The Elephant in the Room Series Three: Action for M.E. stuffs the elephant back into the cupboard


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The Elephant in the Room Series Three:

Action for M.E. stuffs the elephant back into the cupboard

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The Conceptual Issues in Somatoform and Similar Disorders (CISSD) Project ran from 2003 and was wrapped up by autumn 2007. But the Project’s principal administrator, Action for M.E., has only just this week published an article around the Project.

Were it not for the fact that I and a small number of others have been agitating for information on the CISSD Project since early 2007, it is likely that Action for M.E. would have published nothing at all.

“Classification conundrum” is published on pages 16 and 17 of the August 2009 issue of Action for M.E.’s membership magazine, InterAction (Issue 69).

Note that although the Project had been initiated by Dr Richard Sykes PhD, Dr Sykes does not appear to have contributed to this article, which is authored by Dr Derek Pheby. In fact, Dr Sykes and his role as instigator and co-ordinator of the Project is not mentioned at all. Nor is the Project’s funder – the charitable Trust run by Dr Sykes’ brother, Sir Hugh Sykes, a non-executive director of A4e, the largest European provider of Welfare to Work programmes.

A considerable portion of this article’s second page is given over to an image of a man, most aptly holding up a large question mark. There have been a very large number of questions about the nature and implications of the CISSD Project, the most obvious one being: why has Action for M.E. sought to keep the lid on it for so long?

Action for M.E. could have used this space to expand on the nature of the Project and list the names of those involved in it.

But I guess there is no easy way of broaching that the Project was chaired by psychiatrists, Professors Michael Sharpe and Kurt Kroenke; or that the workgroup comprised a couple of dozen international researchers and clinicians from the field of liaison psychiatry and psychosomatics and that not a single researcher outside this field was a member of the workgroup; or that the sole patient rep on board just happens to have co-authored books on CFS with the Project’s UK Chair, Michael Sharpe; or that none of our other national ME patient organisations were consulted; or that as stakeholders, we were kept in the dark about this Project for six years; or that the workgroup included influential, international researchers like Francis Creed, Kurt Kroenke, Arthur Barsky, Charles Engel, James Levenson, Javier Escobar, Per Fink, Peter Henningsen, Wolfgang Hiller, Bernd Löwe, Richard Mayou, Winfried Rief et al… several of whom now sit on the DSM-V Somatic Symptoms Disorders Work Group and the DSM Task Force, at the very core of the APA’s DSM revision process.

Easier by far to pad out this apologia piece with a stock photo…

Action for M.E. could usefully have linked to the review paper published by Project leads, Sharpe, Kroenke and Sykes, in July 2007, that resulted out of the CISSD workshops, but hasn’t done so; it could have linked to the CISSD Project “summary report” published on the ME Association’s website, in association with Dr Sykes, in June; it could have published a link to a copy of the CISSD “Final report” it received from Dr Sykes, in December 2007, which contains material omitted from the “summary report” as provided to the ME Association – but it has not published this document, either.

For links to these documents and an unauthorised version of the December 2007 “Final report” see:

The Elephant in the Room Series Two: Status of the CISSD Project unscrambled:

Appended is the article published in InterAction, yesterday, which represents all that Action for M.E. does want you to know.

Before it stuffs this Project back into the cupboard, I call on Action for M.E. to publish a copy of the December 2007 “Final report” by Dr Richard Sykes on its website, prefaced with an erratum note addressing the errors of coding within “Appendix B” of the document and also addressing Dr Sykes’ misconception that “Chronic fatigue syndrome” does not appear in the International Statistical Classification of Diseases and Related Health Problems: 10th Revision Version for 2006, Volume 3, the Alphabetical Index:

( Indexed on page 528, top right hand column: )

Once again, I call on the ME Association to publish a commentary and analysis of the CISSD Project, because to date, the MEA has made no comment whatsoever on the Project, itself, nor around the revision and “harmonization” processes towards DSM-V and ICD-11 that the CISSD Project was set up to inform.  The ME Association has yet to publish a copy of the “summary report” provided by Dr Sykes in its own magazine, ME Essential.

In June, an Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report: Francis Creed and Joel Dimsdale was published in the Journal of Psychosomatic Research, for which Francis Creed is co-editor.

Neither Action for M.E., the ME Association, Dr Sykes or Dr Derek Pheby has published commentary on the most recent proposals of the DSM-V Somatic Symptoms Disorders Work Group, as set out in this Editorial and in a very brief report on the APA’s DSM-V webpages:

April ’09 report of the DSM-V Somatic Symptoms Disorder Work Group:

I also call on the ME Association to approach Dr Sykes to set out the nature, aims and objectives of the “London Medically Unexplained Physical Symptoms and Syndromes (MUPSS) Project” for which he receives a research award of £27,000 per year through the Institute of Psychiatry for a new project that is once again being funded by the Hugh and Ruby Sykes Charitable Trust.

For information on the DSM-V and ICD-11 revision processes, and on the CISSD Project see:

“Classification conundrum” by Dr Derek Pheby, InterAction 69, Action for M.E. membership magazine, August 2009, pp 16 and 17:

We are at a moment in time when the underlying pathology of M.E. is on the point of elucidation at last, writes Dr Derek Pheby. It is becoming apparent that the syndrome we know as M.E. consists of several different phenotypes, each with its own distinctive pathological basis…

These should in due course be recognised as individual disease entities, a process that would be helped by the identification of specific biomarkers. This will be a major historical change. It should bring to an end the long running concern about the nature of M.E. and what sort of illness it should be regarded as being. In particular, it will end the argument that has been a serious concern of many people with M.E., that many doctors and others have regarded the illness as primarily psychiatric and that this is reflected in the main classification systems by which diseases are recorded.

Much concern has centred around so-called ‘somatoform disorders,’ as people with M.E. have frequently been assigned to this category and its position in the main statistical classification in current use, which is the International Classification of Diseases (10th. revision) (ICD-10).

‘Somatoform disorders’ are located in the ‘Mental and behavioural disorders’ chapter of ICD-10. They are also a category within a specifically psychiatric classification, widely used by psychiatrists, entitled the Diagnostic and Statistical Manual (4th edition) (DSM-IV).

Both ICD-10 and DSM-IV are statistical classifications. They are simply tools that doctors and researchers need if they are to examine trends in the occurrence of disease and assess the effectiveness of treatments and other interventions designed to reduce the occurrence of disease or mitigate its impact.

There is a paradox though, in that medical research looks forward into a future in which medical knowledge is increasing all the time, while medical terminology, including classification systems, essentially looks backwards to a time when medical knowledge was less advanced than it is today.

Thus ICD-10, which was introduced into the UK in 1994, was the product of thinking that mostly took place in the 1980s. It is therefore now a quarter of a century old, so it is not surprising if it is now beginning to look somewhat frayed around the edges.

Indeed in two areas it was already out of date when it was introduced into the UK, having already been supplanted by new classifications developed as a result of new scientific knowledge acquired since ICD-10 was first developed. These two areas were brain tumours and lymphomas and the new classifications were the Kleihuis histological classification of neurological tumours and the REAL (Revised European American Lymphoma) classification.


ICD-10 and DSM-IV will both soon be replaced by lCD-11 and DSM-V respectively. One input into the development of ICD-11 has come from a project entitled Conceptual Issues in Somatoform and Similar Disorders (CISSD). This was an international project, coordinated from Westcare.

When Action for M.E. merged with Westcare a few years ago, it found itself the residual legatee of this project. This caused unease among some people with M.E. who concluded, mistakenly, that the charity had committed itself to a party line which treats M.E. as a somatoform and hence essentially as a psychiatric condition. This is not the view of Action for M.E., which supports the World Health Organisation’s classification of M.E. as a neurological condition.

The CISSD project did not resolve the key question of whether the category of somatoform disorders should be retained in the classifications of mental disorders or not. However, it did recommend that if the category were to be retained, the diagnosis should not be made solely on the basis of the patient manifesting ‘medically unexplained’ symptoms but should require that the patient manifest ‘positive psychological criteria’ as well.

The authors also recommended that the subcategory in DSM-IV of ‘undifferentiated somatoform disorder’ – which is a pigeon hole into which it has not been uncommon for people with M.E. to be pushed – should be abolished.

These two changes should be beneficial to people with M.E. That benefit is likely to be marginal though, because it is not unknown for ‘positive psychological criteria’ to be wrongly attributed to people with M.E., in a process of post hoc rationalisation, in order to justify an inappropriate diagnostic label.

What is really needed to resolve this diagnostic problem is not a change in classifications but an increase both in scientific knowledge so that there is no longer any doubt as to how M.E. should be classified and in the respect in which people with M.E. are held and in the quality of health care they receive. There would be a few problems if all doctors and other health professionals deployed the same level of clinical knowledge and skill that the best do already.

Knowledge gap

Realistically, our knowledge of the various phenotypes within the M.E. umbrella is not yet adequate for this to be reflected in the revised classification. It remains to be seen also whether the CISSD recommendations are acted upon or not. However, one thing that is very clear is that ICD-11, on the day it is promulgated, will like ICD-10 already be  in part out of date and will become increasingly so over the decade or so that it will be in use.

Much of the difficulty arises from the concept of ‘medically unexplained’ symptoms. There is nothing innate about this. What may be medically unexplained to one generation of doctors may be perfectly capable of explanation to  the next, given the onward march of science.

It is entirely wrong to assign a person to a category of psychiatric illness because his or her symptoms are medically unexplained. Such a label points more to a deficiency in doctors because of their inability to explain symptoms, than in the patient. Indeed to assign someone to the wrong category on the basis of a false understanding of the nature of the illness and its context is an example of a well-known phenomenon which psychologists term ‘fundamental attribution error.’

Freud’s legacy

This tendency to regard people as having a primary psychiatric diagnosis when they are physically ill is probably a consequence of the baleful influence of Sigmund Freud on 20th century medicine.

Sarah Vaughan, a GP from Bristol, writing recently in the British Medical Journal, refers to Freud’s: “…most damaging legacy – namely, the widespread belief that all symptoms that elude diagnosis are psychosomatic in origin. This assumption has caused untold frustration and distress to patients who, on top of having illnesses that elude medical diagnosis, have to face being misdiagnosed as having psychological illness despite their protestations to the contrary.

“With the benefit of modern medical knowledge, Freud’s patients can be seen to have been relating histories that point clearly towards physical illnesses that weren’t known or diagnosable at the time.”

She concludes: “All too often, the medical profession ignores one of the most important lessons to be learned from Freud’s story – that, if we are unable to explain a patient’s symptoms, the reason may not be that the symptoms are psychosomatic but simply that our knowledge is imperfect.” (The dark side of Freud’s legacy (letter). BMJ 2009; 338: b1606).

Eventually, ICD-11 will be replaced by ICD-12, which in turn will rapidly become out of date.

CISSD is not a devious plot to “psychiatrise” M.E. Rather it should be seen as an honest attempt to rationalise an issue which has only arisen because medical knowledge is incomplete and which, at the end of the day, is no substitute for detailed scientific research to unravel the fundamental basis of this illness.

Dr Pheby is Project Coordinator for the National CFS/M.E. Observatory. He was formerly Chair of the Project Assurance Team at the NHS Centre for Coding and Classification. Read his report of the IACFS conference on p 12.

InterAction 69 August 2009