Margaret Williams 28th October 2013:
Professor Sir Simon Wessely – Right or
Wrong?
Margaret Williams 28th October
2013
When a professional person – especially a doctor – has
repeatedly been shown to be wrong in their professional judgment and, as a
direct consequence, people have been harmed, that doctor should surely be held
personally responsible and accountable: in such circumstances legitimate
criticism should not be dismissed as an ad hominem (personal)
attack.
Following the award of the inaugural John Maddox Prize to
psychiatrist Professor Sir Simon Wessely for his
alleged “courage” in “standing up for science” and for promoting
“sound science” about ME/CFS in the face of “hostility” in doing
so, a letter published on 13th January 2013 by the Countess of Mar,
Professor Malcolm Hooper and Dr William Weir in The Independent on Sunday was
explicit that criticism of Wessely’s hypothesis about ME/CFS is scientifically
legitimate:
“Scientific understanding always depends upon sound evidence….For
scientific understanding to prevail, the extensive biomedical evidence-base of
ME/CFS must now be recognised by all researchers in the field. The idea that
ME/CFS is due to a dysfunctional psyche is a hypothesis without an
evidence-base. The Maddox Prize was therefore awarded to the defender of an
hypothesis with no evidence-base rather than to someone who was upholding true
scientific inquiry. Personal attacks against Professor Sir Simon Wessely do not
advance the cause, but it is scientifically legitimate to direct criticism at
the hypothesis both he and Professor White (chief Principal Investigator of
the MRC’s PACE trial on ME/CFS) continue to espouse”.
It has been shown time and again that Professor Sir Simon’s
published assertions about disorders such as ME/CFS, fibromyalgia, Gulf War
Syndrome, the Camelford drinking water poisoning, and interstitial cystitis are
simply wrong. Merely stating so is likely to result in yet more claims by him of
“harassment” and “attack” upon him but, in the words of Professor Martin Bland,
one of the UK’s leading medical statisticians, it is important that false
information should not remain on the record to be quoted uncritically by others:
“Potentially incorrect conclusions, based on faulty analysis, should not be
allowed to remain in the literature to be cited uncritically by
others” (Fatigue and psychological distress. BMJ: 19th February
2000:320:515-516). Wessely’s “incorrect conclusions”, however, remain in the
literature to be cited uncritically by others and therefore may result in
iatrogenic harm.
ME/CFS
For over 25 years
Wessely’s dismissal and rejection of the biomedical evidence on ME has continued
unabated, even though there is substantial evidence of on-going inflammation
throughout the body; systems prominently affected are the central and autonomic
nervous systems, the immune system and the cardiovascular, endocrine,
gastro-intestinal and musculoskeletal systems.
Unscientifically,
he conflates ME, CFS, PVFS and chronic “fatigue” into what he refers to as
“CFS”. This has become a waste-basket label, with 40% of those afforded it
subsequently being shown to have other diagnoses (J R Coll Physicians Edinb,
2010:40(4):304-307).
Despite the
extensive biomedical evidence that shows him to be wrong, Wessely is certain
that he is right: he believes that ME/CFS is a behavioural disorder that should
be managed with “cognitive restructuring” specifically designed to
convince sufferers that they are not physically sick.
Indeed In October
2003, in a frenzied attack on people with ME and on those scientists and
clinicians who regard it as an organic disorder, Wessely raged that those who
disagree with him and believe ME to be an organic disorder (to whom he referred
as “the radicals”) are “crazy” and that they are “engaged in
fantasies, lies and gross distortions”. He wrote that
the “radicals” are left “fighting yesterday’s battles” (seemingly
because he believes he has established that ME does not exist except as a false
illness belief), that they need a “reality check” and that “their
behaviour is outrageous”(private communication; available to Medical Defence
Union lawyers on legitimate request).
Ten years later,
his views have not progressed in line with the advancement of medical science:
at a medical meeting in March 2013 held in Bristol, Wessely informed attendees
that ME has been caused almost entirely by what he called
the “shockingly” negative way in which some ME charities, in particular
the ME Association, portray it as a viral illness, saying that this has harmed
patients as it encourages them to focus too much on symptoms and to be fearful
of activity, resulting in a vicious cycle of deconditioning. Making no
distinction between chronic “fatigue” and ME/CFS, doctors were assured by
Wessely that all patients with CFS would benefit from the same management
regime, namely behavioural therapy and exercise (Research in Chronic Fatigue
Syndrome – ups and downs; Bristol Medico-Chirurgical Society;
13th March 2013: approved as a Continuing Medical Education
module).
The continued
propagation of such erroneous beliefs is a matter of significant concern because
of their potential harm to very sick people, so it may be appropriate to
re-consider the evidence that proves Professor Sir Simon to be wrong about four
other issues as well: fibromyalgia, Gulf War Syndrome, the Camelford poisoning
tragedy, and interstitial cystitis.
Fibromyalgia
As with ME/CFS, Simon Wessely believes that fibromyalgia (FM) is
a functional somatic disorder (Lancet 1999:354:936-939), despite the fact that
FM is formally classified in the World Heath Organisation’s ICD-10 at M79 as a
soft tissue disorder. FM was officially recognised as a syndrome on
1st January 1993 by the WHO as a result of the Copenhagen Declaration
(Consensus Document on Fibromyalgia: The Copenhagen Declaration 1992). It is a
systemic disorder and affects not only the muscles – including the heart – but
also the gut and immune system, and these are all recognised features of
FM.
Israeli
researchers have pointed out that FM is believed to be the result of a central
nervous system malfunction and emphasised that: “many of the differential
diagnoses can be excluded by means of an extensive clinical examination and
patient history” (Autoimmun Rev 2012 Jun:11(8)585-588), but Wessely advises
against extensive clinical examination, claiming that it supports patients’
false beliefs that they are physically ill.
Whilst Wessely
has not changed his position that fibromyalgia is but one part of a unified
functional somatic syndrome, medical science has shown that in fibromyalgia,
there is objective evidence of:
· abnormal nerve
fibres in the skin, showing enlarged Schwann cells which relay information from
tissues to brain and produce cytokines, resulting in pain (Clin Rheumatol
2008:27:407-411)
· central nervous
system malfunction which increases pain transmission and perception (Autoimmun
Rev, June 2012)
· autoimmune
thyroid disease being highly associated with fibromyalgia (J Rheumatol, June
2012)
· overlap with
inflammatory back pain (Clin Exp Rheumatol, August 2012)
· interstitial
cystitis and irritable bowel syndrome as co-morbidities (Front Neurosci, August
2012)
· altered cerebral
blood flow dynamics with an enhanced haemodynamic response (Psychosom Med, Sept
2012)
· self-management
programmes being ineffective (BMC Musculoskelet Disord, September
2012)
· inflammatory
dysregulation (Neuroimmunomodulation, Sept 2012)
· neuromuscular
fatigue and lowered exercise capacity (Arthritis Care Res, September
2012)
· mitochondrial
dysfunction (Antioxid Redox Signal, Sept 2012)
· small-fibre
polyneuropathy with evidence of nerve loss (American Neurological Association
137th Annual Meeting in partnership with the Association of British
Neurologists; Abstract W1409; 7-9thOctober 2012)
· abnormally high
muscle membrane conduction velocity (Clin Exp Rheumatol 2012: November
22)
· FM commonly
occurring in patients with autoimmune disorders such as lupus, Sjogren’s
Syndrome and rheumatoid arthritis (BMC Clinical Pathology,
17th December 2012:12:25)
· aberrant
expression of immune mediators (cytokines), with impairment of cell-mediated
immunity, providing evidence that FM is an immunological disorder which occurs
independently of any subjective features (BMC Clinical Pathology,
17th December 2012:12:25)
· hearing
difficulties, hair loss and easy bruising (Clin Exp Rheumatol
2012:30:S88-S93)
· impaired
small-fibre function, pointing towards a neuropathic nature of pain in FM (http://brain.oxfordjournals.org/content/early/2013/03/09/brain.awt053.short)
· biochemical
differences (changes in tryptophan catabolism pathway) that are quite
distinctive from those found in osteoarthritis or rheumatoid arthritis (Analyst
Issue 16, 2013)
· a mismanaged
blood flow and low levels of inflammation, with a unique peripheral
neurovascular pathology consisting of excessive peptidergic sensory innervation
of cutaneous arteriole-venule shunts (AVS) in the skin of FM patients confirmed
by multimolecular immunocytochemistry, with blood flow dysregulation as a result
of excessive innervation to AVS contributing to widespread deep pain and fatigue
(Pain Medicine: June 2013:14:6:895-915)
· heart rate
variability (HRV) aberrances, indices of increased sympathetic activity and a
blunted autonomic response to stressors (Semin Arthritis Rheum
2013:6th July)
In addition to
these demonstrable abnormalities, there is no objective link to psychiatric
disease in fibromyalgia (BMC Clinical Pathology 2012:12:25) and furthermore,
there is evidence that the use of antidepressants in long-term treatment of
fibromyalgia resulted in a worse impact of the disease on patients’ daily lives,
with worsened quality of life and deterioration in long-term management (Clin
Pract Epidemiol Ment Health 2013:9:120-124).
Evidentially,
Wessely’s aberrant belief that fibromyalgia is but one component of a single
functional somatic syndrome has been vitiated and he has been proved
wrong.
Gulf War Syndrome
Simon Wessely was knighted in the 2013 New Year Honours List for
his work on “military health”; he is civilian psychiatric advisor to the UK
Ministry of Defence where, despite his having no case definition of Gulf War
Syndrome (GWS), he has consistently denied its existence, ascribing it to
“stress of combat” and to a “belief” of exposure to a chemical
attack (Lancet: 16th January 1999:353:169-178). Despite having been
funded to the tune of $1 million by the US Pentagon, Wessely and his
co-psychiatrist Professor Anthony David (both described as “specialists in
unexplained syndromes”) definitively concluded that exposure to chemical
weapons was not the cause of Gulf War veterans’ health problems (US cash for
study of Gulf victims. Jeremy Laurence. Independent: 4” June 1997).
Sixteen years later, Wessely’s view apparently still pertains
throughout the UK Ministry of Defence.
In contrast, US scientists have shown that Gulf War veterans’
chronic ill-health is indeed linked to toxic causes and it is clear that Gulf
War Illness/Syndrome cannot be associated with stress or any psychiatric
disorder: it is associated with poisoning by the cholinesterase inhibitors sarin
and organophosphates (these being known neurotoxins which give rise to
multi-system illness) combined with the effect of pyridostigmine bromide which
acts synergistically with them (US Congressionally Mandated Report of the
Research Advisory Committee on Gulf War Illness – Findings and Recommendations;
13th June 2012).
Further, a large study led by Robert Haley, Professor of
Internal Medicine and Chief, Division of Epidemiology, University of Texas
Southwestern Medical Centre, confirmed cholinergic dysfunction in affected Gulf
War veterans (Archives of Neurology, 26 November 2012: 1-10). The authors
concluded: “Autonomic symptoms are associated with objective, predominantly
cholinergic autonomic deficits in the population of Gulf War veterans”, with
affected veterans displaying orthostatic intolerance, secretomotor dysfunction,
upper gastrointestinal dysmotility, sleep dysfunction, urinary dysfunction and
autonomic diarrhoea.
As Haley pointed out: “It takes this out of the realm of
psychological illness into the realm of a brain illness” (Gulf War Illness
linked to Cholinergic Abnormalities. Pauline Anderson: Medscape 26 November
2012).
The statistics show that almost one third of UK troops who were
deployed or were prepared for deployment to the Gulf (which equates to between
13,250 and 15,900 previously fit and healthy personnnel) remain chronically
sick. Death statistics from GWS are impossible to obtain because once the sick
Gulf War veterans have left the armed forces, they are passed to the care of the
NHS and no extant medical records for service personnel are made available to
the NHS – they have been either destroyed or retained by the MoD. (It is
notable that in 1997, Wessely forecast that Gulf War veterans’ “contemporary
records…may be difficult to obtain”: BMJ 1997:314:239-240).
Thus convincing evidence exists that proves Wessely is wrong in
asserting that Gulf War Syndrome does not exist and that veterans’ ill-health is
merely the result of their own misperceptions.
The Camelford water poisoning tragedy
Wessely not only denies the existence of ME and of Gulf War
Syndrome: he has denied that residents of Camelford were poisoned by aluminium
sulphate. In July 1988, 20 tonnes of aluminium sulphate were accidentally pumped
into the drinking water supplies of the small town of Camelford in Cornwall. It
was reported that in the Camelford catastrophe, seven people died; 25,000
suffered serious health effects, and 40,000 animals were affected. (Dr Douglas
Cross. The Ecologist:1990:20:6:228-233). Five years later, an article by Bernard
Dixon entitled “Still waters” was published in the BMJ (5th August
1995: 311:395); it informed readers that: “mass hysteria was largely
responsible for the furore”. Dixon’s article was based on a 1995
“re-assessment” of the Camelford incident by psychiatrists Anthony David and
Simon Wessely which was published in the Journal of Psychosomatic Research
(1995:39:1-9). Dixon noted that David and Wessely had found that anxiety
was the cause of the symptoms and that there was no evidence of long-term
adverse effects on health as a consequence of the drinking water
contamination.
However, David and Wessely’s confident assertion that mass
hysteria and/or anxiety were responsible for the supposed suffering of those in
the Camelford area at the time of the incident has been shown to be wrong. Paul
Altman et al showed that Camelford residents who were exposed to aluminium
sulphate-contaminated drinking water suffered considerable damage to cerebral
function which was not related to anxiety, and that there was objective evidence
of organic brain damage compatible with the known effects of exposure to
aluminium (BMJ 1999:319:807-811). Altman et al reported that previous
psychological studies on victims of the Camelford incident which concluded
that: “the perception of normal and benign somatic symptoms (physical and
mental) by both subjects and health professionals was heightened and
subsequently attributed to an external cause, such as poisoning” were
demonstrably erroneous.
Twenty-five years after the catastrophe, the UK Government
apologised to those affected “unreservedly” for the way in which the
incident was dealt with at the time (BBC News Cornwall,
19th September 2013).
It remains to be seen if Simon Wessely will also apologise
unreservedly to those whom he denigrated by dismissing their symptoms as
anxiety. Quite how hair, skin and nails turning blue, and bone biopsies showing
stainable aluminium over six months later could possibly be due to anxiety has
not been explained by Wessely.
Again, Wessely has been proved wrong in ascribing serious and
chronic physical ill-health to aberrant perception not only by those afflicted
but also by those medical professionals who supported them.
Interstitial cystitis
In 2009
the BMJ carried a well-structured Clinical Review of interstitial
cystitis/bladder pain syndrome (Serge Marinkovic et al: BMJ 2009:339:337-342) in
which the authors provided a compelling case – based on evidence of bladder
epithelial damage and related blood vessel transitions activating mast cells and
generating an autoimmune response – of likely autoimmune causation.
At once
Wessely sprang into action, rejecting outright any autoimmune or allergic
component and noting the association with chronic fatigue syndrome, asserting
that there was “good evidence” for the role of psychological factors in
both the aetiology or maintenance of both conditions and stating that physical
pathology cannot fully account for the symptoms (http://www.bmj.com/cgi/eletters/339/jul31_2/b2707#218935).
He criticised Marinkovic for resisting in his review his (Wessely’s) own
proposition that they are simply part of one functional somatic syndrome in
which psychological factors contribute to the aetiology and for omitting to
mention that psychological interventions (CBT) deserve a place in any review of
the disorder (seehttp://www.meactionuk.org.uk/Interstitial_cystitis_and_Chronic_Fatigue_Syndrome.htm ).
In 2012 it was established that patients with interstitial
cystitis/painful bladder syndrome demonstrated measurable systemic dysfunction,
with central and autonomic nervous system disorders and high rates of syncope as
well as gastrointestinal dysfunction (Chelimsky G et al. Front Neurosci
2012:6:114: Epub 10 August 2012).
In October 2013, researchers again proved Wessely wrong (Jiang
Y-H et al; Increased Pro-Inflammatory Cytokines, C-Reactive Protein and Nerve
Growth Factor Expression in Serum of Patients with Interstitial Cystitis/Bladder
Pain Syndrome: PLoS ONE 8(10): e76779. doi:10.1371/journal.pone.0076779).They
demonstrated increased pro-inflammatory cytokine/chemokine (IL-1ß, IL-6, TNF-α
and IL-8) expression in the sera of IC/BPS patients, implying not only mast cell
activation but also that other inflammatory mediators play important roles in
the pathogenesis, and supporting the fact that interstitial cystitis/bladder
pain syndrome is now considered a chronic inflammatory disease.
Conclusion
Wessely’s attempts to re-classify as a single somatoform
disorder various disparate physical syndromes have failed. As the Countess of
Mar et al so concisely commented, the Maddox Prize was “awarded to the
defender of a hypothesis with no evidence-base rather than to someone who was
upholding true scientific inquiry”. There are many who maintain that,
contrary to “standing up for science”, the award to Wessely
militates against medical science and actively devalues it.