Category: PACE Trials

Professor Peter D White document to CNCCs re XMRV and CFS

Professor Peter D White document to CNCCs re XMRV and CFS

22 October 2009

A copy of the document below was passed anonymously to ME agenda, yesterday, together with evidence that it originates from Professor Peter White (Barts and The London NHS Trust).

It is being circulated by Professor White to the Clinical Network Co-ordinating Centres (CNCCs).

Professor White is also a co-PI (Principal Investigator) of the MRC funded PACE Trials.

Caveat: Amongst other issues, there have been expressions of concern over Professor Lloyd’s use of the term “‘endogenous retroviruses’ (ERVs)” in his original commentary, a term reproduced in the document being circulated by Professor Peter White to CNCCs.

Note: The original commentary by Professor Andrew Lloyd is published here  on the website of The ME/CFS Society of NSW Inc.


Document Properties:

MS Word Document file name: xenotropic murine leukemia virus-related virus XMRV and CFS.doc

Document Created: 15 October 2009

Document Title: Dear ME/CFS Society,

Author: Andrew LLoyd

Company: Barts and The London NHS Trust


Document text:

Dear colleagues,

In light of the recent publication in Science regarding a new retrovirus discovered in patients with CFS and the attendant widespread publicity, the following is a scientific appraisal of this publication and the evidence so far. It has been adapted almost in full with permission from an article by Professor Andrew Lloyd, Director, Centre for Infection and Inflammation Research, University of New South Wales.

The first comment is that the findings are potentially important to our understanding of the illness. The paper describes the detection of genetic material of a virus known as xenotropic murine leukemia virus-related virus (XMRV) in 68 of 101 (67%) patients in the US, described as having illness “fulfilling the 1994 CDC Fukuda Criteria for Chronic Fatigue Syndrome and the 2003 Canadian Consensus Criteria for Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) and presenting with severe disability”, compared to 8 of 218 (3.7%) healthy individuals. The significance of this finding was further supported by detection of XMRV proteins in the blood of 19 0f 30 patients, but none of 5 healthy subjects. Antibodies against XMRV were found in the blood of 9 of 18 patients and none of 9 healthy individuals. The XMRV was shown to grow in cell culture in the laboratory. As the retrovirus family also includes HIV, on face value this finding raises the suggestion that CFS may be caused in some cases by infection with XMRV which may affect both the immune system and the brain.

However, several strong notes of caution need to be applied:

1) Research into CFS has been plagued over several decades by studies using sophisticated molecular laboratory techniques to examine poorly characterised subjects and samples. In the recent study, the 101 patients are reported to have met diagnostic criteria for CFS, but perplexingly no details of their age, gender, or illness characteristics were provided – except the indication that the illness in these patients was causing “severe disability”. This information is critical to allow the reader to understand how comparable the patients in the study were to ‘typical’ patients with CFS in the USA and worldwide. Disconcertingly, one of the authors of the study, Judy Mikovits has suggested during interviews with the Amy Dockser Marcus in the Wall Street Journal, that “20 patients of the 101 in the study have lymphoma” – if this statement is accurate the reliability of the designation of the 101 patients must be cast into serious doubt (as diagnosis of lymphoma precludes a diagnosis of CFS). Perplexingly, the paper also does not describe how the healthy control subjects were selected – for instance if the controls were family members of the cases, or individuals working in the laboratory where the studies were performed this would be inappropriate as they may have altered rates of contact with the XMRV.

2) the finding of a retrovirus in the blood would seem to be highly significant, however so called ‘endogenous retroviruses’ (ERVs) are actually found commonly in humans and generally cause no ill effects. These retroviruses are derived from ancient viral infections of germ cells in humans, mammals and other vertebrates; and so are passed on through generations and now remain in the genome. Some research suggests that human ERVs may cause certain  autoimmune diseases and cancers. XMRV has previously been associated with prostate cancer. Accordingly, the finding of XMRV in the recent study raises the possibility that infection with this virus may cause CFS in some patients – alternatively it may become active as a result of CFS – or it may have no role whatsoever in the illness (i.e it may be an epiphenomenon).

3) those of us who have been undertaking research into CFS for a long period will remember the remarkably comparable “discovery” of a retrovirus in patients with CFS made by Elaine Defreitas which was published in the similarly prestigious journal, Proceedings of the National Academy of Sciences in 1991. In brief, the initial report was of a retrovirus with both genetic material and viral proteins, as well as antibodies against the virus, identified in a significant proportion of patients and not in healthy individuals. A series of subsequent studies failed to confirm the findings – or find evidence for any known retroviral infection. This outcome is an important reminder that biomedical research is highly complex process and often uses new technologies to make discoveries – some are confirmed and found to have lasting significance – many are not. This process is a necessary element in the pathway to improved understanding of disease.

There can be no doubt that CFS is one of the most challenging on the list of unsolved medical conditions, hence the last two decades have witnessed many such ‘discoveries’ – time will tell whether this one stands the key test of independent replication, which is verification of the same finding in other laboratories and using other patient samples. A number of research groups will be undertaking this task over the next several months – until these results are in – there is no likelihood of a meaningful “diagnostic test”. If the findings were confirmed the likelihood of an effective treatment would be several years away at the earliest.


MRC publishes Minutes of 1st “CFS/ME Expert Panel” meeting

The names of the members of the MRC CFS/ME Expert Group, the Panel’s Terms of Reference, the Agenda and Minutes of the meeting held on 15 December 2008 and other information has finally been published on the MRC’s website.

The list of members’ and the Panel’s Terms of Reference were previously obtained under FOIA and published here on ME agenda.

The Agenda and Minutes of the meeting on 15 December can be downloaded here or opened in PDF format here:

PDF: Minutes CFS/ME Expert Group Meeting 15 December 2008

Document Library
CFS/ME Expert Group meeting – 15 December 2008
Issued: 15 Dec 2008
Primary audience: Researchers
Document Summary

Agenda and minutes from the 1st meeting held on 15 December 2008


The list of members can be opened in PDF format here:

PDF: CFS/ME Expert group membership

Term of Reference can be opened in PDF format here:

PDF: Finalised Terms of Reference for CFS/ME expert group

or go to MRC site for full article and files:

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis 

( )

Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a complex and debilitating condition with a diverse range of symptoms. Profound physical and/or mental fatigue is the most well-known, while others include pain, disturbed sleep patterns and gastrointestinal problems. Each patient experiences their own personal combination of symptoms.

Research Strategy
MRC CFS/ME Expert Group
Terms of reference
Previous MRC activities
Current MRC-funded research projects
How does the MRC decide which research proposals to fund?

Research Strategy
CFS/ME is currently a highlighted area, and is an area that is of high priority for the MRC. In 2008 the MRC set up a new group to consider how the MRC might encourage new high-quality research into CFS/ME and partnerships between researchers already working on CFS/ME and those in associated areas This work follows on from the Research Advisory Group set up in 2003 and the joint workshop held with Action for ME in 2006.

MRC CFS/ME Expert Group
The Group is chaired by Professor Stephen Holgate, chair of the MRC Population and Systems Medicine Board and brings together leading experts in the CFS/ME, from associated fields that may be involved in the underlying mechanisms of CFS/ME and from the charity sector:

Professor Stephen Holgate – University of Southampton – Chairman

Professor Jill Belch – University of Dundee

Dr Esther Crawley – University of Bristol

Professor Philip Cowen – University of Oxford

Professor Malcolm Jackson – University of Liverpool

Dr Jonathan Kerr – St George’s University of London

Professor Ian Kimber – University of Manchester

Professor Hugh Perry – University of Southampton

Dr Derek Pheby – National CFS/ME Observatory

Professor Anthony Pinching – Peninsula Medical School

Dr Charles Shepherd – ME Association

Sir Peter Spencer – Action for ME

Professor Peter White – Bart’s and the London School of Medicine and Dentistry

The aim of the Group is to look at new ways of encouraging new research in the CFS/ME field not only by looking at new technologies but also at associated areas that could help inform on the diverse range of symptoms and possible underlying causes of CFS/ME.

The terms of reference of the Group can be found below.

Terms of reference

1. To consider and review the status of current research in CFS/ME.

2. To consider the underlying mechanisms and sub-phenotypes of CFS/ME.

3. To identify research opportunities incorporating new technologies and conjoint areas and encourage new research towards understanding the basis of CFS/ME.

4. To produce a framework for conducting high quality CFS/ME research in the future.

5. To work to achieve clear lines of communication and synergy between all stakeholders with an interest in this area.

Notes of the Expert Group meetings can be found following the links below:

1st Meeting of the CFS/ME Expert Group – 15th December 2008
2nd Meeting of the CFS/ME Expert Group – 30th March 2009 (to follow)

Click here to read full MRC information 

Times Letters: British intervention in healthcare debate in the US and our NHS

In response to the report “David Cameron turns on MEP Daniel Hannan for anti-NHS tour in America” Times Online, 14 August,  H Patten has a letter published today in the print and online editions:

Times Letters

The Times
August 17, 2009

‘Untruths’ about NHS system of healthcare
British intervention in the healthcare debate in the US and our NHS

Sir, The quarter of a million sufferers of myalgic encephalomyelitis (ME) in this country, who can access no effective NHS treatment for their physical illness, might agree with Mr Hannan in that they would not wish their NHS “care” on anybody.

ME has been classified as a physical, neurological illness (alongside MS and Parkinson’s) by the World Health Organisation since 1969. Instead of receiving biomedical treatment, ME sufferers are mixed up with sufferers of other fatigue-causing conditions, including mental ones, under the meaningless umbrella term “chronic fatigue syndrome”. In the UK no other neurological illness is treated solely by psychological interventions.

All UK taxpayers’ research and treatment millions have gone to the psychiatric profession that insist, against all scientific evidence, that it is an “abnormal illness belief”. No funding has ever been allotted to developing a diagnostic test. The parliamentary Gibson report recommended that these psychiatrists be investigated for a possible conflict of interest in also working for large insurance companies. This has never been done. Is healthcare here also, in President Obama’s words, “working better for the insurance companies” than for ME sufferers?

H. Patten

Frome, Somerset

Documented pathology seen in ME/CFS that contra-indicates the use of GET: Margaret Williams 23 July 2009

Documented pathology seen in ME/CFS that contra-indicates the use of Graded Exercise Therapy

by Margaret Williams

23 July 2009

This document together with previous articles and commentaries by Margaret Williams can be found at ME Action UK

The evidence-base of pathology that has been demonstrated in ME/CFS appears within a larger document that is already in the public domain, but is now provided as a 9 page separate item for ease of access.

The UK ME/CFS community may not yet be fully aware of the content of Dr Esther Crawley’s presentation on 8th July 2009 to the Countess of Mar’s “Forward-ME” group meeting held at the House of Lords. The Minutes of that meeting and Dr Crawley’s power-point presentation are accessible at

Of particular note are the following points made by Dr Crawley:

· The CCRNC (CFS/ME Clinical and Research Network and Collaboration, of which she is Chair) is a “multidisciplinary organisation which exists to promote and support the delivery of evidenced based treatment for children, young people and adults with CFS/ME throughout the UK” whose objective is “To champion evidence-based approaches to the treatment of CFS/ME, such as those provided in the NICE guidelines” and which will use “clinical expertise to inform healthcare policy” and will “provide training for clinicians and researchers from all disciplines involved in the diagnosis and treatment of CFS/ME”.

· The CCRNC has an “Active training programme” and has “the ability to provide national training programmes”.

· The CCRNC will “invite no more than four people drawn from National UK CFS/ME organisations which explicitly support the aims and constitution of the organisation to sit on the Executive committee as either observers or members”.

· Its research strength is that it has the “Largest cohort in the world”.

· Its strengths are “working together — 600 clinicians and researchers, MRC, NIHR (National Institute for Health Research), Welcome (sic), patient and carer reps, charity membership”.

It is particularly notable that the Minutes record that when asked by Dr Charles Shepherd “whether, in the light of the widespread opposition to the NICE Guidelines, charities that were opposed to them would be invited to become members or associates of the CCRNC executive”, Dr Crawley’s response was: “In order to join the collaborative, charities would be expected to sign up to the evidence-based approach”.

The only possible interpretation of this is that patients’ charities are welcome to participate provided that they accept the behavioural modification interventions of CBT/GET recommended in the NICE Guideline (for which Dr Crawley was a member of the Guideline Development Group).

This would seem to be something akin to medical totalitarianism, especially given that Wessely School “evidence-base” upon which the NICE Guideline is predicated has been so stringently criticised by international ME/CFS experts.

See, for example:

It is worth recalling that at the Royal Society of Medicine meeting on “Medicine and me: ME and CFS” held just three days later on 11th July 2009, MRC Professor of Clinical Immunopharmacology Stephen Holgate said that at the MRC, referees tend to reinforce the status quo and that he was not sure if his wish for an MRC inter-disciplinary group involving immunologists, neurologists and infectious diseases physicians would happen, which would seem to indicate that the psychiatrists’ stranglehold on MRC funding for biomedical research into ME/CFS is set to continue.

The Forward-ME Minutes also record that Dr Crawley said: “the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement”.

Given that the “infighting” may have arisen because of the polarised views about the nature of ME/CFS, with the Government-funded charities (Action for ME and The Association of Young People with ME, to the latter of which Dr Crawley is Medical Advisor) supporting the NICE Guideline that is underpinned by flawed research, whilst other charities base their stance on the international evidence that shows the NICE Guideline to be seriously misinformed, it may be timely to look again at the following “evidence-base”.

Dr. Crawley stated that only those ME/CFS charities which agree to “sign up to the evidence based approach” are to be permitted to join her “collaborative”.

Given the volume of biomedical evidence that does not support Graded Exercise Therapy it would appear that in this instance signing up to an “evidence based approach” involves signing up to an approach that ignores most of the evidence.

Science is not furthered by a self-reinforcing “collaborative” determined to exclude dissenting voices; rather, a vigorous and honest dialectic is required. Medicine has no place for cabals and the lazy thinking they foster.

The “Forward-ME” Minutes record that Lady Mar said she hoped that Dr Crawley would “agree to continue to work with Forward-ME”; one can only wonder, sadly, just how far backwards her “Forward-ME” initiative will carry the UK ME/CFS community.

Evidence-based research showing pathology that contra-indicates the use of graded exercise in ME/CFS

There is an extensive literature from 1956 to date on the significant pathology that has been repeatedly demonstrated in ME/CFS, but not in “CFS/ME” or “chronic fatigue”; this can be accessed on the ME Research UK website at  and also at  

According to Professor Nancy Klimas, ME/CFS can be as severe as congestive heart failure and the most important symptom of all is post-exertional relapse (presentation at the ME Research UK International Conference held in Cambridge in May 2008). Continue reading “Documented pathology seen in ME/CFS that contra-indicates the use of GET: Margaret Williams 23 July 2009”

Statements of Concern about CBT and GET provided for JR: Margaret Williams 22 July 2009

Statements of Concern about Cognitive Behavioural Therapy and Graded Exercise Therapy provided for the High Court Judicial Review of February 2009

by Margaret Williams

22 July 2009

This document together with previous articles and commentaries by Margaret Williams can be found at ME Action UK

Over twenty renowned ME/CFS experts provided Statements in support of the Judicial Review of the NICE Guideline on “CFS/ME” heard in February 2009 in the High Court in London. They were specifically written in support of the challenge to the NICE Clinical Guideline on “CFS/ME” and they express concern about the recommendation by NICE that the only management of ME/CFS should be CBT and GET (the same interventions that are the subjects of the Medical Research Council’s PACE Trial).

None of the Statements was accorded the recognition that they merit.

Extracts from those Statements (some of which were of considerable length) are now being placed in the public domain in the interests of ME/CFS sufferers and those who support and care for them.

· “In my view, the Guideline is biased and over rigid in its recommendations and will put a large number of ME sufferers at risk of harm through its strong recommendations for the use of CBT and GET. CBT is based on the idea that somatoform disorders are maintained by abnormal or unhelpful illness beliefs which lead to abnormal or unhelpful behaviour. The first requirement for a somatoform diagnosis is that there be no physical cause for the symptoms. This is not the case in ME/CFS” (Malcolm Hooper, Professor Emeritus of Medicinal Chemistry, University of Sunderland, November 2007)

· “Two forms of treatment…are CBT and GET. CBT is a psychological treatment. Its application in what is certainly an organic disorder is basically irrational. Its putative mode of action is based on the proposition that patients with ME/CFS feel unwell because they have an ‘abnormal illness belief’, and that this can be changed with CBT. It has never been proven to be helpful in the majority of patients with ME/CFS. GET comprises a regime of graded exercise, increasing incrementally over time. It has been almost universally condemned by most patient groups. A number of patient surveys have shown it to be, at best, unhelpful, and at worst, very damaging. Its application is counter-intuitive, particularly when one of the most debilitating and well recognised symptoms of ME/CFS is post-exertional malaise which can put some patients in bed for days after relatively trivial exertion” (Dr William Weir, Consultant Physician, November 2007)

· “The GDG has placed undue reliance upon a small number of RCTs that were methodologically flawed because they did not adequately define the patient population” (Dr Terry Mitchell, formerly Consultant Clinical Lead (CNCC) of the Norfolk, Suffolk & Cambridgeshire NHS ME/CFS Service, 23rd June 2008)

· “The predominance of psychologists / psychiatrists on the GDG is entirely inappropriate and has led to a biased analysis in my opinion. The GDG has placed undue emphasis on a few UK clinical trials which support the use of psychological treatments, however, these studies did not properly or adequately define their patient population” (Dr Jonathan Kerr, Hon. Consultant in Microbiology; Consultant Senior Lecturer in Inflammation; Principal Investigator of the CFS Group, St George’s University of London, 11th August 2008)

· “You will see from my attached treatise that I consider that the recommendation of CBT and GET as blanket treatments of ‘clinically excellent’ first choice is extremely dangerous to patients. I am concerned that NICE claims that an adequate evidence base supports CBT/GET, when in fact the Guideline Development Group (GDG) relied almost exclusively on a handful of extremely controversial RCTs (random controlled trials). I have no doubt that patients in the research quoted by the GDG did not have ME/CFS” (Dr Irving Spurr, Newcastle ME Research Group; 12th August 2008)

· “My overall impression reading the Guidelines for the first time was one of alarm. I will limit my comments to the deficiency which has the greatest potential for harm to patients. The NICE Guidelines do not make any reference to the biomedical literature on ME/CFS. A physician who is new to the field and who has not had time to read the thousands of paper reporting measurable abnormalities in ME/CFS may get the impression that: (1) Biomedical issues are irrelevant in ME/CFS and that (2) CBT and GET actually make the core symptoms of people with ME/CFS better. A close read of the literature reveals that none of the core symptoms of ME/CFS improve with CBT or GET. The recommendation for GET stems from the often quoted but unproven assumption that deconditioning causes or exacerbates ME/CFS. In fact this assumption has been disproven (Bazelmans et al 2001; Harvey et al 2008) and cannot therefore be used as a basis for treatment. Informed consent is an ethical requisite in the practice of medicine. Informed consent requires that patients embarking on any therapy be told the potential benefits and risks of the therapy being recommended. Meeting this legal standard in ME/CFS requires that patients be told about the potential benefits and risks of CBT/GET. If patients are being coerced to believe what is not true, psychological trauma can result. If patients are pushed to increase activity beyond their capabilities, exacerbation of symptoms can be expected. The NICE Guidelines are biased towards a particular model of CBT/GET that is widely viewed as ineffective and potentially unethical” (Dr Eleanor Stein, Consultant Psychiatrist, Calgary, Alberta, Canada, 12th August 2008)

· “(Graded exercise therapy) is not therapy – it is simply the enforcement of an opinion rather than a treatment based upon any scientific examination of a patient’s pathology and treatment of that pathology. I believe that those who developed (the) graded exercise programme as a valid treatment of ME have already been soundly criticised to the Courts. I also believe scientific evidence that such a programme is against the best interests of ME patients has already been presented. The benefit of such a programme is to the interests of the insurance industry and not the patient. Graded exercise programmes may be significantly dangerous to many of these ME patients” (Dr Byron Hyde, Clinician specialising in ME, having examined over 3,000 patients between 1984 – 2008; Ottawa, Canada; 15th August 2008)

· “(The GDG) produced a Guideline that recommends CBT and GET as the prime treatment yet there is in fact published evidence of contraindication / potential harm with GET. This has been published by independent researchers (e.g. Peckerman et al). The NICE GDG claims that CBT/GET are supported by significant research. In fact the GDG relied almost exclusively on specious reports which are unproven” (Dr Derek Enlander, Virologist specialising in ME/CFS; formerly Assistant Professor at Columbia University and Associate Director of Nuclear Medicine at New York University; Physician-in-Waiting to the UK Royal Family and to members of HM Government when they visit New York; 18th August 2008)

· “I regard the continuing aura of disbelief surrounding the illness and mainly emanating from the psychiatrists as detrimental to both medical progress and the interests of sufferers” (Dr Nigel Speight, Consultant Paediatrician specialising in ME/CFS; 20th August 2008)

· “It is with regret that I note that the NICE Guidelines do not take into account recent developments in the management of ME. They lean towards a psychological and psychiatric basis, when it is now recognised that there are a large number of medical problems associated with ME. Recent studies on genetics, the central nervous system, muscle function and persistent infections have shown that there is a great deal of medical information available with regard to the management of ME” (Dr Terry Daymond, Consultant Rheumatologist and recently Clinical Champion for ME for the North-East; 22nd August 2008)

· “Research from the ‘organic school’ identified many pathophysiological abnormalities in patients with ME/CFS resulting from dysfunction in a number of vital control systems of the body such as the central nervous system, the autonomic nervous system, the endocrinological system and the immune system. The attitude of the ‘psycho-social’ school continues to be to largely ignore this research. It seems they can only maintain their hypothesis by discouraging the search for an organic basis and by denying the published evidence, which they are certainly doing. This unseemly battle of ideas has been settled politically by proclamation and manipulation, not by science, and not by fair and open means. CBT and GET appear to be based on the rationale that patients with CFS/ME have ‘faulty’ belief systems concerning the ‘dangers’ of activity, and that these aberrant beliefs are significant perpetuating factors. If CBT to ‘correct’ these ‘false’ beliefs can be combined with a graded exercise programme to re-condition these patients, it is virtually promised that a significant proportion of them will improve both their attitude and their physical functioning, and thus cure their illness. Using CBT, patients are therefore to be challenged regarding their ‘aberrant’ thoughts and expectations of relapse that the ‘psycho-social school’ psychiatrists believe affect symptom improvement and outcomes. Cognitions concerning fatigue-related conditions are to be addressed; these include any alleged ‘over-vigilance to symptoms’ and reassurance-seeking behaviours, and are to be dealt with using re-focusing and distraction techniques. It is when a therapy such as CBT begins to interfere with the natural warning systems, of which both pain and fatigue are a part, that the increased risks arise. In particular, musculo-skeletal pain and fatigue have essential function in modulating activity when the body is in a state of disease as in ME/CFS. NICE, however, recommends over-riding this essential safety-net, thus the risk of serious harm is increased in this situation of simultaneous activity and symptoms denial. This will become a more serious risk in patients with more severe ME/CFS. The Guideline does not indicate how the clinician can tell whether patients’ beliefs concerning their symptoms are aberrant and/or when the symptoms accurately point to the underlying state of the disease process” (Dr Bruce Carruthers, Consultant Physician, Vancouver, Canada, 29th August 2008)

· “There have been only five trials of CBT with a validity score greater than 10, one of which was negative for the intervention; and only three RCTs of GET with a validity score greater than 10. The total number of available trials is small; patient numbers are relatively low; no trial contains a ‘control’ intervention adequate to determine specific efficacy, and their results are relatively modest. In addition, some of the studies (particularly those on GET) have used the Oxford criteria for diagnosis, a rubric which allows selection of patients with chronic fatigue states and which do not necessarily exclude certain psychiatric disorders, raising the question of the applicability of the results of these studies to the many patients with specific biomedical symptoms and signs consistent with myalgic encephalomyelitis. Again, the heterogeneity of the trials, the potential effect of publication or funding bias for which there is some evidence, and professional doubts about the evidence base for some behavioural therapies themselves give grounds for caution as regards the usefulness of (CBT/GET). A commentary in the BMJ (Bolsover 2002) is particularly relevant: ‘Until the limitations of the evidence base for CBT are recognised, there is a risk that psychological treatments in the NHS will be guided by research that is not relevant to actual clinical practice and is less robust than is claimed’. Indeed, a large body of both professional and lay opinion considers that these essentially adjunctive techniques have little more to offer than good medical care alone” (Dr Neil Abbot, Director of Operations, ME Research UK; Hon Research Fellow, Department of Medicine, University of Dundee, 29th August 2008)

· “The overall flavour of the Guideline is to lump together all patients with ‘medically unexplained fatigue’, from relatively mild to profoundly disabling illness and to treat all patients with a standard approach of gradual reconditioning and cognitive behavioural modification. By lumping such a heterogeneous mix of patients…patients with CFS or ME are left with very limited options, and little hope. In addition, this document proscribes immunological and other biologic testing on patients with (ME)CFS in the UK, despite the evidence in the world’s medical literature that such testing produces most of the biomedical evidence of serious pathology in these patients. Equally unfortunate is the GDG’s recommendation for behavioural modification as the single management approach for all ‘medically unexplained fatigue’. This month we participated in the International Conference on Fatigue Science in Okinawa, Japan. Dr Peter White of the UK presented his work using behavioural modification and graded exercise. He reported a recovery rate of about 25%, a figure much higher than seen in US studies in (ME)CFS and, even if possible, simply not hopeful enough to the 75% who fail to recover” (Professors Nancy Klimas and Mary Ann Fletcher, University of Miami; 13th September 2008)

· Attached as an appendix to their Statement was a separate Summary of Current State of Understanding of (ME)CFS), from which the following quotations are taken: “Many of the symptoms of (ME)CFS are inflammatory in nature. There is a considerable literature describing immune activation in (ME)CFS. Overall the evidence has led workers in the field to appreciate that immunologic abnormalities are a characteristic of at least a subset of (ME)CFS and that the pathogenesis is likely to include an immunologic component. Fulcher and White (2000) suggest a role for deconditioning in the development of autonomic dysfunction and overall level of disability in (ME)CFS patients. On the other hand, Friedberg et al (2000) suggest the long duration (ME)CFS subjects are more likely to have symptoms suggestive of chronic immune activation and inflammation. We are currently working with investigators at the Centres for Disease Control and the University of Alberta looking at the mediators of relapse after exercise challenge using gene expression studies, neuroendocrine, immune and autonomic measures”

· “My main concern about the NICE document is that what must be great uncertainty in both costs and particularly in quality of life difference is not allowed for” (Martin Bland, Professor of Health Statistics, University of York, 17th September 2008)

· “The guideline is dominated by positive and largely uncritical recommendations for CBT and GET. However, the guideline plays down the fact that patient experience has consistently reported that significant numbers of people with ME/CFS find these approaches to be either unhelpful or, in the case of GET, makes their condition worse. Some of the hospital-based services are not being physician-led but ‘therapist-led’. In some cases people are now being given little more than a ‘therapist-led’ management assessment followed by an offer of CBT and/or GET. I received some very unhappy patient feedback on this type of service on Saturday 11th October (2008) in Colchester, Essex, where great dissatisfaction was expressed by many members of the audience who attended the ME Association’s ‘Question Time’ meeting” (Dr Charles Shepherd, Medical Adviser, ME Association, 24th October 2008)

· “I am a consultant immunopathologist and before retirement worked at St James’ University Hospital, Leeds. A key area of my professional interest was and remains myalgic encephalomyelitis and I have carried out research into the disorder. For a number of years I ran clinics specifically for patients with ME. In my opinion NICE guidelines overemphasise the usefulness of CBT and GET to the detriment of patients. I have no hesitation in stating that in my opinion, the situation for ME/CFS patients is worse, not better, since the publication of the NICE Guideline” (Dr Layinka Swinburne, Leeds, 22nd October 2008)

· “As my clinical freedoms were progressively eroded, it meant that I was becoming ineffective and indeed possibly dangerous as a practitioner. All that patients could be offered was CBT coupled with GET, which I consider not to be appropriate for many of my patients and in the case of GET potentially damaging for some” (Dr Sarah Myhill, General Practitioner specialising in ME/CFS, Powys; Secretary of the British Society for Ecological Medicine, 10th November 2008).

GOSH gives platform to Lightning Process

GOSH gives platform to Lightning Process


(Correction: An earlier version of this post had erroneously associated Ms Anna Gregorowski with the PRIME Project – apologies to Ms Gregorowski for this misattribution. )

In the previous posting Forward-ME: Minutes of meeting 8 July 2009 Dr Charles Shepherd (ME Association) is reported as having raised concerns in relation to a forthcoming event at University College London in conjunction with Great Ormand Street Hospital (GOSH) at which Phil Parker of the Lightning Process is scheduled to give a presentation.  Also presenting is Prof Peter White (BARTs, co-PI for the PACE Trial). 

See:  Forward-ME: Minutes of meeting 8 July 2009  Minute item 5. Lightning Process

The event to which this item refers is:

University College London in conjunction with Great Ormond Street Hospital

From Assessment to Recovery: Holistic Approaches to Working with Young People with CFS/ME

This annual one day event will provide you with skills and knowledge on how to manage Chronic Fatigue Syndrome (CFSME) when working with children and young people.

The holistic theme is throughout the day from diagnosis to treatment. You will learn about motivational interviewing and have an introduction to the Lightning Process. You will hear from young people accessing support at GOSH and be able to ask them questions.

There will be two interactive workshops: Dietary management and Interdisciplinary skills for treatment. There will be a mini-lecture focussed on Medical management.

Date: 30 September 2009

Why you should attend

The day will provide

– Interdisciplinary assessment and treatment ideas

– opportunity for networking

– interactive workshops

– informative presentations

Who should attend?

Clinicians and health professionals who work with young people and /or have a special interest in CFSME


Please note that this is a draft programme and is likely to change before the event. Please continue to check the website for updates.


09.15 – 09.45 Keynote address Ms Anna Gregorowski

09.45 – 10.30 The importance of diagnosis & the power of labeling for patients with chronic, unexplained, disabling fatigue Professor Peter White

10.30 – 11.15 Helping kids get ready, willing & able to make changes: motivational interviewing in chronic illness Dr Deborah Christie

11.15 – 11.30 REFRESHMENTS

11.30 – 12.30 Video diaries Patient/parents

12.30 – 13.00 Outpatient Rehabilitation Programme at GOSH Dr Anna Hutchinson & Monica Samuel

13.00 – 13.45 LUNCH

13.45 – 14.00 Networking options

14.00 – 15.15 Workshops/Mini lectures (each delegate selects 1 workshop/mini lecture to attend)

1. Dietary management of CFS/ME Judith Harding

2. Clinical investigation…to test or not to test Dr Vic Larcher, Dr Jo Begent & Dr Terry Segal

3. Basic skills of treatment & management of CFSME, including relapse prevention Dr Anna Hutchinson & Monica Samuel

15.15 – 15.30 REFRESHMENTS

15.30 – 16.15 Introduction to Lightning Process Phil Parker

16.15 CLOSE


The GOSH Chronic Fatigue Syndrome/ME (CFSME) service is committed to sharing expertise & knowledge related to CFSME & young people. We do not endorse or recommend treatment & management other then that recommended by NICE ( & RCPCH guidelines (


Course Directors:

Dr Anna Hutchinson, Senior Clinical Psychologist

Monica Samuel, Senior Physiotherapist


Please refer to UCL site for meeting registration details

The Elephant in the Room Series Three: Latest proposals from DSM-V Work Group


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: Latest proposals from DSM-V Somatic Symptom Disorders Work Group


For commentary on this broadcast on the Co-Cure mailing list see:

ACT: Update on MUS article  12 Sep 2009, Susanna Agardy

ACT: Medically Unexplained Symptoms = Failure to Diagnose  04 August 2009, Susanna Agardy


BBC Radio 4

On Wednesday, 1 July, BBC Radio 4 broadcast a programme presented by Laurie Taylor in the “Thinking Allowed” series which included a strand on “Exploring medically unexplained symptoms”.

This broadcast (which raised the BP of many listeners) can be heard again at:

“From dizziness to chronic pain, the overstretched health service is faced with increasing numbers of patients with symptoms that defy a medical explanation. They are often subject to repeated tests and treatment yet their illness persists. Laurie Taylor is joined by Monica Greco, whose research suggests the practice of patient choice ensures that many such patients get worse rather than better.”

Dr Monica Greco, Senior Lecturer in the Department of Sociology at Goldsmiths, University of London, is author of a paper: “Medically unexplained symptoms: The failure of categories and the paradox of care” .

Also contributing to the broadcast was Dr Simon Cohn, Medical Anthropologist and Senior University Lecturer at Cambridge University, who has published on GWS with Professor Simon Wessely.

The broadcast can also be listened to here, on BBC iPlayer:

Thinking Allowed – Wed, 01 Jul 2009

Broadcast on: BBC Radio 4, 4:00pm Wednesday 1st July 2009
Duration: 30 minutes
Available until: 12:00am Thursday 1st January 2099

The Feedback slot for this broadcast included extracts from a number of concerned responses received from members of the ME community in the wake of last Wednesday’s programme.

For more on Monica Greco see:

Monica Greco (Goldsmiths, University of London)

Medically unexplained symptoms: the failure of categories and the paradox of care

The case of medically unexplained symptoms (or MUS) is one that draws our attention to situations where care, more often than not, is perceived to fail. The role of inadequate diagnostic categories in producing such failures of care is frequently acknowledged in the literature, particularly now that a fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM) is in preparation, offering the opportunity to revise existing nomenclature. This paper offers a reading of this debate to argue that the failure associated with MUS points to the limits and paradoxes inherent not in specific diagnostic categories, but in the practice of diagnostic categorising more generally.

Monica Greco is a Senior Lecturer in the Department of Sociology at Goldsmiths, University of London, and a Research Fellow of the Alexander Von Humboldt Stiftung. She is the author of Illness as a Work of Thought (Routledge, 1998), co-editor (with Mariam Fraser) of The Body: A Reader (Routledge, 2005) and co-editor (with Paul Stenner) of The Emotions: A Social Science Reader (Routledge, 2008).

See also:

Centre for Research in the Arts, Social Sciences and Humanities

Promoting interdisciplinary research and innovation in the Arts, Social Sciences and Humanities

Borders, Boundaries and Thresholds of the Body
Friday, 12 June to Saturday, 13 June

Event programme


In April 09, the DSM-V Somatic Distress Disorders Work Group (also known as the  Somatic Symptom Disorders Work Group) published a brief progress report which can be read on the APA’s website here:

The Somatic Symptom Disorders Work Group reported that they are exploring the potential for eliminating criteria such as “medically unexplained symptoms” because the term was considered “unreliable”, “divisive between doctor and patient” and “lead to mind-body dualism”. 

This was followed, in June, by an Editorial by DSM-V Task Force member and Work Group Chair, Joel Dimsdale, and fellow Work Group member, Francis Creed, published on behalf of the Somatic Symptom Disorders Work Group and which expands on the themes in the APA’s update.

The Editorial:

The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report was published in the June 2009 issue of the Journal of Psychosomatic Research, for which Francis Creed is a co-editor.

Free access to full text and PDF versions here:

Under the section “Psychological factor affecting a general medical condition” the Dimsdale/Creed Editorial reports that some authors have recommended wider use of this existing DSM-IV category as “a diagnosis that encompasses the interface between psychiatric and general medical disorders” and it references the 2005 paper by Mayou R, Kirmayer LJ, Simon G, Kroenke K, Sharpe M: Somatoform disorders: time for a new approach in DSM-V. Am J Psychiat. 2005;162:847–855

Free access to full paper at:

The Editorial reports that the [Psychological factors affecting a general medical condition] diagnosis “has been underused because of the dichotomy, inherent in the “Somatoform” section of DSM-IV, between disorders based on medically unexplained symptoms and patients with organic disease”, and that by doing away with the “controversial concept of medically unexplained”, the proposed classification might diminish the problem.

The conceptual framework the Somatic Symptom Disorders Work Group currently proposes “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”.

It goes on to list a variety of different subtypes included within the diagnosis of “Psychological factors affecting a general medical condition” including a specific psychiatric disorder which affects a general medical condition; psychological distress in the wake of a general medical condition and personality traits or poor coping that contribute to worsening of a medical condition. It suggests that these might be considered in the rubric “adjustment disorders” but that the location of this type of adjustment disorder had yet to be settled within the draft of DSM-V and that the text and placement for these different variants of the interface between psychiatric and general medical disorders was still under review.

The current use of the diagnosis “Psychological Factors Affecting Medical Condition” in DSM-IV is set out here:

The proposal that the concept of “medically unexplained symptoms” might usefully be eliminated is interesting as Francis Creed is currently working with EACLPP colleagues, Henningsen and Fink* on a draft white paper for the EACLPP MUS Study Group called: “Patients with medically unexplained symptoms and somatisation – a challenge for European health care systems”

A copy of the MUS Study Group working draft, which is still out for consultation, can be downloaded here:

See section [5] of previous ME agenda posting for contact details for submission of comments to the EACLPP:

Extract from draft White Paper: “Patients with medically unexplained symptoms and somatisation – a challenge for European health care systems”


There is no simple way to classify MUS in medicine and many doctors, especially in primary care, are rather reluctant to code them at all. These facts seriously hamper recognition, research and treatment of MUS and somatisation and communication with patients and among health professionals about them.

Classification depends on two related differentiations: classification on the level of either symptoms, syndromes or disorders and classification either as physical, mental or unspecified.

Classification as a single symptom is done for instance with the ICD-9 code 780-789 “Signs, symptom and ill-defined conditions” or its equivalent in ICD-10, chapter XVIII (R00-R99). This classification is easy to use and respects the fact that, at least early in its course, it is hard to tell whether a symptom can be organically explained, or has a physical or mental nature. But it is therefore very unspecific, and it is not adequate for multiple symptoms and severe accompanying distress.

Classification as a specific functional somatic syndrome (FSS) is possible for those patients who have a constellation of (usually more than one) medically unexplained symptoms that fit with the description of this FSS. Examples are Irritable bowel syndrome(IBS), fibromyalgia (now called chronic widespread pain), chronic fatigue syndrome (CFS), temporomandibular joint pain. A large proportion of patients with one FSS also meet the criteria for one or more other FSS (see: Comorbidity); fatigue, for example, is a recognised feature of both chronic fatigue syndrome and fibromyalgia. This classification is used widely in somatic special care, where a major proportion of new patients are found to have a functional somatic syndrome – irritable bowel syndrome in gastroenterology, chronic widespread pain in rheumatology etc. One major advantage of terms like “FSS”, “IBS”, or “CFS” is that they are less stigmatising than the terms “somatisation” and “somatoform disorders”. It is important to note, however, that gradation of severity and a description of psychological and behavioural characteristics are not part of the description of Functional somatic syndromes.

Classification as a somatoform disorder (SFD) within the ICD-10 chapter V (F) on mental disorders and the DSM-IV. In contrast to classification as FSS, subgroups of somatoform disorders allow some gradation according to number of symptoms/severity and delineation of the subgroup with predominant health anxiety. The SFD classifications mention psychological and behavioural characteristics like preoccupation with organic disease or dysfunctional illness behaviour, but they are not operationalized for single disorder categories. This classification is more difficult to use because it requires judgements about the fact that symptoms are medically unexplained and not part of another mental disorder like depression or anxiety. The term encourages a “lumping” perspective compared to the “splitting” tendency of FSS. It is, however, disliked by many patients, in some countries more than in others, because of its implication that the MUS are part of a mental disorder. New editions of the SFD classifications in ICD-11 and DSM-V are currently under way…

Note that Fibromyalgia is referred to in this draft MUS White Paper as “now called chronic widespread pain”.

Fibromyalgia is currently classified in ICD-10 under:

M79 Other soft tissue disorders, not elsewhere classified
M79.0 Rheumatism, unspecified

*Creed, Henningsen and Fink were members of the CISSD Project.


According to the Journal of Psychosomatic Research, DSM-V Task Force member, Javier Escobar, also functions as a collaborator for the Somatic Symptom Disorders Work Group.

Dr Escobar’s DSM-V Task Force member bio and COI disclosure lists the following interests:

Principal Investigator and Director of the “MUPS Research Center in Primary Care”.
Associate Dean for Global Health and Professor of Psychiatry and Family Medicine at the University of Medicine and Dentistry of New Jersey–Robert Wood Johnson Medical School.
Member of the National Advisory Committee for the Robert Wood Johnson Foundation’s Physicians Faculty Scholars Program.
Former senior advisor to the Director of the National Institute of Mental Health (NIMH) in 2004.
Former member of NIMH’s National Advisory Mental Health Council.
Former advisor to the World Health Organization, Geneva.
Member of the Food and Drug Administration’s Advisory Committee on Psychiatric Drugs.
Standing member of several research review committees for the National Institutes of Health (NIMH, NIDA, and NIA) and the Veterans Administration, and other national task forces.

“Dr. Escobar has been an active researcher in the areas of clinical psychopharmacology, psychiatric epidemiology, psychiatric diagnosis, and cross-cultural medicine and Psychiatry. Currently Dr. Escobar is the principal investigator of two projects funded by the National Institute of Mental Health and also collaborates as mentor, co-investigator or consultant in several other NIH-funded projects in the areas of mental disorders in primary care, treatment of somatoform disorders, cross-cultural psychiatry, psychiatric epidemiology and development and mentoring of new psychiatric researchers. He has published more than 200 scientific articles in national and international books and journals.”

Dr. Escobar’s APA DSM-V disclosure statement declares income from or interests in Eli Lilly, Pfizer, BMS, Forest, Wyeth, Johnson & Johnson, Bristol-Meyers Squibb, and American Association of General Psychiatry.

In 2008, a Special Report by Humberto Marin, Javier I. Escobar, MD: Unexplained Physical Symptoms What’s a Psychiatrist to Do? was published in Psychiatric Times. Vol. 25 No. 9, August 1, 2008

(Free access to full paper here: )

Escobar and his co-author define “Functional Somatic Syndromes” (FSS) to include:

Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, 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, Hypoglycemia, Chronic low back pain, Dizziness, Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast infection and Total allergy syndrome.

and that:

“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.”

In this Special Report, the authors recommend “Rather than reassuring patients, unwarranted consultations or tests may feed their belief that they have a serious physical illness.”

That “fatigue” should be addressed with “an aerobic exercise program (eg, walking, jogging, biking, swimming) at least 4 days a week but ideally, every day…” and that clinicians should “Discourage secondary gains such as missing work or class or avoiding home chores”.

Javier Escobar was a member of the workgroup for the “Conceptual Issues in Somatoform and Similar Disorders (CISSD) Project”, co-ordinated by Dr Richard Sykes, PhD, between 2003 and 2007, and administered by UK patient organisation, Action for M.E. Recommendations and proposals resulting out of the CISSD Project have informed the APA’s development of DSM-V and fed into the revision process of ICD-10: Chapter V. The chapter on Mental and behavioural disorders in ICD-11 is to be “harmonized” for uniformity with DSM-V.

Four other members of the CISSD Project’s 24 member international Work Group (Arthur J. Barsky, Francis Creed, James L. Levenson, Michael Sharpe) have been members of the APA’s DSM-V Work Group on Somatic Symptom Disorders since 2007.

Dr Richard Sykes is now engaged in a new project –  the “London Medically Unexplained Physical Symptoms and Syndromes (MUPSS) Project” in association with the Institute of Psychiatry, King’s College London, through which funding is provided by the Hugh and Ruby Sykes Charitable Trust.  The nature, aims and objectives of this project have yet to be established.


Related links:

Psychiatric Times  maintains a page of resources for the current edition of DSM, DSM-IV, with updates, articles and commentary around the development of DSM-V.

American Psychiatric Association (APA) DSM-V revision web pages:

DSM-V: The Future Manual:

DSM Revision Activities:

DSM-V Somatic Distress Disorders (Somatic Symptom Disorders) Work Group member bios and COI disclosures:

Make a Suggestion:


WHO ICD revision:

ICD Revision Steering Group which includes chairs of the Topic Advisory Groups (TAGs):

ICD Update and Revision Platform Entry Page:

Invest in ME: Statement and letter to Prime Minister (e-petition)

Invest in ME: Statement and letter to Prime Minister (e-petition)

Statement from Invest in ME

6 July 2009

Invest in ME are profoundly disappointed by the continuing indifference to ME which the response to the e-petition from the Prime Minister’s office has shown.

The perfunctory response provides further confirmation that the current government has no intention of taking seriously the plight of people affected by ME.

The lack of attention which the government continues to display toward ME is evident in the uninformed and superficial response.

From the tardiness of the reply (provided over a month after the IiME ME/CFS conference in London was held) to the lack of any real policy being evident toward ME the Prime Minister’s office has demonstrated that the government has no interest in engaging with the patient community and is devoid of ideas as to how ME can be treated.

Invest in ME have responded to the Prime Minister. Our letter has been emailed and sent via Post to the Prime Minister.

A copy of our letter can be found below via the links provided.

Invest in ME have requested a meeting with the Prime Minister and are willing to organise a representation to visit him at any time.

We have also offered to arrange for the Prime Minister to visit a severely affected person with ME in the hope that he would see for himself the desperate needs of people with ME in this country.

We invite all friends of IiME to contact the Prime Minister’s office and voice their opinion.

Meanwhile Invest in ME have had a response from the Chief Medical Officer to our letter to him on ME Awareness Day. We hope to be setting up a meeting with his policy team in the near future.

The response from Invest in ME to the Prime Minister is available here –

PDF here

The Rt. Hon Gordon Brown MP
10 Downing Street
London SW1A 2AA
United Kingdom

5 July 2009

Subject: Response to the E-Petition to Attend the IiME ME/CFS Conference 2009

Dear Mr. Brown,

In March of this year an e-petition was raised ( ) asking the “Minister of Health, Medical Research Council delegates and the Chief Medical Officer to attend the INVEST in ME Conference 29th May 2009 London”. The petition was raised in March 2009 to allow enough time for the question to be raised to the relevant parties before the conference date of 29th May 2009.

On 1st July 2009 (over three months after the petition was raised and two months after the petition was closed) your office replied ( ).

Invest in ME are profoundly disappointed by the continuing indifference to ME which the perfunctory response from your office has shown – and yet we hoped that perhaps we could expect more from our Prime Minister.

The petition was a genuine attempt to engage your government and the organizations/officials which you fund with public money. It was an endeavour to provoke some understanding of the issues involved in the current policies toward ME research. By attending the foremost biomedical research conference on ME in Europe your officials would be better equipped to understand the possibilities and the potential available in treating this debilitating illness.

The reply from your office is insulting in its complete lack of engagement of the proposal and of the underlying issues associated with this request.

It gives no joy for us to pronounce that your government is failing a large section of the UK population – people who are chronically ill and who are hoping for leadership and vision from the person who has the power to change things for the better.

Your office states that

“Ministers and the Chief Medical Officer receive a large number of invitations from stakeholders, pressure groups and individuals to attend meetings and events” and “it is not possible to attend the vast majority of these events”.

This was Invest in ME’s fourth annual international conference held in Westminster. We have been asking for the government and the CMO to attend in each of the last four years. The Department of Health has not sent one representative in all of that time.

Your office states that “The Medical Research Council is an independent organisation and it would therefore not be appropriate for the Prime Minister to instruct it.”

The MRC is a publicly-funded organisation “dedicated to improving human health”. It should be accountable to the public. The MRC receives annual ‘grant-in-aid’ funding from Parliament through the Department for Innovation, Universities and Skills and its council members are appointed by the Secretary of State for Science and Innovation.

It is entirely appropriate for the Prime Minister to intervene when there is deliberate bias being operated by this “independent” body which is, nevertheless, supposedly accountable to a government department.

The MRC has provided a total investment of £3,180,900 in funding research projects concerning ME – this money going to psychiatric therapies such as the PACE and FINE trials. Both of these trials are considered meaningless by ME patients and are ridiculed for their lack of scientific rigour in identifying true ME patients. Even those who have participated have criticised these trials. Your government officially recognizes ME as a neurological illness, as does the World Health Organization, yet you allow this “independent” body to avoid funding any biomedical research into ME and instead it supports vested interests who instead use this funding to pursue their own agenda of research into their own chosen fields of psychiatry. The latest ploy by the MRC of creating a panel intent on tying both biomedical and psychosocial factions together will be a liability for future research into ME and we have no faith or belief in their seriousness in looking for appropriate treatments for this illness.

It is a scandal that the MRC causes the prolongation of such an appalling waste of life and scarce resources; that it seems to lack any accountability for its actions (or lack of action); that it does not serve the patient community; that it is systemically flawed with a refereeing system for research proposals that is neither transparent nor fair; and that it ignores requests to attend a conference providing the latest information on biomedical research which is being held on its doorstep and which could lead to improvement in human health.

We cannot comprehend why you and your ministers feel it “inappropriate” to intervene to understand why the MRC policy toward research into ME is a failure.

The crass referral to the UK Clinical Research Network of the National Institute for Health web page in your reply to the petition indicates that there is nobody in your office who really understands anything about ME. We found just two references on that site regarding research for ME (the PACE Trial and the FINE Trial) – using the term chronic fatigue or chronic fatigue syndrome rather than myalgic encephalomyelitis.

The one-size fits all approach of your government, of NICE and of the MRC in supporting only Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) for people with ME – therapies rejected by the ME community – is testament to the lack of ideas and the lack of commitment by your government. We know of no patient groups who welcome studies into CBT and GET apart from two organisations who accept money from your government to support your policies.

NICE was taken to judicial review by ME patients due to their unsatisfactory guidelines for ME. Yet your government does nothing to recognize the dissatisfaction with your and their policies.

Your reply states that –

“some recent findings about a genetic basis of CFS/ME that are providing extremely valuable insights into the causes of, and possible therapies for, the condition these are early research findings that at present have no direct relevance to any predictive or diagnostic gene test for these conditions. However, the Department of Health continues to keep such developments under review and there are well-established mechanisms to evaluate new genetic findings and ensure their proper implementation across the NHS.”

This is a pitiful response which is condemnable by its lack of up-to-date information and patent spin. It is symptomatic of a government which doesn’t understand, doesn’t bother to verify, and cannot be bothered to do anything.

Your “independent” MRC refused to fund world-class research from Dr Jonathan Kerr which is clearly seen by others abroad to be state of the art. Why is public funding for this valuable gene research being constantly refused? It has been funded entirely by small charities and many individuals donate from their benefits because they are so desperate for proper treatments being developed instead of being offered only CBT and/or GET.

If any of your government ministers or officials had bothered to find the time to walk a few hundred metres to the conference venue on 29th May this year then they would have been able to judge for themselves how fatuous the response from your office is.

There is substantial evidence now of effective treatments for some sub-groups of ME. Antivirals are one example yet no funding has been made available for performing clinical trials and PCTs do not allow patients to be given these drugs. Yet how hypocritical the situation is when your Chief Medical Officer allows antivirals to be made freely available to any person suspected of contracting swine flu despite fewer people suffering from this flu variant than ME.

ME is the largest cause of long term absence from school through sickness for pupils and staff yet your CMO refuses to make ME a notifiable illness in schools.

Yet one case of swine flu frequently closes a whole school for weeks!

The DoH is not reviewing the treatments which are available for ME.

The CMO is not recommending research trials be carried out on promising treatments which privately funded research has identified.

Even the most basic and obvious action which should be required – an epidemiological study of ME in the UK – has not been performed by your government.

The use of a current and sound set of clinical guidelines for ME has not yet been standardized. The Canadian Guidelines document – held by most ME advocates as the best of the guidelines for diagnosis – is not advocated yet by the NHS or DoH despite it now becoming the de facto standard across the world.

Quite simply your government’s policy towards ME is non-existent and its attitude toward people with ME and their families is nothing short of scandalous.

Invest in ME has, in its four years of existence, attempted to educate healthcare staff, the media and the public about the real situation with ME, and show the biomedical research which is being carried out and which holds the promise of effective treatments and cures. Consistently your government has refused to acknowledge any of this.

And yet how easy it would be to change this with a clearly defined strategy of biomedical research which could be funded by public and private funding, if there was a will to do so.

Invest in ME began distribution of the book “Lost Voices from a Hidden Illness” earlier this year. Once delivery began we took the liberty of sending a complimentary copy to your wife, Sarah, who is global patron of the White Ribbon Alliance for Safe Motherhood and co-chair of the High-Level Leadership Group on Maternal Mortality convened by the Global Leadership Network.

ME is more prevalent in women, affecting up to four times as many women as men according to some studies. Many women with ME will never be mothers as they have fallen ill as teenagers and spend decades being bedbound. Many mothers have to watch their children’s suffering for years on end without any help from the health services.

Lost Voices is probably the best book ever about ME which shows the true picture of the effect of ME on suffers and families.

We have received neither acknowledgment of receipt of the book nor any indication that the book has been read.

If only one of your ministers would read Lost Voices then there would be no need for any further debate. The very basic compassionate instinct of most human beings would demand immediate action.

Your government fails its citizens, refuses to take any action, ignores the effort of two and a half thousand people who petition you to help them, looks the other way to the plight of the hundreds thousands of citizens affected by this terrible neurological illness and concentrates on spin and ignorance as the cornerstone of your policy toward ME.

A year ago you gave a speech in which you stated that –

“The NHS of the future will do more than just provide the best technologies to cure: it will also – as our population ages and long-term conditions become more prevalent – be an NHS that emphasises care too.”

“It will not be the NHS of the passive patient – the NHS of the future will be one of patient power, patients engaged and taking greater control over their own health and their healthcare too.”

“With cutting-edge techniques from genetics to stem cell therapy – and life-saving drugs to prevent, alleviate or cure conditions ……”

“So if we are to prevent as much suffering and save as many lives as possible, it is clear that utilising these new technologies must continue to be at the heart of any progressive health policy.”

In the last year Invest in ME are aware of people dying from ME, as has happened over the last decades.

We are aware of a family where the mother suffered from ME and where the pain was so great that she was taken to Switzerland to perform an assisted suicide.

We know of a recent case of one mother who has been charged with assisting her daughter in taking her life after she had suffered from severe ME for almost two decades – the pain being unbearable to endure.

We know of patients in the heart of London who suffer for years from ME and receive absolutely no medical treatment – lost voices with no recourse to help from a government and a healthcare service which provide nothing.

We know only too well of children who lose their teenage years and become isolated and reduced to utter dependency on parents who themselves struggle to find any help from the NHS, from the educational establishment or from ministers.

It is easier for people in the UK with ME to get help to die than it is for them to get help to live – thanks to your government’s policies.

Your government’s health ministers have consistently avoided taking any action, continued to answer the petitions and letters from people with ME and their families by using outdated information, template paragraphs containing multiple inaccuracies and an indifference to the plight of chronically ill people.

The cursory response to a valid plea from people with ME and their families shames your government and gives the lie to the sentiment that you really care for what happens to citizens in this country.

In this letter to you we have only concentrated on healthcare provision. We have not even begun to mention the effect of the policies of your government which force chronically ill people with ME to be denied benefits or to spend all their energy on battling to regain benefits taken away by your government departments.

So what are ME patients and their families to do now having received this appalling response from your office?

Despite no epidemiological study being recommended by your government or insisted upon by the health service we can suspect, from studies performed by responsible researchers, that there are between 120,000 and 240,000 people affected by ME in the UK.

Many of these can be expected to have some family and these, in turn, can be expected to have immediate friends and relatives.

It would be no exaggeration to assume, then, that upwards of two million people will be directly affected by the lack of healthcare provision for people with ME – either as direct sufferers of the illness, direct relations or friends of those affected. This figure could be a very conservative figure.

Although Invest in ME does not hold party political views it is an obvious corollary that two million citizens, or more, make up a substantial number of voters who cannot be ignored and who may decide with their votes what they think of the Labour governments’ policies toward ME over the last decade.

It may be that ME organizations can mobilize enough of a protest to make a difference in the forthcoming election and that would, indeed, provide an irony where, to use your own words, the “future will be one of patient power“.

Before we contemplate that action we would ask that you yourself make an hour or two of your time available and devote it to the cause of people with ME.

We ask you to accept a party of individuals organized by Invest in ME to visit you and explain clearly what is required and how your government’s lack of action is destroying lives – or let us take you to a chronically ill patient with ME so you yourself can see the utterly appalling situation which exists for people in this country who are denied treatments (which exist) due to the ignorance of the healthcare service, government ministers and establishment organizations responsible for deciding on which research is given funding.

Letters, petitions, emails and the deaths of people with ME have not moved your government to act.

Will you now see the desperate need for action, meet with us and let us try one last time to make you understand what is really happening?

Show us that, as Prime Minister, you and your government have not abandoned basic ideals of justice and humanity being directed towards its own citizens.

Time is passing not just for your government – more importantly it is also passing for another generation of sufferers from this illness.

Yours Sincerely,

The Chairman and Trustees of Invest in ME

Invest in ME
Registered UK Charity Nr. 1114035

Number 10: Invest in ME Conference Petition: Response

On 6 March, I highlighted a Number 10 e-petition submitted by David Loomes.  The deadline to sign up by was 1 May 2009. The e-petition received 2,486 Signatures.  Any enquiries in relation to this e-petition should be directed to David, the petition organiser.

The response to this e-petition can be read here and below:

Wednesday 1 July 2009  Attend IiME 2009 – epetition response

We received a petition asking:

“We the undersigned petition the Prime Minister to petition for Ministers Of Health, MRC and CMO to attend the INVEST in MEConference 29th May 2009.”

 Details of Petition:

“We the undersigned petition the Prime to send the Minister Of Health, Medical Research Council delegates and the Chief Medical Officer to attend the INVEST in ME Conference 29th May 2009 London. The previous IiME conferences in 2008 attended by presenters and delegates from 13 countries, from Europe, USA, Australia, New Zealand and South Korea demonstrated that “PROVEN BIOLOGICAL MARKERS & TREATMENTS FOR SOME SUB TYPES OF ME/CFS ARE ALREADY THERE!” Now the challenge is for the Chief Medical officer, the Medical Research Council and the Government to take up the challenge laid down by the conference in 2008 and commit to a national strategy of biomedical research into ME, without any conditions or provisions for enforcing the psychosocial model to be in corporated.”

 Read the Government’s response

Thank you for your e-petition. I apologise for the delay in replying. Ministers and the Chief Medical Officer receive a large number of invitations from stakeholders, pressure groups and individuals to attend meetings and events. Regrettably, it is not possible to attend the vast majority of these events. The Medical Research Council is an independent organisation and it would therefore not be appropriate for the Prime Minister to instruct it. More generally, the Government recognises chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) as a debilitating and distressing condition. CFS/ME is a chronic illness and health and social care professionals should manage it as such. The Department of Health funds research for health policy development, clinical and applied health research in the NHS, and the NHS costs incurred in supporting research funded by other bodies such as the research councils and charities. The Department’s research budget for 2009/10 is £896million. Details of individual NHS-based projects, including some concerned with CFS/ME, are on the UK Clinical Research Network Portfolio database at Some of these projects receive external funding from research councils and charities. There have been some recent findings about a genetic basis of CFS/ME that are providing extremely valuable insights into the causes of, and possible therapies for, the condition. Clearly, these are early research findings that at present have no direct relevance to any predictive or diagnostic gene test for these conditions. However, the Department of Health continues to keep such developments under review and there are well-established mechanisms to evaluate new genetic findings and ensure their proper implementation across the NHS.

ME in Westminster: Debate: Welfare Reform Bill 18 June 2009

Source: UK House of Lords
Date: June 18, 2009


Welfare Reform Bill

Amendment 55 – Moved by The Countess of Mar

55: Clause 2, page 7, line 5, at end insert –
‘( ) must be reasonable, having regard to whether the person has a condition with fluctuating signs and symptoms, and the nature of that condition;’

The Countess of Mar

I shall also speak to Amendments 90 and 93. In doing so, I declare a non-pecuniary interest as chairman of Forward ME and patron of a number of ME charities. The amendment moved by the noble Lord, Lord Rix, was about people  who want to go to work and are sometimes not thought fit to do so. I want to discuss people who are deemed fit to go to work but who are not fit to do so. The Minister will understand from long experience why I am concerned about this particular group of people. I explained in some detail at Second Reading the problems that they have when encountering the benefits system.

ME, or CFS/ME as it is known by some, is a condition that affects approximately 250,000 people. Many are young and a majority are women. Some who developed the illness in their teenage years have never been able to work; they have not qualified for contribution- based benefits and are totally dependent on income support. I wish that I did not have to say it again, but I feel that I must. CFS/ME is recognised by the World Health Organisation and the Department of Health as a neurological disease of unknown aetiology. Some 5,000 peer-reviewed and published scientific papers indicating various aspects of the central nervous, immune and hormone systems that are affected go some way to explaining the fluctuating nature of the condition. Yet, the view persists that this is a psychosomatic illness that is easily cured by a course of CBT and GET.

In 1994 I met Dr Aylwood when he was head of the Benefits Agency medical services. At that stage, he arranged for the doctors? training manual to be rewritten to take into account people with fluctuating illnesses. Fifteen years on, the message has still not been received. I do not know whether the noble Lord has received a copy of the letter that I left for him yesterday. It is a letter from a lady called Jayne Thomas who wrote:

‘Dear Countess,
I am enclosing, for your information, a copy of an appeal letter that I have just sent to the Department of Work & Pensions/Job Centre as they seem to think that my condition has no impact on my ability to work’.

I have no compunction about reading this letter because it says exactly what I have been trying to say for years. This is her appeal letter:

‘With reference to your decision to stop the above’

– her ESA claim –

‘I am writing to appeal against this decision as I believe it is wrong and was stunned to see that you have given me 0 (ZERO) points for my claim. Firstly, please note that you sent the ESA65 to the wrong address’

– we go back to the comments of the noble Lord, Lord Rix, earlier this week –

‘(I advised you at the end of April and many times since of my new address), the letter advising your refusal to continue to pay me arrived at the right address at the top of this letter. Both these letters had the same date on them and I would appreciate it if all future correspondence has the right address (as at the top of this letter). This may explain why a cheque went missing at the beginning of May (I am still awaiting reimbursement for this missing cheque). I would like to appeal on the following grounds;

1. At the medical assessment the Doctor from your contractor, ATOS, saw me for just 20 minutes and assured me that NO decision would be made to stop my ESA without full consultation with my GP/specialists who have been seeing me since my illness began. I spoke to my GP/ Specialist yesterday and they confirm that they have had no correspondence with yourselves.
2. With reference to your ?point scoring?, I disagree as follows;
a. Walking 0 points
I have explained to you that I am unable to walk any distance without exacerbating my condition and increasing the pain in legs. At times, I am unable to walk even short distances and a specialist only recently suggested that I may have to ask the school, where I take my son, that I get special permission to drive onto the school site to avoid the walk from the car to the school.
b. Standing & Sitting 0 points
Again, I have already explained that I cannot stand in one position for very long at all and if I sit down for too long, the pain in my legs becomes intolerable.
c. Bending & Kneeling 0 points
Again, I explained that I am totally unable to kneel or squat. When your Doctor at the assessment asked me to squat, I was unable to do this and he urged me to stop when he could see I was in pain.
d. Remaining Conscious 0 points
The extreme fatigue I suffer from can cause periods of debilitating tiredness.
e. Memory & Concentration 0 points
My condition causes short-term memory loss and if I push beyond my boundaries, concentration can become very difficult. If I try to read a novel, I am restricted to only a couple of pages where I can concentrate on the plot, if I push on I end up in pain (this was explained to your Doctor)
f. Starting Jobs & Keeping on with them AND Doing & Finishing Jobs 0 points
I have explained to you that I am unable to start some tasks, let alone finish them. The debilitating fatigue and pain I suffer from can make performing a task such a cooking a meal very difficult and I quite often rely on my husband for this as I do for other household tasks’.

She then says – and this is significant:

‘By refusing to continue giving me benefit, you are saying that I am fit for work. I had held down a very responsible job, which I thoroughly enjoyed, for 10 years until I was dismissed on grounds of ill health on 27 February 2009. Both my employer and myself made every effort to get me back to work last year. I entered a long period of rehabilitation with them from July? the end of September where I gradually returned to work. I went back to work properly at the end of September but was unfortunately only able to sustain this return for 6 weeks. At this point, I suffered a terrible relapse which left me unable to cope with the most basic of tasks’.

I will not go on. I think that I have said enough to make it clear what is going on. I am aware that benefits claimants who have CFS/ME, when called for a medical examination or interview, will do their best to perform the tasks given to them. They will have rested for the day prior to their encounter. They may find it difficult to describe their illness or what they are feeling at the time because they have recognised cognitive problems. They may omit to reveal important factors because they are tired after travel. They will often be able to do what is asked of them physically but very soon afterwards they will collapse from their exertions and may take several days to recover.

I know that the noble Lord is aware of this. However, unless all DWP staff, including the agency medical practitioners and the contractors, are convinced that ME/CFS sufferers are not inadequate attention seekers looking for sympathy and are trained and made thoroughly aware of the nature of this illness, there is a risk that people with ME/CFS are going to be harassed and distressed and made more sick than they already are. Who will be legally responsible if a claimant complies with nstructions for fear of losing benefits and is made seriously or irreversibly more ill?

I have come across none who are not eager to be able to lead a normal life. They desperately want to be able to rejoin society and to become financially independent. Most have tried repeatedly to return to a normal life only to suffer repeated setbacks. This is why they are so strident in their requests to Her Majesty’s Government for funding for biomedical, rather than psychiatric, research into their illness. At the moment there is no definite cause or cure. This is not a reason to penalise sufferers or even to frighten them with threats of benefit cuts if they do not comply. I am not suggesting that everyone in this group should be left to moulder in their illness and not be offered assistance in an attempt to resume a normal life. I am asking that they are not penalised if they fail to meet the expectations of their adviser or cannot maintain a consistent work pattern.

There are a number of other illnesses in this group, such as irritable bowel syndrome, fibromyalgia and multiple chemical sensitivity, which equally should be recognised and their sufferers treated with sensitivity. I beg to move.

Baroness Thomas of Winchester

We are assured at every turn that those with fluctuating health conditions, such as ME, MS, rheumatoid arthritis and mental health problems, who are in the employment group of ESA, and therefore in the progression-to-work group, will be considered sympathetically by Jobcentre Plus staff before being directed to work-related activity. The now former Minister in the other place said that, ‘a person’s health is always considered, so there is no need for that to be prescribed in the Bill’. – [Official Report, Commons, Public Bill Committee, 24/2/09; col. 140.]
However, that is not the experience of many people with fluctuating conditions, as the noble Countess, Lady Mar, has so powerfully said today and on many occasions. It is all too possible for someone who is experiencing a good day when they see either a disability benefits adviser or a personal adviser for their condition not to be recognised adequately. The adviser should have a report following a work-related health assessment about a person’s condition, which indicates whether it is a fluctuating condition. I would be interested to hear if this is always the case. However, this assessment would not include any report from a person’s GP or consultant which might confirm the fluctuating nature of the condition. I wonder why that is so. It is a matter of public record that the new Secretary of State for Work and Pensions has suffered from ME. We therefore hope that she will be sympathetic to this point, if not to the wording of the amendment.


Lord Skelmersdale


Again, I have to declare an interest in that I have a son-in-law with severe ME. He finds that at moments he is able to do quite normal things. But then, a few hours later, he will collapse for another two, three, four or five days. If you have an assessment in a good period, it is extremely difficult- this was the point made by the noble Baroness, Lady Ashfar – to come to a realistic conclusion of what may happen in the rest of the week or month. How you train people to have proper observation or realisation of that fact is beyond me. But there must be better brains than mine around the system who could get to the bottom of it. Until we do, all hope for the people whom the noble Countess has been talking about is lost.


[Amendment 55 withdrawn].
(c) 2009 Parliamentary copyright