XMRV retrovirus replication: Round up 2 Patient org responses

XMRV retrovirus replication: Round up 2 Patient organisation responses

Abstract and links for full paper here: http://wp.me/p5foE-2Bd
Media coverage Round up 1 here: http://wp.me/p5foE-2Bj
Patient organisation responses Round up 2 here: http://wp.me/p5foE-2BA

Shortlink for this posting: http://wp.me/p5foE-2BA

Patient representation organisation statements

UK patient organisations

Action for M.E.  |  6 January 2010


Link between XMRV and CFS?

New UK research claims there’s no link between XMRV and CFS.

Research published today from Imperial and King’s College London announces that they have been unsuccessful in finding the XMRV retrovirus in a sample of British patients with chronic fatigue syndrome.

Last year, as reported on our website, the Whittlemore Peterson Institute in America found that 68 out of 101 patients with the illness appeared to be infected with the virus, compared to 8 out of 218 healthy controls.

The recent UK study analysed tissue samples from 186 patients with CFS using sensitive molecular testing techniques, but found no evidence that they had the XMRV virus.

In a press release issued by Imperial College, Professor Myra McClure, one of the authors of the study, said:

“Our research was carried out under rigorous conditions – we looked at samples from well-studied patients, and we used very sensitive testing methods to look for the virus. If it had been there, we would have found it. The lab in which we carried out the analysis had never housed any of the murine leukaemia viruses related to XMRV, and we took great care to ensure there was no contamination.

“We are confident that our results show there is no link between XMRV and Chronic Fatigue Syndrome, at least in the UK. The US study had some dramatic results that implied people with the illness could be treated with anti-retrovirals. Our recommendation to people with Chronic Fatigue Syndrome would be not to change their treatment regime, because our results suggest that anti-retrovirals would not be an effective treatment for the condition,” added Professor McClure.

Sir Peter Spencer, Action for M.E. says:

“Action for M.E. is disappointed to hear about these findings but no single small-scale study can be conclusive and the fact remains: American researchers found XMRV virus in 68 out of 101 people with chronic fatigue syndrome. Were those samples contaminated – or were those people susceptible to XMRV because they had CFS?

“What we need is more research involving large numbers of carefully characterised patients at a number of sites, preferably using fresh, not stored, blood samples. We also need studies on large numbers of both healthy people and people with other conditions.

“250,000 British men, women and children have this devastating illness. They need answers, better treatments and a cure.”

Note: Imperial College London Press Release

ME Association  |  6 January 2010

ME Association statement – XMRV: UK research group fails to replicate American findings

Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome.

Erlwein O et al. Public Library of Science/PLoS ONE open access journal: January 2010.

In October 2009, an American research group published a paper in Science which reported that they had found evidence of a new retrovirus called XMRV (xenotropic murine leukaemia virus-related virus) in a very high percentage (68/101) of people with ME/CFS – whose diagnosis met with both 1994 CDC/Fukuda research criteria and the Canadian clinical criteria. This compared to only 8/218 positive tests in the healthy controls.

The MEA has provided regular website updates on these findings and offered to help fund further research studies which would attempt to replicate these findings. Our latest XMRV update can be found here.

A number of research groups both here and abroad are now carrying out XMRV replication studies using stored blood samples.

The first study to be reported in the medical literature comes from a very reputable virology/infectious disease group at Imperial College in London. The group obtained stored blood samples from patients who have been attending the King’s College Hospital ME/CFS service.

The virologists examined 186 blood samples from the KCH patients who met Fukuda/CDC criteria for CFS using sensitive molecular testing techniques. DNA (viral genetic material), which was extracted from the blood samples, was screened for XMRV provirus and for the closely related murine leukaemia virus (MLV) by nested PCR (polymerise chain reaction)using specific oligonucleotide primers. PCR is a highly sensitive method that can locate tiny viral fragments. No molecular evidence of XMRV or MLV sequences was found in any of the ME/CFS samples.

These results clearly represent a major difference in scientific opinion on the possible role of XMRV in ME/CFS.

Among the explanations that could be relevant are:

1 The use of different types of ME/CFS patients in the two studies. The American patients had ‘severe disability’, were diagnosed using both CDC/Fukuda and Canadian clinical criteria, and were obtained from a small group of private physicians who take a very biomedical approach to ME/CFS. The UK sample, who had ‘high levels of disability’, were diagnosed using only Fukuda/CDC criteria and came from King’s College Hospital in London – an NHS tertiary referral centre that specialises in behavioural interventions.

2 There may be different prevalence rates for XMRV in different countries and it is interesting to note that German researchers were unable to replicate the American results in relation to the presence of XMRV in patients with prostate cancer.

3 The UK and USA laboratories used slightly different techniques for investigating the presence of XMRV and there may have been differing levels of risk in relation to the possibility of laboratory XMRV contamination.

Comment from Dr Charles Shepherd, honorary medical adviser to the ME Association:

“The ME Association has taken a cautious and open-minded view about the initial XMRV findings and offered to help fund further research into what could be a very significant finding. Although these UK results are clearly questioning the validity of the American findings, no single study can be regarded as being conclusive. So we believe it is important to wait for the results of further replication studies before drawing any firm conclusions about the possible role or pathogenicity (disease-causing ability) of XMRV in ME/CFS. In the meantime, there seems little point in people with ME/CFS spending large sums of money in arranging private tests for XMRV. And in our current state of uncertainty it would not be appropriate for doctors to start prescribing antiretorviral treatment to people with ME/CFS”.

Invest in ME  |  6 January 2010


BBC NEWS ARTICLE “Research finds no proof that a virus is the cause of ME”

The perennial problem of trials such as this from ICL and those funded by the Medical Research Council is that they do not use well defined patient cohorts which can negate the research results.

To replicate a research study the patient samples used and the methodology have to be the same and in this case it appears that there are differences in both compared to the study published online 8 October, 2009 by the Science magazine.

The organisations in USA who discovered the XMRV retrovirus used the Canadian Guidelines to select patients for their research and Invest in ME feel the Canadian Guidelines should be used for all research.

Those who portray ME as a somatoform illness are fully aware that using patients who do not fit strict selection criteria will obviously skew results. We therefore have serious doubts about the the results of the ICL research.

If the correct patient cohorts are not participating in the trials or different methods are used then this will affect the results.

The result of finding no sign of XMRV would point to a different methodology to that used in the research published by the Science magazine in which 3.7% of controls tested positive.

The work performed by the Whittemore-Peterson Institute (WPI) and the National Cancer Institute and the Cleveland Clinic is of the highest quality and has been validated by Science magazine.

Much more research is underway and the results from the first XMRV replication trials such as these from ICL prove little.

People with ME and their families should expect these “false” results to be publicised early, especially as ME has been ignored by the government and research organisations for generations. However, the new XMRV research has changed the landscape for good and patients and carers can look forward to a new era of ME/CFS research based on the biomedical basis for the illness.

Proper science is now finally being performed.

Those who have delayed or stopped high quality biomedical research into ME from being performed in the past, and those who continue to downplay the significance of the new research from WPI, will not be in a position to continue this denial for much longer.

The WPI have promised more exciting news which we can expect to hear at the forthcoming 5th Invest in ME International ME/CFS Conference on 24th May in London.

Invest in ME remain convinced that the WPI research is of monumental importance to the future of research into ME and we look forward to the future and the momentum in biomedical research into ME which the XMRV research has generated.

Invest in ME

The BBC article is available – click here

The PLoS One article is here

Further links:

Documented involvement of Viruses in ME/CFS
5th Invest in ME International ME/CFS Conference 2010
The Proof is Out There – the WPI research – click here

US patient organisations

CFIDS Association of America  |  6 January 2010

XMRV Negative Results Emphasize Need for Robust Replication Study

Suzanne D. Vernon, PhD
Scientific Director

A study testing for evidence of XMRV infection in CFS patients in the United Kingdom has reported negative results. This is the first publication following the article in the top-ranked journal Science from researchers at the Whittemore Peterson Institute, the National Cancer Institute and Cleveland Clinic that garnered worldwide attention from the media and scientific community. The new report, published Jan. 6, 2010, in the open access online journal PLoS ONE, failed to detect XMRV in CFS, but should not be considered a valid attempt to replicate the findings described by Lombardi et al., in the Oct. 8, 2009 Science article.

The PLoS ONE paper by Otto Erlwein, Steve Kaye, Myra O. McClure, Jonathan Weber, Gillian Wills, David Collier, Simon Wessely and Anthony Cleare is titled, “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” The investigators tested peripheral blood DNA from 186 routine clinic attendees who met 1994 (Fukuda) CFS case definition criteria and were well-characterized from participation in prior neuroendocrine and cognitive behavioral therapy studies. These 186 CFS patients were reported to be unwell for a median of four years with high levels of fatigue and disability.

This team of researchers used a special type of DNA “xeroxing” called nested polymerase chain reaction (PCR) reaction to amplify specific segments of the XMRV proviral DNA from the genomic DNA obtained from these 186 CFS subjects. In essence, they were looking to see if XMRV genetic material had integrated into human genetic material, which is a key characteristic of retroviral infection. The experiment included positive, negative and contamination controls, but did not test any samples taken from healthy subjects. The samples were coded so that the origin of the DNA was not known to the person conducting the PCR assays. XMRV was not detected in any of the 186 samples.

Can this study be considered comparable to the results published by Lombardi et al., in Science? In short, no. Both studies included CFS patients defined by the 1994 case definition criteria, but this is where the comparability ends. Here are some of the ways the PLoS ONE and Science methods differ:

The blood was collected from CFS patients in different types of blood collection tubes.
The genomic DNA was extracted and purified using different techniques.
The amount of genomic DNA included in the amplification assay was different.
Different primer sequences were used that amplified different regions of the XMRV proviral DNA.
The conditions of the PCR amplification assay were different – from the numbers of cycles, to the type of polymerase used.
Should these differences affect an investigator’s ability to detect XMRV? To a microbiologist with experience handling samples and studying various infectious agents (as I am), these variances in procedure could make the difference between detecting XMRV or not.

It very well could be true that XMRV is not present in the U.K. as Erlwein, et al. suggest in their discussion, but it is also possible that the technique used in the PLoS ONE paper was suboptimal due to the different methods employed, when compared to the original experiments conducted by Lombardi, et al.

The U.S. Department of Health and Human Services Blood XMRV Scientific Research Working Group is conducting a rigorous study to detect XMRV. Multiple laboratories will standardize methods to optimize sensitive detection of XMRV proviral DNA and viral RNA and then, once methods are standardized, these same laboratories will test coded panels of blood samples obtained from healthy blood donors and CFS patients. We look forward to the results of this study and urge that it be completed expeditiously, especially in light of this report from the U.K. In the meantime, be prepared to read about more studies with conflicting findings. Rather than simply accept or dismiss new information, we will help make sense of why discrepant results occur.

Perhaps the most important statement in the PLoS ONE paper is the acknowledgement by this group of investigators that CFS is an incapacitating organic disease affecting millions of people worldwide. Once XMRV detection methods are optimized and made widely available, we encourage this group of researchers to take another look at XMRV as a possible explanation for the organic basis of CFS in the U.K.

Erlwein O, Kaye S, McClure MO, Weber J, Willis G, Collier D, Wessley S, Cleare A. (2010) Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS ONE 5(1):e8519. doi:10.1371/journal.pone.0008519

Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science 8 October 2009. 1179052.


Suzanne D. Vernon, PhD, earned her doctorate in virology at the University of Wisconsin at Madison and worked in public health research on infectious diseases at the U.S. Centers for Disease Control and Prevention for 17 years before joining the CFIDS Association of America’s staff as scientific director in 2007. She has more than 70 peer-reviewed scientific publications on topics including human immunodeficiency virus, human papillomavirus, cervical cancer and chronic fatigue syndrome. Dr. Vernon has initiated and participated in numerous international and multidisciplinary research collaborations and she now leads the CFIDS Association’s research program. The CFIDS Association of America is the nation’s largest philanthropic supporters of CFS research.

Advocacy commentary

Dan Moricol’s ME-CFS Community Network 

Cort Johnson’s Phoenix Rising website

The XMRV Buzz! – the Latest News on XMRV



Cort Johnson’s Phoenix Rising Forums

The Fight is on…Imperial College XMRV Study


XMRV retrovirus replication: Round up 1

XMRV retrovirus replication: Round up 1

Abstract and links for full paper here: http://wp.me/p5foE-2Bd
Media coverage Round up 1 here: http://wp.me/p5foE-2Bj
Patient organisation responses Round up 2 here: http://wp.me/p5foE-2BA

Shortlink for this posting: http://wp.me/p5foE-2Bj

Media coverage

The Guardian  |  Sarah Boseley  |  6 January 2010

Research casts doubt over US chronic fatigue virus claim
     UK study fails to find proof of headline-grabbing American study into test for ME/CFS

Ed: Note that in 2001, the Guardian’s Sara Boseley had reported:

“Prof Wessely has quit the field – and is not the only professional to have ceased involvement with CFS.”
        Storm brews over ‘all in mind’ theory of ME, Guardian, 20 September 2001

A week later in the Guardian, Ms Boseley wrote:

“Simon Wessely, of the Department of Psychological Medicine at Guy’s, King’s and St Thomas’s School of Medicine in London, is a former key figure in the study of ME/CFS who has felt the heat and largely backed out of the kitchen.” 
        A very modern epidemic, Guardian, 27 September 2001

But just like the Energizer Bunny, Professor Wessely keeps on going…

Whilst on the Guardian site, I was discomforted to see that the Guardian evidently considers its readership so lacking in gumption and basic needlework skills that it has published an article with step by step instructions on How to make a draught excluder and having stuffed it, how to pimp your draught excluder so it looks like a snake…

Optional: To make a snake draught excluder, simply sew on two buttons for eyes and a piece of red ribbon (with a V-shaped piece cut out of one end) for a forked tongue.

It’s an ill wind… 


New Scientist  |  Clare Wilson and Ewen Callaway  |  6 January 2010

CFS patients in UK show no signs of suspect virus


Daily Mail  |  Fiona Macrae  |  6 January 2010

British experts say ME virus is a myth


Independent   |  Steve Connor   |  6 January 2010

Researchers must work together


Science Daily   |  6 January 2010

New Virus Is Not Linked to Chronic Fatigue Syndrome, Suggests New Research


e! Science News  |  5 January 2010

New virus is not linked to chronic fatigue syndrome, suggests UK research


BBC News  |  Michelle Robertsm Health reporter  | 5 January 2010

Research finds no proof that a virus is the cause of ME


Additional reporting, today, will be added to the top of this posting.

Abstract paper: Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome

Abstract paper: Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome

Abstract and links for full paper in this posting: http://wp.me/p5foE-2Bd
Media coverage Round up 1 here: http://wp.me/p5foE-2Bj
Patient organisation responses Round up 2 here: http://wp.me/p5foE-2BA

Abstract and access to full paper in text and PDF format on PLoS ONE site here:


or open PDF here: Imperial College London study

Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome

Otto Erlwein1, Steve Kaye1, Myra O. McClure1*, Jonathan Weber1, Gillian Wills1, David Collier2, Simon Wessely3, Anthony Cleare3

1 Jefferiss Research Trust Laboratories, Section of Infectious Diseases, Wright-Fleming Institute, Faculty of Medicine, Imperial College London, St Mary’s Campus, Norfolk Place, London, United Kingdom, 2 Social Genetic and Developmental Psychiatry Centre, Institute of Psychiatry (King’s College London) De Crespigny Park, Denmark Hill, London, United Kingdom, 3 Department of Psychological Medicine, Institute of Psychiatry, King’s College London, Camberwell, London, United Kingdom


In October 2009 it was reported that 68 of 101 patients with chronic fatigue syndrome (CFS) in the US were infected with a novel gamma retrovirus, xenotropic murine leukaemia virus-related virus (XMRV), a virus previously linked to prostate cancer. This finding, if confirmed, would have a profound effect on the understanding and treatment of an incapacitating disease affecting millions worldwide. We have investigated CFS sufferers in the UK to determine if they are carriers of XMRV.


Patients in our CFS cohort had undergone medical screening to exclude detectable organic illness and met the CDC criteria for CFS. DNA extracted from blood samples of 186 CFS patients were screened for XMRV provirus and for the closely related murine leukaemia virus by nested PCR using specific oligonucleotide primers. To control for the integrity of the DNA, the cellular beta-globin gene was amplified. Negative controls (water) and a positive control (XMRV infectious molecular clone DNA) were included. While the beta-globin gene was amplified in all 186 samples, neither XMRV nor MLV sequences were detected.


XMRV or MLV sequences were not amplified from DNA originating from CFS patients in the UK. Although we found no evidence that XMRV is associated with CFS in the UK, this may be a result of population differences between North America and Europe regarding the general prevalence of XMRV infection, and might also explain the fact that two US groups found XMRV in prostate cancer tissue, while two European studies did not.

Citation: Erlwein O, Kaye S, McClure MO, Weber J, Wills G, et al. (2010) Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome. PLoS ONE 5(1): e8519. doi:10.1371/journal.pone.0008519

Editor: Douglas F. Nixon, University of California San Francisco, United States of America

Received: December 1, 2009; Accepted: December 4, 2009; Published: January 6, 2010

Copyright: © 2010 Erlwein et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Funding: AC, DC and SW are partially funded by the South London and Maudsley NHS Foundation Trust/Institute of Psychiatry National Institute of Health Biomedical Resaerch Centre. The team from Imperial College is grateful for support from the NIHR Biomedical Research Centre Funding Scheme. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exist.

* E-mail: m.mcclure@imperial.ac.uk

Full paper, tables and references here, published under “Open Access:


Can the MRC PACE Trial be justified: Margaret Williams 17.12.09

A new article from Margaret Williams:

Shortlink:  http://wp.me/p5foE-2xK

Open as Word document:  Can the MRC PACE Trial be justified Williams 17.12.09

Also available at:  http://www.meactionuk.org.uk/Can-the-MRC-PACE-Trial-be-justified.htm


Can the MRC PACE Trial be justified

by Margaret Williams

17 December 2009

In March 2003 the House of Commons Select Committee on Science and Technology produced its Report “The Work of The Medical Research Council” (HC 132) in which MPs issued a damning judgment on the MRC, lambasting it for wasting funds and for introducing misguided strategies for its research. The Select Committee had received seven representations about the MRC’s refusal to heed the biomedical evidence about ME/CFS. MPs found evidence of poor planning and of focusing on “politically-driven” projects that have diverted money away from top-quality proposals. The unprecedented attack was the result of a detailed probe into the workings of the MRC. In particular, MPs questioned why the MRC was content to support policies and projects that are likely to perpetuate such criticism.

Given that biomedical research, including gene research (which has shown that in people with ME/CFS, there are more gene abnormalities present than are found in cancer sufferers) has demonstrated that the psychiatrists who hold such sway at the MRC are comprehensively wrong about ME/CFS, nowhere could such criticism be more apposite than in relation to the PACE Trial.

Patients with ME/CFS and their families are in despair, because no-one in authority in the UK seems to be listening: as Mike O’Brien MP, Minister of State for Health, made plain at the APPGME meeting on 2nd December 2009, Ministers can no longer tell agencies of State what to do. This apparently means that, no matter what conclusions are arrived at or what recommendations are made or what evidence is put before a Minister, the Minister concerned can deny having any power to implement change. The Minister himself is reported to have said that he could not require the MRC to undertake research in any specific field, nor could he require Primary Care Trusts to follow Ministerial command. As far as ME/CFS is concerned, it seems that there is nothing the Government can – or will – do about the current situation.

It is apparent that the Government feels no duty of care towards those whose life has been devastated by ME/CFS, a situation that is borne out by Professor Stephen Holgate’s confirmation at the Royal Society of Medicine Meeting on 11th July 2009 (Medicine and me; hearing the patients’ voice) that the Government will not permit integrated research into ME/CFS.

This can only mean that the influence of the Wessely School over the lives of people with ME/CFS will continue and that their tactics of denial will remain unchallenged, no matter what the calibre of the biomedical evidence showing them to be wrong. As people recently drily commented on an ME group, those tactics include:

“load up your committees with your biased friends and pretend they are offering a fresh look; give really negative scorings to biomedical applications; try to stop biomedical papers getting published in the better known journals; make sure to keep on publishing psychiatric rubbish to bias the general medical population and scientific community against any other explanation, and give the impression that CBT/GET is all that is needed i.e. no need to waste all that money on silly biomedical projects” (LocalME@yahoogroups.com 6th December 2009) and

“ensure you use the sketchiest diagnostic criteria you can get away with; wherever possible, avoid seeing / talking to patients at all; never discuss / involve the severely affected; avoid using objective outcome measures; rotate the name of lead authors on papers and ensure you include plenty of reference papers from your psychosocial mates….” (LocalME@yahoogroups.com 7th December 2009).

As others have noted, the strategy is (1) to ignore ME; (2) to ensure that CFS is seen as a problem of false perception, then (3) to reclassify “CFS/ME” as a somatoform disorder (Co-Cure NOT:ACT: 12th January 2008), which is far removed from the reality of ME/CFS, the CNS dysfunctions of which are described by Dr Byron Hyde as being caused by “widespread, measurable, diffuse micro-vasculitis affecting normal cell operation and maintenance….The evidence would suggest that ME is caused primarily by a diverse group of viral infections that have neurotropic characteristics and that appear to exert their influence primarily on the CNS arterial bed” (ibid).

Patients and their families, many clinicians and researchers are well aware of such strategies and tactics but – so powerfully has the Wessely School myth about ME/CFS been promulgated – have been unable to halt them.

As Dr Jacob Teitelbaum reported, the XMRV virus study clearly documents that (ME)CFS is validated within the mainstream medical community as a real, physical and devastating illness, “again proving that those who abuse patients by implying that the disease is all in their mind are being cruel and unscientific…Though the economics may cause a few insurance companies to continue to unethically deny the science, so they can avoid paying for the health care and disability costs they are responsible for, this research should speed up understanding of the illness. Meanwhile, for those with the illness, their families and their physicians, it is now clear that this is a real and devastating illness” (Co-Cure RES: 4th December 2009).

There can be no doubt that, for patients with ME/CFS as distinct from those suffering from chronic “fatigue”, neither CBT nor GET is effective, otherwise everyone would by now be cured. Continue reading

The Medical Research Council’s secret files on ME/CFS: Margaret Williams

Shortlink: http://wp.me/p5foE-2vm

Ed: Related links:

National Archives site

If you go to these URLs, below, scroll each page for content and then open all the links under “Context” on each of the parent pages, and their child pages, there is information about the nature of some of the material archived:

Piece reference FD 9/3781
The International Institute for Peaceful Change, Hythe, Kent: correspondence concerning research into myalgic encephalom…


Piece reference FD 23/4553
Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS) : papers and journal articles; correspondence and enquiries with MRC replies. …


Item reference FD 23/4553/1
Closed extracts: 40 pages (the open file is available at FD 23/4553).


Series reference BN 141
Department of Health and Social Security: Medical Policy





or open MS Word document here:  The MRC secret files on ME (v2)

(Ed: Note that the font size of this document has been increased from that of the original, as supplied, and therefore page numbers will not correspond with those of the PDF.)

Permission to Repost

The Medical Research Council’s secret files on ME/CFS

Margaret Williams

10 December 2009

It is an established fact that the MRC has a secret file on ME that contains records and correspondence since at least 1988, which, co-incidentally, is about the time that Simon Wessely began to deny the existence of ME. The file is held in the UK Government National Archives at Kew (formerly known as the Public Record Office) and was understood to be closed until 2023, but this closed period has been extended until 2071, at the end of which most people currently suffering from ME will be conveniently dead:

As one puzzled ME sufferer recently noted: “why on earth have a 73 year embargo on these documents on an illness where a load of neurotic people, mostly women, wrongly think they are physically ill  ill?”


(MEActionUK@yahoogroups.com; 14th October 2009)

The MRC’s secret files on ME/CFS are closed (ie. unavailable to the public) for an unusually lengthy period of 83 years. The standard closure period is 30 years but, as in the case of these files on ME/CFS, the standard closure period may be extended.

The 30-year rule usually applies to documents that are exempt from release under a Freedom of Information Act (FOIA) request and include, for example, documents concerning the formulation of government policy, documents related to defence, to national security, to the economy, and documents that are considered very confidential.

It may be recalled that during the life of the Chief Medical Officer’s Working Group on ME/CFS (1998-2002), lay members were ordered not to discuss the deliberations and were even threatened with the Official Secrets Act, for which no explanation was proffered. A letter dated 16th June 2000 from Mrs Helen Wiggins at the Department of Health NHS Executive Headquarters in Leeds was sent to lay members of the Working Group; this letter stressed that it had become increasingly important that any documents or information, in whole or in part, that might contribute to the report must be kept confidential and to this end, members of the Working Group might be compelled to sign the Official Secrets Act. This was followed up by a letter dated 23rd October 2000 from Lord Hunt of Kings Heath, then Parliamentary Under Secretary of State at the Department of Health (ref: POH (6) 5380/83), confirming that the information held by the Working Group might in certain circumstances indeed be covered by the Official Secrets Act.

If the psychiatric lobby which dominated that Working Group was so confident that it was correct about ME/CFS, why the need to force the suppression of opposing views by resorting to threats of prosecution under the Official Secrets Act in a Working Group that had nothing to do with State security but was supposed to be acting simply in the best interests of sick people? This was in marked contrast to the “Key working principles” set out in the first Briefing Note of March 1999, which stated: “The Group must have maximum ‘transparency’ ie. as much information about its activities to be distributed as possible to all potential interested parties”.

One can but wonder how the consideration of ME/CFS could rank as a state secret and of what, precisely, was the Department of Health so afraid that it even considered the use of such draconian powers? For the record, Mrs Wiggins was replaced by Robert Harkins and it was he who sent the letter dated 25th May 2004 (ref: TO1056746) in which he stated that the then new centres for CFS “will be headed up exclusively by psychiatrists” , which was deemed to be more evidence of Government policy on “CFS/ME”.

People wishing to access documents archived at Kew are able to make an application to access documents that are not redacted or closed, but the procedure is lengthy. Prior notificaton and advance booking are required; people must remove their coats/jackets and leave them, together with personal possessions including handbags, in a locker with a see-through door for which a numbered key is provided; proof of identity is mandatory and every person is newly photographed on arrival.

Legitimate access has been obtained to some of these archived documents about ME/CFS and they make interesting reading, for example…

Read on here:



or open MS Word document here:  The MRC secret files on ME (v2)

Correspondence between Stephen Ralph and Dr Charles Shepherd

Correspondence between Stephen Ralph and Dr Charles Shepherd

WordPress Shortlink: http://wp.me/p5foE-2jm

The opinion piece below, which includes extracts from recent correspondence with Dr Charles Shepherd is authored and published by Stephen Ralph; the views and opinions expressed are the views and opinions of Mr Ralph and any comments or queries resulting out of this opinion piece should be addressed to Mr Ralph and not to ME agenda.

Stephen Ralph maintains a website at  www.meactionuk.org.uk 

Dr Charles Shepherd is an Honorary Medical Advisor and a Trustee/Director of the ME Association http://www.meassociation.org.uk/

A copy of the statement which Stephen Ralph quotes from is here:

 XMRV and ME/CFS: WHAT DO WE KNOW SO FAR? AND WHAT DON’T WE KNOW? (VERSION 3) (04.11.09)  http://wp.me/p5foE-2kq


By Stephen Ralph  ME Action UK

Permission to Repost

06 November 2009

Like many of you, I was alarmed when I read the recent MEA XMRV Statement No.3 particularly because of one telling sentence.

I decided to ask Dr Shepherd a series of questions and although I had several answers, I had no answer at all to one important question that I asked several times.

I asked Dr Shepherd about this statement.

“Demonstrating a link between a retrovirus and ME/CFS does not, by itself, resolve the physical vs psychological debate.

Research studies have demonstrated links between retroviruses and diseases as diverse as autoimmune disorders (which could be relevant to ME/CFS), immunodeficiency diseases, multiple sclerosis, tumours, anaemias and even schizophrenia.”

In reply I got the following from Dr Shepherd.

“I don’t think this comment will have any effect whatsoever on psychiatry.

Psychiatrists already know that viruses and psychiatric illness can sometimes be linked.

I put this info into version 3 because some people are wrongly assuming that having a viral link in an illness means that it must be physical rather than psychological. And that the physical vs psychological battle in ME/CFS is now almost over. I only wish…..

Retroviruses may be involved in schizophrenia and it is being said the up to 40% of people with autism have XMRV.”

I then asked Dr Shepherd what he would do if he found he was XMRV negative and how this might impact on his judgment.

In reply I had the following from Dr Shepherd…

“I don’t know my XMRV status. I obviously could have access to XMRV testing facilities. But as knowing my XMRV result isn’t going to affect either my diagnosis of ME or the management of my illness at this stage I don’t see any point in being tested.”

Lastly, I asked Dr Shepherd if he did or did not support the views of Professors Simon Wessely, Michael Sharpe and Peter White.

I asked this question twice for the sake of clarification.

Dr Shepherd has decided not to answer that question.

I asked the question because on numerous occasions the MEA have released hedge betting, sitting-on-the-fence statements or cheek turning Statements that effectively support the agenda of Somatoform Psychiatry or completely ignore the agenda of Somatoform Psychiatry.

The statement regarding XMRV not ending the debate on mental v physical is for my eyes indicating that yet again the MEA and Dr Shepherd are entertaining the possibility that Wessely White and Sharpe are right.

Dr Shepherd – you should be actively ending the involvement of Professors Wessely, White and Sharpe and you should be representing the total “State of Science” from across the Atlantic as is the case with the ESME – see their website for example…


…instead of selectively picking what you want to feed your members and back peddling on the profound implications of XMRV and what was said at the CFSAC last week.

As we all know, the liaison faction of psychiatry firmly and militantly assert that CFS is a functional psychosomatic syndrome and that ME does not exist at all.

We know that the likes of Wessely, White and Sharpe are trying to get CFS into the next edition of the DSM – DSM-V and reclassified in ICD-11.

Both Action for ME and the ME Association are doing nothing to stop this agenda.

I asked Dr Shepherd some time ago if he or the MEA were going to do anything about the CSSID DSM-V ICD-11 agenda and Dr Shepherd said he was too busy and it wasn’t on his list of things to do.

In my view, the ME Association is not a lot more than the Public Relations arm of Action for ME.

Yes they seem approachable and yes they seem to press all the buttons that please some of their members.

But as soon as you ask anything considered “controversial” or important – then Dr Shepherd and/or the MEA goes silent and refuses to answer the question as is the case by default with Action for ME.

It seems to me that here in the UK and for many years, the ME population are being held hostage by the mental health movement who seem to have castrated both Action for ME and the ME Association who between them dominate the arena yet lay silent and do nothing to counter the mental health agenda…

So it seems to me that neither charity actually give a damn about the concerns of the ME community unless those views accord with their agenda that they will not discuss when challenged in ANY detail.

They say the devil is in the detail but we do not know what the detail is because when we ask we get nothing back.

Under these circumstances we need those over in the USA and those in the UK with Independence of mind and purposes such as ME Research UK, the 25% ME Group and Invest in ME – to come to the rescue of the UK ME patient population.

If people are not happy with this e-mail I have written and you think I am being unfair then you should ask Dr Shepherd and the MEA yourselves and get the answers he would not give to me or the many others who have asked similar questions over the years that never get answered.

Why does the MEA turn the other cheek and choose not to robustly challenge the views of Professor Wessely and his colleagues and instead state that “they already know” so that these individuals are therefore beyond challenging…

How exactly does liaison psychiatry “already know” that retro-viruses cause mental illness and does the MEA believe that XMRV potentially causes functional mental illness in people with ME? If not then why stay silent – creating a space for the opposition to occupy.

Why does the MEA put out neutered statements that reflect the views of liaison psychiatry instead of using all the evidence available to robustly and technically challenge those views?

Why is the ME Association calling for the use of the CDC Fukuda Criteria in UK XMRV research when the Fukuda criteria has been and is still being exploited by Wessely et al due to its well known ability to produce a heterogeneous patient group and therefore research results that are by default inconclusive and “mixed” and challengeable by those with a mental health agenda?

Why does the ME Association not firmly call for the use the Canadian criteria or use both Fukuda and the Canadian criteria in parallel research to make the research outcomes more meaningful and less open to exploitative deconstruction when the ME Association at one time adopted the Canadian Criteria by a democratic vote and then quietly swept that democratic vote under their carpet?

This is all about accountability. We should be given full answers to all of the above questions.

What is wrong in asking?  Why does that make us bad?

Yours sincerely,

Stephen Ralph


Journal of Psychosomatic Research: In Press: Is there a better term than “Medically unexplained symptoms”?


Image | belgianchocolate | Creative Commons


APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

The Elephant in the Room Series Three:

Journal of Psychosomatic Research In Press: Is there a better term than “Medically unexplained symptoms”?

WordPress Shortlink for this posting: http://wp.me/p5foE-2d6

24 October 2009


An In Press version of the Editorial: Is there a better term than “Medically unexplained symptoms”?, to be published in a forthcoming issue of the Journal of Psychosomatic Research, is already available online (purchase required). The Editorial needs to be read in conjunction with a white paper from:

The European Association for Consultation-Liaison Psychiatry and Psychosomatics (EACLPP) http://www.eaclpp.org/

A white paper of the EACLPP Medically Unexplained Symptoms study group

Patients with medically unexplained symptoms and somatisation – a challenge for European health care systems  (Gillian.D.Dunkerley@manchester.ac.uk )

The White Paper can be downloaded from the EACLPP site here: http://www.eaclpp.org/working_groups.html

The document is approx 76 pages long, including tables and charts.  I had considerable difficulty opening this document, in May, due to a corrupted table and I note that the file on the EACLPP site is still glitchy. A copy of the document was therefore obtained directly from the EACLPP and can be opened by clicking the link below.  Note that there may have been revisions to the document as supplied on 19 May, but it will serve as reference for those who might also experience difficulties opening the file from the EACLPP website. If you would like a copy of the file sent to you as a Word.doc, email ME agenda with “EACLPP MUS DOC” in the subject line and I will forward a copy [600 KB].  The tables and charts are slow to load.

Draft – prepared by: Peter Henningsen and Francis Creed January 2009

EACLPP Working group on MUS version 16 Jan 2009

The current issue of the Journal of Psychosomatic Research is Volume 67, Issue 5, Pages A1-A4, 367-466 (November 2009)  http://www.sciencedirect.com/science/journal/00223999

Journal of Psychosomatic Research

In Press

Is there a better term than “Medically unexplained symptoms”?

Abstract: http://tinyurl.com/jpsychoresMUS


References and further reading may be available for this article. To view references and further reading you must purchase this article.


Francis Creed a, Elspeth Guthrie a, Per Fink b, Peter Henningsen c, Winfried Rief d, Michael Sharpe e and Peter White f

a University of Manchester, Manchester, UK 
b University Hospital Aarhus, Denmark
c Technical University, Munich Germany
d University of Marburg, Germany
e University of Edinburgh, UK
f Queen Mary University of London, UK

Received 24 August 2009; revised 24 August 2009; accepted 7 September 2009. Available online 17 October 2009.

Article Outline


“Medically unexplained symptoms” – one advantage, but many reasons to discontinue use of the term

Criteria to judge the value of alternative terms for “medically unexplained symptoms”

Terms suggested as alternatives for “medically unexplained symptoms”

Implications for treatment

Implications for DSM-V and ICD-11




Francis Creed is Co-Editor of the Journal of Psychosomatic Research.

Francis Creed, Per Fink, Peter Henningsen and Winfried Rief were all members of the international CISSD Project, (Principal Administrators: Action for M.E.; Co-ordinator: Dr Richard Sykes. Dr Sykes is now engaged in the “London MUPSS Project” in association with the Institute of Psychiatry).

Michael Sharpe was UK Chair for the CISSD Project.

Michael Sharpe and Francis Creed have been members of the APA’s DSM-V Somatic Distress Disorders Work Group since 2007.

Francis Creed (UK), Peter Henningsen (Germany) and Per Fink (Denmark) are the co-ordinators of European EACLPP MUS Work Group.

Francis Creed and Peter Henningsen were the authors of “A white paper of the EACLPP Medically Unexplained Symptoms study group – Patients with medically unexplained symptoms and somatisation – a challenge for European health care systems”, January 2009.

Draft white paper here: http://www.eaclpp.org/working_groups.html

Per Fink is a member of the Danish Working Group on Chronic Fatigue Syndrome, established in August 2008 and expected to complete its work in spring 2009.


An Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report by DSM-V Work Group members, Joel Dimsdale and Francis Creed on behalf of the DSM-V Workgroup on Somatic Symptom Disorders was published in the June 2009 issue of the Journal of Psychosomatic Research.

Full text of the June 2009 DSM-V SSD Work Group preliminary report can be accessed here:


See section: Psychological factor affecting general medical condition 

“…The conceptual framework that we propose will allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome…”

No updates or reports have been published on the APA’s website by DSM-V Task Force or Work Groups since brief reports issued in April 2009. DSM-V is anticipated to be finalised in May 2012 with field trials expected to start this October. No detailed Timeline for DSM-V is available.

Previous DSM Task Force chairs, Robert L Spitzer and Allen Frances, have been two of the most vocal critics of the current Task Force’s oversight of the revision process. Read their joint letter to the APA Board of Trustees here:  Letter to APA Board of Trustees July 09. In Dr Frances Responds to Dr Carpenter: A Sharp Difference of Opinion, Psychiatric Times, 9 July, Frances called for the posting of all the suggested wordings for DSM-V criteria sets well before considering field trials.


Javier Escobar, co-author of the Special Report: Unexplained Physical Symptoms: What’s a Psychiatrist to Do? Psychiatric Times, Aug 2008, was also a member of the Work Group for the “Conceptual Issues in Somatoform and Similar Disorders (CISSD) Project.

Javier Escobar is a member of the DSM-V Task Force, serves as a Task Force liaison to the Somatic Symptom Disorders Work Group and said to work closely with this work group.


01 August 2008
Psychiatric Times. Vol. 25 No. 9
Special Report

Unexplained Physical Symptoms What’s a Psychiatrist to Do?

Humberto Marin, MD and Javier I. Escobar, MD

According to Escobar and Marin:

“The list of somatoform disorders kept expanding with the addition of vague categories, such as “undifferentiated somatoform disorder” or “somatoform disorder NOS [not otherwise specified],” which, unfortunately, are the most common diagnoses within the somatoform genre. These terms failed to transcend specialty boundaries. Perhaps as a corollary of turf issues, general medicine and medical specialties started carving these syndromes with their own tools. The resulting list of “medicalized,” specialty-driven labels that continues to expand includes fibromyalgia, chronic fatigue syndome, multiple chemical sensitivity, and many others (Table 1).

Table 1

Functional somatic syndromes

Irritable bowel syndrome
Chronic fatigue syndrome
Multiple chemical sensitivity
Nonspecific chest pain
Premenstrual disorder
Non-ulcer dyspepsia
Repetitive strain injury
Tension headache
Temporomandibular joint disorder
Atypical facial pain
Hyperventilation syndrome
Globus syndrome
Sick building syndrome
Chronic pelvic pain
Chronic whiplash syndrome
Chronic Lyme disease
Silicone breast implant effects
Candidiasis hypersensivity
Food allergy
Gulf War syndrome
Mitral valve prolapse
Chronic low back pain
Interstitial cystitis
Systemic yeast infection
Total allergy syndrome”

These labels fall under the general category of functional somatic syndromes and seem more acceptable to patients because they may be perceived as less stigmatizing than psychiatric ones. However, using DSM criteria, virtually all these functional syndromes would fall into the somatoform disorders category given their phenomenology, unknown physical causes, absence of reliable markers, and the frequent coexistence of somatic and psychiatric symptoms.”

DSM-V and ICD-11 have committed as far as possible “to facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria” with the objective that “the WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are identical for ICD and DSM.”

The International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders most recent meeting took place on 28 – 29 September. It is anticipated that a Summary Report of the meeting will be available in late November/December.

For detailed information on the proposed structure of ICD-11, the Content Model and operation of iCAT, the collaborative authoring platform through which the WHO will be revising ICD-10, please scrutinise key documents on the ICD-11 Revision Google site:


For information around the DSM and ICD revision processes see DSM-V and ICD-11 Directory page: https://meagenda.wordpress.com/dsm-v-directory/

Reference to Psychological Medicine manuscripts in Summary of 4th meeting of Advisory Group for Revision of ICD-10 Chapter V


Image | belgianchocolate | Creative Commons


APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS


The Elephant in the Room Series Three:

Reference to Psychological Medicine manuscripts in the Summary of the 4th meeting of the Advisory Group for Revision of ICD-10 Chapter V (Mental and Behavioural Disorders)

WordPress shortlink for this posting:  http://wp.me/p5foE-22o

On 18 September, I posted a copy of the Summary Report of the 4th Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders held on 1-2 December 2008, which has only just been published by the WHO.

When reading the Advisory Group’s latest report, bear in mind that it is a summary of a meeting held nine months ago. It has not yet been established when the Advisory Group anticipates publishing a summary of its next meeting which is scheduled for the end of this month (28-29 September).

Since the December 2008 meeting took place, the DSM-V “Somatic Symptom Disorders” Work Group has published an Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report by DSM-V Work Group members, Joel Dimsdale (Chair) and Francis Creed. The report, published in the June 2009 issue of the Journal of Psychosomatic Research, expands on proposals in the very brief DSM-V Work Group update, published on the APA’s website, in April.

Page 1 of the Summary of the 4th Meeting of the International Advisory Group reports:

2. Update on proposal for large groupings of mental and behavioural disorders: Overview of Psychological Medicine articles

Presenter: Dr. David Goldberg

“Dr. Goldberg described key changes and additional specifications in the proposal for large groupings of mental disorders discussed at the AG meeting in March, 2008. Manuscripts based on this proposal are now in press in Psychological Medicine. The current version of the proposals includes five clusters of disorders. Each of these clusters meets some, though not all, of the validation criteria as modified from Robins and Guze by Hyman and colleagues. Similarities within the proposed clusters make it reasonable to view the different disorders within the cluster as variations on a single theme rather than separate and ‘comorbid’ disorders. The AG emphasized that decisions about an overarching architecture of categories will need to be made within the next year, keeping in mind WHO’s emphasis on clinical utility in a broad range of settings and countries…”

and goes on to discuss the relevance of large groupings to ICD revision and the testing of clinical utility in various contexts.

The “Cluster” manuscripts referred to as “in Press in Psychological Medicine” are listed on the APA’s recently published webpage:

“Peer-Reviewed Publications from DSM-V Development”


“As part of the efforts to make information about DSM-V development as widely disseminated as possible, the American Psychiatric Institute for Research and Education is maintaining an ongoing list of peer-reviewed journal publications arising from the DSM-V planning conference series (2002-08) and from DSM-V Task Force and Work Group discussions (e.g., empirical literature reviews, secondary data analyses). This list will be continually updated.”


“119. Andrews G, Goldberg DP, Krueger RF, Carpenter Jr WT, Hyman SE, Sachdev P & Pine DS. Exploring the Feasibility of a Meta-Structure for DSM-V and ICD-11: Could It Improve Utility and Validity? Psychological Medicine; in press.

120. Sachdev P, Andrews G, Hobbs MJ, Sunderland M & Anderson TM. Neurocognitive Disorders: Cluster 1 of the Proposed Meta-Structure for DSM-V and ICD-11. Psychological Medicine; in press.

121. Andrews G, Pine DS, Hobbs MJ, Anderson TM & Sunderland M. Neurodevelopmental Disorders: Cluster 2 of the Proposed Meta-Structure for DSM- V and ICD-11. Psychological Medicine; in press.

122. Carpenter Jr WT, Bustillo JR, Thaker GK, van Os J, Krueger RF & Green MJ. Psychoses: Cluster 3 of the Proposed Meta-Structure for DSM-V and ICD-11. Psychological Medicine; in press.

123. Goldberg DP, Krueger RF, Andrews G & Hobbs MJ. Emotional Disorders: Cluster 4 of the Proposed Meta Structure for DSM-V and ICD-11. Psychological Medicine; in press.

124. Krueger RF & South SC. Externalizing Disorders: Cluster 5 of the Proposed Meta-Structure for DSM-V and ICD 11. Psychological Medicine; in press.

125. Goldberg DP, Andrews G & Hobbs MJ. Where Should Bipolar Appear in the Meta-Structure? Psychological Medicine; in press.”

Gavin Andrews, MD, is a member of the DSM-V Anxiety, Obsessive-Compulsive Spectrum, Posttraumatic, and Dissociative Disorders Work Group.

Sir David Goldberg, MD, is a member of the DSM-V Mood Disorders Work Group

Robert Krueger, PhD, is a member of the DSM-V Personality and Personality Disorders Work Group

William T Carpenter, Jr., MD, chairs the DSM-V Psychotic Disorders Work Group and is a member of the DSM-V Task Force

Steven E Hyman, MD, is a member of the DSM-V Task Force and chairs the International Advisory Group for the Revision of ICD Mental and Behavioural Disorders

Perminder Sachdev MD, PhD, FRAZCP, is a member of the DSM-V Neurocognitive Disorders Work Group

Daniel S. Pine, MD, chairs the DSM-V Disorders in Childhood and Adolescence Work Group and is a member of the DSM-V Task Force

Juan R. Bustillo, MD, is a member of the DSM-V Psychotic Disorders Work Group


The June 2009 Journal of Psychosomatic Research Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report by Joel Dimsdale and Francis Creed was published as free access.

It is not yet known which issue of Psychological Medicine these manuscripts are to be published in or whether they will be freely available to non subscribers to the journal.

Given that the DSM-V Task Force insists that its oversight of the DSM revision is a transparent process, one assumes that these manuscripts are going to be made freely accessible to all stakeholders irrespective of whether the proposals contained within them still stand or are now superseded by alternative proposals.

See also: Summary Report of 3rd Meeting International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders 11 – 12 March 2008, Geneva

See also: Pages 3 and 4 Diagnostic Issues Symposium programme


Psychological Medicine is published by Cambridge Journals


The Editors of Psychological Medicine are:

Kenneth S. Kendler
Psychiatric Genetics Research Program
Dept of Psychiatry
P O Box 980710
Richmond, VA 23298-0710 USA


Robin M. Murray
Institute of Psychiatry
de Crespigny Park
Denmark Hill
London SE5 8AF

The Editorial Board for Psychological Medicine includes:

Sir David Goldberg*
Institute of Psychiatry, London, UK

Professor Matthew Hotopf
Institute of Psychiatry, UK

Dr James Levenson*
Virginia Commonwealth University, USA


Professor S. C. Wessely
King’s College London, UK


*Dr James Levenson, MD, is a member of the DSM-V Somatic Symptoms Disorders Work Group and had been a member of the CISSD Project.

*Professor Sir David Goldberg, MD, Professor (Emeritus) Institute of Psychiatry, has been a member of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders and is a member of the APA’s DSM-V Work Group for Mood Disorders.

Professor Goldberg was a member of the UK National Editorial Team and UK National Consensus Group for the WHO “Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version”.

For archived correspondence between Connie Nelson, the WHO, Geneva, and the WHO Collaborating Centre, Institute of Psychiatry, from 2001, concerning the issue of the WHO Collaborating Centre’s flexible use of terminology around chronic fatigue, fatigue syndrome and neurasthenia, and chronic fatigue syndrome and ME see:


I will update when these manuscripts have been published.


On the DSM-V Peer-Reviewed Publications from DSM-V Development page under “Somatoform Disorders” is listed the paper: 

88. Kanaan RAA, Lepine JP, & Wessely SC. The association or otherwise of the functional somatic syndromes. Psychosomatic Medicine, 2007; 69:855-859.

This paper can be accessed via Google Books “Preview”, published as Chapter 2 of:

“Somatic Presentations of Mental Disorders: Refining the Research Agenda for DSM-V”

Monograph published by the American Psychiatric Association, in 2009, summarising the proceedings of the September 2006 APA/WHO Beijing Symposium: Somatic presentations of mental disorders

See Chapter 2: Pages 9-18   http://tinyurl.com/somaticpresentationsDSM-V


For latest “Elephant in the Room” series report (compiled before the release of the Advisory Group’s 4th meeting Summary Report)

see: DSM, ICD: transparency and timelines 03 September 2009.

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


Image | belgianchocolate | Creative Commons


APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

The Elephant in the Room Series Three:

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

WordPress Shortlink for this posting: http://wp.me/p5foE-1TO


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: http://wp.me/p5foE-1GL

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: http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-3 )

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:

JPsychRes: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext
April ’09 report of the DSM-V Somatic Symptoms Disorder Work Group: http://tinyurl.com/DSMSDDWGApril09

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: https://meagenda.wordpress.com/dsm-v-directory/

“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


The Elephant in the Room Series Three: Channel 4: Benefit Busters; A4e and the Sykes brothers


Image | belgianchocolate | Creative Commons


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The Elephant in the Room Series Three:

Channel 4: Benefit Busters, A4e and the Sykes brothers

WordPress Shortlink for this posting: http://wp.me/p5foE-1RY 

The CISSD Project (Conceptual Issues in Somatoform and Similar Disorders), co-ordinated by Dr Richard Sykes, PhD, between 2003 and 2007, and administered by UK patient organisation, Action for M.E., was funded by The Hugh and Ruby Sykes Charitable Trust to the tune of £62,750.

The recommendations of the CISSD Project and papers that resulted out of its workshops have fed into the revision processes towards DSM-V and ICD-11.

Dr Sykes is currently engaged in the London Medically Unexplained Physical Symptoms and Syndromes (MUPSS) Project for which he receives a research award from the Institute of Psychiatry for £27,000 per year.

This award is also funded by a grant from The Hugh and Ruby Sykes Charitable Trust.

We are still waiting for the ME Association and for Action for M.E. to provide analyses of the CISSD Project and commentary on the DSM and ICD revision processes.

I call upon both organisations to report on the nature and purpose of the MUPSS Project, too, for it is not yet known how the MUPSS Project is being carried out, who is involved in it or who its stakeholders are, but Dr Sykes is reported as having said that the Project has relevance to “all conditions characterised by medically unexplained symptoms, not just CFS/ME”.

Virtually nothing is known at present other than that the Project relates to what Dr Sykes perceives as “medically unexplained symptoms (MUS)” and that he includes within this category, “CFS/ME”.

Dr Richard Sykes and Sir Hugh Sykes are brothers.

Sir Hugh Sykes is a non executive director of A4e (Action for Employment) – the largest European provider of Welfare to Work programmes.

For links for information on A4e see:  The WHO Somatisation Project: The Elephant in the Room Part Six

Sir Hugh has authored pamphlets for the right-wing think-tank “Politeia”, see:


“Politeia, a forum for social and economic thinking, opened in November 1995 as a focus for thinking on social and economic policy. Its aim is to encourage reflection, discussion and debate about the place of the state in the daily lives of men and women across the range of issues which affect them, from employment and tax to education, health and pensions.”

Current areas for work include:

Tax and benefits: a fairer framework for incentives;
The potential consequences of the Euro or other European measures for British social and economic policy, employment, taxation and trade;
International comparisons of educational standards;
Policies for high employment: the role of the state, the employer and the employee;
Covering for lost income: health, long term care, pensions and unemployment Welfare reform, pensions, benefits and taxation;
Constitutional change and stability;
Policing in the UK”

Sir Hugh is the author of

“Working for Benefit”
Hugh Sykes

Although it continues to fall, unemployment remains a serious problem both economically and socially. Does it not make better sense, asks Hugh Sykes, to pay people to work than, as the present benefits system does, to remain idle? The workfare scheme he proposes here would achieve a reduction of at least 200,000 in unemployment over three years. Developing from and extending the government’s own schemes, it is – unlike other schemes suggested by left and right – both straightforward and detailed enough to be put into practice immediately. It gives incentives to employers to create, and to the unemployed to take, real productive jobs, whilst also providing opportunity to work where such jobs are not available. NERA, the leading experts on the economies of workfare, have provided technical advice and data for the scheme.”


“Welfare to Work – The New Deal: Maximising the Benefits”
Hugh Sykes

The New Deal – the government’s welfare to work scheme – aims to increase employment in the long term by helping some of the unemployed to become more employable, thereby increasing the pool of effective labour and so facilitating sustainable economic expansion. Sir Hugh Sykes, until recently Chairman of the Sheffield Development Corporation, welcomes the scheme and its aims. But, he argues, there are serious problems in implementing the scheme which should be urgently addressed. The fact that the scheme does not aim to create new jobs in the short term will cause widespread disappointment, unless the public is given a better understanding of the scheme’s aims. Sir Hugh also contends that the scheme should aim at short-term job creation – something which will be possible if it can be flexibly implemented in the regions, rather than rigidly run from the centre, and if it takes proper account of regional and local priorities.”


Later this month, Channel 4 begins a series called “Benefit Busters”:


Benefit Busters

Series Summary

In 2009, Britain will pay out more in benefits than it raises in income tax. Welfare and pension payments cost more than education, health or defence.

Now, as the government attempts to revolutionise the welfare system – controversially rewarding private companies according to their ability to coax people off benefits and into jobs – this documentary series follows the people on both sides of this new welfare state.

Watch again on:


Series | Episode 1 | Benefit Busters  [48 mins]

Hayley Taylor’s job is to persuade single mothers on benefits to go back to work.

The company she works for, A4E, which is helping to tackle the Government’s target of getting 70 per cent of lone parents into paid work by 2010, is the largest welfare reform company in the world.

A4E is run by multimillionaire entrepreneur Emma Harrison, who believes her business is ‘improving people’s lives by getting them into work.’

Until recently, the 700,000 lone parents receiving benefit didn’t have to look for work until their youngest child was 16. Soon, they must either work, or be looking for work, once their youngest child is seven.

At Doncaster A4E, Hayley runs a course called Elevate that aims to give lone parents the skills and confidence to enter the workplace and convince them they’ll be better off doing so. Cameras follow her group of ten single mothers during their intensive six-week course to prepare them for work.

Next Episode: Thu 20 Aug, 9PM on Channel 4, Monday 24 August 4AM Channel 4


Series 1 | Episode 2 | Benefit Busters

Unemployment is rife in Hull, but for one company business is booming: A4E has won the lucrative contract to help get the long-term unemployed back to work. Mark Pilkington is an ex-soldier who hasn’t worked for 10 years. He welcomes help and within a fortnight he finds a job. But the joy of receiving his first pay cheque is short-lived; after just four weeks a business downturn results in Mark being laid off.

Facing a return to A4E and potentially a four-week wait to restart his benefit payments, Mark begins to wonder if there is more security in a life on benefits.

It appears to be a shockingly common perception amongst the clients at A4E, who are at the mercy of an increasingly casual labour market.

Date Time Channel
Thursday 27 August 9PM Channel 4


Series 1 | Episode 3 | Benefit Busters

One of the government’s targets is to shift one million people off long-term sickness benefits and get them back to work.

In Oldham, the charity Shaw Trust* has won the contract to implement this policy.

Sherrie Jepson, a former car saleswoman, has the job of selling the idea of employment to people who were previously considered too sick to work.

Keiron Tandy fell from a third-floor balcony while celebrating his 18th birthday in Turkey. He has metal pins in his back and has restricted mobility.

His family doctor had confirmed him as ‘unfit for work’ but under the new system he’s examined by an independent medical examiner employed by a private health care company, which will determine whether he is fit enough to return to work. Meanwhile, Sherrie starts to try to convince Keiron that he could work if a suitable job that allowed for his condition could be found.

*The Shaw Trust


Shaw Trust accounts show crippling cost of DWP contracts

By John Plummer | Third Sector Online |10 August 2009

Charity blames Pathways to Work programme for huge deficit

The Shaw Trust made a £2.8m loss in 2008/09 compared with a surplus of £7.4m the previous year, according to its annual report.

The charity, which is the largest voluntary sector provider of employment services for disabled people, blamed the loss on the huge start-up costs involved in delivering Pathways to Work programmes on behalf of the Department for Work and Pensions.

“The DWP funding structure is making it more difficult for charities to deliver services,” said Catherine A’Bear, chief officer for corporate affairs at the trust.

“We are one of the few charities still in the business of providing services for disabled people under DWP contracts, and when you see how heavily we have had to invest in it you can see why.”

She said the start-up costs involved in setting up services and recruiting staff for Pathways to Work were so high that private companies were increasingly the only ones that could afford to bid. “The voluntary sector is seen as a sub-contractor,” said A’Bear.

The trust’s annual income increased by £8.48m to £81.39m during the same period, of which £45.8m came from the DWP. But this was offset by rising costs. Wages and salaries rose from £37m to £43m.

John Briffitt, chairman of the trust, says in the annual report: “There’s no denying that the Shaw Trust’s financial performance, like that of many other organisations in our field, has been adversely affected by the challenging economic environment.”

He said “past prudence” had built up sufficient cash resources to help it cope.

The 2008/09 financial year was a turbulent one for the trust, with chief executive Ian Charlesworth put on gardening leave pending dismissal in July 2008. The annual accounts say he resigned on 12 December.


For information on the development of DSM-V which is to be harmonised for congruency with ICD-11, and on the CISSD Project, see:


Compiled by Suzy Chapman