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]

Shortlink: http://wp.me/p5foE-35V

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:

http://www.nice.org.uk/registration/index.jsp?action=registration

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

Regards

Carla Springl

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

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

Web: http://nice.org.uk

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:

http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=1283&Itemid=223

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

http://www.meassociation.org.uk

ENDS

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: http://www.meassociation.org.uk

ENDS

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 maryjane@ayme.org.uk 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

WORKSHOPS

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:

Breathworks
http://breathworks-mindfulness.org.uk/the-breathworks-foundation.html

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
http://www.karnacbooks.com/Author.asp?AID=13770

Alex Westcombe
North Bristol NHS Clinical Psychologist
http://www.nbt.nhs.uk/services/criticalcare/painmanagement/who_is_who.htm

Michelle Selby
OT lead Dorset CFS Service (formerly “The Wareham Clinic”); Clinical Co-ordinator, Southampton CFS/ME Clinic
http://www.meactionuk.org.uk/RiME_CFSME_Centres_Condemned.html

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
http://www.informaworld.com/index/T32L42TTQ9N74DN3.pdf

Invest in ME Decline BACME Invitation

Invest in ME Decline BACME Invitation

Shortlink: http://wp.me/p5foE-2Z2

Invest in ME has issued a statement around its decision to decline an invitation to become a member of BACME (British Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis).

For Invest in ME’s position statement on the proposed Bath/Bristol pilot study to investigate how to recruit to a randomised controlled trial looking at the Phil Parker Lightning Process and specialist medical care in CFS/ME in children as young as eight, go here Invest in ME March 2010 Newsletter.

 

Invest in ME Decline BACME Invitation

Invest in ME recently received an invitation from the British Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (BACME) inviting us to apply to become an executive member of that organisation.

BACME is chaired by consultant paediatrician Dr Esther Crawley – who was recently awarded a grant to do a clinical trial on the Lightning process (funded with £164,000 from the Linbury Trust and the Ashden Trust) – a business which assumes that no matter what is causing an ME patient’s illness it will help cure a patient from them.

With cases of people with ME being made worse from this business the recent Norwegian film by Paal Winsents (“Make Me Well”) illustrates the danger of people with no medical training attempting to treat a neurological illness such as ME. A telling quote from a LP practitioner in that film says it all –

“…. It does not matter how it started. Sometimes people had a bacterial infection, sometimes people had a viral infection. It does not matter how it started. The Lightning Process works equally well”.

Such uninformed, non-clinical and dangerous statements being used by people promoting businesses without any medical training, at a time when the need for more funding for biomedical research into ME and the evidence to support that funding requirement is overwhelming, is symptomatic of the problems on a non-strategic, non-biomedical approach to diagnosing and treating people with ME. Meanwhile ME patients and their families have to witness this absurd waste of money.

Dr. Crawley’s views on ME aren’t those of Invest in ME’s and we have serious concerns about her position as chair of an organisation such as this.

The Assistant Chair of BACME is Alison Wearden, who is Reader in Psychology at the University of Manchester, Chair Elect of British Psychological Society’s Division of Health Psychology and Associate Editor of British Journal of Health Psychology and whose studies include “Illness cognitions and diabetes – how the beliefs which patients hold about their diabetes impact on their attempts to manage it, their adjustment and well-being”. Wearden was head of the FINE trials (click here) – a waste of taxpayers’ money which resulted in nothing of value for people with ME.

BACME has a constitution to which members have to sign up. In this constitution, which BACME requires its members to support, it includes the following-

2.2 Objectives

2.2.1 To champion evidence-based approaches to the treatment of CFS/ME, such as those provided in the NICE guidelines

2.2.4 To support the delivery of services and to enable services to maintain standards of care in the treatment of CFS/ME as set out in the NICE guidelines

4. The Executive

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

Invest in ME rejected the NICE Guidelines and therefore cannot agree to endorse a constitution which lists among other things the above objectives.

Invest in ME endorse the critique set out by Twisk FNM, Maes M. in their review of CBT/GET in which they state

“So, it can be concluded that the efficacy claim for CBT/GET is false. But what is more important, is the fact that numerous studies support the thesis that exertion, and thus GET, can physically harm the majority of the ME/CFS patients.

This assertion is confirmed by the outcomes of two large patient surveys in the UK and Norway, and two smaller surveys in Scotland and the Netherlands.”

(A review on Cognitive Behavorial Therapy (CBT) and Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not evidence based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinol Lett. 2009 Aug 26;30(3):284-299.) click here

The NICE guidelines need complete revision* as their current version is far from evidence-based.

The NICE guidelines have been shown to be ineffectual, biased, unusable, with ME patients eventually taking NICE to a judicial review.

For an organisation to support NICE, and require members to abide by them, let alone “champion” them illustrates a flawed and damaging basis for any claim to represent people with ME and their families. Such an organisation is likely to continue to force a continuing approach of going round in circles, obfuscating the true requirements for ME patients and achieving little of real value for people with ME and their families.

With BACME maintaining its present structure, current chairman and constitution then Invest in ME will decline any offer to apply for membership of this organisation.

It would be unethical of Invest in ME to sign up to such a constitution and Invest in ME’s aim remains to find ways other than those set out in the NICE guidelines to treat patients diagnosed with ME according to the Canadian Clinical Consensus guidelines.

Further Reading: (links provided by Invest in ME)

Magical Medicine: How to Make a Disease Disappear – click here

Lightning Process – The Falsehood of Magical Medicine – IiME Newsletter March 2010 – click here

Can the MRC PACE Trial be justified? – click here

Wessely’s Way: Rhetoric or reason? – click here

Invest in ME – Communications with the UK Chief Medical Officer – click here

Two responses around XMRV: Prof Simon Wessely; Dept of Health

Two responses around XMRV: Prof Simon Wessely; Dept of Health

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

Two users of the Whittemore Peterson Institute Facebook site have kindly given permission for the following responses to be reproduced here, on ME agenda.

Update: The response from Professor Simon Wessely following an enquiry by a member of the public has been removed since permission for publication and the terms under which Professor Wessely’s response might be republished had not been discussed.  A copy of the response was also published by me via Co-Cure together with the response from the Department of Health.  This is also being removed.

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Whittemore Peterson Institute on Facebook

Heath reported on 12 November that he wrote to the Department of Health.  The DoH response was:

Thank you for your email of 28 October to the Department of Health about xenotropic murine leukemia virus-related virus and chronic fatigue syndrome/myalgic encephalopathy (CFS/ME).

The Department of Health agrees with the World Health Organization’s classification of CFS/ME as a neurological condition of unknown cause. The Department also agrees that CFS/ME is a genuine and disabling illness and can have a profound effect on those living with the condition. That is why research breakthroughs such as the one outlined in your email, are so important to developing the knowledge base.

The National Institute for Health and Clinical Excellence (NICE) clinical guidelines are updated as needed so that recommendations take into account important new evidence. However, as I hope you will appreciate, as NICE is an independent body, the time-frame for revising guidance and the evidence it uses are matters entirely for NICE. You may therefore wish to raise this issue directly with NICE’s Chief Executive, Andrew Dillon, at the following address:

NICE
MidCity Place
71 High Holborn
London WC1V 6NA

I think it also helpful to emphasise that NICE clinical guidelines are just that – guidelines for healthcare professionals use in conjunction with their clinical judgement and based on an individual assessment of each patient’s needs. The guideline recognises that there is no one form of treatment to suit every patient and it does not force patients into treatments they do not want.

The guideline emphasises a collaborative relationship between clinician and patient, that treatment and care should take into account personal needs and preferences, and that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme.

Cognitive Behavioural Therapy is a rehabilitative approach designed to modify the way patients think and behave about their illness and so improve physical symptoms. In common with other illnesses and conditions where it has been successfully used such as chronic pain, cancer, heart disease and diabetes, its use does not imply that the cause of the illness is psychological.

The Department feels that it is not helpful to differentiate between biomedical and psychosocial treatments as, based on clinical evidence that is currently available, patients are best served by a holistic approach.

You also comment on the paucity of bio-medical research. I know that many of the Department’s stakeholders see biomedical research as the key to developing new treatments and the Department appreciates the concern about a lack of biomedical research in this area.

As you may know, the main agency through which the Government supports medical and clinical research is the Medical Research Council (MRC). The MRC is wholly independent in its choice of which research to support and it does not generally earmark funds for particular topics. It maintains a rigorous decision making process and only funds research that is likely to make a significant contribution to knowledge and is a good use of taxpayers’ money. Decisions to support proposals are taken on the grounds of scientific quality and whether the research proposed would be likely to inform the knowledge base. There is certainly no bias, and the Department knows that the MRC remains committed to funding scientific research in all aspects of CFS/ME.

The Department understands that the MRC continues to attract a small number of proposals for biomedical research. The problem is that there appears to be a shortage of good and innovative ideas within the scientific community itself. This is something the Department knows that the CFS/ME community and the MRC are aware of, and the MRC have endeavoured to address this by engaging with patient groups to encourage high quality research proposals. The MRC continues to acknowledge the importance of research into CFS/ME, and it is difficult to see what more the MRC could do without lowering the quality threshold.

I hope this reply is helpful.

Yours sincerely,

Priya Bassan
Department of Health

Related information:

Source: ME Research UK

http://www.meresearch.org.uk/information/publications/casetoanswer.html

The Medical Research Council: a case to answer?

[…]

CFS/ME projects currently funded by the MRC
(Sources: MRC website; Hansard, written answers)

•Two large clinical trials of new approaches to treating CFS/ME:
          PACE (Pacing, Activity and Cognitive Behaviour Therapy: a Randomised Evaluation, £2,076,363) [Prof. PD White, Psychological Medicine, Queen Mary and Westfield College]
          FINE (Fatigue Intervention by Nurses Evaluation, £824,129) [Dr AJ Wearden, Psychological Science, Uni. of Manchester]

•A preliminary epidemiological project to test the feasibility of identifying the risk factors for persistent symptoms of fatigue and abdominal and widespread pain (£118,263) [Prof. F Creed, Psychological Medicine, University of Manchester]

•An epidemiological study to assess ethnic variations of the prevalence of a CFS-like illness, associations with potential risk factors, and coping behaviours (£162,145) [Prof. K Bhui, Cultural Psychiatry and Epidemiolgy, Queen Mary and Westfield College]

•Indirect support through a trial exploring the management of patients with persistent unexplained symptoms [Specifics unknown]

•One project was mentioned in Hansard (12th June 2008) but is not on the MRC website: General and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes (£367,000) [Dr C Clark, Centre for Psychiatry, Barts and The London School of Medicine]

 

Table. Unfunded applications to the MRC between 2002 and 2008

Time-frame   (number of applications)   CFS/ME subject area

2002 to 2005 (11 total) Neurophysiology of fatigue; Population-based/epidemiological studies (4 applications); Neurotransmitters and stress; Neuroimaging; Clinical and laboratory characterisation physiology/diagnosis); Dietary intervention — RCT; Facilitated self-help — RCT; Psychosocial and genetic factors in young people

2005 to 2006 (12 total) Pathophysiology, including studies regarding genetics/biomarkers, immunology and neuroimaging (7 applications); Population-based/epidemiological studies (3); Primary care study; Experimental medicine study

2006 to April 2007 (7 total) Cognitive outcomes in children — pathophysiology; Epidemiological studies — epidemiology; Biomarkers; Pathophysiology (2 applications); Molecular pathogenesis — pathophysiology; Molecular and genetic characterisation — pathophysiology; Neuroimaging — pathophysiology

May 2007 to June 2008 (3 total) Biomarkers — pathophysiology; Management and treatment — intervention; Management and treatment — observational study

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

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

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

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

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

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

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

 

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

PDF: CFS/ME Expert group membership

Term of Reference can be opened in PDF format here:

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

or go to MRC site for full article and files:

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis 

( http://www.mrc.ac.uk/Ourresearch/ResearchFocus/CFSME/index.htm )

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

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

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

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

Professor Stephen Holgate – University of Southampton – Chairman

Professor Jill Belch – University of Dundee

Dr Esther Crawley – University of Bristol

Professor Philip Cowen – University of Oxford

Professor Malcolm Jackson – University of Liverpool

Dr Jonathan Kerr – St George’s University of London

Professor Ian Kimber – University of Manchester

Professor Hugh Perry – University of Southampton

Dr Derek Pheby – National CFS/ME Observatory

Professor Anthony Pinching – Peninsula Medical School

Dr Charles Shepherd – ME Association

Sir Peter Spencer – Action for ME

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

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

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

Terms of reference

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

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

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

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

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

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

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

Click here to read full MRC information 

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

Elephant70

Image | belgianchocolate | Creative Commons

Keywords

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

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

Update:

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

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0909b&L=co-cure&T=0&F=&S=&P=3193

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

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0908a&L=co-cure&T=0&F=&S=&P=2204

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

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BBC Radio 4

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

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

http://www.bbc.co.uk/programmes/b00lbn9y#synopsis

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

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

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

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

http://www.bbc.co.uk/iplayer/episode/b00lbn9y/Thinking_Allowed_01_07_2009/

Thinking Allowed – Wed, 01 Jul 2009

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

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

For more on Monica Greco see:

http://www.crassh.cam.ac.uk/page/361/greco.htm

Monica Greco (Goldsmiths, University of London)

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

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

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

See also:

Centre for Research in the Arts, Social Sciences and Humanities

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

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

Event programme

http://www.crassh.cam.ac.uk/events/612/programme/

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

http://tinyurl.com/DSMSDDWGApril09

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

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

The Editorial:

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

Free access to full text and PDF versions here:  http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

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

Free access to full paper at:  http://ajp.psychiatryonline.org/cgi/content/full/162/5/847

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

The conceptual framework the Somatic Symptom Disorders Work Group currently proposes “will allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome”.

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

The current use of the diagnosis “Psychological Factors Affecting Medical Condition” in DSM-IV is set out here:  http://www.behavenet.com/capsules/disorders/psyfactorsmedcon.htm
  

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

A copy of the MUS Study Group working draft, which is still out for consultation, can be downloaded here:  http://www.eaclpp.org/documents/Patientswithmedicallyunexplainedsymptomsandsomatisation.doc

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

https://meagenda.wordpress.com/2009/05/18/the-elephant-in-the-room-series-two-more-on-mups/

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

Classifications

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

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

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

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

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

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

Fibromyalgia is currently classified in ICD-10 under:

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

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

—————————

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

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

http://www.psych.org/MainMenu/Research/DSMIV/DSMV/MeettheTaskForce/JavierEscobarMDMSc.aspx

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

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

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

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

(Free access to full paper here: http://www.psychiatrictimes.com/display/article/10168/1171223 )

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

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

and that:

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

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

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

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

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

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

—————————

Related links:

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

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

DSM-V: The Future Manual:

http://www.psych.org/MainMenu/Research/DSMIV/DSMV.aspx

DSM Revision Activities:

http://www.psych.org/MainMenu/Research/DSMIV/DSMV/DSMRevisionActivities.aspx

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

http://www.psych.org/MainMenu/Research/DSMIV/DSMV/WorkGroups/SomaticDistress.aspx

Make a Suggestion:

http://www.psych.org/MainMenu/Research/DSMIV/DSMV/MakeaSuggestion.aspx

 

WHO ICD revision:

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

http://www.who.int/classifications/icd/RSG/en/index.html

ICD Update and Revision Platform Entry Page:

https://extranet.who.int/icdrevision/nr/login.aspx?ReturnUrl=%2ficdrevision%2fdefault.aspx

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

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

Statement from Invest in ME

6 July 2009

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

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

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

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

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

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

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

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

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

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

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

http://www.investinme.org/Article-315%20PM%20July%202009.htm

PDF here

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

5 July 2009

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

Dear Mr. Brown,

In March of this year an e-petition was raised (http://petitions.number10.gov.uk/AttendIiME2009/#detail ) asking the “Minister of Health, Medical Research Council delegates and the Chief Medical Officer to attend the INVEST in ME Conference 29th May 2009 London”. The petition was raised in March 2009 to allow enough time for the question to be raised to the relevant parties before the conference date of 29th May 2009.

On 1st July 2009 (over three months after the petition was raised and two months after the petition was closed) your office replied (http://www.number10.gov.uk/Page19853 ).

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

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

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

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

Your office states that

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

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

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

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

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

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

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

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

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

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

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

Your reply states that –

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yours Sincerely,

The Chairman and Trustees of Invest in ME

Invest in ME
Registered UK Charity Nr. 1114035

www.investinme.org

Journal “FATIGUE”: What’s in a name (Co-Cure)

Read comments around this issue here:

http://cfsknowledgecenter.ning.com/profiles/blogs/the-journal-fatigue

http://cfsknowledgecenter.ning.com/profiles/blogs/a-journal-called-fatigue

http://cfsknowledgecenter.ning.com/profiles/blogs/take-two-on-the-journal-called

http://oslersweb.com/blog.htm?post=597066

 

Over the past few days, I’ve received several emails expressing discomfort for what is perceived as my “harsh”  criticism of those behind the launch of the “FATIGUE” journal.

“MUPS” services are being commissioned specifically to minimise investigations and reduce the number of referrals to secondary care specialism.  (See NHS documents appended)

This is one reason why launching a journal simply called “FATIGUE” has angered so many of us, especially within the UK, where the majority of us receive socialized medical care.

When the US is looking for models of service provision, it is likely they will look towards UK “CFS” services and UK models of management and “rehabilitation” – King’s College London (Wessely, Chalder), Bart’s (Peter White), Manchester (home of the MRC FINE Trial), Southampton (Rona Moss Morris)…

If you want to read the European Association for Consultation Liaison Psychiatry and Psychosomatics’ vision for European service provision for MUPS, a copy of the Draft White paper:

“Patients with medically unexplained symptoms and somatisation – a challenge for European health care systems: A draft white paper of the EACLPP Medically Unexplained Symptoms study group”

is now available here  EACLPP Working group on MUS version 16 Jan 2009

or from the EACLPP site here:

http://www.eaclpp.org/news.html

http://www.eaclpp.org/documents/Patientswithmedicallyunexplainedsymptomsandsomatisation.doc

It is still out for consultation and comments can be submitted. Do our UK and European patient organisations intend to respond?

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

Francis Creed and Michael Sharpe are the UK members of the APA’s DSM-V Somatic Distress Disorders Work Group, aka the Somatic Symptoms Disorders Work Group that is engaged in the revision of DSM-IV which will be “harmonized” with the WHO’s ICD-11 chapter for Mental and Behavioural Disorders (currently Chapter V in ICD-10).

——————-

Related information:

The Elephant in the Room Series Two: More on MUPS

NHS MUPS Positive Practice Guide

NHS MUS Healthcare for London  

NHS Top of Mind London

The Elephant in the Room Series Two: More on MUPS

Elephant70

Image | belgianchocolate | Creative Commons

Keywords

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 Two:

More on MUPS

In April, I reported that Dr Richard Sykes (International CISSD Project) is now a “Visiting Research Associate” of the WHO Collaborating Centre, Institute of Psychiatry, King’s College London.

Since 2008, Dr Sykes has been engaged on the “London Medically Unexplained Physical Symptoms and Syndromes (MUPSS) Project” for which he receives a research award of £27,000 per year through the Institute of Psychiatry. The aims and objectives of this MUPSS Project and through what means these are to be achieved have yet to be established. But it is understood that a paper or papers may result out of the MUPSS Project which, according to Dr Sykes, will have relevance to “all conditions characterised by medically unexplained symptoms, not just CFS/ME”.

I’d like to draw attention to a collation of “MUPS” related documents:

[Note the use and juxtaposition of “chronic fatigue” with “bed-bound” and then the later use of (and statement in relation to) “chronic fatigue syndrome” in the first of these three NHS Commissioning documents. In the UK, we continue to see examples within NHS service provision and in liaison psychiatry and psychosomatics journal papers (many of which will be feeding into the DSM-V revision process) of the indiscriminate use of the terms “fatigue”, “chronic fatigue”, “chronic fatigue syndrome”, “CFS/ME” and “MUPS” .]

1] Three NHS (UK National Health Service) Commissioning related documents:

http://www.iapt.nhs.uk/wp-content/uploads/2008/11/medically-unexplained-symptoms-positive-practice-guidetxt.pdf

or open here:  NHS MUPS Positive Practice Guide

Improving Access to Psychological Therapies (Commissioning)

Medically unexplained symptoms positive practice guide  October 2008

“Relieving distress, transforming lives”

“Medically unexplained physical symptoms (MUPS) are physical symptoms that have no currently known physical pathological cause. They constitute a clinically, conceptually and emotionally difficult area to tackle, with clinical presentations varying greatly, from people who regularly attend GP surgeries with minor symptoms to people with chronic fatigue who are bed-bound.”

[…]

“The vast majority of MUPS, such as pain, irritable bowel syndrome and chronic fatigue syndrome, have no obvious cause and often do not actually require any input from health services.”

[…]

“Many people are willing to accept that depression and/or anxiety disorders are linked to their MUPS as long as they believe that health professionals are willing to keep an open mind about the cause of any further physical symptoms. Therefore, the venue or location of an IAPT service should be considered when looking to break down barriers for individuals who are experiencing MUPS. With many patients believing their symptoms are entirely physical problems, a service that is located or embedded in a physical health framework may encourage engagement, i.e. within a pain clinic, part of a Clinical Assessment Service or Intermediate Clinical Assessment Team for musculoskeletal problems.”

Healthcare for London (Commissioning)

Medically unexplained symptoms

http://www.healthcareforlondon.nhs.uk/assets/Publications/Mental-health/Briefs20-20MUS20v1.0.pdf

or open here:  NHS MUS Healthcare for London

“The proposed medically unexplained symptoms workstream will look at the patients who, after significant diagnostic investigation in physical care services, are not found to solely have a physical cause for their condition, and are considered to have a previously unrecognised mental health component to their condition.”

[…]

Outcomes of the medically unexplained symptoms workstream

· Integrated commissioning of services leading to individualised care and improved social outcomes for patients.

· Early identification and treatment will result in a potentially significant reduction in unnecessary and expensive medical investigations and ineffective treatment.

· Reduction in number of patients with medically unexplained symptoms in outpatient clinics and onward referral to diagnostics, which may have an impact on the 18 weeks target.

http://www.healthcareforlondon.nhs.uk/assets/Publications/Mental-health/Top20of20mindv1.0.pdf

Healthcare for London (Commissioning)

Top Of Mind: Making mental health a capital priority

or open here:  NHS Top of Mind London

“The mental health project will deliver commissioning specifications to primary care trusts (PCTs) providing evidence-based care pathways. It is proposed that these pathways meet the needs of the following three groups of service users:
· people with dementia and their carers;
· people with medically unexplained symptoms;
· people with co-occurring disorders.”

“Workstream one – Medically unexplained symptoms and the physical/mental health interface”

———————-

Here is UK based Rona Moss Morris selling CBT to the US:

2] Video of presentation by Prof Rona Moss Morris to School of Nursing, University of Wisconsin.

http://videos.med.wisc.edu/videoInfo.php?videoid=806

Medically Unexplained Symptoms: Medicine’s Dirty Little Secret

Rona Moss Morris
Professor of Health Psychology, University of Southampton UK

October 2007, 46 minutes

“Rona Moss Morris, PhD, describes her program of research to enhance coping with symptoms for individuals with chronic fatigue syndrome and irritable bowel syndrome using a model of self-regulation and cognitive behavioral therapy.”

———————-

Brace yourselves for this one…

3] PowerPoint presentation

From the website of the EACLPP (European Association for Consultation Liaison Psychiatry and Psychosomatics)

http://www.eaclpp.org/presentations.html

PowerPoint Presentation:

(PowerPoint Reader required):  ttp://www.eaclpp.org/presentations/Turner%20Stokes%20MUS.ppt

or open MS PP file here:  (PowerPoint Reader required):  Turner Stokes MUS  

Medically Unexplained Symptoms: an approach to rehabilitation

Prof Lynne Turner-Stokes, Herbert Dunhill Chair of Rehabilitation, King’s College London

Slide 6:

Establish a different attitude
‘Illness’ can be a social condition
Engenders a caring response
Admiration from peers
‘Isn’t she brave!”
Some who has found a prop
Does not necessarily want it removed
Seek medical attention
For confirmation – not cure
Diagnosis is an end in itself

Slide 26:

Some patients
Require their ‘medical condition’
Part of own strategy for dealing with life
Come to clinic
Not for a ‘cure’
For support and bona fide status
Of ‘being under care of the doctor’
Remove the crutch
They will find another

Slide 27:

Secondary gain
Disability may hold advantages for them
Financial /Environmental
Benefits, equipment, accommodation
Support, care and attention
From family, friends/carers
Excuse for avoidance
E.g of unwanted sexual attentions
Social mystique or importance
Having a ‘rare condition’

———————-

4] The Irish College of Psychiatrists’ Bulletin
Vol 3, Issue 1. May 2008

http://www.irishpsychiatry.ie/pdf/Newsletter%20May%2008.pdf

In which a keynote address of Danish researcher, Per Fink (CISSD Project member) is reported on Page 8:

“[…] His presentation also examined the claims of several of the ‘pseudonym’ somatoform conditions which have been invented by various branches of medicine. He found that there were no differences in the symptoms reported by patients diagnosed with Fibromyalgia; Multiple Chemical Sensitivity; Sick Building Syndrome and Chronic Fatigue Syndrome’ confirming the long-held clinical opinion that these are all the same condition: somatoform disorder. He also suggested a possible new name for the condition; ‘Body Distress Disorder’ which he believes may be more acceptable to patients and GPs.”

———————-

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

http://www.eaclpp.org/working_groups.html  and

http://www.eaclpp.org/news.html

News:

Working Groups

Medically Unexplained Symptoms and Somatisation

Patients with medically unexplained symptoms and somatisation – a challenge for European health care systems

A white paper of the EACLPP Medically Unexplained Symptoms study group
by Peter Henningsen and Francis Creed can be downloaded at:

http://www.eaclpp.org/documents/Patientswithmedicallyunexplainedsymptomsandsomatisation.doc

“You can see the first draft of the report following the above link.
It is still “work in progress” and will be revised further.

“If you have any comments or additions to suggest, please email them to Gill
Dunkerley (
Gillian.D.Dunkerley@manchester.ac.uk ) who will pass them on to the
working group.”

Draft document is approx 76 pages long, including tables and charts can also be opened here

EACLPP Working group on MUS version 16 Jan 2009

(Let me know if there are any problems opening this draft report.)

A white paper of the EACLPP Medically Unexplained Symptoms study group

Patients with medically unexplained symptoms and somatisation – a challenge for
European health care systems

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

“The report arises from the EACLPP working group “Improving the management of patients with medically unexplained symptoms/somatisation”. The group is open to all EACLPP members but a core group have been responsible for the fist draft of this report . The core group (listed below) includes (24 – to be revised?) members, who have contributed so far. They represent 9 EU countries (currently – increase?). All have a special interest in the treatment of patients with medically unexplained symptoms; most have a research interest as well as clinical one and all are motivated to see an improvement in the treatment of these patients who are served poorly by most, if not all, health care systems across Europe.”

———————-

NB:

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

Francis Creed, Peter Henningsen and Per Fink were also members of the International CISSD Project (Co-ordinator: Dr Richard Sykes, Principal Administrators: Action for M.E., now engaged in London MUPSS Project).

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

[I understand that there has been controversy over psychiatrist, Per Fink’s, influence and the choice of treatment and management models. Perhaps a Danish advocate could provide readers with an update on the progress of this Danish CFS Working Group?]

Prof Creed is a member of the board of the EACLPP which is administered out of University of Manchester. The official journal of the EACLPP is the Journal of Psychosomatic Research, which is co-edited by Prof Creed.

Prof Creed and Prof Michael Sharpe are the UK members of the APA’s DSM-V “Somatic Distress Disorders” Work Group. Prof Michael Sharpe was also a member of the CISSD Project and served as the Project’s UK Chair.

The April 2009 report of the APA DSM-V Somatic Distress Disorders Work Group by Joel Dimsdale, M.D. (DSM-V Work Group Chair) can be read on the APA’s site here:

http://tinyurl.com/DSMSDDWGApril09

An Editorial by Francis Creed and Joel Dimsdale entitled:

The proposed diagnosis of Somatic Symptom disorders in DSM-V to replace Somatoform disorders in DSM-IV – A preliminary report”

(an expansion of the brief report of the April 09 DSM-V Somatic Distress Disorders Work Group) will be published in the June edition of the Journal of Psychosomatic Research and is currently available online as “In Press” for subscribers.

DSM-V is anticipated to be finalised in May 2012, with a draft expected in 2009. DSM-V is to be “harmonized” for congruency with the chapter on Mental and behavioural disorders in ICD-11 (currently Chapter V in ICD-10).

And why aren’t our patient orgs monitoring and scrutinising these processes?

A DSM-V and ICD-11 Directory and previous reports in this series can be accessed at: http://tinyurl.com/dsm-vdirectory 

18 May 2009

New Journal “FATIGUE”: What’s in a name?

[Note that the proposed journal “FATIGUE” has no connection with the International Journal of Fatigue, a publication dedicated to the science and technology of structural fatigue.]

New Journal “FATIGUE”: What’s in a name?

Dr Charles Shepherd, Trustee and Medical Advisor to the ME Association, has accepted an invitation to sit on the Editorial Board of this forthcoming publication which is to be edited by Dr Derek Enlander. 

Various informal comments from Dr Enlander in response to expressions of concern from ME patients and advocates around the journal’s proposed title, and in response to requests for clarification of the Editorial Board’s intentions are in circulation.  Any formal statements of clarification, notices or press releases issued on behalf of the Editorial Board will be published here, as they become available.

The launch of a new international scientific journal around ME/CFS would always require careful handling and particularly right now, in the current economic and ME/CFS political climates, with continuing dissatisfaction here in the UK and Europe over service provision for people with ME, the reluctance of governments to commit to research programmes, potential changes to the US system of health care provision, international apprehension around the implications for the revision and “harmonization” processes towards DSM-5 and ICD-11 and the pervasive influence of those who would have treatments for this illness restricted to psychosocial programmes for the management of “fatigue” and for the modification of the so-called “faulty illness beliefs” they claim perpetuate the “fatigue”, and on the basis of which they seek to redefine and claim ownership of this illness.

How come the Editorial team behind the development of this new journal did not have the sensitivity and nous to predict that in proposing the title “FATIGUE”, they would likely generate considerable controversy?

News of this journal was released with no clear outline of the concept behind it, the nature and scope of its remit or the rationale behind the choice of the journal’s name.  The notice issued on 12th May, coinciding with the start of International ME Awareness Week, told us very little at all.

It’s still not clear whether this new publication is intended to be published as a peer reviewed, mainstream academic and scientific journal or in some other format, for example, as the official organ of a patient organisation, or some other body. It’s not yet known whether it is envisaged that the journal will be published in print form as well as online editions; or as a subscription only journal or accessible to non subscribers or whether its content will be aimed at both the medical/academic community and patients.

It’s not known where the funding for this publication is coming from nor the extent of its affiliations. Dr Shepherd has said that the journal is affiliated to the New York CIFDS Association, but this has yet to be confirmed by the journal’s Editor.

Although he has already accepted a seat on its Editorial Board, Dr Shepherd has said he does not know what the journal will contain in the way of papers and other items, or whom it will be aimed at; he says he shares people’s concerns about the title and that he will be taking this up with Dr Enlander in due course, but that he did not want to approve or condemn a title of a new journal until he had all the facts and had heard the reason why the “FATIGUE” title has been chosen. 

Why was he not motivated to make these enquiries before he signed up to this project? 

Perhaps Dr Enlander should have waited until more information about this concept could be made available before publishing a sketchy little notice on 12th May. It would also have been appropriate for Dr Enlander to have involved ME and CFS patients in consultations throughout the development of his concept. And since this journal is apparently in the interests of Lyme Disease and Fibromyalgia patients, too – should they not also have been consulted?

The original announcement, circulated via the HelpMECircle mailing list, contained no information at all about the remit of this new publication:

“A new Journal FATIGUE will debut early 2010.

The Editor is Derek Enlander MD, a physician who is on the faculty of Mount Sinai Medical School in New York. He is active in the treatment of CFS/ME, Lyme’s Disease and Fibromyalgia

The Editorial board includes the leading physicians and researchers in CFS/ME, Lyme’s Disease, and Fibromyalgia.

The CFS/ME researchers include in alphabetical order

Dharam Ablashi , USA,
Paul Cheney, USA,
Kenny de Meirleir, Belgium,
Derek Enlander, USA .
Jonathan Kerr, UK ,
Charles Shepherd, UK”

Since issuing this notice, Dr Enlander has disclosed that Dr David Bell (US) has also agreed to become a member of the Editorial Board.  (See previous posting by Greg Crowhurst for comment from Dr Bell and others on the use of the term “fatigue”.)

One of the informal responses from Dr Enlander to a request for clarification has been published via Co-Cure mailing list (13.05.09):

“The Journal FATIGUE is not ONLY pointed to ME, CFS, CFIDS but to Post Viral Fatigue, Post Polio Fatigue, Lyme’s Disease, Multiple Sclerosis, Erlichia, Babessiosis, rickettsial disease and other illnesses where fatigue is present.

In making a diagnosis all of these must be considered.

If we called the journal M.E. then the CFS group would complain, if we called it CFIDS the immunologists would complain, these politics are mind consuming. So relax and read a journal that bridges Fatigue in various disease states, we all will learn.

The Editorial board includes some of the best minds who believe that ME/CFS/CFIDS is a physical disease, a matter of prime importance that you should have focused on, at a time when the BMJ , New Scientist, Lancet and other journals proclaim the psychobabble theory.

Derek Enlander M.D., M.R.C.S., L.R.C.P.”

Dr Shepherd, who has said he knows very little about the editor’s plans, is inviting suggestions for alternative names and offering his thoughts on what a journal might usefully focus on.

But Dr Endander has yet to elaborate, himself, on how the editorial board will be defining “fatigue”; how it will be defining the scope of this publication or what is meant by “…other illnesses where fatigue is present”. It suggests that either policy is being formed on the hoof or that the editorial board is unwilling to set out its stall.

One thing is for sure – the news that this editorial team wants to push out a journal under the name of “FATIGUE” has left ME patients reeling.

From Dr Charles Shepherd, 14 May 2009

I suspect that some people will not like what I am going to say – but it does need to be said.

Having read and received some further comments about the title of this new journal, I think someone needs to make the point that while chronic fatigue syndrome/CFS is an awful name for this illness, there are good reasons for researching brain and muscle fatigue as a stand alone subject/symptom in ME/CFS.  And despite what appears on the internet, doctors do not automatically equate fatigue with psychiatric causation.

Fatigue in medical terms can be very simply divided into central fatigue and peripheral fatigue.

Central fatigue refers to fatigue that is caused by a problem in the brain, and this is a very significant and poorly understood clinical feature of many neurological illnesses, including multiple sclerosis and Parkinson’s disease. Significant disabling fatigue also occurs in a variety of non neurological illnesses – good examples include most chronic infections (eg hepatitis C, HIV, Lyme, TB), rheumatoid arthritis and cancer – where immune  mechanisms/cytokines may well play an important role.  In fact, if you ask people with rheumatoid arthritis about disabling symptoms, many will mention fatigue – but you won’t find fatigue in the medical textbook descriptions of RA.

Peripheral fatigue refers to fatigue that has its origins in muscle and here the pathological explanation is often more straightforward.  And, there is of course some evidence to indicate that there are muscle abnormalities/peripheral fatigue in a sub-group of people with ME/CFS.

As central fatigue – involving both mental and physical components – is a significant feature of ME/CFS, and many other non psychiatric illnesses, it should therefore be investigated and researched as stand alone subject .  Unfortunately, this is not the case at present.

I therefore hope that one strand of future ME/CFS research will be to look at how there may be common mechanisms in the various diseases where central fatigue is a prominent feature – as this could lead to an effective form of treatment for the central fatigue.

In this respect, a medical journal that concentrates on the issue of central (brain and organic) fatigue is not something that should be dismissed.

But I would accept that there are difficulties in choosing a suitable title that reflects the fact that this is not just dealing with fatigue in ME/CFS.

So if anyone has any alternatives to FATIGUE then please say so.

Charles Shepherd

 

Stephen Ralph maintains the website MEactionUK. From Stephen Ralph, 14 May 2009

To: Dr Charles Shepherd

Everything you have said [below] is all well and good and believable but this is a perspective from one side of the looking glass.

You may have heard of a chap called Professor Simon Wessely. He works in the field of liaison psychiatry at a hospital in London.

I understand that he specialises in a condition known as Chronic Fatigue Syndrome.

I hear and read that he has been specialising in Fatigue for 20 years and that he and his colleagues have a mountain of research relating to “Fatigue” that has become so convincing that his Fatigue research now influences Government Policy, NICE and the Medical Research Council.

Chronic Fatigue to Professor Wessely is a mental health disorder that can be cured by changing faulty illness beliefs.

CBT and GET are used to treat and “cure” “Fatigue” of a chronic nature.

A whole string of NHS clinics have been set up to treat “Fatigue” of a chronic nature and none of those clinics are addressing Fatigue in the context of anything you have written below.

You may also have heard that liaison psychiatry worldwide is trying to have Chronic Fatigue Syndrome reclassified under Somatoform Disorders in the forthcoming ICD-11 and in DSM-V.

So should this happen then where would a new Journal called “Fatigue” stand and how would it cover somatoform disorders or the other side of the looking glass?

Would liaison psychiatrists be excluded from contributing and peer reviewing?

On one side of the looking glass we have Central and Peripheral “Fatigue” as you describe and on the other side of the looking glass we have somatoform “Fatigue” – a concept currently supported by Governments in relation to CFS/ME and welded to CFS/ME by a shed load of dubiously peer reviewed research.

In my previous e-mail I was trying to explain that the word “Fatigue” as a medical term has become a broken word.

In reality “Fatigue” has become a medical double entendre that in relation to “CFS/ME” has been effectively stolen by liaison psychiatry.

Trying to shut a stable door after a horse has bolted seems a difficult endeavour.

How about a Journal called “Emerging Pathologies”?

Stephen Ralph

An economic analysis of this new fatigue Journal from a consumer point of view: Ciaran Farrell

An economic analysis of this new fatigue Journal from a consumer point of view

Ciaran Farrell  |  12 May 2009

Some sketchy details have emerged of a new “Journal” entitled “Fatigue”. It is not clear at this stage if this new publication will be a full peer reviewed mainstream academic and scientific Journal, or a lesser publication. I very much suspect that it will not take the form of a full peer reviewed mainstream academic journal, and may well be a sort of in-house magazine style Journal as published by some of the patient organisations in the US in order to make the science and medicine of professional doctors and researchers are accessible to the public.

In order to be a mainstream academic scientific and medical Journal, the word “Journal” is normally used in the title, such as, the “Journal of chronic fatigue syndrome” which closed down a couple of years ago due to the prohibitive costs involved and what could best be termed as a rather niche market within the mainstream academic and scientific marketplace. The Journal of Chronic Fatigue Syndrome was published by Howarth press, and even this organisation could not sustain the losses incurred by this publication. I do not consider that the individuals concerned in the venture of this new Fatigue Journal have either the financial backing or resources necessary to establish and maintain a front-line peer reviewed academic and scientific journal. Neither, it would appear, that they have the backing of an organisation such as the Howarth press in order to print paper copies of the Journal and ensure that they are distributed to various scientific academic and medical libraries throughout the world.

Nor do I see that the editorial group has the breadth and depth of the editorial board of the Journal of Chronic Fatigue Syndrome, so I cannot see that this enterprise can be mounted on the same basis, as those concerned  simply do not have the wherewithal to do so.

Therefore, it would be most likely that those concerned simply want a vehicle for their own work and a chance to be able to attract funders and donors for the organisations and institutions that carry out their research work, and those of their favoured colleagues by way of a magazine style publication which presumably would be available online only in order to reduce costs, and accessed principally through a website.

In my view, those concerned with this initiative have been around within the patient and carer communities in their  own countries and internationally to realise that a Journal of any sort simply entitled, ” Fatigue” would not be  acceptable to the patients and carers involved in the ME/CFS/ PVFS/CFIDS community is concerned. Perhaps they consider that the acceptance of their initiative by the patient and carer communities is secondary to the academic scientific and financial goals they seek. If so, they are simply wrong, because they failed to analyse and anticipate the demands of many of their readers, because presumably they consider that lay people are not important when it comes to the discussion of technical scientific and medical issues.

Perhaps they feel by broadening the appeal of their Journal to encompass the all embracing nature of fatigue that they will not suffer the fate of the Journal of Chronic Fatigue Syndrome. In this too, they are wrong, as in order to cover the vast swathe of ground that would be encompassed by fatigue they require far more human and financial resources than they obviously have at their disposal.

It is known for example that here in the UK, Charles Shepherd of the ME Association administers the Ramsay Research Fund on the behalf of thatcharity, and it is unknown at this time as to whether or not any charitable funds will be put into this venture by Charles Shepherd on behalf of the ME Association. This new Journal of Fatigue may be a means for the ME Association to publish the research that it has commissioned. However, the ME Association has a very poor record of being accountable both in terms of the research that they have published and the financial contributions the charity has made to the research concerned, and it is always been unclear where the charity has supported research financially, or has merely done so politically.

Dr. Kerr is a known recipient of charitable funds from various charities in the UK, and his research is also funded by the CDC in America and other organisations as well. The others involved no doubt also have links to various charities and organisations that fund their work or activities, or with which they are associated.

There is no indication given so far that this Journal of Fatigue will be open to the various patient and carer communities to participate in and contribute to the scientific academic and medical debates that concern us, because after all, we are the ones who suffer from the illness and disability which those involved in the fatigue Journal wish to debate, presumably in a high-flown environment which excludes us.

I believe this to be wrong, firstly because too many of these high-powered journals simply do not take into account the views of patients and carers as they are closed clubs for academics and doctors only, in which the public have no place. This is one of the reasons for the disconnect between activism on the part of patients and carers and the medical and scientific worlds inhabited by the researchers who presume to be acting upon our behalf, but who do not listen to us about the real nature of the illness we suffer from.

The second reason flows from the first, and it is this, if the patient and carer communities cannot influence or direct research into the illness that they suffer from, then the researchers are likely to look in the wrong places and in the  wrong ways for the cause of the illness, its treatment and the medical and social care of sufferers.

The third reason follows on from the other two, and it is that those doctors and researchers who take public money for their activities, and especially those who are funded by, or administer charitable funds must in my view be accountable to the patient and carer communities they serve, and upon whom they are dependent for funds.

Therefore my advice in getting the name of this Journal and its proposed contents changed, and opening it up to contributions from us lay people is very simple, we should vote with our purses and wallets, and deny those concerned our political, and most importantly our financial support, until such time as the editor and the editorial board of this fatigue Journal make public statements that they consider that the concepts of customer service apply to them in their enterprise just as much as they do in the high street.

These public statements should contain an explicit commitment to consult the patient and carer communities on the name of the journal, and an explicit commitment that patient and carer communities, that is lay people, may contribute to, and comment upon the research work conducted or reported through the journal concerned.

I therefore urge that no one make any form of financial contribution to any of the organisations concerned with any member of the editorial board, or the editor, or any organisation that funds any of the individuals research work or organisation.

Ciaran Farrell
UK ME Sufferer

12 May 2009