APPG on ME: Minutes of meeting, 2 July 2008

The Agenda for the next meeting of the APPG on ME can be read here (if planning to attend this meeting, please check the News page of the MEA’s website for any last minute changes to the time and committee room):

http://meagenda.wordpress.com/2008/09/12/appg-on-me-draft-agenda-for-meeting-8-october-2008/

Below are the official Minutes for the last meeting of the APPG on ME in both Word doc and text version.

 

APPG on ME: Minutes of meeting, 2 July 2008

Click on link for Word doc APPG Minutes 02.07.08  [355 KB]

I am advised by Tony Britton, MEA and joint secretariat to the APPG on ME, that the minutes – at nine pages – are unusually long, in order to include as much as possible from the child protection presentations, which are being followed up at various levels.

Text version:

http://www.meassociation.org.uk/content/view/668/70/

Minutes of meeting of All Party Parliamentary Group on M.E. held at 1pm, Tuesday 2nd July 2008 Committee Room 20, House of Commons

PRESENT
Dr Des Turner MP
Dr Ian Gibson MP
Andrew Stunell MP
Tony Wright MP
The Countess of Mar

Koyes Ahmed (Office of Dr Des Turner MP)

Sir Peter Spencer, Action for M.E.
Dr Charles Shepherd, ME Association
Tony Britton, ME Association

Mary-Jane Willows, Association for Young People with ME
Jane Colby, Young ME Sufferers Trust
Christine Harrison, BRAME
Joanna Smith, parent of child with ME (with Jane Colby)
Ian Webster, parent of child with ME (with Mary-Jane Willows)
Joy Birdsey (Kent and Sussex Alternative Group for MEE)
A Gold (Patient Observer)
Janet Taylor (Kirklees Independent ME Support Group)
Di Newman (Peterborough ME and CFS Self-Help Group, and Cambridgeshire Neurologiical Alliance)
Augustine Ryan (Person diagnosed with ME)
Anna Tagliaferro (Person diagnosed with ME)
Bill Kent (reMEmber)
Janice Kent (reMEmber)
Jo Dubiel (Person with ME)
Nicky Zussman (Kent and Sussex Alternative Support Group for ME)

1. Welcome
Dr Des Turner welcomed everyone to the meeting.

2. Apologies
David Amess MP (group treasurer), Ann Cryer MP, Andrew Dismore MP, David Drew MP, Mike Hancock MP, Dr Brian Iddon MP, Peter Luff MP, Kerry McCarthy MP.

Heather Walker (Action for ME), Doris Jones (25% Group), Colin Barton (Sussex and Kent ME/CFS Society).

3. Minutes of the last meeting

Christine Harrison (BRAME) challenged the minute of the meeting of 22 January 2008, in particular the record of discussion with Ann Keen MP, Parliamentary Under Secretary of State for Health Services.

MRC: FOI, peer review reports relating to unsuccessful proposals

From Ian McLachlan, continuing correspondence with the MRC

26 September 2008

Dear Mr McLachlan,

Freedom of Information request for peer review reports relating to unsuccessful proposals

Firstly I apologise for the time taken to respond to the request you submitted on 9th July.

In your request you asked for peer review reports relating to a number of unsuccessful proposals identified in 2005 in response to an earlier Freedom of Information request. We have considered your request carefully, and have taken account of the recent decision from the Information Commissioner’s Office on your complaint. However, the MRC considers that the information you have requested is subject to exemptions under the Freedom of Information Act, and we have therefore decided not to release the requested documents to you.

Our decision is based on the application of the following exemptions under the Act:

Section 36(2)(b) and (c): Effective Conduct of Public Affairs.

The MRC’s peer review process relies on the provision of highly detailed and sensitive information by both the applicants for grants and those who review them. The MRC considers that the release of reviewers’ reports, provided in confidence, would result in a change in the behaviour of those participating in the process (both applicants and reviewers), in terms of the information provided for review, the availability of reviewers and the detail and quality of the reviews provided. Such a change in behaviour would inhibit the free and frank expression of views and provision of advice and would significantly impair the quality of the MRC’s peer review mechanism.

This view is based on the experience of senior staff and the views of individual applicants and reviewers and is held by a qualified person as required by s36 of the FOIA.

Section 41: Information Provided in Confidence.

Applications for MRC funding are submitted in confidence. This allows applicants to provide detailed information relating to their proposed study for the purposes of peer review. Peer review reports are also provided in confidence; this is in part to maintain the confidentiality of any information contained in the research proposal that reviewers include in their comments, but also to permit the free and frank delivery of views by reviewers.

Information provided in applications to the MRC which the applicants and the MRC would not wish to release includes sensitive information relating to preliminary hypotheses and research findings and data, information intended for future publication, commercially sensitive information, and personal data. The expectation and duty of confidence is clearly outlined at the time of application and on referral to peer reviewers who assess the proposal. The ICO recently acknowledged and accepted the requirement for such a duty of confidence to both applicants and reviewers. The release of the reports you have requested would constitute a breach of this confidence and could result in the MRC facing actions for breach of confidence.

Even if, in any individual case, both the applicant and relevant reviewer were to agree to the release of a peer review report which was originally provided in confidence, MRC’s view is that the release of that report would have a detrimental impact on the peer review process as described above and would therefore be exempt from disclosure under s36.

Although we believe that all of the information you are requesting is covered by one or both of the above exemptions, as you know, we must also consider whether in all the circumstances of the case, the public interest would be better served by disclosing, rather than withholding, the information. In considering this, we have taken account of the views not only of senior MRC staff, but also of applicants and reviewers, and have considered the wider implications for the peer review process currently operated by the MRC. The MRC’s mission is to improve human health through world-class medical research and we support an extremely wide range of research across the entire spectrum of medical research, from fundamental laboratory-based science to clinical trials, and in all major disease areas. Effective peer review is the cornerstone of our mission in providing the mechanism to ensure that public funding is used most effectively to support the best science.

The MRC believes that release of reviewers’ reports would have a detrimental impact on the process of peer review across all areas supported by MRC making it more difficult for the MRC to discriminate between proposals that merit funding and those that do not. For this reason the MRC considers that the public interest is better served in withholding the information that you have requested than it is by disclosing it at the present time.

If you are not satisfied that your request has been dealt with appropriately you may appeal using the MRC’s complaints procedure (www.mrc.ac.uk/index/about/about-contact/about complaints_procedure.htm).

Alternatively you may contact the MRC Complaints Officer by email at customer.service@headoffice.mrc.ac.uk or write to The Complaints Officer, Medical Research Council, 20 Park Crescent, London W1B 1AL. If, following the Complaints Officer’s reply, you remain dissatisfied; you may contact the Information Commissioner. Details of how to take your complaint further are at www.informationcommissioner.gov.uk .

Yours sincerely

for MRC

PACE Trial: Vacancies for administrative personnel and therapists

In September, a number of vacancies for administrative personnel and therapists for the PACE Trial were being advertised.

The PACE Trial was seeking to recruit:

 

PACE Trial Manager (0.8 – 1.0 FTE)

Barts and The London School of Medicine and Denistry

http://www.jobs.ac.uk/jobs/SM102/PACE_Trial_Manager_08_-_10_FTE/

Job spec: http://webapps.qmul.ac.uk/hr/vacancies/jobs.php?id=857

[If vacancy details have now expired for this position, I have a copy on file if required]

Salary £46,833 (pro-rata)

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PACE Trial Research Administrator (0.6 FTE)

Wolfson Institute of Preventive Medicine Centre for Psychiatry

Salary £24,440 (pro-rata)

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http://royalfree.org.uk/default.aspx?top_nav_id=4&sel_left_nav=23&tab_id=28

Occupational/Graded Activity/Adaptive Pacing Therapist

London – The Fatigue Service, Medicine Directorate Royal Free Hampstead NHS Trust

Salary: £34,909 to £44,290 pa Inc

also

Graded Exercise Therapist (physiotherapist or exercise physiologist)

London – The Fatigue Service, Medicine Directorate Royal Free Hampstead NHS Trust

Salary: £34,909 to £44,290 pa Inc

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For a copy of the PACE Trial Protocol click MRC PACE Trial

10th International Congress on Behavioural Medicine: CFS presentations

CFS related presentations at the 10th International Congress on Behavioural Medicine, Japan

Tom Kindlon, Information Officer, Irish ME/CFS Association has highlighted via the Co-Cure e-list CFS related presentations at a recent congress on Behavioural Medicine, held in Japan, in September.

Tom writes:

“This conference, on August 27-30, 2008 in Japan was just a few days before the International Conference on Fatigue Science (September 3-5), September 3-5 which was co-sponsored by the IACFS and the CAA.  As one can see, the CDC’s CFS team (amongst others) presented at it.  Why did they not present at the International Conference on Fatigue Science?”

A PDF of the programme for the 10th International Congress on Behavioural Medicine, Japan can be downloaded here:

http://www.icbm2008.jp/pdf/ICBM_Program.pdf

A PDF of the programme for the International Conference on Fatigue Science which took place between Wednesday September 3 – Friday September 5 , 2008,  Bankoku Shinryokan Hall, Okinawa, Japan can be downloaded here:

http://www.congre.co.jp/icfs2008/images/program.pdf

 

Here are the references to “Chronic Fatigue” (mostly “Chronic Fatigue Syndrome”) which Tom has highlighted from the Congress on Behavioural Medicine programme:

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Tracks and Track Chair
Somatoform Disorders/Chronic Fatigue/Medically Unexplained Symptoms
Winfried Rief (Germany)

Track Co-Chair
Rona Moss-Morris (United Kingdom)

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LUNCHEON SEMINARS
LS2
Thursday 28 August, 13:30 – 14:30 Room531 (Bldg.5 1F)
Chair: Kazuhiro Yoshiuchi
Co-sponsored by MEIJI SEIKA KAISHA, LTD and Sanofi-Aventis-Meiji Pharmaceuticals. Co. Ltd.

CHRONIC FATIGUE SYNDROME & FIBROMYALGIA: A RESEARCH UPDATE
Benjamin H. Natelson

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SS19
Thursday 28 August, 14:30 – 16:00 Room312 (Bldg.3 1F)
Chair: Gijs Bleijenberg
Cognitive behavioral treatment for chronic fatigue

SS19-1
HOW IMPORTANT ARE COGNITIVE AND BEHAVIOURAL RESPONSES IN TERMS OF PREDICTING AND MEDIATING CHANGE IN CHRONIC FATIGUE SYNDROME?
Chalder T, Rimes K, Moss-Morris R

SS19-2
EFFICACY OF COGNITIVE BEHAVIOUR THERAPY FOR ADOLESCENTS WITH CHRONIC FATIGUE SYNDROME: LONG-TERM FOLLOW-UP OF A RANDOMIZED CONTROLLED TRIAL
Hans Knoop, Stulemeijer M, Bleijenberg G

SS19-3
EFFICACY OF GUIDED SELF-INSTRUCTIONS IN THE TREATMENT OF PATIENTS WITH CHRONIC FATIGUE SYNDROME: A RANDOMISED CONTROLLED TRIAL
Bleijenberg G , Knoop H, van der Meer J W M

SS19-4
FATIGUE IN CHRONIC FATIGUE SYNDROME AND MULTIPLE SCLEROSIS: ARE THEY ANY DIFFERENT?
Moss-Morris R

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Track : Somatoform Disorders/Chronic Fatigue/Medically Unexplained Symptoms
P-152-T
CITATION AWARD ABSTRACT
INTER-PROFESSIONAL EDUCATION IN BEHAVIORAL MEDICINE: TRAINING MEDICAL AND CLINICAL PSYCHOLOGY STUDENTS TOGETHER IN PRIMARY CARE FOR IMPROVED MANAGEMENT OF MEDICALLY UNEXPLAINED SYMPTOMS
Berman A H, Krantz G, Mogensen E, Ek U, Nilsonne Å

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SS12-4
SEX DIFFERENCES IN BASAL HPA AXIS ACTIVATION IN CHRONIC FATIGUE SYNDROME ? EVIDENCE FROM A POPULATION-BASED STUDY
Nater U M, Maloney E, Boneva R S, Gurbaxani B M, Lin J, Jones J F, Reeves W C, Heim C

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MP5-4
INTERVENTIONS FOR POST CANCER FATIGUE AND CHRONIC FATIGUE SYNDROME, HOW CRUCIAL IS THE INCREASE OF PHYSICAL ACTIVITY FOR THE REDUCTION OF FATIGUE?
Bleijenberg G

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Track : Somatoform Disorders/Chronic Fatigue/Medically Unexplained

P-203-RF
THE FACTOR STRUCTURE OF THE CHINESE VERSION OF THE MULTIDIMENSIONAL FATIGUE INVENTORY (CHMFI)
Wong W S, Fielding R, Chan S T M, Fung P K

P-204-RF
THE FACTORIAL VALIDITY OF THE CHINESE VERSION OF THE CHALDER FATIGUE SCALE (CHCFS)
Wong W S, Fielding R

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SS39
Saturday 30 August, 8:30 – 10:00 Room312 (Bldg.3 1F)
Chairs: Rona Moss-Morris, Alexandra Martin
Concepts, mechanisms and treatment in chronic fatigue and Somatoform Disorders

SS39-2
NEUROPSYCHOLOGICAL FUNCTIONING IN CHRONIC FATIGUE SYNDROME- A COMPARISON WITH AUTO-IMMUNE THYROID DISEASE AND HEALTHY PARTICIPANTS
O’Carroll R, Dickson A, Toft A

SS39-3
PERFORMANCE ON A TIMED STEP TEST IN CHRONIC FATIGUE SYNDROME PATIENTS: THE ROLE OF ILLNESS BELIEFS.
Wearden A J, Riste L, Bentall R

SS39-4
BODY DYSMORPHIC DISORDER AND SOMATISATION SYNDROME IN THE GENERAL POPULATION
Martin A, Glaesmer H, Braehler E

SS39-5
USING A COGNITIVE BEHAVIOURAL MODEL TO UNDERSTAND AND TREAT FUNCTIONAL DYSPHONIA
Deary V

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OS34-1
THE POSITIVE IMPACT OF CHRONIC FATIGUE SYNDROME: ASSOCIATIONS BETWEEN BENEFIT FINDING AND POSITIVE AND NEGATIVE ADJUSTMENT DOMAINS
Lowry T J, Pakenham K I

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Ed: Note: Professor Rona Moss-Morris was a presenter at the Royal Society of Medicine’s “CFS” Conference held in London, April 2008.  Her presentation on CBT and GET for CFS can be viewed on the RSM’s website.  The webcasts of all ten conference presentations are available in four session sections.  Registration is required to view these webcasts but this does not take long to fill in and is processed immediately:

http://rsm.mediaondemand.net/events.aspx

CBT and GET, Professor Rona Moss-Morris
http://rsm.mediaondemand.net/player.aspx?EventID=1338

Alison J Wearden, Lisa Riste and Richard Bentall are all members of the research team for the MRC FINE Trial.  Vincent Deary used to work as a therapist in the KCL CFS unit and was involved in the design of the MRC PACE Trial pilot therapies but is currently working in the area of functional dysphonia.  Abstracts of recent papers by Vincent Deary on CFS and on functional dysphonia here

Professor Trudie Chalder is a Principal Investigator for the MRC PACE Trial 

BBC News: Setback in retirement age battle

Ed: Report includes a 1.53 min video of consultant paediatrician and paediatric ME expert, Dr Nigel Speight, speaking about being forced out of his job at the age of 65.

BBC News

Setback in retirement age battle

22 September 2008

A challenge to the right of employers to make people retire at 65 has been rejected by a European court adviser.

An Advocate-general, a senior legal adviser to the European Court of Justice, backed current UK rules – although the decision is not binding.

Age Concern is challenging UK laws, which since 2006 have allowed employers to compel workers to retire at 65.

Some 260 people in Britain have cases at employment tribunals which depend on the European court’s ultimate decision…

Read full article here

 

NICE legal challenge: Launch of supporters’ website

NICE CFS/ME Guideline legal challenge supporters’ website for information, updates and appeals for assistance with Judicial Review

A member of the ME internet community has created a website to support the NICE Guidelines court case(s).  This is an unofficial site and not connected to the organisers but for supporters who want to make the hearing a success.

The site can be found at:

http://www.nicemecourt.co.uk/

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For guidance on what a Judicial Review is, what it isn’t, and how it works see:

http://meagenda.wordpress.com/2008/06/18/judicial-review-judgement-guidance/

Judicial Review: Judgement Guidance

Posted 18 June 2008

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For a summary of the application hearing which took place in June and a copy of the ME Association’s position regarding the NICE legal challenge see:

http://meagenda.wordpress.com/2008/06/18/summary-of-application-hearing-nice-cfsme-judicial-review/

Financing a judicial review of the NICE guideline on ME/CFS

Published by the MEA in November 2007

Summary of application hearing, NICE CFS/ME judicial review

Posted 18 June 2008

The case against the NICE guideline on ME/CFS moved to Court 7 in the Royal Courts of Justice on Tuesday 17 June.  Summary of key points made during the proceedings.

Produced by the ME Association

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In November AfME (Action for ME) issued a statement on their position regarding the NICE legal challenge see:

http://www.afme.org.uk/news.asp?newsid=343

Legal action against NICE

21 November 2007

There have been stories in the media about a possible legal challenge to the NICE guidelines. Action for M.E believes this challenge is misguided and will not be supporting it…

Read full statement here 

Positions on RSM Bristol conference from TYMES Trust and 25% M.E. Group

Responses from ME patient organisations on their positions on the RSM’s regional conference on “CFS”

In the weeks before the RSM’s controversial London “CFS” conference, four of our leading ME patient organisations had issued position statements in response to a statement published by Action for ME (AfME) in defence of Sir Peter Spencer’s participation in this event.

Yesterday, I approached The ME Association, The Young ME Sufferers Trust, The 25% ME Group and Invest in ME to enquire whether these organisations have issued or intend to issue position statements on the RSM’s CFS regional conference taking place in Bristol today or have made any arrangements for literature to be handed out to conference attendees. A week ago, I also contacted the Bristol ME Support Group for their position on this conference and to enquire what action they might be taking.

Response from Simon Lawrence, Chair The 25% ME Group

Simon Lawrence says that unfortunately he only recently became aware of this conference through the grapevine and that this was probably mainly due to his own ill-health. The 25% Group have therefore no arrangements in place to make a statement concerning this and have been unable to campaign because of the lateness.

 

Response from Jane Colby, Executive Director The Young ME Sufferers Trust

Jane Colby says that The Young ME Sufferers Trust has been liaising with the RSM about redressing the problem of these conferences in the future; that the Trust has made its position clear that the speakers who are taking part will need to be balanced by different speakers in another medical conference. With regard to the Bristol Conference, Ms Colby says that she had got the impression that another demo* was being organised but that it now seems that this may not be the case after all. However, the Trust’s position is the same as it was for the London conference, because the Trust expects the same messages to be expressed by these speakers.

*Ed No announcement had been made that a demonstration of any kind had been organised for Bristol. A notice had been circulated by Gus Ryan on some internet forums and e-lists asking for anyone interested or who knew of anyone who would be interested in organising / attending a gathering outside the conference to contact him.

I will be commenting on these responses after I have heard back from The ME Association and Invest in ME.

Bristol RSM Conference: Where is the action?

Bristol RSM Conference: Where is the action?

Before the controversial RSM’s London CFS Conference had taken place in April, it was already known that a regional one day conference on CFS had been scheduled by the Royal Society of Medicine Wessex Region for Bristol, for 18 September.

This conference takes place tomorrow and once again is intended for medical and allied health professionals, only.

I had been alerted to this event by Neil Riley, Chair of the ME Association Board of Trustees, on 13 April.  The ME Association has the conference listed on its “Diary Dates” pages.

I flagged up this regional conference in a posting on Read ME UK Events site on the same day; the site received just under 3000 hits during the month of April, alone.

Since then, I have flagged up this Bristol conference several times on both Read ME UK Events and ME agenda site.

I have also put out a copy of the Agenda for tomorrow’s conference on the Co-Cure mailing list together with the Agenda for a conference on Chronic Fatigue Syndrome in Children and Young People by the Royal College of Psychiatrists South West Division Training being held in Devon, on 24 October.

Dr Esther Crawley, who was a member of the NICE Guideline Development Group, will be presenting at both the RSM’s Bristol conference and the Royal College of Psychiatrists conference.

See: http://meagenda.wordpress.com/2008/09/15/two-uk-regional-cfs-conferences-in-september-and-october/

In the run up to the RSM’s London CFS Conference, I had launched a Postcard Campaign to help raise awareness of the conference itself and to encourage the ME community to write in to the RSM and express their concerns. This was just one of a number of initiatives around this conference.

I have already mentioned, here, that unfortunately due to personal circumstances I have not been in a position to undertake a Postcard Campaign for the Bristol CFS Conference.

Given the interest in the RSM’s London conference in April, the ME community and the organisations which represent our interests have been notably subdued about the conference taking place tomorrow.

Although this is a regional conference it has implications for all of us in the UK, and internationally. There are many of us who consider that the influence of Professor Peter Denton White is equal to that of Professor Simon Wessely, and Professor White is giving the same presentation in Bristol that he gave in London, in April. There is also a presentation on behalf of NICE.

But as a regional conference, it has particular relevance to residents of the Bristol area for it is their medical professionals – their local GPs, medical trainees and allied health professionals – whose bums will be on the seats at UBHT Education Centre, tomorrow.

To the best of my knowledge no position statement has been issued by the Bristol ME Support Group whose members are amongst those for whom this conference has most relevance.  On Saturday, I contacted the Bristol ME Support Group to ask what the Group’s position on this conference is, whether they had issued a position statement and whether the group were taking any action or had written to the media or to the RSM?

I’ve received no response so far on behalf of the group.

In March/April, AfME had issued a statement about Sir Peter Spencer’s participation in the London RSM Conference and this was followed by responses in the form of position statements from the ME Association, The 25% ME Group, The Young ME Sufferers Trust and Invest in ME. Full copies of all these positions statements were posted on both blogs and extracts were included in the “On a Postcard, please” Campaign Flyer. Paul Davis of RiME also provided a brief position statement specifically for inclusion in the Flyer.

Our patient organisations have also been notably muted on the issue of this Bristol conference.

Today I have contacted the ME Association, The Young ME Sufferers Trust, The 25% ME Group and Invest in ME to enquire whether any of these organisations have issued or intend to issue position statements on the Bristol conference or have made any arrangements for material to be handed out to conference attendees.

I will post any responses I receive as they come in.

YouTube video: The PM speaks on ME/CFS and MRC

YouTube: 10 Downing Street

Added 10 September 2008

Ask The PM – ME      A video of the PM talking about ME/CFS and MRC funding

This is a response from the PM to the Youtube video

Questions for the Prime Minister by miriampotter which was added on 11 July 2008

Miriam maintains a blog around ME issues at http://miriampotter.blogspot.com/

For readers on dial-up and cannot buffer YouTube, the video question that had been put to the Prime Minister, Gordon Brown, by Miriam Potter, in July, was this:

“First of all, I would like to thank you for giving me the opportunity to ask you some questions on health. I have ME and so my questions are about ME. My first question is: What is the government doing to help people who have ME and how are you educating doctors to understand more about ME and what are you doing to find out what causes it and to find the cure, now that’s three rather than one, so it’s three in one. Hope you can come back and let us know the answers to these questions. Thank you for your time, Goodbye.”

Video response from Mr Brown:

“I think ME or Chronic fatigue syndrome affects about one in three hundred people in the United  Kingdom, therefore it is a condition which we take very seriously indeed, and I think you will find that a lot of work has gone into this, over the last four years, in the National Health Service, where [refers to notes] £8.5 million pounds has been spent.

“At the same time, the Medical Research Council has made it clear that research into ME and Chronic fatigue syndrome is something that we’re taking very seriously indeed – it is a very big part of the research programme for the future and I hope that we’ll be able to report results in due course that will show not only that the research been done but that it has yielded results that will benefit you and many other people.”

 

Benefits and Work: September newsletter now available

The September Benefits and Work newsletter is now published

“Today we publish, exclusively for Benefits and Work members, the 218 page Employment and Support Handbook issued to doctors who are to carry out the new work capability assessments under employment and support allowance.

We haven’t had time to read it all ourselves yet, but it does contain some very valuable – and surprising – insights into how the DWP intend to apply descriptors in the new medical test…”

Sign up to receive copies of the free Benefits and Work monthly newsletters here

Copies of previous editions of the newsletter and access to selected articles and documents are available from the Benefits and Work website.

To become a member of Benefits and Work visit the membership page here

For a single payment of £18.95 claimants and carers receive access to regularly updated guides, factsheets, news items and other resources for the period of a year, plus membership of the Benefits and Works forum.