APPG on ME meeting: 8 July 2009 and Inquiry into NHS services 1st Oral Evidence session: 9 July 2009

1] APPG on ME meeting: 8 July 2009

2] APPG on ME Inquiry into NHS services for people with ME: 1st Oral Evidence session: 9 July 2009

A meeting of the All Party Parliamentary Group on ME (APPG on ME) took place on Wednesday, 8 July 2009 in House of Commons Committee Room 13.

The meeting, which also served as the Group’s AGM, was attended by MPs Dr Des Turner, Andrew Stunell, Peter Luff and Edward Davey, representatives of national patient organisations, including Action for M.E., The ME Association, The Young ME Sufferers Trust, BRAME, RiME, ReMEmber (The Chronic Fatigue Society) and several members of the ME community.

AGM: Re-elected Office Holders:

Dr Des Turner was re-elected Chair.

Vice Chairs Andrew Stunell and Tony Wright and Treasurer, David Amess, remain Office Holders.

Dr Ian Gibson who had served as Secretary to the APPG on ME committee stood down following his resignation from Parliament in June.

The Countess of Mar* was elected Secretary to the APPG on ME.

Dr Turner warned that a new Chair would be needed as he does not intend to stand again in the next General Election.

Action for M.E. and the ME Association will continue to provide administrative support to the APPG by providing the Secretariat.

Summaries of the meeting, a transcript and minutes will be posted here as they become available. The next meeting of the APPG on ME will take place in the Autumn.

The APPG on ME maintains a website at: http://www.appgme.org.uk

*In October, last year, the Countess of Mar convened and chairs a caucus group – Forward ME. The members of the Forward ME caucus group are: Action for M.E., The ME Association, AYME, The Young ME Sufferers Trust, BRAME, Invest in ME, ME Research UK and ReMEmber (The Chronic Fatigue Society).  The 25% ME Group was a member of Forward ME but has since withdrawn from the group.

A website for Forward ME is maintained at: http://www.forward-me.org.uk  where agendas and minutes of meetings can be accessed.

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APPG on ME Inquiry into NHS services for people with ME: 1st Oral Evidence session: Thursday, 9 July 2009

It is unconfirmed which national patient organisations have submitted Written Evidence and whether and when these submissions will be released.

Following the first Oral Evidence session, the ME Association published its 3000 word submission.

This is a long report which can be read in full on the ME Association’s website.  I am publishing only the Executive Summary, below:

For the full Written Submission go to:  http://www.meassociation.org.uk/content/view/911/161

ME Association submission to the APPG Inquiry into NHS Services for people with ME

The All Party Parliamentary Group on ME Inquiry into NHS services for people with ME/CFS is now calling witnesses to give evidence before it. Dr Charles Shepherd, our medical adviser, answered questions this afternoon (Thursday July 9). Our written submission appears below.

EXECUTIVE SUMMARY

1 ME/CFS covers a wide spectrum of clinical presentations and severity. This has to be appreciated when planning NHS service development and the training of those involved – doctors, nurses, occupational therapists, physiotherapists – in the clinical assessment and care of patients.

2 Everyone with ME should be able to receive an early and accurate diagnosis, normally through the primary care system, along with access to a local hospital based specialist service for further advice on either diagnosis or management, where necessary.

3 The severely affected group require home based management and designated in-patient beds for assessment and management.

4 The MEA submission describes serious deficiencies and omissions in all of the above key aspects of assessment and care.

5 The 2002 Chief Medical Officer’s report into ME/CFS made a number of specific and helpful recommendations regarding service development. The subsequent injection of ring-fenced funding from the Department of Health resulted in a number of new services opening. However, some parts of England still have no local specialist service to whom patients can be easily referred and some of the existing services are experiencing serious problems with funding.

6 The MEA submission highlights positive aspects of the CMO report that have still not been acted on by those responsible for funding and providing NHS services.

7 The 2007 NICE guideline on ME/CFS forms the new basis for clinical assessment, diagnosis and management of ME/CFS patients. Almost all of the charities representing people with ME/CFS believe that the NICE guideline has made the management situation worse because of their ‘one size fits all’ approach, which involves only recommending cognitive behaviour therapy and graded exercise therapy. This approach fails to take into account the fact that large numbers of people with ME/CFS report that these two treatments are either ineffective or cause a worsening of their condition – but this is all that is being offered in the way of management to significant numbers of people..

8 The MEA submission explains why the recommendations on management in the NICE guideline are a major stumbling block when it comes to providing services for people who are not going to be helped by CBT or GET.

Read on here:  http://www.meassociation.org.uk/content/view/911/161

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Action for M.E. has published a report on the 1st Oral Evidence session

Report of Day 1 of the APPG inquiry into NHS service provision for people with M.E.

Based on notes by Sir Peter Spencer, CEO, Action for M.E.

At 2pm 9 July, the All Party Parliamentary Group inquiry into NHS service provision for people with M.E. met in Committee Room 8 in the Houses of Parliament for its first session of taking oral evidence from witnesses.

Des Turner MP took the chair and was joined by the Countess of Mar, Andrew Stunell MP and Tony Wright MP. The other member of the inquiry team, Peter Luff MP, was unable to attend on this occasion. It is understood that a large amount of written evidence has already been received from patients, patient groups and from various parts of the NHS involved in service provision.

The oral evidence was recorded and the intention is that it will be typed up and made publicly available probably via the APPG website (www.appgme.org.uk ).

The proceedings began quite rightly by taking oral evidence from patients. Three people had been selected from those who had sent in written evidence. They were Cathy Fry from Sussex*, Jo [Ed: Joy] Birdsey from Kent and Sally Phillippe from Middlesbrough. The inquiry team invited each person to expand upon their personal experience of the illness by asking questions about the availability of services for their M.E. and the nature of those services.

All three had had significant problems with accessing appropriate care.

In Sally’s case she has still had no help apart from a diagnosis 12 years ago because there are virtually no M.E. services in Teeside – an area with a population of 670,000. Her local Primary Care Trust (PCT) had refused to fund a referral to services outside of their area. Sally explained that she felt very angry not only about her own experience but also on behalf of the large numbers of other people who had also not been given the help they need from the NHS.

Jo had found her local PCT in Kent to be extremely difficult, putting “M.E. at the bottom of the list” and being unwilling to enter into discussion about priorities for treating M.E. patients. She illustrated her own case with a graphic account of a particularly badly delivered set of Cognitive Behavioural Therapy (CBT) sessions.

Cathy encountered great difficulties with getting the help she needed from the NHS in Sussex over many years. She had finally decided to try the Lightning Process (LP) when her GP told her that although he was very sceptical, he had been astonished by the result experienced by one of his patients. Despite her own misgivings, Cathy tried LP and to her own astonishment it has produced such an improvement that she now describes herself as recovered. It was recognised by the inquiry team that LP does not work for all patients and that many are disappointed. It is also not available from the NHS and has to be paid for by the patient – £560 in Cathy’s case.

A common theme that emerged was the difficulty of finding GPs who are informed about M.E. and are supportive. Tony Wight asked the witnesses if it would be helpful for GP practices to have M.E. trained nurses to help GPs with M.E. patients. The response was a cautious yes but only if they are properly trained and are able to undertake domiciliary visits. It was important for patients to have access to the doctor as well as to the nurse.

The second part of the session took evidence from six patient representative groups namely:

• Peter Spencer – Action for M.E.
• Charles Shepherd – ME Association
• Mary-Jane Willows – AYME
• Doris Jones – 25% Group
• Christine Harrison – BRAME
• Jill Piggott – Worcester M.E. Support Group

Only 45 minutes were left for this final part of the session which had been interrupted several times when MPs and the Countess had to leave for votes in both chambers of the House. Each witness made an opening statement highlighting aspects that they wished to be considered by the inquiry team.

In its written evidence, Action for M.E. has already submitted the report M.E. 2008: What progress? Peter Spencer said that he would wish to cover during the evidence session the key findings and the main recommendations, including those relating to lack of service provision for children and the severely affected.

Our survey showed some improvement in NHS services since 2001 but the rate of improvement has been far too slow.

Peter also challenged the undue weight given by the NHS to Randomised Controlled Trials (RCTs) quoting from the 2005 National Service Framework for Long Term Conditions that “RCTs and other quantitative methods are not  necessarily best suited to research questions involving long term outcome, varied populations with complex needs and assessment of impact on quality of life rather than a cure.”

He also submitted a copy of the views of the Chair of NICE Sir Michael Rawlins, in a speech given in October 2008 which expresses serious reservations about RCTs being put on an undeserved pedestal. He said, “Their appearance at the top of hierarchies of evidence is inappropriate; and hierarchies themselves are illusory tools for assessing evidence.” Sir Michael had also questioned the “generalisabilty” of RCTs whereby limited data from trials is extrapolated to a wide population. Peter stated that this was precisely what had happened with the RCTs which had involved ambulant M.E. patients and that these trials had been given disproportionate weight in drawing up treatments available from the NHS. Other points raised by Peter included:

. how the Department of Health and Ministers remain accountable for the overall delivery of M.E. services when decisions on service delivery are delegated to so many individual Care Commissioners in Primary Care Trusts

. health economics are relevant. The annual cost to the UK of the burden of M.E. was estimated in a study done in conjunction with Sheffield Hallam University in 2002/03 as being £3.4 billion at 2002 economic conditions.

Updating that number for inflation gives estimates of £4.14-£6.4 billion per annum at 2008 prices. This is an area which merits further work to bring it up to date.

Peter also expressed strong support for some valuable points raised by his fellow witnesses, notably:

. the need to investigate the problems that patients still encounter with GPs who are sceptical or ill informed about M.E. – or both.

He illustrated this by reading out anonymous excerpts from patient narratives acquired in Action for M.E.’s 2008 survey:

www.afme.org.uk/res/img/resources/Survey%20Summary%20Report%202008.pdf

Charles Shepherd has recommended that the Royal College of GPs gives evidence at the next session. Action for M.E. agrees

. the value of a National Services Framework specifically for M.E. because this would be enforceable and set standards of care which all PCTs throughout England would have to provide

. the need to engage with the Department of Schools and Education to raise awareness and understanding of the particular problems faced by children with M.E. and their families.

It would be fair to say that all of the patient representative organisations were frustrated by the limited time available for their oral evidence. Nonetheless, a lot of powerful points were made and Action for M.E. and the other organisations have all made substantial written contributions.

On Thursday 16 July the inquiry team meets again this time to hear evidence from the Department of Health as provider of NHS services.

It is hoped that witnesses will include a Government Minister as well as senior figures from the NHS. The session is scheduled from 2-4 pm in Committee Room 18 in the House of Commons.**

**Ed: The CMO, Sir Liam Donaldson, has been invited to attend (acceptance uncomfirmed)

The general public are able to attend. If you would like to see this piece of history being made, you need to plan to arrive by 1.30 pm to allow time for the security checks and volume of queuing which is unpredictable.

Wheel chair access is available and the House of Commons staff are extremely helpful. Do check the APPG website close to the date to confirm that the location has not been changed. The link is: www.appgme.org.uk  

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*Connie Nelson has reported via Co-Cure (11 July 2008) that testimony on LP was included in the APPG on ME NHS services Inquiry and queries whether this might be related to the following: 

New adviser

Dr Michael Broughton, who is in charge of the Mid Sussex-based M.E. services, has joined the Sussex ME/CFS Society as its medical adviser. (Brighton Argus, p 15, 27/06/09)

Phil Parker at Swallows
http://digbig.com/5baaxp

Sunday, March 1, 2009 at 8:26PM

Phil Parker visited Swallows Retreat to meet with Dr. Michael Broughton, Consultant Specialist ME/CFS Sussex, and Colin Barton of the Sussex and Kent ME Society.

They joined Linda for a Summer barbecue in Swallows garden, looking at its best in July, and thirty graduates of the Lightning Process for M.E. at Swallows, who enjoyed the opportunity to thank Phil Parker, Developer of the Lightning Process for the difference he has made in their lives.

Some took the opportunity to swim in the pool and the party went on after Dr. Broughton and Phil Parker had to return to their respective clinics.

Dr. Mike Broughton and Phil Parker are now in consultation about further clinical trials beyond the year long one currently being undertaken with Linda’s Lightning Process participants at Swallows.

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Ed: Please note that ME agenda is unable to enter into any correspondence around the Lightning Process.

Hansard: Vaccine Damage Compensation Debate 8 July 2009

Hansard: Vaccine Damage Compensation Debate: Westminster Hall, 8 July 2009

Dr Ian Gibson, who has recently stood down as MP for Norwich North, is a champion of the mass vaccination of young girls with Cervarix, the cervical cancer vaccine.  Below, I am posting the full text of two important Parliamentary Debates both relating to vaccine damage.

In November 2006, the Group on Scientific Research into ME (the “Gibson Inquiry”) published a 32 page report resulting out of an unofficial inquiry that had been chaired by Dr Ian Gibson. Dr Gibson launched his inquiry, in the summer of 2005, “to assess the progress of scientific research on ME since the publication of the Chief Medical Officer’s Working Group Report into CFS/ME in 2002″ with the objective that its findings would “stimulate public debate on the subject of ME and act as a catalyst for increased funding of research”.

The “Gibson Report” can be read here: http://www.erythos.com/gibsonenquiry/Report.html 

Whilst this unofficial document generated much debate amongst its constituency of interest, the ME community, it received little political or media attention.

Despite Dr Gibson’s assurances at the May 2006 Invest in ME conference that his panel intended to consult before launching its final report, copies were emailed out to all MPs and sent to selected ministers and government departments with no consultation process having first taken place. The published document was littered with errors, misconceptions, ambiguities and contradictory statements.  All five national ME patient organisations – Action for M.E., The ME Association, AYME, The Young ME Sufferers Trust, the 25% ME Group, advocates and individuals had called on the inquiry panel to amend and review specific sections within the report –  for as it stood, the document could not be considered fit for purpose. 

On 6 February 2007, Dr Gibson chaired a public meeting, in London, to discuss the content of the report and how it might be used as a campaigning document. At this meeting, Dr Charles Shepherd raised a number of concerns in relation to the report’s content, on behalf of the ME Association and the wider ME community, including a request for factual errors in the section on benefits to be addressed (errors since reiterated by journalists) and around the panel’s views and opinions on the issue of the potential link between vaccinations and the onset of ME.

The GSRME panel disbanded shortly after the public meeting in early 2007.  No amendments to the document were made because the panel “owned” the report and Dr Gibson considered that he had no mandate to amend a document authored by a now disbanded panel. With no consideration of a process for draft consultation and amendments written into the panel’s Terms of Reference and as an unofficial committee, with no accountability to any agency, government department, commissioning body or organisation, the errors, misconceptions and ambiguities within the document remain. 

Page 22 of the “Gibson Report”, states:

“3.3.4 Vaccination

“Vaccination is often blamed for unexplained outbreaks of illness and regularly appears in the media being accused of such. The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be a cause…”

Extract from unofficial transcript prepared from audio recording of the public meeting held by the “Gibson Inquiry” panel in London, 6 February 2007:

[Extract picks up towards the end of the first half of the meeting]

Dr Charles Shepherd (Medical Advisor, ME Association) (CS): The second quibble is in 3.34 and what you said about vaccinations. I think your wording there is really going to cause people problems by saying that the Group found there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be the cause. It is, I believe a cause or trigger factor in a significant minority of people with this – I’ve probably got more patients in the UK that anyone else with vaccine induced ME – these are anecdotal cases, OK – I think I’ve probably got about 200.

Dr Ian Gibson, (former MP for Norwich North) (IG): Well, we didn’t want to get into anecdotal things…

CS: I know…

[Ian Gibson talks over Charles Shepherd: ??????????]

CS: …but if you looked at your experts who gave evidence – besides myself, Weir, Pinching, Byron Hyde – all who reported anecdotal cases of vaccinations…

IG: Of association with vaccination…

CS: Of association, and the CMO’s Report acknowledged…we actually managed to get in into the CMO’s Report…

IG: We have to be very careful we don’t say it’s the cause of something.

CS: Yes, but I think you are over cautious, there, and you know, we’ve struggled to get these people industrial injury benefits and it really is a struggle and that statement is not going to be helpful…

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Vaccine Damage Compensation Debate: Westminster Hall, 8 July 2009

Hansard

http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090708/halltext/90708h0010.htm

8 July 2009 : Column 307WH

Vaccine Damage Compensation
4 pm

Ian Stewart (Eccles) (Lab): I am pleased to have the opportunity to raise this issue today as chair of the all-party group on vaccine damaged children. I preface my remarks, as I always do, by saying that the all-party group supports a public vaccination programme and the protection of workers in the work place. We recognise the role that vaccination plays, and has played, in the reduction and eradication of disease, and like everyone, I want protection against disease for my nearest and dearest, and for everybody else’s too.

The Elephant in the Room Series Three: Criticism in Psychiatric Times of the DSM-V revision process

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

 

“At the APA Annual Meeting this past May, Drs. Regier and Kupfer announced that the DSM-V field trials would start on July 1, 2009 and be finished by June 30, 2010, which, given the fact that they need to submit the manuscript for publication by fall 2011 to meet the May 2012 deadline, is already cutting things pretty close. However, despite the fact that the field trials are about to start imminently … crucial details remain unknown…”

                      APA and DSM-V: Empty Promises, Robert L. Spitzer, MD

 

Criticism of the process of developing DSM-V by Allen Francis, MD, who had been a member of the DSM-IV Task Force, and from Robert Spitzer, MD, has evoked a caustic response from APA President, Alan Schatzber and DSM-V Task Force Chairs, Kupfer and Regier…

Psychiatric Times

http://www.psychiatrictimes.com/display/article/10168/1425383

June 26, 2009
Psychiatric Times.
Q & A

DSM-V Badly Off Track

Allen Frances, MD
Dr Frances was chair of the DSM-IV Task Force and of the department of psychiatry at Duke University School of Medicine, Durham, NC. He is currently professor emeritus at Duke.

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http://www.psychiatrictimes.com/display/article/10168/1425378

( PDF: http://www.beforeyoutakethatpill.com/2009/6/Frances_DSM-5.pdf )

26 June 2009
Psychiatric Times.
News

A Warning Sign on the Road to DSM-V: Beware of Its Unintended Consequences
Allen Frances, MD

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http://www.beforeyoutakethatpill.com/index.php/2009/06/23/dsm-5-beware-of-consequences/

23 Jun 2009
DSM-V Shadow Team: Retaliations & Beware of Consequences

Commentary by Doug Bremner, MD

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http://www.psychiatrictimes.com/display/article/10168/1425806

01 July 2009
Psychiatric Times.
Commentary

Setting the Record Straight: A Response to Frances Commentary on DSM-V
Alan F. Schatzberg, MD, James H. Scully Jr, MD, David J. Kupfer, MD, Darrel A. Regier, MD, MPH

Dr Schatzberg is President of the American Psychiatric Association.
Dr Scully is Medical Director, CEO, of the American Psychiatric Association.
Dr Kupfer is Chair, DSM-V Task Force
Dr Regier is Vice Chair, DSM-V Task Force

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http://www.psychiatrictimes.com/display/article/10168/1425844

02 July 2009
Psychiatric Times.
Commentary

APA and DSM-V: Empty Promises
Robert L. Spitzer, MD

Dr Spitzer is professor of psychiatry at Columbia University

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Related material:

http://www.psychiatrictimes.com/dsm-v

What Should Count as a Mental Disorder in DSM-V?
Psychiatric Times, 14 April 2009

DSM-V Transparency: Fact or Rhetoric?
Psychiatric Times, 06 March 2009

Toward Credible Conflict of Interest Policies in Clinical Psychiatry
Psychiatric Times, 01 January 2009

DSM-V Controversies
Psychiatric Times, 01 January 2009

Changes in Psychiatric Diagnosis
Psychiatric Times, 01 November 2008

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In March, neuroscientist, Dr. Jane Costello, resigned from the DSM-V Work Group for Disorders in Childhood and Adolescence  - recent commentary here:

David Dobbs: DSM-V Psych Bus hits more big potholes; passengers bail

Carlat Psychiatry: DSM-V Armageddon Part 2

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

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

 

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:

http://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:

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

Change of venue for APPG on ME meeting, Wednesday 8 July

Update @ 5.30 pm: Yet another change of room!

Heather Walker (Action for M.E. secretariat) advises:

The venue for tomorrow’s AGM of the All Party Parliamentary Group on M.E. has been changed again and will now take place in Committee Room 13, House of Commons. This is a change from this morning’s notice (previous bookings in Boothroyd Room, Comm Rm 19, Comm Rm 20).

Dr Des Turner’s office tells us room bookings have been changed at short notice several times this week. They will make sure that notices are posted at the House of Commons if there are any further changes to the venue.  The meeting still takes place 1.30pm – 3pm. Information correct at 16.24 hrs on 7 July.

Heather Walker
Communications Manager
Action for M.E.

—————————-

APPG on ME meeting – Wednesday 8 July

I am advised that the ME Association has just been notified by Dr Des Turner’s office about a change of venue for tomorrow’s APPG on ME meeting.

Tomorrow’s AGM and business meeting of the All Party Parliamentary Group on ME will now be held in the Boothroyd Room in Portcullis House (note – room change from Committee Room 19). The time stays the same: 1.30-3pm.

 

Agenda and Minutes of previous meeting (1 April 2009) here:

http://meagenda.wordpress.com/2009/06/21/appg-on-me-agenda-for-next-meeting-wednesday-8-july-2009/

APPG on ME inquiry details for evidence sessions, 9 and 16 July

Update @ 9.30 am 7 July

I have spoken to the Parliamentary Events Team office this morning (who handle the bookings) and they have confirmed that the venue for this Thursday’s oral evidence session has been booked for HoC Committee Room 8 and that the venue for the oral evidence  session on 16 July has been booked for Committee Room 18 (which accords with Dr Turner’s Brighton Constituency Office and with the most recent notice on the APPG on ME website). 

I am agitating for an agenda for the meeting on Thursday or at the very least, a list of those invited to provide oral evidence but I am advised that as things stood, yesterday, the list was still being finalised. 

Update @ 6 July: The following notice has now been placed on the APPG on ME inquiry website. 

Note that earlier today I was told by Dr Turner’s Constituency Office that the venue for Thursday’s session is House of Commons Committee Room 8 and this accords with the information subsequently posted on the APPG on ME inquiry website.  However, it has been brought to my attention that those receiving invitations to attend were told that the venue for Thursday’s session is Room 18 (which is on a different floor).  I will endeavour to have the Committee Room for Thursday’s meeting confirmed by the Office of the Parliamentary Sergeant at Arms or Events Team, first thing tomorrow morning.

http://www.appgme.org.uk/index.html

Important Notice

APPG on ME inquiry on NHS service provision for people with ME will be holding oral evidence sessions on:

Thursday 9th July 2.00-4.00pm – Comm. Room 8
Patients’ session 2.00-3.00pm
Groups’ session 3.00pm-4.00pm

Thursday 16 July 2.00-4.00pm – Comm. Room 18
Expert evidence session

Members of the public can attend the oral evidence hearings but evidence will be given by invitation only.

—————————————-

APPG on ME inquiry into NHS services for people with ME:

Details for evidence sessions, Thursday 9 July and Thursday 16 July

I have today telephoned the Parliamentary Office of Dr Des Turner, MP who Chairs the APPG on ME inquiry into NHS services for people with ME in order to extract a notice or information on the time and venue for the first oral hearing/evidence session that is understood to be taking place this week, on Thursday, 9 July.

As no-one was available to take my call in Dr Turner’s Parliamentary Office, I have also spoken to a member of staff in his Brighton Constituency Office.

Until the APPG inquiry website has been updated, I have the permission of Dr Turner’s Constituency Office to make the following information available:

Evidence sessions for the APPG Inquiry will be held on the afternoons of Thursday 9 July and 16 July:

Session 1: Thursday, 9 July 2009

Committee Room 8, House of Commons

2pm – 4pm

First hour: Evidence from patients
Second hour: Evidence from patient groups (including Action for M.E.)

Members of the public may attend and the capacity of the room is estimated to be 40 to 50.

 

Session 2: Thursday 16 July 2009

Committee Room 18, House of Commons
(note not the same room as the meeting on 9 July)

2pm – 4pm

Session: Evidence from health professionals and experts

Members of the public may attend and the capacity of the room is estimated to be 40 to 50.

All enquiries to:

Dr Des Turner: turnerd@parliament.uk  Parliamentary Office: 020 7219 4024

———————

Suzy Chapman
6 July 2009

Next meeting of the APPG on ME: Wednesday 8 July 2009

Three upcoming events this week:

APPG on ME meeting

The next meeting of the All Party Parliamentary Group on M.E., chaired by Dr Des Turner MP, will take place on Wednesday 8 July 2009, Committee Room 19*, House of Commons, 1.30-3pm.

*Please note this change of venue which was previously given as Committee Room 20

The meeting will also serve as the group’s AGM.  Committee officers holders for the next parliamentary year will be elected (Dr Gibson is no longer Secretary to the APPG on ME having recently stood down as MP for Norwich North) and the future work of the APPG on ME will be discussed. No invited speaker for this meeting has been announced.  Members of the public are permitted to attend these meetings (please see my note of clarification around the status of membership of the APPG on ME at the end of this post).

Agenda for Wednesday’s meeting

 

APPG on ME Inquiry into NHS Services for people with ME

There is considerable confusion about the dates and times for these sessions since the APPG on ME website states:

“Evidence sessions are likely to commence 14 July 2009 and a later notice will give details of these.”

But no notice has been issued setting out the dates and times for these oral hearings/evidence sessions by either the APPG on ME committee, the inquiry panel Chair, Dr Turner, or the secretariat to the APPG on ME.

According to unofficial reports, oral hearings for this inquiry are being held, this week, on Thursday, 9 July (the day after the APPG on ME meeting) and last week, invitations were apparently received by some members of the ME community to attend in order to present oral evidence.  No complete list of attendees has been issued.

It is assumed that (as was the case with the oral hearings for the “Gibson Inquiry”) these hearings are intended to be held in public.  Why Dr Turner has failed to issue a notice and why the secretariat to the APPG on ME has failed to chase Dr Turner for one, isn’t clear.

Some readers will recall that in 2006, two of the oral hearings for the “Gibson Inquiry”, which had been intended to be held in public, took place virtually in camera because Dr Gibson’s administrative support staff failed to circulate a notice advertising the dates and times of these meetings and the names of those invited to give evidence.  So very few of those who would have liked to have attended these two hearings were in a position to do so. 

It is disturbing that once again, no agenda for the first of these oral hearings has been circulated by Dr Turner.  There are also concerns that some of those who have made written submissions have received no acknowledgement of their submission, whereas others have. 

If you were hoping to attend the oral hearings please contact Dr Turner, directly, at the email address or through his parliamentary office as I have no information, myself, about the hearing said to be taking place on Thursday this week.  If any information filters out I will post an update.   

Dr Des Turner:  turnerd@parliament.uk   Parliamentary Office: 020 7219 4024

This is, in any case, a poor choice of week for the ME community for the holding of oral hearings/evidence sessions – with the APPG on ME meeting on Wednesday and the Royal Society of Medicine’s “Medicine and Me” series event taking place on Saturday, 11 July.  Attendance of the RSM event is by reservation of seat.  

For information on the RSM “Medicine and me” series event: ME and CFS – Hearing the patient’s voice, Saturday, 11 July see:

http://www.rsm.ac.uk/academ/x2g106.php

———————-

Minutes of previous APPG on ME Meetings

The APPG on ME website now has PDF copies of Minutes of APPG meetings going back to 31 January 2001 collated at:  http://www.appgme.org.uk/minutes/mintues.html

Clarification regarding membership of the APPG on ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group on ME.

None of the above are members of the APPG on ME.

In the case of Associate Parliamentary groups, applications for membership may be accepted by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

But the All-Party Parliamentary Group on ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG on ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. [...] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

The APPG on ME group’s current office holders and the twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed at the link, below.

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi389.htm

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” AfME and The ME Association are listed as jointly providing the secretariat to the Group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

AfME and the MEA alternate the task of minute taking and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and are open to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties; they are also open to individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.

So none of the five national registered membership ME patient organisations listed above are members of the APPG on ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, provide the secretariat function.

ME Research UK : a research organisation and a registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names are sometimes listed as attendees in the minutes of meetings; their contributions to these meetings are minuted.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

A Guide to the Rules on All Party Groups can be downloaded here:

http://www.parliament.uk/documents/upload/PCFSGroupsRules.pdf

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

Number 10: Invest in ME Conference Petition: Response

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

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

http://www.number10.gov.uk/Page19853

Wednesday 1 July 2009  Attend IiME 2009 – epetition response

We received a petition asking:

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

 Details of Petition:

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

 Read the Government’s response

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

Kathleen (Kay) Gilderdale court hearing: 3 July 2009

Postings on ME agenda site for media coverage of the death of Lynn Gilderdale are identified by the Freefoto.com image above and are archived in Categories under Gilderdale Case

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Express  |  4 July 2009  |  by Sarah Westcott

MUM ADMITS AIDING DAUGHTER’S SUICIDE

A FORMER nurse accused of trying to kill her daughter after watching her battle a serious illness for 17 years yesterday admitted aiding her suicide…

Read on here

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BBC Sussex |  3 July 2009

Mother admits aiding ME suicide

A mother of a prominent ME sufferer and campaigner has admitted aiding and abetting the suicide of her daughter.

Bridget Kathleen Gilderdale, 54, of Stonegate, near Heathfield, Sussex, pleaded guilty to the charge at Lewes Crown Court.

But she denied a charge of attempted murder and one of aiding and abetting attempted suicide.

Lynn Gilderdale, 31, who had chronic fatigue syndrome, or ME, was found dead at their home on 4 December.

The offences are alleged to have taken place between 2 December and 4 December.

Judge Richard Brown set a provisional trial date for 12 January 2010 and ordered the case to be tried by a High Court judge.

After Ms Gilderdale was charged, her family said she retained their “unconditional support”.

Lynn Gilderdale battled ME for 17 years, relatives said.

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The Argus Brighton  |  3 July 2009

Mother admits helping daughter’s suicide – but denies attempted murder

11:15am Friday 3rd July 2009

Sussex mother Kay Gilderdale admitted aiding and abetting the suicide of her seriously-ill daughter when she appeared in court today…

Full report here

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Independent  |  3 July 2009

http://www.independent.co.uk/news/uk/crime/mother-admits-aiding-daughters-suicide-1730127.html

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Worthing Herald  |  3 July 2009

http://www.worthingherald.co.uk/latest-south-east-news/Mother-charged-with-daughters-murder.5426849.jp

Press Association release