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."

______________________________________________

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.

Tom Kindlon blasts "fear avoidance of exercise" in the British Medical Journal

It seems as if the most prestigious medical journals in the UK can't get enough of the PACE trial, even when the results are not only old hat, but a very bad fit with good scientific method.

The article, originally appearing appearing in Lancet Psychiatry on January 13, is entitled "Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial." The authors conclude their study with the following statement:

"Our main finding was that fear avoidance beliefs were the strongest mediator for both CBT and GET. Changes in both beliefs and behaviour mediated the effects of both CBT and GET, but more so for GET. The results support a treatment model in which both beliefs and behaviour play a part in perpetuating fatigue and disability in chronic fatigue syndrome."

The article, whose conclusions have been widely circulated in the media, has met with overwhelming criticism from the ME/CFS community, including the ME Association and ME/CFS Research UK. There is, as Mr. Kindlon points out in his letter to the BMJ (below), no objective evidence that GET and CBT actually improve life for ME/CFS patients. Even more to the point, there is objective evidence that "fear avoidance" is not a relevant factor in ME/CFS.

In his December 9 presentation to the P2P, Dr. Snell found that after administering a CPET to ME/CFS patients and controls, the patients not only worked up to capacity, but did not show signs of deconditioning. What was more, in both groups, perceived exertion and workload were correlated. Essentially, there were no differences between objective and subjective measures of exertion for either patients and controls. Dr. Snell concluded that the assumptions underlying both GET and CBT are not supported by objective scientific research.

In Tom Kindlon's thorough critique of the most recent salvo in favor of GET and CBT, he raises many excellent points, all of which should have been considered by the AHRQ before they allowed a study as fundamentally flawed as the PACE trial to be included in their literature review.

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Objective measures found a lack of improvement for CBT & GET in the PACE Trial: subjective improvements may simply represent response biases or placebo effects in this non-blinded trial.

By Tom Kindlon, BMJ, 1/14/15

This BMJ article and a flurry of articles in the lay media this week followed the publication in Lancet Psychiatry of an analysis of the mediators of change in the important PACE Trial, a chronic fatigue syndrome (CFS) trial which cost UK taxpayers £5 million[1,2]. What seems to have been lost in the coverage is that, although there were some modest improvements in the self-report measures, there was an almost complete absence of improvements in objectively measured outcomes for cognitive behavioural therapy (CBT) and graded exercise therapy (GET) compared to the control group (specialist medical care only (SMC)).

This is a non-blinded trial, where participants were told CBT and GET had previously been found to be effective in CFS and other conditions[3,4]: one way to look at the mediation results for subjective measures when there was a lack of objective improvements is that they may merely tell us how response biases and/or placebo effects are mediated[5].

The focus on subjective measures in some CFS studies was previously criticised in a systematic review published back in 2001 (long before the PACE Trial started)[6]. They suggested instead "a more objective measure of the effect of any intervention would be whether participants have increased their working hours, returned to work or school, or increased their physical activities."

The model presented for cognitive behaviour therapy (CBT) in the PACE Trial manuals posits that the impairments and symptoms are reversible with the therapy[3,7]. However, the latest paper shows that fitness, as measured by a step test, didn't improve following CBT[2]. An earlier PACE Trial publication reported that the addition of CBT to SMC did not result in an improvement in 6-minute walking test scores compared to SMC alone[8].

The PACE Trial was part funded by the UK Department of Work and Pensions, a rare move for them, presumably done due to an expectation that the therapies would improve measures of employment and levels of benefit receipt. However, again CBT brought about no improvement using objective measures, such as days of employment lost, levels of disability benefits received and levels of receipt of insurance payments[9].

These results are in line with earlier studies of CBT. For example, an analysis of three randomized controlled trials of CBT interventions for CFS found no improvement in objectively measured activity, despite participants reporting a reduction in (self-reported) fatigue and (sometimes) functional impairments[10]. Similar results were found in another uncontrolled trial where changes in objectively measured activity did not predict fatigue levels, and objectively measured activity on completion remained low compared to population norms[11]. An uncontrolled study found improvements in self-reported physical functioning and fatigue were reported despite a numerical decrease in (objectively measured) activity[12]. In another study, the level of self-reported cognitive impairment in CFS patients decreased significantly after CBT, however, cognition had not improved when it was measured objectively using neuropsychological test performance[13].

It is unsurprising that 15 sessions of CBT (and the associated homework exercises and management program) might alter how participants respond to self-report questionnaires. A PACE Trial manual itself says "the essence of CBT is helping the participant to change their interpretation of symptoms": this could lead to altered or biased fatigue scores, one of the two primary outcome measures[14]. Also, one of the aims of CBT (for CFS) has been said to be "increased confidence in exercise and physical activity"[15]. The possible responses for the other primary outcome measure, the SF-36 physical functioning subscale, are "yes, limited a lot", "yes, limited a little" and "no, not limited at all" to questions on a range of physical activities. Such responses could be easily be artificially altered following a therapy like CBT for CFS.

The results were not that different with the GET cohort in the PACE Trial. Again the manuals predicted that the impairments and symptoms are reversible using the intervention[4,15]. The model said there was no reason participants should not be able to get back to full functioning. Deconditioning was posited to be an important maintaining factor. However, GET did not result in an improvement in fitness, as measured by the step test. GET did result in a small improvement on the six minute walking test to a final distance of 379 metres, or 35 metres more than the SMC-only group[7]. However, as Knoop and Wiborg commented in an accompanying editorial in Lancet Psychiatry: "an increase in distance walked during a test situation without an increased fitness suggests that patients walk more because of a change in cognitive processes (eg, daring to do more or an increased self-efficacy with respect to activity), not because of a change in physiological capacity”[16]. The result remained very poor given that normative data would suggest a group of similar age and gender should walk an average of 644 or so metres[17]. The distance walked remained comparable to people with many serious conditions[18-21], and considerably worse than the distance walked by healthy elderly adults[22,23], despite the PACE trial cohort having a mean age of only 40[8]. Also, to be allowed entry into CFS research studies such as the PACE Trial one can not have a range of chronic illnesses so with genuine recovery one would expect results comparable to healthy people[8].

As with CBT, measures relating to employment showed no improvement following GET in days of work missed, which remained very high, nor a reduction in levels of benefits (financial support from the state) or payments from insurance companies[9].

These results are in line with an audit of Belgian rehabilitation centres for CFS offering CBT and GET[24-26]. Some improvements in subjective measures were found, but there was no improvement in the results of the exercise test and hours in employment actually decreased.

Probably the main contribution of the PACE Trial has been to add to a growing body of evidence that while CBT and GET for CFS have resulted in some changes on subjective measures, they haven't lead to improvements on objective measures.

References:

1. Torjesen I. Tackling fears about exercise is important for ME treatment, analysis indicates. BMJ 2015;350:h227 http://www.bmj.com/content/350/bmj.h227

2. Chalder T, Goldsmith KA, White PD, Sharpe M, Pickles AR. Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial. Lancet Psychiatry 14 Jan 2015, doi:10.1016/S2215-0366(14)00069-8.

3. Burgess M, Chalder T. Manual for Participants. Cognitive behaviour therapy for CFS/ME.http://www.pacetrial.org/docs/cbt-participant-manual.pdf (accessed: January 17, 2015)

4. Bavinton J, Darbishire L, White PD -on behalf of the PACE trial management group. Graded Exercise Therapy for CFS/ME. Information for Participants http://www.pacetrial.org/docs/get-participant-manual.pdf (accessed: January 17, 2015)

5. Wechsler ME, Kelley JM, Boyd IO, Dutile S, Marigowda G, Kirsch I, Israel E, Kaptchuk TJ. Active albuterol or placebo, sham acupuncture, or no intervention in asthma. N Engl J Med. 2011;365(2):119-26.

6. Whiting P, Bagnall AM, Sowden AJ, Cornell JE, Mulrow CD, Ramírez G. Interventions for the treatment and management of chronic fatigue syndrome: a systematic review. JAMA. 2001 Sep 19;286(11):1360-8.

7. Burgess M, Chalder T. PACE manual for therapists. Cognitive behaviour therapy for CFS/ME.http://www.pacetrial.org/docs/cbt-therapist-manual.pdf (accessed: January 17, 2015)

8. White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, et al, for the PACE trial management group. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011;377:823-36.

9. McCrone P, Sharpe M, Chalder T, Knapp M, Johnson AL, Goldsmith KA, White PD. Adaptive pacing, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome: a cost-effectiveness analysis. PLoS One. 2012;7(8):e40808. doi: 10.1371/journal.pone.0040808

10. Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychol Med. 2010 Aug;40(8):1281-7. doi: 10.1017/S0033291709992212. Epub 2010 Jan 5.

11. Heins MJ, Knoop H, Burk WJ, Bleijenberg G. The process of cognitive behaviour therapy for chronic fatigue syndrome: which changes in perpetuating cognitions and behaviour are related to a reduction in fatigue? J Psychosom Res. 2013 Sep;75(3):235-41. doi: 10.1016/j.jpsychores.2013.06.034. Epub 2013 Jul 19.

12. Friedberg F, Sohl S. Cognitive-behavior therapy in chronic fatigue syndrome: is improvement related to increased physical activity? J Clin Psychol. 2009 Apr;65(4):423-42. doi: 10.1002/jclp.20551.

13. Knoop H, Prins JB, Stulemeijer M, van der Meer JW, Bleijenberg G. The effect of cognitive behaviour therapy for chronic fatigue syndrome on self-reported cognitive impairments and neuropsychological test performance. Journal of Neurology and Neurosurgery Psychiatry. 2007 Apr;78(4):434-6.

14. Bavinton J, Darbishire L, White PD -on behalf of the PACE trial management group. Graded Exercise Therapy for CFS/ME (Therapist manual): http://www.pacetrial.org/docs/get-therapist-manual.pdf (accessed: January 17, 2015)

15. O'Dowd H, Gladwell P, Rogers CA, Hollinghurst S, Gregory A. Cognitive behavioural therapy in chronic fatigue syndrome: a randomised controlled trial of an outpatient group programme. Health Technology Assessment, 2006, 10, 37, 1-140.

16. Knoop H, Wiborg JF. What makes a difference in chronic fatigue syndrome? Lancet Psychiatry 13 Jan 2015 DOI: http://dx.doi.org/10.1016/S2215-0366(14)00145-X

17. Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/ta...

18. Lipkin DP, Scriven AJ, Crake T, Poole-Wilson PA. Six minute walking test for assessing exercise capacity in chronic heart failure. Br Med J (Clin Res Ed) 1986. 292:653–655.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1339640/pdf/bmjcred00224-001...

19. Marin JM, Carrizo SJ, Gascon M, Sanchez A, Gallego B, Celli BR. Inspiratory Capacity, Dynamic Hyperinflation, Breathlessness, and Exercise Performance during the 6-Minute-Walk Test in Chronic Obstructive Pulmonary Disease. Am. J. Respir. Crit. Care Med. 2001 63(6):1395-1399.http://171.66.122.149/content/163/6/1395.full

20. Goldman MD, Marrie RA, Cohen JA. Evaluation of the six-minute walk in multiple sclerosis subjects and healthy controls. Multiple Sclerosis 2008. 14(3):383-390.
http://pocketknowledge.tc.columbia.edu/home.php/viewfile/download/65399/The six-minute walk test.pdf

21. Ross RM, Murthy JN, Wollak ID, Jackson AS. The six minute walk test accurately estimates mean peak oxygen uptake. BMC Pulm Med. 2010 May 26;10:31. PMID 20504351.http://www.biomedcentral.com/1471-2466/10/31

22. Camarri B, Eastwood PR, Cecins NM, Thompson PJ, Jenkins S. Six minute walk distance in healthy subjects aged 55–75 years. Respir Med. 2006. 100:658-65
http://www.resmedjournal.com/article/S0954-6111(05)00326-4/abstract

23. Troosters T, Gosselink R, Decramer M. Six minute walking distance in healthy elderly subjects. Eur Respir J. 1999. 14:270-4. http://www.ersj.org.uk/content/14/2/270.full.pdf

24. Rapport d'évaluation (2002-2004) portant sur l'exécution des conventions de rééducation entre le Comité de l'assurance soins de santé (institué auprès de l'Institut national d'assurance maladie invalidité) et les Centres de référence pour le Syndrome de fatigue chronique (SFC), Bruxelles, juillet 2006. (French language edition)

25. Evaluatierapport (2002-2004) met betrekking tot de uitvoering van de revalidatieovereenkomsten tussen het Comité van de verzekering voor geneeskundige verzorging (ingesteld bij het Rijksinstituut voor Ziekte- en invaliditeitsverzekering) en de Referentiecentra voor het Chronisch vermoeidheidssyndroom (CVS). 2006. Available online:https://drive.google.com/file/d/0BxnVj9ZqRgk0QTVsU2NNLWJSblU/edit (accessed: January 17, 2015) (Dutch language version)

26. Stordeur S, Thiry N, Eyssen M. Chronisch Vermoeidheidssyndroom: diagnose, behandeling en zorgorganisatie. Health Services Research (HSR). Brussel: Federaal Kenniscentrum voor de Gezondheidszorg (KCE); 2008. KCE reports 88A (D/2008/10.273/58)https://kce.fgov.be/sites/default/files/page_documents/d20081027358.pdf (accessed: January 17, 2015)

Competing interests: I am a committee member of the Irish ME/CFS Association and perform various types of voluntary work for the Association

Cochrane review finds CBT not effective for medically unexplained symptoms

When a physician fails to find a cause for physical symptoms (medically unexplained physical symptoms, or MUPS), the patient is usually given a diagnosis of 'somatoform disorder,' or "it's all in your head."

Somatoform disorder is a relic of Freudian psychology, whose disciples believed that underlying emotional distress could manifest itself in physical symptoms. While it is true that some forms of emotional trauma can produce a release of adrenal hormones, which will in turn raise blood pressure, increase heart rate, and cause other transient physiological symptoms, the idea that emotional distress can cause significant long-term physiological consequences (e.g. gallbladder disease, cancer, etc.) is completely unfounded.

Although there is no scientific basis for somatofom disorder, it has become widely accepted as a diagnosis because it is easier to relegate patients to the dustbin of "it's all in your head" than to devote the necessary time and effort to figure out what might actually be wrong with them. In a medical system in which physicians only have 10 minutes (at most) to spend with a patient, and in which doctors are discouraged from taking their patients' complaints seriously, but instead rely on the results of a few simple tests, the diagnosis of somatoform disorder is a convenient means of disposing of "difficult" patients.

The diagnosis also saves money. National health care systems and insurance companies are especially concerned with costly medical outlays for chronic illnesses, which are becoming increasingly common. They are likely to embrace the idea that MUPS can be treated with comparatively inexpensive therapy, rather than pursue a line of treatment that may involve extensive testing and expensive treatments.

ME/CFS falls into the category of MUPS, and as a consequence many patients with the disease are consigned to psychological therapy. While there has been a great deal of resistance on the part of patients and specialists to the idea that psychological interventions are a legitimate treatment for ME/CFS (treatment being defined as something that can affect the actual course of a disease, rather than provide solace), there has not yet been a careful, unbiased evaluation of therapy in MUPS.

This systematic review found that compared with usual care (which is in most cases minimal) patients with MUPS did slightly better with psychological interventions. However, when compared with enhanced, or specialized, care CBT was not more effective. This finding would seem to be obvious. For example, for patients with heart disease, seeing a cardiologist would clearly be more efficacious than receiving CBT. However, because the "it's all in your head" diagnosis has become so popular, the report could only conclude that CBT was not more effective than enhanced care. This is, in essence, a negative conclusion, but it is still valid as a critique of CBT employed instead of specialized care.

To their credit, the authors pointed out that the studies they evaluated did not include any patients who were unwilling to receive CBT, thereby skewing the results. (If studies only include patients who are positively disposed to receiving CBT, outcomes will be more favorable.) They also pointed out that while no harms were reported, the studies did not include harms as part of their outcome measures. (Absence of evidence is not evidence of absence.) They also noted a high drop-out rate, and the fact that the studies were unblinded. When combined, all of these factors can only lead to the conclusion that evidence in support of CBT and other psychological interventions for treating ME/CFS is weak by anybody's standards.

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Non-pharmacological interventions for somatoform disorders and medically unexplained physical symptoms (MUPS) in adults

By N. Van Dessel et al.


BACKGROUND: Medically unexplained physical symptoms (MUPS) are physical symptoms for which no adequate medical explanation can be found after proper examination. The presence of MUPS is the key feature of conditions known as 'somatoform disorders'. Various psychological and physical therapies have been developed to treat somatoform disorders and MUPS. Although there are several reviews on non-pharmacological interventions for somatoform disorders and MUPS, a complete overview of the whole spectrum is missing.

OBJECTIVES: To assess the effects of non-pharmacological interventions for somatoform disorders (specifically somatisation disorder, undifferentiated somatoform disorder, somatoform disorders unspecified, somatoform autonomic dysfunction, pain disorder, and alternative somatoform diagnoses proposed in the literature) and MUPS in adults, in comparison with treatment as usual, waiting list controls, attention placebo, psychological placebo, enhanced or structured care, and other psychological or physical therapies.

SEARCH METHODS: We searched the Cochrane Depression, Anxiety and Neurosis Review Group's Specialised Register (CCDANCTR) to November 2013. This register includes relevant randomised controlled trials (RCTs) from The Cochrane Library, EMBASE, MEDLINE, and PsycINFO. We ran an additional search on the Cochrane Central Register of Controlled Trials and a cited reference search on the Web of Science. We also searched grey literature, conference proceedings, international trial registers, and relevant systematic reviews.

SELECTION CRITERIA: We included RCTs and cluster randomised controlled trials which involved adults primarily diagnosed with a somatoform disorder or an alternative diagnostic concept of MUPS, who were assigned to a non-pharmacological intervention compared with usual care, waiting list controls, attention or psychological placebo, enhanced care, or another psychological or physical therapy intervention, alone or in combination.

DATA COLLECTION AND ANALYSIS: Four review authors, working in pairs, conducted data extraction and assessment of risk of bias. We resolved disagreements through discussion or consultation with another review author. We pooled data from studies addressing the same comparison using standardised mean differences (SMD) or risk ratios (RR) and a random-effects model. Primary outcomes were severity of somatic symptoms and acceptability of treatment.

MAIN RESULTS: We included 21 studies with 2658 randomised participants. All studies assessed the effectiveness of some form of psychological therapy. We found no studies that included physical therapy.Fourteen studies evaluated forms of cognitive behavioural therapy (CBT); the remainder evaluated behaviour therapies, third-wave CBT (mindfulness), psychodynamic therapies, and integrative therapy. Fifteen included studies compared the studied psychological therapy with usual care or a waiting list. Five studies compared the intervention to enhanced or structured care. Only one study compared cognitive behavioural therapy with behaviour therapy.Across the 21 studies, the mean number of sessions ranged from one to 13, over a period of one day to nine months. Duration of follow-up varied between two weeks and 24 months. Participants were recruited from various healthcare settings and the open population. Duration of symptoms, reported by nine studies, was at least several years, suggesting most participants had chronic symptoms at baseline.

Due to the nature of the intervention, lack of blinding of participants, therapists, and outcome assessors resulted in a high risk of bias on these items for most studies. Eleven studies (52% of studies) reported a loss to follow-up of more than 20%. For other items, most studies were at low risk of bias. Adverse events were seldom reported. For all studies comparing some form of psychological therapy with usual care or a waiting list that could be included in the meta-analysis, the psychological therapy resulted in less severe symptoms at end of treatment (SMD -0.34; 95% confidence interval (CI) -0.53 to -0.16; 10 studies, 1081 analysed participants). This effect was considered small to medium; heterogeneity was moderate and overall quality of the evidence was low. Compared with usual care, psychological therapies resulted in a 7% higher proportion of drop-outs during treatment (RR acceptability 0.93; 95% CI 0.88 to 0.99; 14 studies, 1644 participants; moderate-quality evidence). Removing one outlier study reduced the difference to 5%.

Results for the subgroup of studies comparing CBT with usual care were similar to those in the whole group. Five studies (624 analysed participants) assessed symptom severity comparing some psychological therapy with enhanced care, and found no clear evidence of a difference at end of treatment (pooled SMD -0.19; 95% CI -0.43 to 0.04; considerable heterogeneity; low-quality evidence). Five studies (679 participants) showed that psychological therapies were somewhat less acceptable in terms of drop-outs than enhanced care (RR 0.93; 95% CI 0.87 to 1.00; moderate-quality evidence).


AUTHORS' CONCLUSIONS: When all psychological therapies included this review were combined they were superior to usual care or waiting list in terms of reduction of symptom severity, but effect sizes were small. As a single treatment, only CBT has been adequately studied to allow tentative conclusions for practice to be drawn. Compared with usual care or waiting list conditions, CBT reduced somatic symptoms, with a small effect and substantial differences in effects between CBT studies. The effects were durable within and after one year of follow-up.

Compared with enhanced or structured care, psychological therapies generally were not more effective for most of the outcomes. Compared with enhanced care, CBT was not more effective. The overall quality of evidence contributing to this review was rated low to moderate.The intervention groups reported no major harms. However, as most studies did not describe adverse events as an explicit outcome measure, this result has to be interpreted with caution.An important issue was that all studies in this review included participants who were willing to receive psychological treatment. In daily practice, there is also a substantial proportion of participants not willing to accept psychological treatments for somatoform disorders or MUPS. It is unclear how large this group is and how this influences the relevance of CBT in clinical practice.The number of studies investigating various treatment modalities (other than CBT) needs to be increased; this is especially relevant for studies concerning physical therapies. Future studies should include participants from a variety of age groups; they should also make efforts to blind outcome assessors and to conduct follow-up assessments until at least one year after the end of treatment.


Source: Van Dessel N, Den Boeft M, van der Wouden JC, Kleinstäuber M, Leone SS, Terluin B, Numans ME, van der Horst HE, van Marwijk H. Cochrane Database Syst Rev. 2014 Nov 1;11:CD011142. [Epub ahead of print]

Cruelty, Revenge and Sadism - How Medical Professionals Have Failed Our Children

In this interview sponsored by the Dutch ME/CFS Association, Dr. Nigel Speight, a British pediatrician, explains how the medical system has failed young people with ME.

Dr. Speight has been involved in 30 cases in which children with ME have either been forcibly removed from their homes, or threatened with sectioning. In all of these cases, the children - or their mothers - were given a psychiatric diagnosis that replaced their diagnosis of ME.

How did this come about?

According to Dr. Speight, "Once someone pulls the trigger to set child protection proceedings in motion it is like a juggernaut ... it is very difficult to reverse. The further the proceedings go the more the professionals dig in. They cannot afford to lose face, or admit they were wrong. There is an almost sadistic element in the worst cases."

Dr. Speight presents horrifying cases in which parents who resist the psychiatric diagnosis have their children taken from them out of "revenge." Once children are placed in a mental ward, parents may be prohibited from visiting them, increasing the despair, and also worsening the physical condition, of these seriously ill children.

While Dr. Speight has defended 30 children with ME, it is important to keep in mind that the practice of removing physically ill children from their homes on a psychiatric pretext is not limited to these cases.

Justina Pelletier a young girl with mitochodrial disease was removed fro her home and placed under psychiatric care in Boston Children's Hospital for nearly a year. Karina Hansen, a young woman with ME, was forcibly removed from her home in Denmark. There are many other cases as well, ones which do not make the news.

The harm that has been done to these children is, in some cases, irreparable. But, as Dr. Speight has pointed out, there is little hope for defending these children until legal action is taken.



The full transcript below has been provided by the Dutch ME/CFS Association. Copyright ME|cvs Vereniging  Wetenschap voor Patiënten (Science to patients)

Interview with Dr. Nigel Speight, Broadcast January 7, 2014

I’m Rob Wijbenga, chair of the ME/cfs association in the Netherlands, and I’m a representative for the project Science to Patients. In that function I’m here to talk to Nigel Speight, paediatrician, who has been willing enough to participate in this project and to give six short talks on different aspects of ME/cfs based on questions from patients.

Welcome doctor Speight and thank you so much for participating. I believe you have been involved in quite a number of cases where children with ME have been threatened with removal from their families by social services. Could you tell us about this area?

Well this is a very painful area. It’s one of the most unpleasant things I witnessed in my entire medical career. It’s something that I’ve seen all over the British Isles, I’ve had cases scattered throughout the map of Great Britain. And they all seem to have similar causes, and a lot of it comes from a simple failure of doctors to protect patients by diagnosing them with ME/cfs. Which then puts them at risk of being persecuted for alternative explanations. I have had about over thirty cases which have all resulted in child protection proceedings with case conferences being held and the threat of removal. Fortunately most of them we have managed to avert by early intervention, giving second opinions. But quite a few have actually, has been a real threat of removal, and one or two children have actually spent time away from their families against their will. Because of court proceedings.

Could you tell us about any particular case, which demonstrates this problem?

Yes, there is one from an area in the Midlands. We’ll call her Tiffany, it’s not her real name for confidentiality. A lovely 13 year old girl, lively, talented, musical and she was in perfect health until she was struck down with quite acute onset ME, at the age of 13. And she was so ill that her mother had to turn to hospital doctors for admission to hospital. She did this openly and trustingly, and once in hospital she was under a paediatrician who believed in ME and everything seemed all right.

But gradually the multi-disciplinary team, including a child psychiatrist, an occupational therapist and a physiotherapist, took over the management of this case. And they set up weekly meetings where the girl was set targets, where she had to reach these targets. And she’d be taken to these meetings in her wheelchair with her head sagging, and have to sit through them and agree to try and achieve the targets next week. She was in hospital for three months, she got steadily worse despite cooperation. The professionals could not tolerate this failure to improve, and they blamed the mother. So the mother’ s visiting was limited till 6 p.m. So the physiotherapist had her all day long. The nurses used to leave her food outside her reach, so she would have to fight to get to it. Whenever her mother came in she found her demoralized and tearful.

Subsequently despite the mothers visiting being limited, the child continued to get worse. The first paediatrician said: “You might as well take her home”, and so the mother took her home. And then the family doctor came and subjected her to 30 minute intense interviews to try to find out what her mental state was and why she was in this state. The girl was reluctant to keep talking to this GP and he reduced her to tears. The family doctor then informed social services that she couldn’t accept responsibility. And social workers came with police and removed this girl from her mother again, and then treated it as a case of Münchausen syndrome by proxy. Mother’s visiting was restricted to when there was a social worker present. And the plan was to remove her to foster care for six months. And this was the aim that she then would get better, because it was her mother who was making her ill.

I was called in by the independent social worker, and met this girl, totally demoralized, resigned going to foster care. And I simply put in the opinion that their management of ME had no evidence to support it, and that it wasn’t the mother’s fault. And fortunately we did manage to get that girl discharged home, after which she made a slow but steady recovery. She has now completed university. So that was a happy ending, but a lot of unnecessary unhappiness on the way. And that was a reasonably typical case that went quite a long way down the line.

That was a nice intervention you could say.

Well that is the virtue of the independent social worker system. How far down the court system goes there is often a chance for second opinions and to try to oppose these sort of proceedings. I’d like to say I have been successful in 28 out of 30 of the cases I have been involved in. But the two that I have lost have been very unpleasant.

That’s marvellous. And do you know of other cases, taken care of by other paediatricians.

Yes, I had a case which was similar but different in some ways in which the influence of psychiatry was greater. And this was again a girl of about 13 or 14 in Scotland and she was under the care of a paediatrician who diagnosed ME quite confidently and she was moderate, moderately severe. But then she got more severe and this is one of the risk factors. The severe case of ME is not tolerated by professionals.

The paediatrician lost her nerve and referred her to psychiatry who made the alternative diagnosis, not of Münchhausen syndrome by proxy this time, but of a thing called the ‘Pervasive Refusal Syndrome’. It wasn’t a case of pervasive refusal syndrome. She was cooperating, she was just very ill.

And by the time I was called in to intervene I found her on a psychiatric ward, curled up in a foetal position, being tube fed and very very sensitive to light and sound. And every time the nurses closed the door a shudder went through this girl’s body. But the psychiatrist would not allow her to have ear protectors because that would increase her sense of withdrawal. And the psychiatrist insisted on talking to her in a loud voice and this way they would cure her of her Pervasive Refusal Syndrome. I’d like to say the court order was reversed a week later and she went to a gentle nursing home where she has been allowed to make a slow but steady recovery. But how you can change from having ME to having a purely psychiatric diagnosis just because you have been handed from a paediatrician to a psychiatrist I don’t really understand.

What is your understanding of the factors leading to this state of affairs?

I think it is easy to blame the social workers because when they come in what they do seems to be so cruel but I think we actually have to blame the medical profession first. It is the medical profession’s duty to be able to make a confident clear diagnosis of ME/cfs. And if they do that, this should be protection. But many of the cases I have seen have not even be diagnosed and then care proceedings are started by the education authorities for non-school attendance.

So doctors have to get it right to start with. The social workers will only get it wrong if the doctors don’t protect the child with a diagnosis. I should say, I have seen a lot of real abuse in my life, and I have been involved in protecting a lot of severely abused children. And to now being on the other side and to see innocent families being persecuted by the social workers who should be protecting other children is remarkable. I once saw a 9 year old boy who was threatened with care proceedings and as part of my assessment I asked him his three wishes. Which is one of the things you do to understand a child’s state of mind. And beautifully he said: ‘ I wish there were better judges and social workers in this world who would do better protecting children who need protection and not troubling families like mine’.

And this is a child of nine ???

A child of nine. Out of the mouth of babes and children.

I should say that once someone pulls the trigger to set child protection proceedings in motion it is like an ocean liner. It is like a juggernaut. It is very difficult to reverse. You have a social worker who is trained in child protection. They are used to parents protesting their innocence they have to overpower them and they keep going. And the further the proceedings go, the more the professionals dig in and cannot afford to lose face or to admit that they are wrong. I should say I have had one beautiful experience of a social worker who was completely converted by seeing the film ‘Voices from the shadows’ which touches on this, that she became an advocate for the family, refused the psychiatrist’s diagnosis of child abuse and helped them to withstand further pressure.

So that film did a lot of good there.

Fortunately there are cases like that. There is not much independent thinking in most of the cases, there is a sort of collusion when the whole case conference has met and as one they have voted the same way. They all feel supported by each other.

And you don’t see a development for the better in this country?

I have got three cases going at the moment and that is not good. How can you explain the spectacle of otherwise caring professionals inflicting what you have described as child abuse by professionals? Dr. Leonard Jason as a social psychologist said very perceptively that as a group professionals can commit acts of cruelty that they would not be capable of as individuals. But somehow their kind of self-righteousness of a cut case conference, all agreeing together allows them to proceed down these lines. I keep yearning for there to be a little boy who says ‘the emperor’s got no clothes on’, but there’s a lack of independent thinking in the process. So once the process starts it’s very hard to reverse.

I’m just astonished at how few doctors can confidently diagnose ME/cfs and protect children. I say I’m only seeing the bad cases. Maybe lots of children are being protected. The educationalists have a pressure on them to ensure school attendance. So if children aren’t protected by a diagnosis they will set the motion going. I sometimes think the child-protection social workers who are handling these innocent families are relieved to have such a soft target. Because most of the time their families are very tough to deal with. And if I was a social worker in child-protection I would much prefer to be drinking tea with a respectable innocent family and just taking one or two years of my time over it, than going to a house where my tires were slashed and I was threatened by Alsatians.

But I have to say there is something once the whole process gets going, there is a kind of almost sadistic element to some of the worst cases. They must be able to see the suffering they are causing. And so often as a group the professionals fail to actually speak to the child who is usually quite old enough to tell them their opinion and to put them right. And if you talk to the child it all comes straight.

I sometimes think we should make a dossier of all the cases. I haven’t got round to it but we should take it to people in parliament and colleges and paediatrics and everywhere because it is not getting better at the moment.

So you don’t see any change of attitude at all?

I sometimes feel it is getting worse.

And then you talk about a group of psychology who is at work. Everybody feels supported by the unanimity of the club.

Yes.

So you see independent psychologists who are driven along with this current.

I have seen quite a few cases where the fact that the family have declined the help of a psychiatrist has led to the child protection proceedings. The psychiatrists have felt rejected and have instituted child protection proceedings almost as a revenge. I should say there is another aspect to all this which sometimes comes more from paediatricians, and this is doctors who believe in their therapies. Whether it is graded exercise or cognitive behavioural therapy. And if it is a severe case and they can’t travel, the families are accused of ignoring medical recommendations. Now adults can do that, but parents refusing on behalf of their child instantly makes the paediatrician say they are refusing medical advice, this is child abuse.

So this is more or less a law…?

Yes. Well it is the false believe that they have got effective treatments. So often these treatments, the physiotherapy actually make the children worse. Can you think of anything which will cause, let’s say a new way of thinking? Which tools are available right now to help to effectuate that, if there is any? I have great difficulty thinking of anything at the moment. There is nothing actually happening. Maybe that a cure is found then the doctors will get ME right and the social workers won’t have any referrals. But we need something dramatic to happen. Another possibility is that some families actually take legal proceedings against the professionals and begin to counterattack. But I think most of them are so downtrodden and are so frightened of further action that’s beyond them. So at the moment I am still quite pessimistic.

Thank you so much for participating.

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.