of people labelled as
‘heartsink patients’ because of the sinking feeling they give doctors.
"These patients return to the surgery time and time again with baffling
symptoms that defy the best of modern medicine.
"Such people — often dismissed as malingerers or hypochondriacs — are to
be examined with their hospital doctors in a pioneering study that could
turn conventional wisdom on its head.
"They now have influential new allies who believe there are ‘heartsink
doctors’ as well as patients.
"The £190,000 study testing this controversial view is being carried out
by two academics from King’s College, London, Dr Matthew Hotopf and
Professor Simon Wessely, and Professor Martin Knapp, of London’s Institute
of Psychiatry.
"Prof Wessely said ‘We believe doctors create heartsink patients Some
doctors refer patients to colleagues because they don’t know what else to
do.
"The professor’s fears are shared by the Royal College of Physicians
which is worried about the decline of the general physician amid
ever-increasing specialisation, which can make it harder for doctors to see
beyond their academic areas.
(Professor Wessely said) "‘Specialists can become very narrowed and
blinkered. It’s as if they can’t see what lies beyond the endoscope’.
"The researchers will try to find out if patients have been treated by
the appropriate department, what is really wrong, and how much account is
taken of social problems.
"There was initial opposition to the research for fear that it would
further stigmatise the patients. But Prof Wessely said ‘It’ll have the
opposite effect. These patients have complex, unrecognised needs’.
"Typical examples include giddiness, fatigue, indigestion and abdominal
pain.
"Disenchantment with orthodox medicine can make heartsink patients easy
prey for the less reputable fringe therapies". (See the original
Denigration by Design? for an account of Wessely’s
invovlement with Healthwatch, whose stated aim is
to expose fringe therapies" and medical practitioners who do not
subscribe to the Healthwatch ideals of drug-based medicine in all
eventualities).
Letter to John Illman of The Observer
Doris Jones MSc. 30.12.97 (German born and acutely aware of the
atrocities committed on Jews and ethnic minorities during the Nazi era, Mrs
Jones and her mother escaped by a hair’s breadth
transportation to Siberian labour camps at the end of World War II. By a
quirk of fate, Simon Wessely is the son of parents who settled in the UK as
refugees from Nazi-occupied Czechoslovakia, and it is Wessely who now plays
a very active role in determining the fate of countless severely ill and
disabled people in his parents’ country of refuge. Some people have
described Wessely’s treatment of these very sick people as persecution).
"What happened during the dark ages of Nazi Germany along these lines was
later recognised as ‘brain-washing’ people, and the perpetrators were held
accountable after the war.
"Are we about to go full circle for a second time round?
"How much more useful, practical and realistic it would have been to
ensure that all GPs and specialists are given adequate training in
identifying health problems and symptoms due to exposure to toxic chemicals
and pesticides, due to vaccine complications and adverse reactions to drugs,
or even to their synergistic effects".
1998
Talking about the ME generation
Simon Wessely. New Statesman 30 January 1998,pp32-33
Wessely states "Ten years ago I started an NHS clinic for patients
suffering from what was then called ME... .my senior colleagues told me not
to waste my time on a non-existent condition.
"Much has changed. We have just published a book reviewing the history
and current knowledge of the illness" (there follows a promotion for his
book).
"Its publication by that most academic of publishing houses, Oxford
University Press, is a further sign of the change in the response of the
medical and scientific establishment.
"This was further brought home by the unequivocal conclusion of the
recent report from three Royal Colleges, representing the conservative voice
of the profession, that the illness exists". (Wessely makes no mention
that he was so involved with that report, but implies that it was an
independent report which supports his own views).
"Even the name has changed... .we now follow the American lead and use
the more neutral phrase chronic fatigue syndrome (CFS).
"The change of name has helped professional acceptance of the condition.
ME can still induce a rage reaction in consultants and editors... .for
myself, I retain the term ME in the clinic, but use CFS for research...
.doctors now call it CFS".
(Another example of Wessely’s patronisation of patients, many of whom are
doctors themselves,, and most of whom are better acquainted with the
international research literature than Wessely seems to believe).
"Ten years ago the illness was seen as a... mysterious virus that
remained hidden in the body, with a preference for infecting active, middle
class professionals.
"It was the time of HIV, so few could fail to grasp the significance of a
mysterious virus that affected the immune system, which was how ME was then
viewed.
"..exercise programmes have been shown to be safe.
"Ten years ago, our clinic was dominated by doctors, teachers and
nurses... .our fundamental understanding about what lies behind CFS has.
.changed. In our book we devote considerable space to studies of brain
function in CFS. Overall, anyone reading our book is bound to be struck by
the wealth of information that is now available about CFS".
(It is informative to reflect on the percentage for which Wessely et al
are themselves directly responsible).
"We end our book with a discussion of the social background to CFS, and
why it seems to have this unique ability to generate passion and argument.
The answer lies in how doctors, and society at large, decide who is really
sick and who isn’t.
"...CFS patients usually look well cancer patients have a firm
unequivocal diagnosis. Their status as legitmately ill is unchallenged (but
CFS patients) remain in an ambiguous position in their dealings with
doctors, employers and the welfare state".
For reasons, one need look no further than Wessely himself since 1987, he
and his co-authors have done more than anyone else to hinder the
understanding of "pure" ME by his dilution of the ME criteria and by the
senseless refusal to consider the merits of any ME research which reaches
conclusions different from his own beliefs. He may or may not see it
as his personal mission to address and curtail the problem of escalating NHS
and social security costs, but his persistent "persecution" of those with ME
(as distinct from those with ubiquitous ‘chronic fatigue’, for
whom antidepressants, CBT and graded exercise may be of great benefit) is
unacceptable, and his revisionist tactics (ie. his efforts to re-write
medical history by attempting to discredit those clinicians who have spent
their entire professional life dedicated to the study of "pure" ME) defy
credibility. It should not be forgotten, however, that neither the welfare
state nor insurance companies / employers could be held liable to pay
life-long benefit for an illness which does not officially exist (whereas
according to Wessely, "CFS" is amenable to psychotherapy and thus is
treatable; in reality, "true" ME has a very poor Iongterm prognosis, with
consequent healthcare costs). It should also be noted that the
psychiatrists’ endeavours to promote their own discipline to a more accepted
and influential status within mainstream medicine (which currently it does
not have) may also be on Wessely’s agenda.
Chronic fatigue irritation
Julia Napier. New Statesman ,27 February 1998
In response to Wessely’s article, Julia Napier wrote
"I began Simon Wessely’s. .article on chronic fatigue syndrome with the
vested interest of a victim of this tedious affliction, and ended it with
the feeling of irritation bordering on rage.
"Wessely takes pains to quote a "book that advertised itself as the’
Official Handbook of the CFS network’... Why did he not quote from the
genuinely official ‘Report from the National Task Force on CFS,ME and PVFS’?
"I was not surprised to find Wessely’s name on the panel of the
rather unhelpful report of the joint working group of the Royal Colleges of
Physicians, Psychiatrists and General Practitioners, I 996, with its
emphasis on graded exercise and its bias towards psychosomatic disorder.
"I was also disappointed that he made no mention of the recent
publication in the Journal of Interferon and Cytokine Research. July
1997, of a defective
enzyme in all CFS patients tested. The low molecular weight of 2-5A
Dependent RNase L is the best news so far. It means that CFS appears to have
a cause, and everyone can start working on a test and looking for a cure".
BOOK REVIEW: Chronic fatigue and its syndromes
Wessely S, Hotopf M and Sharpe M. Oxford University Press 1998. H/B.
416pp. £65.00
(Review by Dr E.Goudsmit, used here vwith permission).
This is a comprehensive reference text on all aspects of fatigue.
It is not an entirely objective account; the authors’ interest in
inactivity and deconditioning as a major source of CFS is very clear, and
Goudsmit was reminded as early as page 55 that the authors are three male
psychiatrists who basically do not believe what their CFS patients say.
There is certainly a lack of respect for the experiences of patients, and
the reviewer saw no evidence in the book that the authors had realised that
"fatigue" is totally inappropriate to describe the exhaustion and weakness
experienced by people with CFS.
The reviewer also noted an underlying sense of hostility towards patients
and patient groups.
The reviewer stated that the authors continue to perpetuate the myth that
sufferers tend to be stupid, and that every patient responds to fatigue in
the same maladaptive way.
Dr Goudsmit states "You won’t find many references to sensible
individuals, coping with courage and humour, in this tome".
"As far as the aetiology is concerned, these psychiatrists seem to have a
tendency to blame the patient for much of their own disability. Hence the
obsession with the idea that attributions and excessive inactivity are major
determinants of ongoing fatigue.
"To those unfamiliar with the literature on CFS, the text must appear
authoritative and reliable.., but is as unreliable as a party political
broadcast.
attitude, inactivity, illness beliefs, avoidance behaviour,
misinformation and occupational issues get three crosses (signifying an
important role in a grid of perpetuating factors).
"The text mixes the findings on chronic fatigue and chronic fatigue
syndrome, which not only simplifies an extremely complex subject, but also
introduces errors and ends up trivialising CFS.
Dr Goudsmit writes: "I found the book desperately depressing because it
gives such a distorted picture of CFS, the lives of the majority who suffer
from it, and the work of the doctors and researchers from other schools of
thought.
"There isn’t a single study supporting the view that the majority of
people with CFS take ‘excessive rest’ and the authors do not provide any
references from research on ME or CFS to back up their claim... .So much for
evidence-based medicine!
"The authors argue that all studies to date which have assessed the
influence of physical attributions on outcome have shown them to be
‘indicative of a poor prognosis’ (page 370), yet there are studies done by
the authors’ own colleagues (Lawrie et al) which show no such relationship.
"Should we not expect a more balanced and fair representation of the
research?
"As in other writings from this school of thought, there are a number of
factual inaccuracies. ..Professor Wessely has been notified of them and he
knows them to be true.., it serves as an excellent illustration of the lack
of attention to detail which has been criticised before".
Dr Goudsmit ends her review thus:
"...nor can I recommend (this book) to my colleagues, unless they don’t
mind reading unbalanced textbooks which mislead readers, foster an
antagonistic attitude towards patients and contribute to the stigmatisation
of the latter in the process.
"Most importantly, this is not a book on the illness ME. ..as the authors
say on page 137 ‘CFS is more . . .than just fatigue’. Unfortunately, the
rest of the text failed to communicate just how much more".
Medically unexplained neurological symptoms
EDITORIAL: Michael D.O’Brien. Physician for nervous diseases, Guy’s
Hospital. BMJ 1998: 316:564-565
This editorial relates to an article it, the same issue of the BMJ —
see below.
"A psychological component exists in all illness... At the benign end of
this range are patients who describe their symptoms in more florid terms
than seem to be justified. At the malignant end is malingering and the
Munchausen syndrome.
"Between these extremes are a range of patients who present with
non-organic signs or symptoms. ..usually called hysterical conversion
disorder.
"If patients present with apparent non-organic signs or symptoms and are
later found to have an underlying disease which might account for some if
not most of their original problems, this is perceived as a hysterical
elaboration of the underlying deficit.
"Crimlisk et al have looked at... patients who presented with purely
motor symptoms for which no cause was found. ..Only three out of 64 subjects
followed for a mean of six years were subsequently diagnosed as having a
neurological disorder... .this serves . .to emphasis the authors’ conclusion
that patients with medically unexplained motor symptoms and who have been
properly evaluated clinically.., are unlikely on follow up to show evidence
of an underlying disease that might have accounted for the presenting
features.
"Crimlisk et al conclude that repeated investigations for the same
problem are unprofitable.
"At least two other series on conversion disorders have been reported
from the National Hospital for Neurology and Neurosurgery, the most
influential being that of Slater in 1962. ..he identified three groups of
patient. About a third were thought to have a hysterical conversion syndrome
as well as an organic diagnosis, and on follow up, the organic disease
prevailed. About a third were initially thought to have pure hysteria, of
whom eight later developed an organic disease, and about a third had a
psychiatric diagnosis. Twelve deaths occurred, including four suicides.
"Slater concluded that the diagnosis of hysteria was a disguise for
ignorance and a fertile source of clinical error.
"Nevertheless, assuming proper clinical evaluation and negative results
on investigation, the chances of a patient developing a neurological disease
that might have accounted for the original complaint is very small.
"The diagnosis can be reviewed if any new features develop".
Note that there are many references to the fact that cases of ME can
develop into multiple sclerosis (for example, (I) CFIDS Chronicle Spring
1989:3-4, which reported that virologist Dr Jay Levy, well known AIDS
researcher at the Universiy of California presented to the San Francisco
Conference on CFIDS on April 15" 1989 evidence that "CFIDS may be linked to
the ‘eventual development’ of multipIe sclerosis. Levy confirmed that "some
of our patients have eventually developed multiple sclerosis and we are
reminded of the fact that several acute syndromes of viral illness may give
rashes, chronic myalgias, and then, many years later, the same agent may be
responsible for a long-time, debilitating illness"; (ii) Dr E.G. Dowsett,
former President of the UK ME Association and a microbiologist who has
studied "true" ME for over 30 years, believes that 13% of ME patients have
clinically indistinguishable MS also; (iii) one of the former names for ME
was "atypical multiple sclerosis’~ as well as "atypical poliomyelitis" (The
Disease of a Thousand Names. David S.Bell
MD,FAAP. Pollard Publications, Lyndonville, New York 1991).
Sipter revisited: 6 year follow up study of patients with medically
unexplained motor svmptoms
Helen L Crimlisk, Helen Cope, Anthony David, Maria Ron et al BMJ
1998:315:582-586
Note that psychiatrist Anthony David is a very close associate and
frequent co-author of Wessely, and that he is well known for his dismissive
stance on ME; he was a signatory to the Oxford 1991 consensus and was a
member of the joint Royal College’s Report CR54 on CFS. He was also a member
of the 1998 joint working party of the Royal College of Physicians and Royal
College of Psychiatrists on the clinical aspects of long term low dose
exposure to organophosphates (see later). He is a contributor to the
Linbury Trust "research porffolio" on CFS.
The objective of this study was to investigate psychiatric and
neurological morbidity, diagnostic stability, and indicators of prognosis in
patients previously identified as having medically unexplained motor
symptoms. 73 patients were admitted consecutively to the study from
1989-1991. Good 6 year follow- up data were available for 64 of those
subjects.
Unsurprisingly, these particular authors claim that there was a high
incidence of affective, anxiety, somatisation and personality disorders.
The authors feel secure in their belief that there is "high diagnostic
accuracy".
The authors state that "Pending litigation as is often suggested
anecdotally emerged as an indicator of poor prognosis".
They urge that "Treating depression and anxiety aggressively... may
reduce disability in some patients, while for those with several physical
symptoms and personality disorder... cost-effective management strategies
aimed at damage limitation may be more appropriate".
They state "Referral bias may explain the high social class . ..and
chronicity of our cohort".
They conclude "Unlike Slater’s study of 1965, a low incidence of
physical... diagnoses which explained these patients’ symptoms or
disability was found. However, a high level of psychiatric comorbidity
existed... .The stability of the diagnosis in patients with medically
unexplained motor symptoms who have been investigated thoroughly is high".
Putting the rest cure to rest — again
EDITORIAL: EDITOR’S CHOICE. Michael Sharpe Simon Wessely.BMJ
1998:316:796
Subtitled "Rest has no place in treating chronic fatigue"
Once again, Wessely uses different terminologies as interchangable, with
predictable results.
""Go home and rest" is still the advice given to many patients who
complain of chronic fatigue.
"The refrain is echoed in self help books and magazines and adopted by
many patients.
"Chronic fatigue syndromes are not new... by the turn of the century the
same private health clinics that once provided (rest cures) were changing to
more active treatments and to the newer psychotherapies.
"...rest, as a treatment for chronic fatigue, resurfaced recently in
conjunction with the rise in popularity of the diagnosis of myalgic
encephalomyelitis, now called chronic fatigue syndrome.
"Studies of the effects of prolonged inactivity in healthy volunteers
confirmed that the adverse physiological effects are both profound and
prolonged. Furthermore, they include many of the symptoms considered typical
of chronic fatigue syndrome.
"The evidence indicates that patients with chronic fatigue syndrome can
exercise under controlled conditions without risk of damage or relapse".
(There is here a promotion of the Fulcher & White study reviewed above on
pages 94-96).
"Rest is not denied but included in a way that is planned and ... not as
a response to symptoms.
"The Victorians gradually turned their backs on the rest cure. We should
too".
In this editorial, the impression is again given that CFS is a single
entity with a single common pathway and that a single treatment is
appropriate — and safe— for everyone with unexplained chronic
fatigue.
It is also implied that the main problem underlying CFS is excessive
inactivity.
There is only one study which supports the view that some people with CFS
rest excessively: this is the Sharpe et al trial of cognitive behavioural
therapy where modestly disabled patients spent three days a week in bed.
There is no other published evidence which supports the notion of total rest
and complete avoidance of activity throughout the illness.
Blame Mummy for a bad tummy
Daily Mail, 17 April 1998
This item states "Children who complain of persistent stomach aches are
more likely to have over-anxious mothers than a physical illness.
"Professor Simon Wessely of London’s Institute of Psychiatry has carried
out a new study into the matter.
‘Tummy aches are a normal part of childhood but in a small number of
cases it is the failure of anxious mothers to respond appropriately that
reinforces the child’s concern’ he said.
"The BMJ says his study of 73 children with persistent stomach aches
found 71 were perfectly healthy".
Forwarded on behalf of Professor Simon Wesselv I King’s Colleae
Medical
School and Director of the CFS Research Unit (Co Cure
Med. "I run an ME Clinic" Simon Wessely, Guardian, 21.04.98)
This was slightly amended and duly published in The Guardian on 21 April
1998, Section 2, pp 14-15 under the title:
No-name illness. ME or yuppie flu, has never been fully accepted as a
real condition, says Simon Wessely.
"I love studying people’s reactions when I tell them I run a clinic for
patients suffering from ME - their responses tell you much about why this
illness is both so difficult and so fascinating.
"If I am talking to general practitioners, the usual reaction is .. .the
medical equivalent of ‘you poor thing’.
"This is followed by an invitation to review one or more of the doctor’s
more intractable patients.
"If I say the same thing at some academic gathering of professors and
other high ups in the medical firmament, the reaction is different—’Good
God, old fellow, can’t you think of something better to do — these people
aren’t really ill you know’.
"But what happens when I make the same announcement at a London dinner
party? First, someone around the table has a relative or friend with the
condition and takes the opportunity of unburdening themselves of the
difficulties their friend has had with employers, the medical profession and
the various parts of the welfare state...
"Next, someone points out ‘but you are a psychiatrist aren’t you — why do
you see ME patients?’
"Doctors rarely say that, instead being divided between those who agree
psychiatrists should be seeing such patients, and those who think no-one
should be.
"Should doctors see ME patients? Should we call it ME at all?
"This week we publish a book (see pp 103-104 above: it was published
on 2~ March 1998) in which we attempt to answer all these questions
except for the last.
"We don’t know what causes it. We are rather better at saying what
doesn’t cause it. We know now that, contrary to the views expressed some
years ago, that it is not due to a virus that doesn’t go away... .long term
ill health is not due to viral persistence.
"I notice as I write this piece, I seem to be switching between ME and
CFS. ME is the term that dominates the clinics and media... doctors talk and
write about CFS. Many doctors still can’t bring themselves to utter the word
ME.
"Both ME and CFS are new terms - you will struggle to find them in the
medical journals much before 1980. (This is substantially untrue: the
term ME was in common usage in the medical literature from 1956).
"On the way home from the dinner party my wife often says ‘Why did you
tell them what you do?’. I am not sure myself, but there is one thing I
always wish I had got across... now doctors and patient groups alike
emphasise the drawbacks of rest.. .the research community, of which I am
proud to be a member, has now contributed a series of studies showing that
more active rehabilitation programmes are not only safe, but also effective
in reducing symptoms and disability".
Is ME real or in the mind
Dr Thomas Stuttaford. The Times, 7 May 1998, p20
This is yet another promotion for Wessely’s book, full details of which
are listed at the end of the article.
"George Beard, the I ~ century doctor, started his account of
neurasthenia, published in 1869, with the words ‘fatigue is the Central
Africa of medicine, an unexplored territory which few men enter’.
"Neurasthenia was the chronic fatigue syndrome - or ME — of its day.
"Dr Simon Wessely, Professor Matthew Hotopf... and Dr Michael Sharpe
start their own book Chronic Fatigue and its Syndromes with Beard’s
observation.
"These three psychiatrists have made a special study of chronic fatigue
syndrome (CFS), sometimes referred to as ME. They are in a favoured position
to write about the condition, as their expertise is accepted by most people.
"The book .. . examines the evidence which could support an organic cause
and gives detailed advice on the best way for doctors to treat patients.
"The authors even give examples of phrases those in the medical
profession use that are guaranteed to alienate the sufferer.
"Neurasthenia was originally a disease which, almost by definition, could
only affect hard-working members of the officer class. Later, it sank in
social prestige and became... an excuse of the "worthless poor" who had
neither the ability nor desire to work.
"Everything changed in 1956, when an outbreak of ME attacked staff at the
Royal Free Hospital in London. This re-opened the long-dead neurasthenia
debate.
"Times readers will remember Professor Wessely’s regular features in
the paper. Professor Wessely and his colleagues have writfen their book in
similar style, full of interest, witticisms and apposite phrases.
"Those with an interest in CFS in particular... will enjoy learning from
their account of the inter-relationship between fatigue, anxiety, stress and
depression.
"Everybody would benefit from understanding that psychological conditions
may cause physical symptoms every bit as disabling and real as those which
result from viruses, bacteria or environmental toxins".
Clinics in Controversy: Chronic Fatigue Syndrome.
Anthony J. Cleare Simon C.Wessely Update 20 May 1998:1016-1026
"Three royal colleges endorsed unequivocally the existence of chronic
fatigue syndrome (CFS) in 1996— in a multi-disciplinary, evidence-based
report acknowledging the suffering that CFS can cause...
"It would be nice to think, therefore, that the controversy about CFS had
begun to settle. Sadly, it is far from over.
"CFS, sometimes known as ME, continues to be the subject of dispute
between doctors and patients, and even between editorial writers of the most
distinguished journals. The royal college’s report was greeted with high
praise by the BMJ — and in the same week was condemned by The
Lancet.
"Persistent fatigue is seen commonly in general practice.
"Research concentrates on the syndrome of CFS.... There is as yet no
evidence that this is a discrete disorder. It may be better understood as
the extreme end of a spectrum that starts with ‘feeling tired all the time’.
"Many people suggest that the condition should be called ME, but doctors
and the editors of the journals have taken a firm stand against this label.
"Some claim that there are differences between CFS and ME, the main one
being that the former is a psychological condition, the latter physical.
"There is no evidence to support this division.
"...a controlled prospective study (Wessely’s own 1995 study)
(found) that those who ended up with CFS were more likely to have suffered
fatigue or psychological distress before they presented with the viral
infection.
"Previous psychiatric disorder... increased the likelihood of chronic
fatigue after severe viral infection.
"The GPs response may also be important. A sick note and unclear
diagnosis are both associated with development of CFS.
"Rates of depression and anxiety are much higher in these patients than
in those with physical disorders causing comparable disability, suggesting
that this is not a secondary phenonmenon.
"... psychological factors may be important in perpetuating CFS,
regardless of whether formal diagnostic criteria for psychological disorders
are met.
"CFS patients seen in specialist clinics commonly show characteristic
type A personality traits, such as perfectionism and over-achievement.
"Such observations may reflect the desire to be seen as psychologically
robust; or these traits may be associated with obtaining referral to a
specialist clinic.
"Preliminary evidence from our group and from the USA suggests that a
very low dose of cortisol (hydrocortisone)... alleviates fatigue symptoms in
a minority of non-depressed CFS patients. (Note that Professor Anthony
Komaroff of the USA recorded that "The finding of
slightly low circulating levels of
cortisol in oatients with CFS led investigators
at the NIH to conduct a randomized trial
of low dose reolacement the raov.. ..
It did not find a clear benefit.
Clinical Crossroads. Anthony L.Komaroff. JAMA 1997:278:14:1179-1185. See pp
19-21 above. Also, Demitrack et al from the USA concluded that the degree of
adrenal suppression from low dose hydrocortisone in CFS precludes its use
— see Low dose hydrocortisone for treatment of CFS: a randomised
controlled trial. McKenzie R, Dale J and Demitrack M. JAMA
1998:280:(12):1061-6. See pp 35-36 above).
"Several studies have used neuro-imaging techniques to study cerebral
blood flow in CFS. A number of abnormalities have been found, including
lowered perfusion of the brain stem and frontal lobes, but some studies have
suggested that alternative illnesses were diagnosable in those with
abnormalities: the relationship with depression remains unclear. (Wessely
quotes a 1996 JNNP paper by Helen Cope and Anthony David, which was
dismissive about neuro-Imaging in CFS — see Denigration by
Design? lAppendix VI)
"Until these findings have been replicated, the results must be treated
with some caution.
(The results have been replicated and were presented at the 1996
AACFS Conference by Dr M. Tavio from Aviano in Italy, who found decreased
brain metabolism in CFS patients; he found the greatest impairment to be in
the right medial frontal cortex and the brain stem. (PET: A Useful Tool for
Differential Diagnosis. M. Tavio. CFIDS Chronicle 1997:10:1:75). The results
have also been replicated (1998) by D.di Giuda and D.Racciatti et al, who
found brainstem hypoperfusion in 83.9% of CFS patients studied, and
concluded that their study confirmed previous reports of brain perfusion
impairment in CFS, providing objective evidence of central
nervous system dysfunction — see pp3O-31 above).
"Several cognitive and behavioural factors may be important in
maintaining fatigue and disability when fatigue becomes chronic:
Inactivity.., several studies have shown that coping with symptoms by
avoidance behaviour is associated with worse disability... . Inconsistent
activity... .this stop-start pattern means sufferers are unable to build
up a sustained level of recovery... . Symptom focusing... many
patients have come to rely on day -to -day monitoring of their own symptoms
— ‘listening to their body’ — as the best method of determining activity
levels. Symptoms are often interpreted as ‘warning signals’... Increased
concern leads to heightened awareness, selective attention and ‘body
watching’, which can then Intensify both the experience and the perceived
frequency of symptoms, thereby confirming illness beliefs and reinforcing
disability. Emotional consequences: depression and anxiety are
strongly associated with fatigue, muscle pain, impaired memory and
concentration, and reduced activity.
"... a series of prognostic studies makes gloomy reading. However, the
findings may be misleading. The studies involved specialist centres, where
patients were from high social classes, had long illness durations and often
fixed illness beliefs. Patients with CFS in primary care do not share these
characteristics, and may have a better outcome.
Again, these authors then urge the use of graded exercise, CBT and
antidepressants as "effective" treatments for CFS.
Note that Anthony Cleare is supported by The Linbury Trust.
Reviewing the reviews: the example of chronic fatigue
syndrome
Joyce J; Rabe-Hesketh 8; Wessely S. JAMA 1998:28: (3):264-266
The stated objective was to test the hypothesis that the selection of the
literature in review articles is influenced by the authors’ discipline and
country of residence.
Sources were articles published in English published between 1980 and
March
1996.
These authors found that authors from laboratory-based disciplines
preferentially cited laboratory references, while psychiatry-based
disciplines preferentially cited psychiatric references.
Wessely et al concluded that "Citation of the literature is influenced by
review authors’ discipline and nationality".
Screening instruments for psychiatric morbidity in chronic fatigue
syndrome Richard K Morriss Alison J Wearden JRSM 1998:91:365-368
Not by Wessely, but by one of his non-medical colleagues Alison Wearden,
this is an interesting paper in that it purports to understand that whilst
physicians need a screening instrument to detect psychiatric disorders in
CFS, one of those instruments (the Medical Outcome Survey / MOS) mental
health scale yielded too many false positives to be recommended as a
psychiatric screening test in CFS.
Illness beliefs and treatment outcome in chronic fatigue syndrome
Deale A; Chalder T; Wessely S. J Psychsom Res 1998:45: (1 Spec No,):77-83
The authors claim that longitudinal studies have shown that physical
illness attributions are associated with poor prognosis in CFS.
Speculation exists over whether such attributions influence treatment
outcome.
This study purports to report the effect of illness beliefs on outcome in
a randomised controlled trial of CBT versus relaxation.
Physical illness attrIbutions were widespread, and did not change with
treatment, and were not associated with poor outcome in either the CBT group
or the control group.
The authors conclude that their findings suggest that physical illness
attributions are less important in determining outcome than has been
previously thought.
Nevertheless, the authors state that good outcome is associated with
change in avoidance behaviour and related beliefs (rather than causal
attributions).
Results are contradictory for patients meeting different diagnostic
criteria Riccardo Baschetti. BMJ 1998:317:600
(Response to article "Putting the rest cure to rest — again" by
Michael Sharpe & Simon Wessely: see pp 107-108 above)
Riccardo Baschetti from Padua, Italy, (well known for his views on the
similarities between CFS and Addison’s disease), made the following points:
"To support their view that exercise is useful in treating chronic
fatigue, Sharpe and Wessely cite a study that showed the beneficial effects
of graded exercise in patients fulfilling the Oxford criteria for the
chronic fatigue syndrome.
"To show that psychotherapy is aIso important in treating chronic
fatigue, Sharpe and Wessely cite two studies that found cognitive behaviour
therapy to be effective in patients fulfilling the Oxford criteria.
"However, such therapy has been found to be ineffective for patients
meeting other diagnostic criteria. (Baschetti cites the Lloyd et al paper
in Am J Med 1993:94:197-203: Immunologic and psychologic therapy for
patients with CFS: a double blind, placebo-controlled trial).
"Additionally, evidence has recently been reported that patients
fulfilling the Oxford criteria have increased concentrations of cortisol,
whereas hypocortisolaemia is a consistent finding in patients meeting the
original criteria.
"In view of these striking discrepancies, it seems likely that the
researchers who adopt the Oxford criteria and those who adopt the original
criteria are actually investigating two quite different clinical entities.
"The CFS diagnosed on the basis of the original criteria is extremely
similar to adrenal insufficiency: these illnesses share 20 features.
"However, the CFS diagnosed on the basis of the Oxford criteria is more
similar to depression: in both conditions, there is decreased cortisol
concentration.
"Of course, if tow different medical conditions have the same name ...
.we can only expect the confusion, controversy and discrepant findings that
have so far characterised research on CFS".
Randomised, double-blind.placebo-controlled treatment trial of
fluoxetine and araded exercise for chronic fatigue syndrome
Wearden AJ; Pearson DJ: Morriss JA et al Brit J Psychiat
1998:172:485-490
Patients with CFS (Oxford criteria), of whom 46% had current psychiatric
disorders were randomly assigned to four groups:
(i) n=33 —graded exercise plus fluoxetine 20mg
(ii) n=34 —graded exercise plus drug placebo
(iii) n=35 —exercise when able, rest when needed plus fluoxetine
(iv) n=34 —exercise placebo (exercise when able, rest when needed)
plus drug placebo.
The number of drop outs was high (n=40 / 29.5%).
Subjects were assessed at baseline and after 12 and 26 weeks.
The authors claim that graded exercise significantly improved functional
work capacity but not fatigue, and that fluoxetine was associated with lower
depression scores at week 12 but had no effect on fatigue.
Exercise did not improve depression.
The authors suggest that graded activity may provide patients with the
reassurance that exercise at a controlled rate need not exacerbate fatigue.
Commentary by Deal A; Chalder T and Wessely S
These commentators note the "modest" effects, which they attribute to
behaviour change as a result of which there was a cognitive shift away from
fear and avoidance.
Doctors’ Diagnoses and Patients’ Perceptions: Lessons from Chronic
Fatigue Syndrome
EDITORIAL: Michael Sharpe. Gen Hosp Psychiat 1998:20:335-338
This seems to be yet another essay on psychiatric circularity, with which
this same group of psychiatrists continually flood the medical literature.
It begins with the "neurasthenia as the Central Africa of medicine"
theme, and Sharpe states "Much of what Beard wrote (in 1880) could
well be applied to the more modern medical conditions chronic fatigue
syndrome (CFS) and the overlapping fibromyalgia syndrome".
Again, there is obfuscation of terminologies, with almost no
consideration or inclusion for discussion of the cardinal features of true
ME.
Sharpe pronounces that "there is controversy and conflict — controversy
among physicians over the use of medical labels for medically unexplained
illness and conflict between physicians and their patients over psychiatric
diagnoses".
"If we assume that no pathophsyiological mechanism has so far been
reliably identified and that all the medical diagnoses for chronic fatigue
are essentially descriptive labels, what is our choice? Available "medical"
diagnoses... include "biological" connotations such as chronic fatigue and
immune dysfunction syndrome (CFIDS) For many patients, the more clearly
"biomedical" the diagnosis is, the more likely they are to welcome it.
(Sharpe here relies on a reference (8) which is based on a study
of CFS in women, about which he writes "One such report appears in the
previous issue of this journal", but he is unable to supply the citation,
which suggests he had seen a pre-publication copy).
"…studies suggest that these patients want a medical diagnosis for a
number of reasons. First, it allows them to negotiate reduced demands and
increased care from family, friends and employer".
(Sharpe makes no mention of the many patients whose marriage has failed
due to ME, nor to those who have lost their professional career (and
consequent financial security) and are now unemployed because of ME, nor
does he mention that one of the biggest difficulties faced by those with ME
is gross social isolation and loneliness: he does not include for
consideration the fact that many patients simply do not have any opportunity
to "negotiate reduced demands or increased care" from anyone).
"Without such a diagnosis, the patient is open to the social stigma of
psychiatric illness.
"In short, (a biomedical label) admits them to a bona fide "sick role".
"Second, it may open the way for practical help in terms of financial and
other benefits from government, employers and insurers.
"Why are many physicians reluctant to provide a medical diagnosis?
"Two main disadvantages are suggested. The first is that to make such a
diagnosis, especially if it is suggested by the patient, threatens the
physician because it reduces his or her power in the transaction... .and may
risk the censure of peers.
"The second ... is the physician’s fear that he I she may
influence the patient’s perception of his symptoms. ..by increasing anxiety
over the ramifications of symptoms and encouraging excessive avoidance and
"illness behaviour".
"Furthermore, there is evidence that patients with CFS who believe their
condition is "purely medical" have a worse outcome.
(Sharpe here relies on the much criticised paper "The prognosis of
chronic fatigue and chronic fatigue syndrome: a systematic review" by Joyce
J, Hotopf M and Wessely S / QJM 1997: 90(3):223-233; see pp8l-83 above,
which unequivocally reveals the psychiatrists’ circularity of promoting and
relying on each others’ papers in supposedly independent support of their
own work).
"The alternative (to giving the patients a "biomedical" label) is to
eschew the medical diagnosis of CFS and instead, seek a psychiatric
diagnosis.
"The application of (this) may give the physician the satisfaction of
having maintained "medical integrity" and applied a label of which most of
his peers would approve.
"The problem is that many patients not only fail to accept this diagnosis
but respond to it with frank hostility because a psychiatric diagnosis...
.may offer lower financial benefits.
"Many of us may feel that it is not helpful to give a patients a medical
diagnosis of CFIDS or ME.
"There may be.. benefit in helping patients to change unhelpful
beliefs... Cognitive behaviour therapy for patients with CFS have shown a
substantial improvement.., that is associated with a change in beliefs about
their illness.
(Here Sharpe relies on yet more circular self-references).
"For many patients, obtaining an acceptable diagnosis becomes their main
preoccupation.
Sharpe concludes by urging greater collaboration between liaison
psychiatrists and "our more biomedically oriented colleagues" about the
virtues of psychotherapy.
Chronic fatigue syndrome
JB Wright DW Beverly Arch Dis Child 1998: 79:168-174
Whilst not authored by those In the innermost circle of the "Wessely
school", this paper carries 33 references by those Who subscribe to their
views.
"The media has shown some interest in children with chronic fatigue
syndrome... it is thus prudent to consider what current research tells us,
particularly when there Is an apparent disparity of views about the illness
betwaen parents, support groups, and professionals.
"This review seeks to delineate our knowledge from published work as It
currently stands".
These authors then trawl through the "neurasthenia" perspective, and note
that such people were described as "sofa cases".
The authors are clearly In support of the joint Royal College’s report
CR54.
The authors note that the CDC criteria have been "updated specifically,
this involved dropping all the physical signs from the Inclusion criteria".
"Some workers have rightly pointed out that the illness behaviours (sic)
of children may be significantly influenced by parental expectations and
responses.
"The finding that enteroviral RNA has been discovered In muscle biopsy
material of some patients has riot been significant when case controlled
designs have been used.
"The infective argument ... .Is difficult to sustain In the absence of..
persistent infection markers.
"Similarly, the finding that there is hypoperfusion of the brain in CFS
does not exclude excessive rest and inactivity as a cause".
"Findings have often (sic) not been replicated... some
commentators have sought to explain the findings as arising from
inactivity... .there is considerable evidence to support this view.
"Whatever establishes the onset of this Illness, It has been suggested
that an interplay Of social, psychological and physical factors maintains
and perpetuates it.
"It Is prudent to examine some of these maintaining factors.
"In children, such issues are influenced by family factors. These include
over-protectiveness, over-involvement, a powerful commitment by parents
either to the notion of the illness (for example, "ME") as an untreatable
physical disorder, or to a self-help group that rejects rehabilitative
interventions.
"Some workers have suggested that ...the syndrome reveals more about the
emotional needs of the parents than the child, and that a variant of
Munchausen by proxy may be "ME by proxy".
(The reference relied upon for the above claim is a 1992 one by Professor
Elena Garralda, professor of child and adolescent psychiatry at St Mary’s
Medical School, London, and a member of the working group who produced the
joint Royal Colleges’ Report CR54).
"Clusters may be related to... the modelling of responses to illness
within the family or in communities.
"Some workers have drawn parallels with (the) understanding of conversion
disorders... a child may find himself or herself in a predicament that needs
an illness to resolve it, and an ally (such as a parent) who helps to
perpetuate the illness.
"Some workers report adolescents with high standards and an emphasis on
achievement, or highly successful adolescents unable to sustain early
excellence.
"Depression is associated with CFS in 60-80% of children. Many people
with fatigue have psychiatric symptoms and illnesses those with depression
are more likely to have somatic symptoms and somatisation is a feature that
is reported in association with CFS in children.
"Some children and their families become locked into a belief system that
encourages... adoption of the sick role and withdrawal from social activity
and school.
"Many physicians appear to continue recommending long term rest. Rest
(leads to) a misplaced confirmation of serious illness.
"All of these issues (rest, adoption of the sick role, withdrawal)
together with associated dependence and despondency, help to perpetuate the
illness.
"(Management) in CFS means a shift away from an exclusively physical
understanding of the illness".
These authors recommend "a new approach", which does not allow the
physical, psychological and social elements to be split and which they
describe as "psychoeducational", stressing that "it will be important to
explain the vicious cycles involved".
"A graded and gradual increase in exercise ... and rehabilitation is now
encouraged by most experienced clinicians.
"As with adult studies, the intention is to... renegotiate beliefs that
have resulted in detrimental coping behaviours.
"Lask (a paediatnc psychiatrist at Great Ormond Street Hospital,
London, who was involved in the tragic case of Ean Proctor and who did not
accept the diagnosis of severe ME made by consultant neurologist Dr J Morgan
Hughes:
see Denigration by Desion. page 65) and Dillon
have made the point that often children who do not improve are those with
parents who are unwilling or unable to accept or co-operate with treatment.
"Home tuition may interfere with a return to school.
"Some children are lost to follow up because of resistance from the
children themselves or their families, and this may be as high as 40%. This
may in part be related to the family or child’s belief that the illness is
exclusively physical.
"It is true that the minority of children who need to be admitted to a
paediatric ward may have a less favourable prognosis. In one series,
approximately 30% of this group ware shown to have symptoms resistant to
treatment that persisted for years.
"Chronic fatigue syndrome ... carries significant resource implications
for both the community and the health service".
