Medical Politics and Cognitive Dissonance: How Psychiatrists Purloined ME

On March 18th 2015, The Royal Society of Medicine in London hosted a meeting entitled "ME/CFS: Frontiers, Clinical Practice and Perception." 

Speakers included Dr Charles Shepherd of the ME Association; Anna Gregorowski, Nurse Consultant at Great Ormond Street Hospital; Dr Luis Nacul of the London School of Hygiene and Tropical Medicine; and Dr Gabrielle Murphy from the ME/CFS Service at the Royal Free London. (You can read more about the meeting at ME Research UK.)

Among the distinguished speakers was the Countess of Mar, a member of the House of Lords, and a stalwart supporter of ME patients in the UK. In her speech (see below) she pinpoints the source of the continued "controversy" surrounding me, which is, in her words, pure "medical politics."

She quotes Frantz Fanon as saying:

“Sometimes people hold a core belief that is very strong. When they are presented with evidence that works against that belief, the new evidence cannot be accepted. It would create a feeling that is extremely uncomfortable, called cognitive dissonance. And because it is so important to protect that core belief, they will rationalise, ignore and even deny anything that doesn’t fit that core belief.”

Those familiar with the history of medicine will recognize the influence of "cognitive dissonance" as it applies to medical politics. Ignaz Philipp Semmelweis, the Hungarian physician who first recommended that doctors wash their hands, was firmly rejected by the medical community. At 47, Semmelweis was committed to a mental institution, where, within two weeks, he was beaten to death by guards.

While Semmelweis is a dramatic case in point, it does speak to the degree to which the medical establishment clings to outmoded beliefs and rejects new ideas with equal fervor. 

In order to "First, do no harm," it is essential that physicians stop relying on "received wisdom" rather than facts for the basis of their opinions. Received wisdom, like so much that goes unquestioned, is nothing but prejudice that has been repeated so often it has taken on the veneer of truth.

As the Countess of Mar says, "I know how very difficult it is to say “Sorry, I got it wrong”, especially when your whole career has been based on a particular belief. I have been told that, in medicine, nothing will change until the old guard moves on. The history of medicine is littered with instances of this phenomenon. It is my very sincere wish that the situation will change radically long before the changing of the guard."

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ROYAL SOCIETY OF MEDICINE

ME/CFS: Frontiers in research, clinical practice and perception

"THE POLITICS OF ME/CFS"

Ladies and gentlemen, I am grateful to the Royal Society of Medicine who have given me the opportunity to offer a political view of ME/CFS.

I will have been an Independent Crossbench member of the House of Lords for forty years in the autumn. For more than twenty of those years, with the help of a great many other people in the community, I have been trying to persuade governments of different colours that ME/CFS, together with organophosphate sheep dip poisoning, Gulf War Illnesses, Aerotoxic syndrome and other medically unexplained physical symptoms, known as MUPS, are not figments of patients’ imaginations, nor are they nocebo effects, but are very real conditions.

In so far as ME/CFS is concerned I have had some support from Members of Parliament who have constituents with the illness, but have been ploughing rather a long and lonely furrow in the Lords. For the sake of brevity, I will call the condition ME, which is what most patients prefer, except where accuracy demands otherwise. I know that the medical profession uses the shortcut term CFS, but that covers a much wider range of conditions that what I know of as classic ME. I have to say that I do deal with what are probably the worst cases.

I came to ME through parents who had used OP head louse shampoos on their children – treatments recommended by doctors and school nurses. Some children developed symptoms which were labelled ME within months of the treatment. I don’t know whether you recall that the advice was to shampoo the child’s head and, without rinsing, cover the head with a shower cap and leave overnight, to be rinsed off in the morning. Anyone with any knowledge of OPs knows that one of the most absorbent parts of the body is the scalp, and that some individuals are more genetically susceptible than others; so these poor children were poisoned.

Very unfortunately, once a person, be they child or adult, has the ME label all support and assistance from the medical profession and social services seem to vanish into thin air. Despite the World Health Organisation classification of CFS/ME as a neurological condition under ICD 10 G93.3 and this classification being accepted by Ministers of both the Department of Health and the Department for Work and Pensions; despite major reports, one by the Chief Medical Officers working group on CFS/ME in 2002 and two others by the All Party Parliamentary Group on ME in 2006 and 2010, all of which recognise the severe impact that this disease can have on many patients’ lives, far too many of those professionals treating and caring for people with ME have not received the message. The CMO Report mentions that 

“The disbelief and controversy over CFS/ME that exists within the professions has done nothing to dispel public disbelief in the existence of such a seemingly varied and inconsistent illness.” 

Despite all the fine words of Ministers and report writers, I repeatedly ask myself why it is that the recognition and treatment of this illness has remained in the doldrums for so long.

All Party Parliamentary Groups are supposed to be for the enlightenment of Members of Parliament from both Houses. The purpose of the APPG for ME is to: 

“Raise awareness of ME and support the improvement of health, social care, education and employment opportunities for people affected by ME.” 

There was a problem with communicating with Ministers effectively at what turned out to be large public meetings with few MPs present. After consultation with the leaders of the main ME charities and support groups, Forward-ME was formed in 2008 under my chairmanship. We have met successfully with people such as Steven Holgate, Lord Freud, Edward Timpson MP and ATOS as well as others in the health, social care and education world and are, I believe, respected for the respect that we show to each other and to our speakers. The APPG was re-formed in 2010 on these same principles and we now work together very happily, though meetings are still attended by very few MPs.

When we think of politics we tend to think of party politics – what goes on in the Westminster village, in local government or at the parish pump. It was a while before I recognised that amongst other settings there are medical politics.

Until the 1980s, when the Press picked up on the ‘Yuppie flu’ diagnosis, there  seems to have been tacit acceptance that ME was a real physical condition even though the cause was then, as it is now, unknown. There were a number on notable British doctors, amongst them Dr A Melvin Ramsay, who flew the flag for Myalgic Encephalomyelitis from the 1950s onwards, Dr Elizabeth Dowsett, Dr Alan Franklin and Dr John Richardson who, from their observations of ME patients over decades, were convinced that ME was caused by persistent viral infections. This persistence would appear to be confirmed by Dr Mady Hornig and Dr Ian Lipkin at the Centre for Infection and Immunity at Columbia University’s Mailman School of Public Health in their 27 February 2015 paper – ‘Immune Signatures in Blood Point to Distinct Disease Stages, Open Door to Better Diagnosis and Treatment’, who have identified distinct immune changes in patients, said to represent the first robust physical evidence the ME/CFS is a biological illness as opposed to a psychological disorder, though I readily acknowledge that we still have a long way to go.

It was when a small group psychiatrists from the UK, Europe and the USA purloined ME and renamed it CFS in the mid-1980s that the real problems began. They insisted that it was a psychosocial behavioural problem that could be readily overcome with a course of cognitive behavioural therapy and graded exercise. From their earliest beginnings, they managed to attract the attention of the media and of their medical colleagues with their assertions. They found their way onto government advisory committees and research organisations; onto the  boards of medical publications and into insurance companies where their message was greeted with apparent delight because these organisations would not have to think any more. The cause and solution were at hand.

No need for doctors to do too many investigations; no need to perform anything but psychological research; no need for social security payments by finding that claimants are really fit for work. They developed a means of stifling opposition by refusing to publish papers showing biological causation and, joy of joys for the insurance companies found that patients were reporting a psychological condition which was excluded in their policies. 

As recently as last year CFS was described as ‘a culturally driven disorder with no known organic cause’ in the BMJ.

This school of psychiatrists has persisted in their view despite more than 6,000 peer reviewed papers, including experimental studies which demonstrate a range of biological findings associated with people with ME. Funding for biological causes and treatments is miniscule against the funding for psychiatric or psychological ones. Researchers such as those funded by Invest in ME and ME Research UK, have funded excellent pilot and seed corn studies on a shoestring, while a significant number of biomedical research applications have not been funded by the MRC in the past 20 years, including some targeted at pathophysiology. It is hard to believe that all were written so badly that they could be rejected, particularly as some came from established researchers with a track record in this and other fields. 

Could it be that the expert reviewers were, once again, psychiatrists who appeared to have an interest in suppressing research that counters their views? 

Many suspect this to be the case. This can only be political. It is also political suicide for researchers in major universities to suggest that they conduct studies into biological causes for ME.

The largest and most expensive state-sponsored treatment studies (the PACE and FINE trials) which both focused exclusively on psychosocial management cost in excess of £6 million, dwarfing funding for biomedical intervention, yet both failed to show improvement on real-world outcome measures. These huge sums have taken us no nearer to finding a cure or the underlying cause.

There is a silver lining – more recently MRC funding has been targeted on more biological research, though the amounts of funding allocated are still miniscule in relation to that for other diseases

It is extraordinary to me that men and women who are trained to “First do no harm” and to “Listen to the patient for they will probably tell you the diagnosis” as well as to exclude all possible biological causes before considering psychological ones cannot but be aware of the enormous damage they are doing to a very large number – more than 200,000, patients with this condition. By recommending that too many investigations should not be conducted because they encourage illness behaviour they are risking missing vital findings of treatable conditions such as endocrine dysfunction, rarer medical conditions or  even cancers that present with chronic fatigue. How, with all the publicity, can they not be aware of the misery, neglect and, too often, abusive treatment that I can only describe as barbaric that is meted out to patients with a diagnosis of ME?

I am aware that multiple sclerosis, Parkinson’s disease and diabetes were all once in the domain of the psychiatrists and that this domain is shrinking as new discoveries are made. To compensate, we have a compendium of purely subjective conditions with labels such as conversion syndrome, pervasive refusal syndrome, and neurasthenia to name but a few. There is no biological explanation for these, but they do help the uninitiated to believe that the condition is psychological.

How can we change this situation? Frantz Fanon, the French psychiatrist, philosopher and revolutionary from the middle of the last century wrote:

“Sometimes people hold a core belief that is very strong. When they are presented with evidence that works against that belief, the new evidence cannot be accepted. It would create a feeling that is extremely uncomfortable, called cognitive dissonance. And because it is so important to protect that core belief, they will rationalise, ignore and even deny anything that doesn’t fit that core belief.”

Ladies and gentlemen, I know how very difficult it is to say “Sorry, I got it wrong”, especially when your whole career has been based on a particular belief. I have been told that, in medicine, nothing will change until the old guard moves on. The history of medicine is littered with instances of this phenomenon. It is my very sincere wish that the situation will change radically long before the changing of the guard.

Sir Wessely Rides Again

This critical essay appeared on ME Action recently. Simon Wessely is not the only proponent of the "it's all in their heads" theory of ME, but he is the most influential. In spite of overwhelming evidence to the contrary, Wessely, a devotee of armchair reasoning, has clung to the quaint Freudian notion that illnesses are created by the mind (hysteria, aka conversion disorder). This type of voodoo medicine, as Margaret Williams has so aptly pointed out, has absolutely nothing to do with science - or medicine.

Professor Sir Simon Wessely – Right or Wrong?

Margaret Williams    ~   28^th 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 13^th 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: 19^th 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; 13^th 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 1^st 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 137^th Annual Meeting in partnership with the Association of British Neurologists; Abstract W1409;  7-9^th October 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, 17^th 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, 17^th 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 2013:6^th 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: 16^th 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; 13^th 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 (5^th 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, 19^th 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 (see http://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.