Category: Professor Peter White

MEA statements: Review of NICE guideline CG53 and PACE Trial results

MEA statements: Review of NICE guideline CG53 and PACE Trial results [and BACME (British Association of CFS/ME) 2010 Conference Programme]


The British Association of CFS/ME (BACME) appears to have taken over some of the functions of the CFS/ME Clinical and Research Network and Collaborative (CCRNC). There is no website for BACME and very little information available about the role and operation of this organisation.

BACME is chaired by consultant paediatrician, Dr Esther Crawley (lead researcher, Lightning Process pilot study in children). Assistant Chair is Alison Wearden PhD, CPsychol (lead researcher, FINE Trial).

Related information from the News section of the ME Association website (which includes extracts from BACME’s Constitution for which I do not have access to a full copy):

Questions raised over training role of new body for ME/CFS professionals

‘Parliamentarians should examine role of new NHS training forum for ME/CFS’

1] ME Association statement: NICE Guideline on ME/CFS – 2010 review process (UK)

2] ME Association statement: PACE Trial results in October (UK)

ME Association statement: NICE Guideline on ME/CFS – 2010 review process (UK)

1 September 2010

Having been led to believe that the proposed review of the 2007 NICE guideline on ME/CFS would be starting in August 2010 The ME Association wrote to NICE to seek clarification in the absence of any official announcement being made during August.

We received the following reply on 24 August:

Thank you for contacting the National Institute for Health and Clinical Excellence (NICE).

The review date which you refer to is the date at which we plan to begin the review process. We are currently beginning to gather evidence and opinions to inform our review proposal. If there has been a large amount of new evidence produced since the original guidance was produced, the review proposal may be to conduct a full review, which can take over a year. On the other hand, if there has not been very much new evidence produced, we may propose to delay the review.

The review proposal will be posted on our website for consultation in the months following the ‘review date’ listed in the guidance. To be notified of additions to web pages relating to your area of interest, including review proposals, you may like to sign up for our web alert system. You can do this via the following page of our website:

I am sorry that I do not have any more definitive information at this stage.


Carla Springl

Communications Administrator (Enquiry Handling)
National Institute for Health and Clinical Excellence

Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom


We also know that members of the original guideline development group have been asked for their opinion as to whether there is sufficient new evidence to justify a review at this time.

The important phrase here is large amount of new evidence produced since the original guidance was produced.

In NICE-speak this means results from randomised controlled trials into any aspect of management that have been published in reputable peer-reviewed medical journals since August 2007. The NICE guideline is primarily concerned with the clinical assessment and management of ME/CFS and does not get involved in coming to conclusions about causation – although NICE obviously has to take note of developments relating to causation, including the findings relating to XMRV and MLVs.

Having managed to fight off a Judicial Review of the ME/CFS guideline, NICE will be feeling confident that its guidance is sound and acceptable to both patients and doctors – a position which many patient support organisations, including the MEA, obviously strongly disagree with. And with very little in the way of new evidence being published in relation to the treatment of ME/CFS, and the fact that results from the PACE trial are fast approaching, it seems likely that NICE may decide to defer this review until later in the year, or even 2011, when they have this information – which could well strengthen their controversial recommendations regarding cognitive behaviour therapy (CBT) and graded exercise therapy (GET).

It should also be noted that NICE will not want to re-open the debate about existing evidence (ie results from clinical trials that were published up to the time of the 2007 guideline) – they want to look at new evidence.

The ME Association will obviously be challenging the current recommendations regarding the use of CBT and GET and to support out case we will be making use of the patient evidence (approx 4,500 respondents) from our 2010 Management Report – the largest ever survey of patient opinion ever carried out in the UK, probably in the world. This report can be accessed on-line here:

We are also consulting with various experts, including those with statistical knowledge, about how best to present our case to the review.

For information purposes the following explanation of how recommendations contained in a NICE guideline should be interpreted by clinicians when making decisions about patient management is worth noting. It clearly contradicts the mistaken view of some doctors that NICE guidelines are almost mandatory and as a result they are no longer able to exercise their clinical judgement where this is may not be entirely consistent with a guideline position.

NICE clinical guidelines are recommendations about the treatment and care of people with specific diseases and conditions in the NHS in England and Wales. Clinical guidelines represent the view of NICE, and are arrived at after careful consideration of the evidence available. Healthcare professionals are expected to take it fully into account when exercising their clinical judgement. However, the guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, and informed by the summary of product characteristics of any drugs they are considering.

Implementation of this guidance is the responsibility of local commissioners and/or providers. Commissioners and providers are reminded that it is their responsibility to implement the guidance, in their local context, in light of their duties to avoid unlawful discrimination and to have regard to promoting equality of opportunity. Nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties.

With regards to technology appraisal guidance, this type of guidance contains recommendations on the use of new and existing medicines and treatments within the NHS. The NHS is legally obliged to fund and resource medicines and treatments recommended by NICE’s technology appraisals, usually within 3 months of guidance being published.

ME Association
1 September 2010


Ed: This BACME conference and AGM is being held in Milton Keynes on 13 and 14 October and is faciliated by AYME who have collaborated in CCRNC conferences.

Download PDFs for BACME Provisional Programme and Registration Form here:

BACME 2010 Conference Programme

BACME CFS ME CCRNC conference 2010 Registration Form


2] ME Association statement: PACE Trial results in October (UK)

3 September 2010

It is being reported today in Link magazine (issue 39, September 2010) that:

Data collected for the one year follow up of the PACE trial is currently being analysed in preparation for publication of the findings.

Professor Peter White of St Bartholomew’s Hospital, London will report on the most up-to-date progress and baseline data from the PACE trial to delegates at the British Association of CFS/ME (BACME) October conference.

The release of this PACE trial information may well have an effect on a decision by NICE as to when they commence a review of the 2007 Guideline on ME/CFS.

A statement and more information on the NICE Guideline review can be found in the September news section on the MEA website.

Information supplied by ME Association:


BACME CFS ME CCRNC conference 2010 Registration Form

BACME 2010 Conference Programme

Provisional Programme

British Association of CFS/ME (BACME)
2010 Conference

Draft Program – please note there may be changes before final program

Milton Keynes 13-14 October
Wednesday 13 October

9.30 -10.30  Registration and coffee

10.30-11.00  Opening Address:

Prof Stephen Holgate  MRC (Medical Research Council)  Clinical Professor of Immunopharmacology. 

“The time has at last arrived to strengthen research into CFS and ME”

11.00 – 12.00  Keynote Speaker: Professor Daniel J. Clauw MD Division of Rheumatology University Michigan

“Advances in Our Understanding of CFS and Overlapping Conditions”

12.00 – 1.30  Lunch Hot and Cold Buffett (preference to be booked)

1.30 -2.15  Dr Alison Wearden Reader in Psychology: FINE Trial

“Pragmatic rehabilitation for Chronic Fatigue Syndrome/ME”

2.15 – 3.00  Judith Harding:
The Role of Diet Management in CFS/ME

3.00 – 3.30  Comfort Break

3.30 – 5.00  Uni – professional Networking Groups.
To be facilitated please contact asp if you would like to request a specific group e.g physiotherapists, nurses, paediatricians

5.00 – 6.00  BACME AGM Chairperson: Gill Walsh
(for existing and new members)

7.30  Conference Dinner (to be pre-booked separately)

Thursday 14 October

9.00 Registration & Coffee

9.30 – 10.45  Workshop 1

10.45 – 11.15  Coffee & Comfort Break

11.15 – 12.30  Workshop 2

12.30 – 1.45
Lunch Hot and Cold Buffett (preference to be booked)

1.45 – 2.15  Poster Presentations – Organiser Gabrielle Murphy
Posters will be on display for the whole 2 days

2.15 – 2.45  Coffee & Comfort Break

2.45 – 3.30  Diane Cox & Heather Garry
Video Conferencing for delivery of CFS/ME Interventions at Home (Tele-rehabilitation)

3.30 – 4.30  Professor Peter White
St Bartholomew’s Hospital London

“PACE trial: so near yet so far”

(If outcome results are not yet published, Peter White will present the design, progress and baseline data from the trial)

4.30 – 5pm  Closing Address – To be announced


1. Working with the Severely Affected – Leeds Service

2. Mindfullness and ME –The Mindfull Approach to Chronic Illnesses Steve Johnson, Director of the Breathworks Foundation

3. Review of Literature and Clinical Implications on Sleep (please note this is not a workshop) Gabrielle Murphy & Alex Westcombe

4. To Be Announced

5. Research workshop – How to do research successfully when you are a busy clinician – Professor Peter White

6. Group work – Michelle Selby and Helen Chub


Additional information on selected presenters:


Gabrielle Murphy
Physician working in the Fatigue Service at the Royal Free Hospital and Clinical Lead. She also works in the Department of HIV medicine. Her interests include medically unexplained symptoms MUS). Also involved in local and national organisations promoting access to CFS/ME services and ongoing research.

Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Cognitive Behaviour Therapy for CFS/ME

Alex Westcombe
North Bristol NHS Clinical Psychologist

Michelle Selby
OT lead Dorset CFS Service (formerly “The Wareham Clinic”); Clinical Co-ordinator, Southampton CFS/ME Clinic

Dr Helen Chubb
Senior Registrar, Whitchurch Hospital
Chronic Fatigue Syndrome – personality and attributional style of patients in comparison to healthy controls and depressed individuals: Helen. L. Chubb; Irene Jones; Janice Hillier; Christopher Moyle; Stephanie Sadler; Tanya Cole; Kate Redman; Anne Farmer
DOI: 10.1080/09638239917274 Journal of Mental Health, Volume 8, Issue 4 August 1999 , pages 351 – 359

Accessing a copy of MRC National Archives material via PDF

Accessing a copy of MRC National Archives material via PDF


NB: If the link isn’t working for you, try this:

Go to this URL:

which is the National Archives Documents Online page

Put this Catalogue reference code into the Search box

FD 23/4553

Select date range 1950-99

that should bring up the page. Then pick up my instructions from there.


Go here:

that is:

The National Archives Documents Online

Description Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS) : papers and journal articles; correspondence and enquiries with MRC replies

Date 1988-1997
Catalogue reference FD 23/4553
Dept Records created or inherited by the Medical Research Council
Division General Records of the Medical Research Committee and Medical Research Council
Series Medical Research Council: Registered Files, Scientific Matters (S Series)
Image contains complete documents usually loaded


Click “Add to shopping” (there will be no charge, so don’t worry)

Click “Check out”

An email address will be requested.

Fill in a working email address.

Click “Proceed with your download”

An auto generated email will be sent to you.

The email you receive will include an order number and the date up until which the file will be available to you. (This was 28 days.)

Beneath the words:

“Your images are now available. If you have not already downloaded them, please go to the download screen at”

There is a clickable link “Download my documents now”.

Click the link which will take you to a PDF URL. The URL will be specific to your email address.

The URL will open a PDF of approximately 30 MB which you can save to your hard drive in the usual way.

The file consists of a 143 page bundle of copies of letters, responses, papers, notes of meeting and handwritten notes.

Some pages, extracts, names and addresses have been redacted and are marked:

SECTION 40 (2)


(Note: This is a very large file which is why National Archives do not supply it via an email attachment. I accept no responsibility for the consequences of anyone being inconsiderate enough to forward the file as an email attachment which may cause considerable problems for some email account holders.)

Related material

28 December 2009

Response from Public Services Development Unit, National Archives 

11 December 2009

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

MRC CFS/ME Research Workshop: Note in text format

MRC CFS/ME Research Workshop: Note in text format


 MRC CFS/ME Research Workshop

19th and 20th November 2009

Heythrop Park Hotel, Oxfordshire


1. Day 1 – Welcome & introduction

1.1 Professor Holgate welcomed the participants to the workshop and introduced the format for the two days.

1.2 An overview was provided of the MRC CFS/ME Expert Group and its Terms of Reference. The aims of the workshop were then detailed as follows:

• Identifying the underlying causes and mechanisms of CFS/ME:

o Clinical phenotypes

o Novel technologies and methodologies to help identify sub-phenotypes

o Molecular and cellular mechanisms of pathogenesis

• Consensus of priority areas.

• Encouraging new researchers into the field.

Areas proposed for consideration during the workshop included:

o capitalising on current issues and UK scientific strengths including national resources e.g. patient cohorts

o new technologies and technological platforms

o partnership models

o other issues

1.3 Professor Holgate referred to the recent interest in the publication of research linking the retrovirus XMRV to CFS/ME, before going on to summarise the key challenges in the field:

• A large clinical need without sufficient underpinning research.

• Low research capacity; need to encourage a multi-disciplinary approach.

• Grant applications that did not meet current competitive standards for funding.

• Absence of a clear pathogenetic mechanism(s) meant it was difficult to develop therapies “targeted” towards specific biological pathways. As a result current therapies tended to be directed towards symptom support rather than prevention or modifying/halting progress of the condition.

• The need to consider both physiological and psychological mechanisms in developing therapeutic approaches.

Page 2

• The difficulties inherent in defining phenotype and sub-phenotypes for a complex condition without good knowledge on underlying mechanisms.

• Knowing how best to incorporate new science and technological platforms.

1.4 Professor Holgate advocated a more collaborative approach to move the field forward.

A recent example of where such an approach had proved successful in increasing research capacity and impact was in respiratory research.

2. Presentations

(Full slide sets for each presentation are available at Annex 1)

2.1 Dr Esther Crawley provided an overview on the epidemiology of CFS/ME and the current research on phenotyping. The role of the British Association of CFS/ME (BACME) and the current specialist services available for patients were explained. The key points raised were as follows:

• Definitions of CFS/ME were important when investigating prevalence of the disease.

• In adults there were at least 3-6 different phenotypes identified to date and there were currently 3 paediatric phenotypes, suggesting the possibility of a stratified or targeted approach to treatment.

• CFS/ME was considered to be a heritable condition, and several latent factors and risk factors had been identified. Further gene/environment interaction studies were needed to understand the mechanisms at play in disease progression.

• BACME – in 2009 the 13 clinical service centres funded by Department of Health in 2004 were merged with the CFS/ME network. It was estimated that there would be 7,000-8,000 new patients/year assessed by the clinical teams.

• There were currently 30 teams contributing to the CFS/ME National Outcomes Database. Assessment data for more than 3,500 patients (adults and children) since summer 2009 had been collated. It was anticipated that this number would increase to 5,000 patients per year.

2.2 Professor Julia Newton presented an overview of the current research into the role of autonomic dysfunction in CFS/ME and briefly explained the research from her laboratory. She discussed the possible upstream and downstream mechanisms of autonomic dysfunction, such as those relating to control of blood pressure and heart rate, as well as treatment options. The key points raised were as follows:

• With regard to autonomic dysfunction in CFS/ME, there were currently problems regarding diagnosis of both CFS/ME itself as well as with the diagnosis of autonomic dysfunction. Further issues remained concerning the reproducibility, insensitivity of detection equipment and data interpretation.

• New assessment tools with increased sensitivity were progressively being made available.

Page 3

• Studies have shown that 50% of CFS/ME patients have neural-mediated hypotension.

• There were overlaps between hypotension in CFS/ME and other diseases e.g. cirrhosis and rheumatoid arthritis.

• A new treatment for patients with hypotension involving repeated daily tilt training was described. 2.3 Professor Jim Horne gave an overview of research into sleep disorders and the role of sleep dysfunction in CFS/ME. The key points raised were as follows:

• Some sleep disorders (eg apnoea/hypopnoea, restless leg syndrome, nocturnal myoclonus) can be manifested as CFS/ME, and it was important to screen for these.

• CFS/ME can produce sleep problems that can rebound back onto CFS/ME. For example, a disruption of the body clock (circadian rhythm), leading to sleeping excessively at the wrong time of day, to cause ‘post-sleep inertia’ (rather like ‘jet-lag’) with symptoms similar to/further aggravating CFS/ME.

• Stabilisation of the circadian rhythm can be helped by: 1) remaining under daylight/ fairly bright indoor light throughout daytime hours, and 2) using melatonin about 2h before bed-time (and avoiding bright light at night).

• Nevertheless, some patients with fairly normal circadian rhythms do take too many naps in the day, thus reducing sleep need at night and causing disrupted, unrefreshing night-time sleep. 2.4 Professor Maria Fitzgerald provided a comprehensive overview of the complex mechanisms and processes involved in pain. The role of pain in CFS/ME was also discussed. She highlighted the importance of pinpointing when pain became chronic. The key points raised were as follows:

• The purpose of pain was primarily defensive and a warning mechanism. However this mechanism could become maladaptive.

• Pain processing occurred at multiple sites. Furthermore, pain mechanisms were complex, combining sensory, motor, autonomic and affective components which could also lead to altered brain function resulting in, for example, anxiety and insomnia. These changes were dependent on individual differences, age, gender and culture.

• It was unclear whether pain in CFS/ME comprised either of peripheral components, altered central nervous system (CNS) processing and altered endogenous factors or a combination of these. In other conditions such as fibromyalgia, both altered CNS processing and altered endogenous factors were a feature of pain. There was also evidence of altered cortical pain processing in the brain.

• Potential causes of pain in CFS/ME may include an increased limbic system involvement, decreased endogenous descending control, enhanced temporal summation, nociceptor sensitisation, genetic determinants and early life experience.

Page 4

• Improved animal models of pain in CFS/ME were needed as a basis for research into underlying mechanisms, as were improved ways of defining and quantifying fatigue.

2.5 Professor Gijs Bleijenberg presented an overview of current research in clinical psychology in CFS/ME and outlined possible future directions in this area. The key points raised were as follows:

• The aetiology of CFS/ME could be divided into multi-factorial predisposing, precipitating and maintaining factors.

• Predisposing factors included neuroendocrine dysfunction; gender; psychiatric illness; high physical activity in adulthood; low physical activity in childhood.

• Precipitating factors included infectious triggers; fatigue; pain; physical inactivity.

• Less was known about perpetuating factors and the key question was how and when did certain factors become perpetuating.

• Current treatments were aimed at symptom management and included cognitive behavioural therapy and graded exercise therapy.

• Neurobiological changes were reported in CFS/ME e.g. changes in patterns of cerebral activity and decreased grey matter volume. However, it was not yet known whether these changes were as a result of the condition or whether they were central to the disease process.

• Possible future directions for research: o Large population based studies to increase insight in the development of CFS/ME.

o Smaller cohort studies of groups at high risk for developing CFS/ME with an emphasis on the development of the maintaining factors.

o Research and mediation analyses of treatment studies; experimental studies to discover mechanisms.

o Studies investigating neurobiological or physiological markers of CFS/ME in relation to treatment effect.

o Early detection of CFS/ME by physicians and promoting healthcare seeking by patients.

2.6 Professor Phil Cowen provided a summary of imaging techniques and studies in CFS/ME and other disorders. The key points raised were as follows:

• Technologies such as PET/SPECT, ligand PET, MRI, MR Spectroscopy and fMRI could be useful tools in helping to understand CFS/ME pathophysiology.

• In some respects, imaging studies of CFS/ME patients have shown similar findings to those using subjects with depression. For example:

o Structural morphometry studies have shown reduced grey matter volume.

Page 5

o Decreased binding of brain 5-HT1A receptors using PET. o Increased neural activation during tasks of working memory. Specifically in CFS/ME patients proton MRS detected an increase in ventricular lactate, which had been postulated as a potential biomarker for CFS/ME, perhaps representing evidence of mitochondrial dysfunction.

• Currently there was an overall lack of understanding of neural correlates of central fatigue in relation to functional brain imaging.

• The current evidence base in the field was unreliable due to the small patient numbers involved and the lack of consistency in experimental design. Increased sample sizes were needed coupled to more robust methodological approaches.

2.7 Professor Chris Ponting discussed new technologies in relation to genetic studies and their potential for use in CFS/ME research. The key points raised were as follows:

• Susceptibility: were viral or other environmental triggers impacting on a vulnerable host? Further study of gene/environmental interactions was needed.

• For successful genome wide association studies (GWAS) large sample numbers from well phenotyped patients were needed.

• It was possible to identify gene variants for low-moderate effects, which may be an issue for CFS/ME. For example a GWAS on height found that 40 genes account for only 5% of heritability.

• It was important to discover biological pathways implicated by genetic studies, as opposed to single abnormalities as these might prove to be more informative.

• Most complex disease associations appear in non-coding regions of the human genome whose mechanisms mostly remain enigmatic.

• There were currently limitations in analysis, storage and interpretation of the large data sets that will be generated in genomics and genetics in the next 5 years.

2.8 Professor Anthony Pinching gave an overview of the possible role of immunity and infection triggers in CFS/ME. The key points raised were as follows:

• Whilst chronic infection has been investigated for many years as a possible pathogenetic mechanism, the balance of evidence now tends to favour persistent immune activation or dysregulation, triggered by infection or other events that have similar impact.

• Patient histories indicate the common triggering role of a wide range of infections, and also provide clues to altered immune function in association with ongoing disease.

• Altered immune factors, e.g. decreased natural killer cell function, Th1-Th2 cell imbalance, elevation of both pro and anti-inflammatory cytokines have been associated in CFS/ME, and may be further elevated two days after exercise or activity.

Page 6

• The relationships between predisposing and perpetuating factors in these changes have yet to be established, but prior genetic and environmental factors are both likely to influence immune responses to infections.

• The recent XMRV retrovirus study had produced interesting results. However the involvement of XMRV remained unproven and the study would need to be replicated using fresh biological samples, different methodologies, other cohorts and disease controls. It would be premature to use tests for this agent in diagnosis, or to initiate treatment studies, until such replication had been achieved.

2.9 Professor Paul Moss discussed the possible role of virology in CFS/ME and presented a review of the current research in this area. The key points raised were as follows:

• Many studies have shown that infection is a strong candidate for triggering CFS/ME.

• Chronic infection was often linked to mood changes.

• CFS/ME had been associated with multiple viruses e.g. herpes viruses (CMV, EBV, HHV-6, HHV-7) as well as parvoviruses, enteroviruses and retroviruses such as XMRV.

• An imbalance between memory and naïve circulating and lymph node T cells has been shown in some studies.

• Small studies had been undertaken to investigate possible novel therapeutic interventions using antiviral approaches, e.g. acyclovir, monoclonal antibodies.

• A model was proposed by which a chronic response to infection might lead to fatigue and lack of exercise which could potentially escalate to a self-reinforcing cycle.

2.9 During the open session, the recent findings implicating a role for the XMRV retrovirus in CFS/ME were discussed. Attendees agreed that it would be important that the XMRV findings were replicated before treatment options could be considered, as well as extending the study to other CFS/ME patient groups in other countries. A consensus should be reached regarding the methodologies to be utilised between different research laboratories while research should be undertaken in well characterised cohorts. Studies in patients that have been recently diagnosed with CFS/ME should also be considered in order to minimise the number of patients with co-morbidities which could produce confounding results.

2.10 During the group discussion Sir Peter Spencer and Dr Charles Shepherd outlined a feasibility study for setting up CFS/ME post mortem and in vivo tissue banks which was being funded jointly by Action for ME and the ME Association. Sir Peter emphasised that the charities in this area were very small compared to other disease-related charities and therefore obtaining funding for large studies was challenging.

2.11 Attendees highlighted that there were potentially many opportunities that could open up research into CFS/ME. For example, little was known about fatigue mechanisms and investigating fatigue in healthy individuals could provide useful clues in understanding the aetiology of CFS/ME.

Page 7

Since anxiety and depression comprised a large part of the symptoms of CFS/ME alongside other symptoms such as pain, the interaction between biological and psychological mechanisms should be explored, particularly as there was scope to investigate anxiety from the perspective of autonomic nervous dysfunction. Another cross-cutting area that could prove fruitful to explore was that of mitochondrial function and energy metabolism.

2.12 In summing up the day’s discussions, Professor Holgate noted the many potential interesting avenues for research. Going forward, the right infrastructure needed to be in place, aided by the adoption of a collaborative approach.

3. Day 2 – Working group discussions

3.1 Participants were divided into three mixed groups for discussions at the beginning of the second day, before reporting back in a plenary session. Each group was asked to identify the research priorities and raise any other issues that they felt had not been addressed thus far during the workshop, as well as the following areas:

o group 1 – current UK strengths and resources

o group 2 – partnership models

o group 3 – new technologies and technological platforms

3.2 The reports from each group highlighted the following points:

Group 1 – Research priorities and UK strengths

UK Strengths

• Existing research cohorts of CFS/ME patients – there were several well characterised cohorts already established including trial cohorts such as PACE.

• Birth cohorts (e.g. “1958” and ALSPAC cohorts which had genetic information) for hypothesis generation. Whilst these were less well characterised it would still be possible to generate results in research studies.

• CFS/ME National Outcomes Database.

• Strong research teams particularly in epidemiology, imaging, gene sequencing, health psychology and non-pharmacological intervention. This was further enhanced by a general willingness to work in multi-disciplinary teams.

Research priorities

• To establish a large cohort with broad case definition identified early in primary care before CFS/ME became established e.g. first presentation following viral illness with fatigue and interference with normal activities. This could be followed up with more intensive phenotyping and obtaining biological samples (including samples for sequencing, metabonomics etc) to identify variables/predictors associated with developing confirmed CFS/ME.

Page 8

In addition to identifying priority groups for intervention studies this would also allow the exploration of the implications of different definitions/cut off points in defining established CFS/ME.

• To identify possible ‘early win’ interventions for phase 2 and early phase 3 clinical trials – e.g. targeted use of cytokines; melatonin for those with sleep problems.

 • To undertake genome-wide association studies (GWAS) to identify the genetic components of CFS/ME and possible new targets for intervention. This would be dependent on the availability of well characterised cohorts. • To develop more comprehensive outcome measures.

• To encourage work across the different existing cohorts (including trial cohorts), e.g. for assessing predictive markers of disease and confirming hypotheses generated in other data sets.

3.3 Group 2 – Research priorities and partnership models

Partnership models

• A co-ordinated, structured, strategic and collaborative research approach would be needed in moving the field forward.

• Exploring the use of other fatigue-related diseases (such as multiple sclerosis and cancer-related fatigue) as control models for CFS/ME, and utilising existing expertise from these areas in the CFS/ME field.

• Establishing a multi-disciplinary group involving not only scientists (e.g. immunologists, fatigue experts, neuroscientists, psychologists and psychiatrists, neurologists and geneticists) but also the clinical networks and health professionals.

• Pharmaceutical industry involvement would be beneficial, perhaps at a later stage. Research priorities

• Databases of patients with CFS/ME characterised according to agreed criteria. Phenotype identification could only progress if linked to good infrastructure with all groups using the same criteria. This could provide benefit not only in replication of studies but also of increasing ‘n’ numbers. It was also essential to collect biological samples from early-stage disease which would have no or minimal confounding factors which occurred with long-term disease. Good clinical diagnosis and standardised measurements and assessments were essential to enable comparisons across data sets. Therefore a collaborative approach with researchers working closely with clinicians and other health professionals would be important.

• Patient reported outcomes and quality of life measures.

• The establishment of tissue banks with samples from well characterised patients and controls.

• Improved definition of fatigue and improved understanding of fatigue mechanisms.

Page 9

• Virology and infection triggers – there was potential for virology to be studied in CFS/ME as part of the complex disease pathogenesis. In addition to continued research in this area it would be important for the XMRV study to be replicated before pursuing this avenue of investigation through to clinical trials.

3.4 Group 3 – Research priorities and new technologies and technological platforms.

New technologies/technological platforms

• Imaging technologies such as fMRI, EEG and MRS and pathological studies using tissue could be utilised for neuroanatomical studies and neurophysiological studies of fatigue.

• Better animal models were needed both of the whole disease and aspects of the disease physiology.

• Genetic studies (GWAS) – needed to be nationally and internationally standardised using well phenotyped samples.

• Improved data collection tools were needed. Research priorities

• Identification of phenotype and phenotypic subgroups. This would require access by researchers to raw data (not prior filtered) for replication studies and different measurable entities for different studies. It would also be important to extend the minimum clinical data currently collected.

• Psycho-physical studies – it was important to continue to undertake small and focussed pathophysiological studies investigating perception, behavioural and physiological response in patients.

• Establishment of longitudinal population-based studies including natural history cohorts which were well focussed and avoided selection bias. Data generated by these studies could be underpinned by co-ordinated tissue collections and repositories.

• Studies on neuro-immunological interactions.

3.5 During the plenary discussion the following points were highlighted:

• It was agreed to be important not to stigmatise the condition, both in terms of treating and caring for those with CFS/ME, and for attracting researchers to the field. CFS/ME was a complex disease that comprised the interaction of different biological, physical and psychological mechanisms. The interactions between these different mechanistic pathways were important and further mechanistic studies needed to be undertaken. Pathways may differ between individual patients and therefore the characterisation of phenotype(s) was paramount. Phenotype characterisation would facilitate the identification of biomarkers. However, given the complexity of the disease and the many current unknowns, this objective was likely to be achieved

Page 10

only in the longer term. The objective for the shorter term should be to increase the current knowledge base of the pathogenesis.

• Clarification of the definition of CFS/ME was important. Without this it would be difficult to encourage new researchers from other fields to undertake research in this area.

• Successful collaborative approaches required each stakeholder to take ownership of a particular area.

3.6 Professor Holgate briefly summarised the workshop outcomes which would be discussed by the CFS/ME Expert Group during the spring of 2010. The Group would prioritise the opportunities that were tractable for both the short and longer term and feed back the outcome to the community.

Professor Holgate thanked all the participants for their valuable contributions and closed the meeting.

For Presentation slides please refer to PDF

Open 3MB PDF on MRC website here Workshop Note and Presentation Slides 

or open here on ME agenda:

    Note of MRC CFS-ME Research Workshop 19-20 Nov 2009[1]


MRC Research workshop: Note and presentations published

MRC Research workshop: Note and presentations published


I have been advised, today, by the MRC’s Corporate Information and Policy Officer, that the note and presentations relating to the November MRC CFS/ME Research workshop are now available on the MRC’s website.

The link for the web page is:

The note can be found at:

As previously agreed with the MRC, they will let me know once the note of the expert group meeting held on 1 March 2010 is also published on the MRC website.


List of participants of the MRC CFS/ME Research Workshop

Note of the MRC CFS/ME Research Workshop 19-20 November 2009

(including copy of the presentations from the meeting at annex 1)

MRC CFS/ME Research Workshop
Issued: 14 May 2010

Primary audience: General public Document Summary

19 and 20 November 2009, Heythrop Park Hotel, Oxfordshire process and timetable.

Open 3MB PDF on MRC website here Workshop Note and Presentation Slides 

or open here on ME agenda:

    Note of MRC CFS-ME Research Workshop 19-20 Nov 2009[1]

Papers circulated prior to the meeting:

CFS/ME Literature review Jan 2004 – June 2009
Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome: Lombardi VC et al. Science. 2009 326:585-9

Documented involvement of viruses in ME/CFS: M Williams 30 December 09

Documented involvement of viruses in ME/CFS by Margaret Williams

One of a series – see notice below


Full text here in MS Word format: Documented involvement of viruses in ME 30.12.09

and at:

Documented involvement of viruses in ME/CFS

by Margaret Williams

30 December 2009

For decades it has been known and shown that viruses play a role in ME/CFS. Now there is evidence of a direct association with a gamma retrovirus – XMRV – that disables the immune system in ME/CFS, thus allowing numerous latent viruses to re-activate, which could result in the protean symptomatology…


Magical Medicine: How to make a disease disappear – Hooper and Williams – Spring 2010

Prior to the publication of the MRC PACE Trial results in the Spring of 2010, Professor Malcolm Hooper and Margaret Williams will be releasing a series of linked documents addressing central flaws in the PACE Trial.

These documents form part of a more substantial document that has the provisional title

Magical Medicine: How to make a disease disappear

This document has a dedicated web page at:

This web page will contain an easily accessible Contents page so that people can surf and then select whatever section (or part of a section) they may wish to look at.

Although he and Margaret Williams have previously addressed some of the issues contained in the substantial document, Professor Hooper thinks it essential for there to be a single, comprehensive narrative of events and information leading up to and involving the PACE Trial.

Magical Medicine: How to make a disease disappear

Professor Malcolm Hooper and Margaret Williams

Spring 2010

Documents already published that form part of the larger PACE Response document:-

1. Interstitial cystitis and CFS (26th August 2009)

2. More evidence of inflammation in ME/CFS (14th November 2009)

3. The role of viruses in ME/CFS // XMRV (21st November 2009)

4. The MRC’s secret files on ME/CFS (10th December 2009)

5. Statements of concern about CBT/GET for the Judicial Review (12th December 2009)

6. Can the MRC PACE Trial be justified? (17th December 2009)

and now this latest one:

7. Documented involvement of viruses in ME/CFS (30th December 2009)

Can the MRC PACE Trial be justified: Margaret Williams 17.12.09

A new article from Margaret Williams:


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

Also available at:


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” ( 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….” ( 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 “Can the MRC PACE Trial be justified: Margaret Williams 17.12.09”

The Elephant in the Room Series Four: DSM-V: What do we know so far?


image | belgianchocolate | creative commons


APA    DSM    DSM-IV    DSM-V    DSM-5   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 Four: DSM-V: What do we know so far?

A copy of this material has been sent to:

Sir Peter Spencer, Heather Walker, Tristana Rodriguez (Action for M.E.); Dr Charles Shepherd, Neil Riley, Tony Britton (ME Association); Jane Colby (The Young ME Sufferers Trust); Mary Jane Willows (AYME); ME Research UK; Simon Lawrence (25% M.E. Group); Trustees Invest in ME; BRAME; RiME; The Countess of Mar; Dr Ellen Goudsmit; Professor Malcolm Hooper. Five documents have been also been provided, including WHO ICD Revision: Content Model Style Guide; WHO ICD Revision: Content Model Blank; WHO ICD Revision: Morbidity Reference Group Discussion paper: ICD-11 rules, conventions and structure available from:

Part One

DSM-V draft proposals

In the UK, the Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association (APA), does not have as much relevance for us as the WHO’s ICD. But the revision of DSM-IV will shape international research and literature in the fields of liaison psychiatry and psychosomatics for many years to come.

Until the APA publishes its alpha draft, we won’t know what the most recent proposals are. But if our corner needs fighting, then according to UK health psychologist, Dr Ellen Goudsmit C.Psychol. FBPsS, we can rely on US psychologists, Jason and Friedberg, to fight our corner for us. Who else might we rely on?

In his commentary Alert to the Research Community—Be Prepared to Weigh in on DSM-V, Psychiatric Times, 3 December, Allen Francis MD, who had chaired the DSM-IV revision Task Force, wrote:

The research community has a central role and a great responsibility in taking advantage of this precious opportunity to carefully review and identify the problems in the DSM-V drafts and to suggest solutions…

Will our own professional advocates – our researchers, clinicians and patient organisations be reviewing and commenting on these draft proposals when they are published, early next year?

According to a PowerPoint presentation delivered Dr B Üstün at the WHO’s September ICD-11 iCAMP meeting:

“ICD will be about 15 thousand Diseases, disorders…”

and will involve

“Between 5000 – 50,000 contributors”

We are just one patient constituency amongst thousands of diseases, disorders and syndromes. But because of the means through which ICD is being revised this time round, there will be opportunity for input from a far wider range of sources into the ICD-11 development process. Again, our interests will need to be effectively represented and it should not be left entirely to the patient community. Our researchers and clinicians will need to be encouraged to input into the ICD revision process, too.

The “H” word

The APA participates with the WHO in the International Advisory Group (AG) for the Revision of ICD-10 Mental and Behavioural Disorders and a DSM-ICD Harmonization Coordination Group.

The DSM-V Task Force and ICD-11 Revision Steering Group 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 forthcoming shift, scheduled for October 2013, to a US modification of ICD-10 (ICD-10 CM*) and the disparity between the proposed ICD-10 CM classifications and the current ICD-10 codings for Postviral fatigue syndrome, (Benign) myalgic encephalomyelitis and chronic fatigue syndrome may account for an apparent lack of interest in the US in the development of ICD-11. But the proposed structure of ICD-11 may have implications for the US patient population, even though the US might not anticipate moving on to ICD-11 for many years.

From the APA’s 10 December press release:

APA will continue to work with the WHO to harmonize the DSM-5 with the mental and behavioral disorders section of the ICD-11. Given the timing of the release of both DSM-5 and ICD-11 in relation to the ICD-10-CM, the APA will also work with the CDC and CMS to propose a structure for the U.S. ICD-10 CM that is reflective of the DSM-5 and ICD-11 harmonization efforts. This will be done prior to the time when the ICD-10-CM revisions are “frozen” for CMS and insurance companies to prepare for the October 1, 2013, adoption.

It was reported, in August (DSM-V Field Trials Set to Begin Elsevier Global Medical News), that the APA planned to launch some field trials for DSM-V in October, with all field trials scheduled for completion by the end of 2010, for a previously anticipated publication date of May 2012.

According to Christopher Lane, author of Shyness: How Normal Behavior Became a Sickness, most of the field trials have yet to begin because the Work Groups can’t agree on their criteria (Psychology Today).

*For current proposals for US modification ICD-10 CM see:   

**Postviral fatigue syndrome and (Benign) myalgic encephalomyelitis are classified in Chapter VI of ICD-10: Volume 2: The Tabular List at G93.3; Chronic fatigue syndrome is indexed at G93.3 in ICD-10: Volume 3: The Alphabetical Index.

See:  (Page 528, top right hand column)


Somatic Distress Disorders

The DSM-V Work Group that has relevance for us is the Work Group for “Somatic Distress Disorders” (aka “Somatic Symptom Disorders”).

This group has responsibility for the revision of the DSM classifications currently listed under “Somatoform Disorders”. The equivalent section in ICD-10 is “Somatoform Disorders” classified in Chapter V: Mental and Behavioural Disorders between codes F45 – F48.0.

Go here:

scroll down to the heading “Related documents” and open Document [6] DSM-IV ICD-10 Classifications

This document sets out how the two classification systems currently correspond for “Somatoform Disorders”. You will also find links in Document [6] for ICD Chapter V classifications for “Somatoform Disorders” codings at F45 – F48.0, and for G93.3 (ICD Chapter VI, the Neurological chapter).

The members of the Somatic Distress Disorders Work Group (SDD WG) are published on the APA’s website here:

This document also includes biosketches and disclosure information for each Work Group member. The group is chaired by Professor Joel E. Dimsdale, MD. The nine members of the DSM-V Somatic Distress Disorders Work Group are:

Arthur J. Barsky, MD*; Francis Creed, MD*; Nancy Frasure-Smith, PhD; Michael R. Irwin, MD; Francis J. Keefe, PhD; Sing Lee, MD; James L. Levenson, MD*; Michael Sharpe, MD*; Lawson R. Wulsin, MD.

DSM-V Task Force member, Javier Escobar, MD, serves as Task Force liaison to the DSM-V Somatic Distress Disorders Work Group and works closely with this group.

Four out of the ten members of the DSM-V Somatic Distress Disorders Work Group (asterisked) were also members of the CISSD Project workgroup; Prof Michael Sharpe served as the CISSD Project’s UK Chair. The CISSD Project’s International Chair was Prof Kurt Kroenke, MD.

We have no information on how closely the ICD Topic Advisory Group for the revision of Mental and Behavioural Disorders (TAG MH) is collaborating with the DSM-V SDD Work Group over the revisions of their respective “Somatoform Disorders” sections. Until the iCAT platform is launched, it is not apparent what changes TAG MH might be proposing for the structure and content of its corresponding Chapter V: F45 – F48.0 codes or to what extent ICD Revision intends that any changes to its own “Somatoform Disorders” will mirror Task Force proposals for DSM-V.

If the DSM-V Task Force were to approve radical changes to its “Somatoform Disorders” category, will ICD Revision still aim for “harmonization”?

Earlier this year, I called publicly on the ME Association to publish an analysis and commentary on the aims, objectives and recommendations of the CISSD Project in the context of the ICD and DSM revision processes and to inform its members, generally, around the forthcoming revisions of these two classification systems, which have been in progress since 2007 and 1999.

To date, apart from trumping Action for M.E. by publishing a summary report on the CISSD Project, provided by Dr Richard Sykes (in response to which the ME Association has expressed no comment or opinion whatsoever), this organisation has done nothing to inform its membership and the wider ME community around the forthcoming ICD revision, or that of DSM.

Nor has the ME Association clarified whether it intends to participate in draft consultations or in the submission of proposals to ICD, and if so, whether its membership will be given an opportunity to inform its position.

I have provided the ME Association board members with key information and documents: not a flicker of interest.

Stephen Ralph, who maintains the ME Action UK website, reports that when he approached Dr Charles Shepherd, recently, to ask what the ME Association was doing in relation to DSM and ICD, Dr Shepherd’s response had been that this was not an issue he had time for or was interested in.

An extraordinary response from an Honorary Medical Adviser given:

  The influential membership of the CISSD Project workgroup and the positions that some of its members now hold on the DSM Task Force and Somatic Distress Disorders Work Group.

•  The potential for review and revision of the current ICD-10 classifications and codings for Postviral fatigue syndrome, (Benign) myalgic encephalomyelitis (both currently classified in Chapter VI at G93.3) and chronic fatigue syndrome (currently indexed in Volume 3 at G93.3, only);

•  The means through which ICD-11 will be developed (the iCAT electronic multi-authoring platform) enabling a wide range of input from many sources;

•  The potential for, and implications of a radical revision of the DSM-IV category currently known as “Somatoform Disorders”;

•  The commitment of ICD and DSM to “harmonization” and congruency between the two systems;

•  The potential for considerably more content to be included in ICD-11 than in previous versions of ICD*.

*See: Key documents, particularly: Content Model Style Guide on the ICD-11 Revision site at: 

The ME Association has adopted and promotes the use of the term “myalgic encephalopathy”. Is this at the root of Dr Shepherd’s disinclination to become drawn into debate around the forthcoming ICD revision, since “myalgic encephalopathy” has no classification or coding within ICD-10, at all?

Given the views expressed by Jane Colby, Executive Director of The Young ME Sufferers Trust, it would be useful if Ms Colby would also set out her organisation’s position in relation to PVFS, ME, CFS in the context of ICD-11.

Part Two

The 10 December APA press release noted that draft changes to the DSM will be posted on the DSM-V website in January 2010 and that comments will be accepted for two months and reviewed by the relevant DSM-V Work Groups in each diagnostic category.

That’s not very long for consultation for a patient community like ours.

A number of patient communities and interest groups have already been engaging for some time with DSM-V Work Groups. For one category (schizophrenia), quite detailed proposals have been made available for discussion and posted online. But for the DSM-V Work Group that has relevance for us – the “Somatic Distress Disorders” aka the “Somatic Symptom Disorders” Work Group, very little has emerged to date, and what has been published is lacking in detail.

What do we know so far?

Since the DSM-V Work Groups were announced in May 2008, each group has published just two progress reports.

The November 2008 report of the Somatic Distress Disorders Work Group can be read here:

The April ’09 progress report of the Work Group can be read here:

Since April, no further updates have been issued by any of the DSM-V Work Groups. So until a draft for DSM revision proposals is released we are forced to glean what we can from journals.

In April ’09, the Somatic Distress Disorders Work Group reported that they were exploring the potential for eliminating criteria such as “medically unexplained symptoms”:

…More controversial is a proposal the group has been examining, which would combine somatization disorder, hypochondriasis, pain disorder and undifferentiated somatoform disorder into one overarching disorder (tentatively entitled, “complex somatic symptom disorder”). The hallmark of this disorder would be somatic symptoms associated with significant distress and disability. In some cases the patient’s response is disproportionate and maladaptive. Our group is exploring the potential for eliminating criteria such as “medically unexplained symptoms” as a marker of this disorder because such considerations are commonly unreliable, divisive between doctor and patient and lead to mind-body dualism…

This was followed, in June, by an Editorial co-authored by DSM-V Work Group Chair, Joel Dimsdale, and fellow Work Group member, Francis Creed, which expanded on the themes in the April ’09 update. This Editorial was published as free access, so at least those without access to journal papers were able to read it – assuming they were aware of it.

The Editorial: “The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report” was published on behalf of the Somatic Symptom Disorders Work Group in the June ’09 issue of the Journal of Psychosomatic Research, for which Francis Creed is a co-editor. Several Letters to the editor in response to this Editorial have been published in the January ’10 edition of this journal, but these are not free access.

Free full text and PDF versions of the June ’09 Editorial here:

The relevant section is “Psychological factor affecting a general medical condition” – towards the end of the document.

Under this section, Dimsdale and Creed wrote 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”, citing 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 full text: 

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 Work Group were proposing, at that point:

…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.

The Editorial 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 recently published Editorial: Is there a better term than “Medically unexplained symptoms”? Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M and White P (Journal of Psychosomatic Research: Volume 68, Issue 1, Pages 5-8 January 2010) discusses the deliberations of the EACLPP study group* on which I have previously reported. The Editorial also includes references to the DSM and ICD revision processes.


References to DSM and ICD revision in:

Is there a better term than “Medically unexplained symptoms”? Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M and White P. J Psychoso Res: Volume 68, Issue 1, Pages 5-8.



The European Association of Consultation Liaison Psychiatry and Psychosomatics (EACLPP) is preparing a document aimed at improving the quality of care received by patients who have “medically unexplained symptoms” or “somatisation” [1]. Part of this document identifies barriers to improved care and it has become apparent that the term “medically unexplained symptoms” is itself a barrier to improved care…

…The authors of this paper met in Manchester in May 2009 to review thoroughly this problem of terminology and make recommendations for a better term….The deliberations of the group form the basis of this paper…


Our priority was to identify a term or terms that would facilitate management – that is it would encourage joint medical psychiatric/psychological assessment and treatment and be acceptable to physicians, patients, psychiatrists and psychologists.

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

Ten criteria were developed in order to judge the value of potential terms which might be used to describe the group of symptoms currently referred to as medically unexplained symptoms. Obviously, this list of criteria does not claim to be exhaustive, but we believe that it captures the most important aspects. The criteria are that the term:

1. is acceptable to patients
2. is acceptable and usable by doctors and other health care professionals, making it likely that they will use it in daily practice.
3. does not reinforce unhelpful dualistic thinking.
4. can be used readily in patients who also have pathologically established disease
5. can be adequate as a stand alone diagnosis
6. has a clear core theoretical concept
7. will facilitate the possibility of multi-disciplinary (medical and psychological) treatment
8. has similar meaning in different cultures
9. is neutral with regard to aetiology and pathology
10. has a satisfactory acronym.

Terms suggested as alternatives for “medically unexplained symptoms”

The group reviewed terms which are used currently or have been proposed for the future. An extensive list was abbreviated to the following 8 terms or categories: The terms we reviewed were:

1. Medically unexplained symptoms or medically unexplained physical symptoms
2. Functional disorder or functional somatic syndromes
3. Bodily distress syndrome/disorder or bodily stress syndrome/disorder
4. Somatic symptom disorder
5. Psychophysical / psychophysiological disorder
6. Psychosomatic disorder
7. Symptom defined illness or syndrome
8. Somatoform disorder


Implications for DSM-V and ICD-11

There is overlap between the discussion reported here and the discussion currently under way towards the creation of DSM-V. Two of the authors (FC, MS) are also members of the working group on Somatic Distress Disorders of the American Psychiatric Association (APA), which is proposing a new classification to replace the DSM-IV “somatoform” and related disorders. In this working group, similar concerns about the use of the term and concept of “medically unexplained symptoms” have been raised [12]. The current suggestion by the DSM-V work group to use the term “Complex somatic symptom disorder” must be seen as step in a process and not as a final proposal. Unfortunately this term does not appear to meet many of the criteria listed above.


One major problem for reforming the classification relates to the fact that the DSM system includes only “mental” disorders whereas what we have described above is the necessity of not trying to force these disorders into either a “mental” or “physical” classification. The ICD-10 system has a similar problem as it has mental disorders separated from the rest of medical disorders.

The solution of “interface disorders”, suggested by DSM IV, is a compromise but it is unsatisfactory as it is based on the dualistic separation of organic and psychological disorders and prevents the integration of the disorders with which we are concerned here. This lack of integration affects the ICD classification also. For example functional somatic syndromes (e.g. irritable bowel syndrome) would be classified within the “physical” classification of ICD or Axis III in DSM (gastrointestinal disorders) and omitted from the mental and behavioural chapter entirely [13].

[End Extract]

Peter Denton White, Professor of Psychological Medicine, Barts and the London Medical School, has had quite a lot to say, recently, about ICD-10. In December 2008, Prof White gave a workshop presentation titled “Chronic fatigue syndrome: neurological, psychological or both?” at a Neurology and Psychiatry SpRs Teaching Weekend held in Oxford and sponsored by UCB Pharma and Biogen Idec UK. In the workshop handbook, Prof White talks about the taxonomy of CFS as being “a mess”.

Prof White writes:

My personal view is that it is high time that all mental health disorders and neurological diseases affecting the brain were classified within the same chapter, simply called diseases/disorders of the brain and nervous system.

(Workshop Handbook: Prof Peter White: Pages 46 – 50  )

During his Royal Society of Medicine “CFS” Conference presentation, in April 2008, Prof White had told the conference:

…So ICD-10 is not helpful and I would not suggest, as clinicians, you use ICD-10 criteria. They really need sorting out; and they will be in due course, God willing.

See: Document [5] Extract, transcript, RSM CFS Conference presentation: Prof Peter White discouraging Conference from using ICD:  

In the paper: “Risk markers for both chronic fatigue and irritable bowel syndromes: a prospective case-control study of primary care” Psychological Medicine, Nov 2009, co-authored by Prof White, the authors propose a change to current ICD-10 codings ( ).

In the section “Implications for Further Research” the authors state that because the paper finds, “These data also suggest that fatigue syndromes are heterogeneous (Vollmer-Conna et al. 2006), and that CFS/ME and PVFS should be considered as separate conditions, with CFS/ME having more in common with IBS than PVFS does (Aggarwal et al. 2006). This requires revision of the ICD-10 taxonomy, which classifies PVFS with ME (WHO, 1992).”

According to DSM-V Task Force member, Javier Escobar, who works closely with the Somatic Distress Disorders Work Group, the so-called “Functional Somatic Syndromes (FSS)”, or “Medically Unexplained Symptoms (MUS)” include a long list of medical conditions:

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, Total allergy syndrome [1]

Unexplained Physical Symptoms What’s a Psychiatrist to Do? Humberto Marin, MD and Javier I. Escobar, MD,  Psychiatric Times. Vol. 25 No. 9, 01 August 2008


Over the past four or five years, dozens of journal reviews, papers and editorials have been published to inform the DSM revision process (with a very few papers specifically ICD-centric). Research planning conferences, symposia and monographs have further generated dialogue within the field around the taxonomy of the so-called “somatoform disorders” – it’s been quite an industry for liaison psychiatry and psychosomatics.

The CISSD Project, initiated in 2002 by Dr Richard Sykes, PhD, and administered by Action for M.E., between 2003 and 2007, is one project that has fed into both the DSM and the ICD revisions. Dr Sykes describes his project’s objective “to stimulate a multidisciplinary dialogue about the taxonomy of somatoform disorders and the medical diagnoses of functional somatic syndromes (e.g., irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia)” and that the three CISSD Project workshops “brought together American and European experts to further consider the key questions and potential changes to be addressed in any revision of the Somatoform Disorders category, with the explicit aim of informing the development of DSM–V.”

The members of the CISSD Project workgroup were drawn almost exclusively from the fields of liaison psychiatry and psychosomatics. There were no patient organisation representatives on board and the only patient rep had co-authored a book on CFS with Prof Michael Sharpe, the project’s UK Chair.  Little wonder that Action for M.E. sought to keep a lid on this project for so long.

Understand that this unofficial project, initiated by Dr Richard Sykes and administered by Action for M.E. as part of the “merger” deal between Action for M.E. and Westcare UK, in mid 2002, does not have the authority of either the WHO or the APA, but that a number of influential CISSD Project workgroup members now serve on DSM-V Task Force and DSM-V Work Group committees – including Sharpe, Creed, Barsky, Levenson, Escobar and Dimsdale.

The first two tranches of funding paid to Dr Sykes for his co-ordination of the CISSD Project (£24,000 and £18,750) had been recorded in Action for M.E.’s year end accounts for 2006, and 2007, as a grant administered for the WHO Somatisation Project This grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its re-categorisation as a physical illness.”

But the review paper resulting out of the CISSD Project, published by project leads Kroenke K, Sharpe M, Sykes R: Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations. Psychosomatics 2007 Jul-Aug;48(4):277-285, was DSM-centric.

(Full free text:  )

A single reference to ICD appears in Table 2: Recommendations for Revising Somatoform Disorders in DSM-V at point VII. under “Other Recommendations: 3. The APA and WHO should work together to make DSM-V and ICD-11 compatible with respect to the categories, disorders, and criteria for mental disorders…”

Chronic fatigue syndrome is mentioned twice: in the introduction, and under Key Questions 5. How should functional somatic syndromes be classified? These so-called functional somatic syndromes include conditions such as irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, interstitial cystitis, and others. These syndromes are overlapping and frequently coexist…”

There is no reference in the review to Postviral fatigue syndrome or to (Benign) myalgic encephalomyelitis; the paper does not set out what its authors understand by the term “chronic fatigue syndrome” or their understanding of its relationship to Postviral fatigue syndrome or to (Benign) myalgic encephalomyelitis nor does it set out existing ICD-10 classifications and codings for any of these terms.

The paper fails to acknowledge that in ICD-10, Chronic fatigue syndrome is indexed in Volume 3 at G93.3. In fact, Dr Sykes had undertaken his project under the misapprehension that Chronic fatigue syndrome was not included anywhere in ICD-10 – a point he has since conceded.

The review paper has informed both the DSM and ICD revision processes and its recommendations have been submitted to the ICD Update and Revision Platform by Dr Sykes, in 2008, on behalf of the CISSD Project workgroup.

Note that the journal review paper, published in Psychosomatics 2007 Jul-Aug, by CISSD Project leads, Kroenke K, Sharpe M and Sykes R, is an entirely different document to the “CISSD Project and CFS/ME Report on the CISSD Project for Action for ME” which was an internal document handed to the project administrators, Action for M.E., in December 2007, by project co-ordinator, Dr Sykes, and not intended for publication. A copy of Dr Sykes’ Report for Action for M.E. and an accompanying “Co-ordinator’s Report” are now in the public domain.

(  )
(  )

In addition to its 13 Work Groups, DSM-V also uses external advisers whose names are not being disclosed. ICD Revision Topic Advisory Group Managing Editors (TAGMEs) will be networking for external peer reviewers for revision proposals and content.

(  )

One of the questions I raised, in October, with the WHO’s Dr Robert Jakob [Medical Officer (ICD) Classifications, Terminologies, and Standards] is whether those acting as independent peer reviewers to the various TAGs, and also external sources from whom input/opinion might otherwise be being sought, would be identified via iCAT to users outside the ICD revision process; whether the evaluations undertaken by external reviewers and input from external sources would be visible to those outside ICD revision and whether COI disclosures would be required of external reviewers.


This represents about all that is available to me at the moment on the deliberations of the DSM-V Work Group – other than the Letters to the editor in response to “The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report”.

According to the APA, we can anticipate DSM-V draft proposals published in the New Year.

ICD-11 Alpha Draft is timelined for May 2010. We have no ETA yet for the launch of iCAT, the wiki-like electronic authoring platform through which ICD-11 will be developed so it is not yet evident what content will form the “Start-up list” for those categories of relevance to us.*

*Each Chapter of ICD-11 will have a “Start-up list” which, according to ICD Revision documentation, will include current ICD-10 content, input from ICD clinical modifications and WHO affiliate organisations, proposals already received via the ICD Update and Revision Platform.


For information, commentary and updates on the development of ICD-11 and DSM-V on ME agenda:

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 WHO’s ICD-11 Revision Google site:

For ICD Revision iCamp YouTube videos:

For DSM-V pages on the website of the American Psychiatric Association (APA):

Psychiatric Times for updates, articles and commentary on DSM-V:

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


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?”

(; 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)

The Elephant in the Room Series Four: New papers in Jan 10 Journal of Psychosomatic Research

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 Four:

New papers in the January 2010 edition of the Journal of Psychosomatic Research


For DSM-V watchers (and I’m sure I can’t be the only one) – new papers in the January 2010 edition of the Journal of Psychosomatic Research.

In Letter to the editor: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV-A preliminary report: Joel E. Dimsdale, Francis H. Creed, the authors write:

“We are pleased that the authors of these letters appreciate our efforts to be open regarding the proposed changes to the diagnostic criteria of the Somatoform Disorders chapter of DSM-V.”

Note there have been no updates published by the APA DSM-V revision Task Force since the March 09 Task Force report and April 09 updates from the 13 DSM-V Work Groups.

So much for APA (American Psychiatric Association) transparency!


Journal of Psychosomatic Research, Editors: Creed F, Shapiro C.

Current Issue

January 2010 | Vol. 68, No. 1


Painting the picture of distressing somatic symptoms
Winfried Rief
pages 1-3

Is there a better term than “Medically unexplained symptoms”?, 19 October 2009
Francis Creed, Elspeth Guthrie, Per Fink, Peter Henningsen, Winfried Rief, Michael Sharpe, Peter White
pages 5-8

Original articles

Causal symptom attributions in somatoform disorder and chronic pain, 05 October 2009
Wolfgang Hiller, Marian Cebulla, Hans-Jürgen Korn, Rolf Leibbrand, Bodo Röers, Paul Nilges
pages 9-19

Letters to the editor

The proposed diagnosis of somatic symptom disorders in DSM-V: Two steps forward and one step backward?
Andreas Schröder, Per Fink
pages 95-96

The concept of comorbidity in somatoform disorder-a DSM-V alternative for the DSM-IV classification of Somatoform disorder
Christina M. van der Feltz-Cornelis, Anton J.L.M. van Balkom
pages 97-99

The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV-A preliminary report, 04 November 2009
Joel E. Dimsdale, Francis H. Creed
pages 99-100


New documents on the WHO ICD-11 Revision Google site:


Summary of iCAMP and TAG [Topic Advisory Group] Meetings
Draft Summary and Action items

(Uploaded 2 December)


iCamp Content Model Style – Updated Style Guide from Discussions

WHO House Style

WHO House Style Spelling List

(All three uploaded on 30 October)

There are also some PowerPoint presentations at the page above.


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 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:

Minutes of the MRC CFS/ME Expert Group 2nd meeting: 30 March 2009

Minutes of the MRC CFS/ME Expert Group 2nd meeting held on 30 March 2009

WordPress Shortlink for this post:

Open PDF file here:   Minutes of MRC CFSME Expert Group 2nd meeting – 30th March 2009

This locked PDF is also available on the MRC website at:

TEXT version

MRC CFS/ME Expert Group

Minutes of the 2nd meeting held on 30th March 2009

MRC Head Office, 20 Park Crescent, London W1B 1AL

In attendance:

Professor Stephen Holgate (University of Southampton – Chairman)
Professor Philip Cowen (University of Oxford)
Dr Esther Crawley (University of Bristol)
Professor Malcolm Jackson (University of Liverpool)
Dr Jonathan Kerr (St George’s University of London)
Professor lan 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)

Dr Rob Buckle
Dr Joanna Latimer (Secretariat)

1. Chairman’s welcome, introduction & apologies

1.1 The Chairman welcomed members to the second meeting of the Group and thanked everyone for giving up their valuable time to attend. Introductions were made round the table.

1.2 Apologies had been received from Professor Jill Belch (University of Dundee) and Professor Peter White (Bart’s and the London School of Medicine and Dentistry).

2. Minutes of the 1st Meeting held on 15th December 2008

2.1 Members approved the minutes from the previous meeting as an accurate record, though agreed that an addendum be included that outlined the work of the CFS/ME Clinical and Research Network Collaborative as well as the work of the National Observatory.

3. Terms of Reference

3.1 The Chairman referred members to the revised draft Terms of Reference. Following discussions, the Group agreed that the Terms of Reference needed to incorporate encouragement of new researchers into the field. It was agreed that revised Terms of Reference would be circulated to members for final approval.

4. Update on work of CFS/ME charities

4.1 Sir Peter Spencer and Dr Charles Shepherd updated the Group on progress with the feasibility study for a Post-Mortem Tissue Bank for CFS/ME.

4.2 It was agreed that determining a good clinical phenotype would be key for the success of the proposed bank. This could be aided through setting up longitudinal and natural history studies in addition to a tissue archive. This would be an important area for discussion for the workshop.

5. Discussion on a CFS/ME research workshop

5.1 The Group discussed the format for the research workshop. It was agreed that this would be a small working event attended by CFS/ME researchers, researchers from outside the field and representatives from charities involved in research.

5.2 An overview of current research should be included, and this would be best achieved by providing the participants with a literature review. A two day meeting, from lunchtime to lunchtime, would allow sufficient time for an overview of research in key thematic areas to be presented through short talks, followed by a second day of discussions by small groups tasked with identifying research priorities.

5.3 An integrative approach would be important in helping to understand the causes of CFS/ME, and this should be reflected in the thematic areas highlighted for the short talks. Thefollowing areas were identified for these presentations:

. phenotyping and epidemiology
. autonomic dysfunction including cardiovascular dysfunction
. fatigue
. sleep
. pain
. neuropsychology
. imaging
. new technologies and technological platforms
. neuroendocrinology
. immune dysregulation
. infection

5.4 It would be important to try and bring in leading experts in the above areas from outside of the CFS/ME field, and ideally some of the talks should be presented by such experts. Opening the workshop  up to researchers from other fields should provide an opportunity for new expertise to be bought in and could, in time, lead to increased engagement from the outside community.

5.5 Areas for consideration by the discussion groups on the second day of the workshop should include the following questions:

. how can capacity in the field be increased?
. where are the UK strengths, in the context of international competition, and how could relevant links be forged?
. are there new technologies and/or technological platforms that could help move the field forward?

6. Date of next meeting

Members agreed that the next meeting should be held following the workshop. The secretariat would circulate potential dates in due course.

7. Close

The Chairman thanked members once again for their valuable contributions and closed the meeting.