Can the MRC PACE Trial be justified: Margaret Williams 17.12.09

A new article from Margaret Williams:

Shortlink:  http://wp.me/p5foE-2xK

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

Also available at:  http://www.meactionuk.org.uk/Can-the-MRC-PACE-Trial-be-justified.htm

Can the MRC PACE Trial be justified

by Margaret Williams

17 December 2009

In March 2003 the House of Commons Select Committee on Science and Technology produced its Report “The Work of The Medical Research Council” (HC 132) in which MPs issued a damning judgment on the MRC, lambasting it for wasting funds and for introducing misguided strategies for its research. The Select Committee had received seven representations about the MRC’s refusal to heed the biomedical evidence about ME/CFS. MPs found evidence of poor planning and of focusing on “politically-driven” projects that have diverted money away from top-quality proposals. The unprecedented attack was the result of a detailed probe into the workings of the MRC. In particular, MPs questioned why the MRC was content to support policies and projects that are likely to perpetuate such criticism.

Given that biomedical research, including gene research (which has shown that in people with ME/CFS, there are more gene abnormalities present than are found in cancer sufferers) has demonstrated that the psychiatrists who hold such sway at the MRC are comprehensively wrong about ME/CFS, nowhere could such criticism be more apposite than in relation to the PACE Trial.

Patients with ME/CFS and their families are in despair, because no-one in authority in the UK seems to be listening: as Mike O’Brien MP, Minister of State for Health, made plain at the APPGME meeting on 2nd December 2009, Ministers can no longer tell agencies of State what to do. This apparently means that, no matter what conclusions are arrived at or what recommendations are made or what evidence is put before a Minister, the Minister concerned can deny having any power to implement change. The Minister himself is reported to have said that he could not require the MRC to undertake research in any specific field, nor could he require Primary Care Trusts to follow Ministerial command. As far as ME/CFS is concerned, it seems that there is nothing the Government can – or will – do about the current situation.

It is apparent that the Government feels no duty of care towards those whose life has been devastated by ME/CFS, a situation that is borne out by Professor Stephen Holgate’s confirmation at the Royal Society of Medicine Meeting on 11th July 2009 (Medicine and me; hearing the patients’ voice) that the Government will not permit integrated research into ME/CFS.

This can only mean that the influence of the Wessely School over the lives of people with ME/CFS will continue and that their tactics of denial will remain unchallenged, no matter what the calibre of the biomedical evidence showing them to be wrong. As people recently drily commented on an ME group, those tactics include:

“load up your committees with your biased friends and pretend they are offering a fresh look; give really negative scorings to biomedical applications; try to stop biomedical papers getting published in the better known journals; make sure to keep on publishing psychiatric rubbish to bias the general medical population and scientific community against any other explanation, and give the impression that CBT/GET is all that is needed i.e. no need to waste all that money on silly biomedical projects” (LocalME@yahoogroups.com 6th December 2009) and

“ensure you use the sketchiest diagnostic criteria you can get away with; wherever possible, avoid seeing / talking to patients at all; never discuss / involve the severely affected; avoid using objective outcome measures; rotate the name of lead authors on papers and ensure you include plenty of reference papers from your psychosocial mates….” (LocalME@yahoogroups.com 7th December 2009).

As others have noted, the strategy is (1) to ignore ME; (2) to ensure that CFS is seen as a problem of false perception, then (3) to reclassify “CFS/ME” as a somatoform disorder (Co-Cure NOT:ACT: 12th January 2008), which is far removed from the reality of ME/CFS, the CNS dysfunctions of which are described by Dr Byron Hyde as being caused by “widespread, measurable, diffuse micro-vasculitis affecting normal cell operation and maintenance….The evidence would suggest that ME is caused primarily by a diverse group of viral infections that have neurotropic characteristics and that appear to exert their influence primarily on the CNS arterial bed” (ibid).

Patients and their families, many clinicians and researchers are well aware of such strategies and tactics but – so powerfully has the Wessely School myth about ME/CFS been promulgated – have been unable to halt them.

As Dr Jacob Teitelbaum reported, the XMRV virus study clearly documents that (ME)CFS is validated within the mainstream medical community as a real, physical and devastating illness, “again proving that those who abuse patients by implying that the disease is all in their mind are being cruel and unscientific…Though the economics may cause a few insurance companies to continue to unethically deny the science, so they can avoid paying for the health care and disability costs they are responsible for, this research should speed up understanding of the illness. Meanwhile, for those with the illness, their families and their physicians, it is now clear that this is a real and devastating illness” (Co-Cure RES: 4th December 2009).

There can be no doubt that, for patients with ME/CFS as distinct from those suffering from chronic “fatigue”, neither CBT nor GET is effective, otherwise everyone would by now be cured.

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

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

Ed: Related links:

National Archives site

If you go to these three URLs, below, scroll each page for content and then open all the links under “Context” on each of the three parent pages, and their child pages, there is information about the nature of some of the material archived:

http://www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATID=7769707&CATLN=6&Highlight=&FullDetails=True&j=1

http://www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATID=7798595&CATLN=6&Highlight=&FullDetails=True&j=1

http://www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATID=-5475665&CATLN=7&Highlight=&FullDetails=True&j=1

———————–

http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.htm  

http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.pdf

or open MS Word document here:  The MRC secret files on ME (v2)

(Ed: Note that the font size of this document has been increased from that of the original, as supplied, and therefore page numbers will not correspond with those of the PDF.)

Permission to Repost

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

Margaret Williams

10 December 2009

It is an established fact that the MRC has a secret file on ME that contains records and correspondence since at least 1988, which, co-incidentally, is about the time that Simon Wessely began to deny the existence of ME. The file is held in the UK Government National Archives at Kew (formerly known as the Public Record Office) and was understood to be closed until 2023, but this closed period has been extended until 2071, at the end of which most people currently suffering from ME will be conveniently dead:

As one puzzled ME sufferer recently noted: “why on earth have a 73 year embargo on these documents on an illness where a load of neurotic people, mostly women, wrongly think they are physically ill  ill?”

http://www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATID=-5475665&CATLN=7&Highlight=&FullDetails=True&j=1

(MEActionUK@yahoogroups.com; 14th October 2009)

The MRC’s secret files on ME/CFS are closed (ie. unavailable to the public) for an unusually lengthy period of 83 years. The standard closure period is 30 years but, as in the case of these files on ME/CFS, the standard closure period may be extended.

The 30-year rule usually applies to documents that are exempt from release under a Freedom of Information Act (FOIA) request and include, for example, documents concerning the formulation of government policy, documents related to defence, to national security, to the economy, and documents that are considered very confidential.

It may be recalled that during the life of the Chief Medical Officer’s Working Group on ME/CFS (1998-2002), lay members were ordered not to discuss the deliberations and were even threatened with the Official Secrets Act, for which no explanation was proffered. A letter dated 16th June 2000 from Mrs Helen Wiggins at the Department of Health NHS Executive Headquarters in Leeds was sent to lay members of the Working Group; this letter stressed that it had become increasingly important that any documents or information, in whole or in part, that might contribute to the report must be kept confidential and to this end, members of the Working Group might be compelled to sign the Official Secrets Act. This was followed up by a letter dated 23rd October 2000 from Lord Hunt of Kings Heath, then Parliamentary Under Secretary of State at the Department of Health (ref: POH (6) 5380/83), confirming that the information held by the Working Group might in certain circumstances indeed be covered by the Official Secrets Act.

If the psychiatric lobby which dominated that Working Group was so confident that it was correct about ME/CFS, why the need to force the suppression of opposing views by resorting to threats of prosecution under the Official Secrets Act in a Working Group that had nothing to do with State security but was supposed to be acting simply in the best interests of sick people? This was in marked contrast to the “Key working principles” set out in the first Briefing Note of March 1999, which stated: “The Group must have maximum ‘transparency’ ie. as much information about its activities to be distributed as possible to all potential interested parties”.

One can but wonder how the consideration of ME/CFS could rank as a state secret and of what, precisely, was the Department of Health so afraid that it even considered the use of such draconian powers? For the record, Mrs Wiggins was replaced by Robert Harkins and it was he who sent the letter dated 25th May 2004 (ref: TO1056746) in which he stated that the then new centres for CFS “will be headed up exclusively by psychiatrists” , which was deemed to be more evidence of Government policy on “CFS/ME”.

People wishing to access documents archived at Kew are able to make an application to access documents that are not redacted or closed, but the procedure is lengthy. Prior notificaton and advance booking are required; people must remove their coats/jackets and leave them, together with personal possessions including handbags, in a locker with a see-through door for which a numbered key is provided; proof of identity is mandatory and every person is newly photographed on arrival.

Legitimate access has been obtained to some of these archived documents about ME/CFS and they make interesting reading, for example…

Read on here:

http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.htm  

http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.pdf

or open MS Word document here:  The MRC secret files on ME (v2)

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

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

WordPress Shortlink for this post: http://wp.me/p5foE-2qT

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

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

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006522

TEXT version

MRC CFS/ME Expert Group

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

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

In attendance:

Professor Stephen Holgate (University of Southampton – Chairman)
Professor Philip Cowen (University of Oxford)
Dr Esther Crawley (University of Bristol)
Professor Malcolm Jackson (University of Liverpool)
Dr Jonathan Kerr (St George’s University of London)
Professor lan Kimber (University of Manchester)
Professor Hugh Perry (University of Southampton)
Dr Derek Pheby (National CFS/ME Observatory)
Professor Anthony Pinching (Peninsula Medical School)
Dr Charles Shepherd (ME Association)
Sir Peter Spencer (Action for ME)

MRC
Dr Rob Buckle
Dr Joanna Latimer (Secretariat)

1. Chairman’s welcome, introduction & apologies

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

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

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

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

3. Terms of Reference

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

4. Update on work of CFS/ME charities

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

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

5. Discussion on a CFS/ME research workshop

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

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

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

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

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

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

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

6. Date of next meeting

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

7. Close

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

Participant List: MRC CFS/ME Research Workshop

Received, today, from MRC Corporate Information and Policy under FOI:

Shortlink: http://wp.me/p5foE-2q2

PDF: participant list November 2009 (2)

23 November 2009

Please find attached a copy of the participants list for the workshop, as promised. This is also available on the MRC website at:

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006510

Yours sincerely

Rosa Parker

Rosa Parker | Corporate Information and Policy

Medical Research Council

20 Park Crescent

London

W1B 1AL

———————

Ed: Please note that this list has been amended since this posting was first published as it contained transcription errors. If you have reposted the earlier version of this list, elsewhere, please replace with this  corrected version.

MRC CFS/ME Research Workshop

19th and 20th November 2009

Participant list

Dr Neil Abbot – ME Research UK

Professor Jangu Banatvala – King’s College London

Dr Kate Bishop – National Institute for Medical Research

Dr Gijs Bleijenberg – Radbound University

Professor Tim Cawston – University of Newcastle

Professor Trudie Chalder – King’s College London

Dr Charlotte Clark – Barts and the London

Professor Philip Cowen – University of Oxford

Dr Esther Crawley – University of Bristol

Professor Maria Fitzgerald – University College London

Dr Suzanne Hagan – Glasgow Caledonian University

Dr Kirstie Haywood – University of Warwick

Professor Stephen Holgate – University of Southampton

Professor Jim Horne – University of Loughborough

Dr Jonathan Kerr – St George’s University of London

Professor Paul Little – University of Southampton

Dr Samuele Marcora – Bangor University

Professor Chris Mathias – Imperial College London

Professor Paul Moss – University of Birmingham

Professor Rona Moss-Morris – University of Southampton

Dr Luis Nacul – London School of Hygiene and Tropical Medicine

Professor Julia Newton – University of Newcastle

Dr Derek Pheby – ME Observatory

Professor Anthony Pinching – Peninsula Medical School

Professor Chris Ponting - MRC Functional Genomics Unit

Professor Alan Rickinson – University of Birmingham

Dr Charles Shepherd – ME Association

Dr Vance Spence – ME Research UK

Sir Peter Spencer – Action for ME

Dr Jonathan Stoye – National Institute for Medical Research

Professor Chris Ward – University of Nottingham

Professor Peter White – Barts and the London

Mary-Jane Willow  – Association of Young People with ME

MRC Head office Staff

Dr Rob Buckle
Dr Jo Latimer

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

MRC CFS/ME Research Workshop

The MRC held a small research workshop for CFS/ME on the 19 and 20th November 2009. The agenda, papers and meeting participants can be found at the links below

Agenda: MRC CFS/ME Research Workshop
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006511

List of participants of the MRC CFS/ME Research Workshop
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006510

[Open PDF at top of post]

[PDF Format]   Open here: CFSME Literature Review Jan 2004 – Jun 2009[1]   [3MB]

Papers circulated prior to the meeting:

CFS/ME Literature review Jan 2004 – June 2009
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006509

Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome: Lombardi VC et al. Science. 2009 326:585-9

Note of the Workshop to follow

—————

[Ed: Note this is an unofficial note of the procedings prepared by Dr Charles Shepherd MEA, not the official MRC note of the Workshop.]

MRC Expert Group on ME/CFS: Brief Notes on Research Workshop held on 19/20 November 2009

Monday, 23 November 2009 16:42

The Medical Research Council’s Expert Group Workshop on ME/CFS Research took place on Thursday 19 November and Friday 20 November at Heythrop Park, Oxford. Around 30 researchers and clinicians from various disciplines, plus MRC staff, took part.

Besides those with existing expertise in this area, there were others present who were new to the subject and consequently brought fresh thinking to the issues and questions being discussed.

PRESENTATION SUMMARIES AND SLIDES

The MRC will be publishing summaries and slides from all the main presentations that were given – once this information has been checked and approved by those who gave the presentations.

I understand that the MRC will also be publishing a full list of everyone who attended this meeting.

The MEA website will carry a suitable link in our news box when all this information appears on the MRC website.

PRESENTATIONS

There were presentations followed by discussions on the following key topics on the first day:

Epidemiology and clinical phenotyping – Dr Esther Crawley
Autonomic dysfunction – Professor Julia Newton
Sleep – Professor Jim Horne
Pain – Professor Maria Fitzgerald
Neuropsychology – Professor Gijs Bleijenberg
Neuroimaging – Professor Phil Cowen
New technologies – Professor Chris Ponting
Immune system dysregulation and infection – Professor Tony Pinching
Virology – Professor Paul Moss

Although not covered by specific presentations, a number of other topics – including muscle abnormalities, mitochondrial dysfunction, post-mortem and tissue bank research – were referred to, along with the way in which patients under the ME/CFS umbrella should be defined and selected to take part in research studies.

The second day consisted of group discussions which considered the following topics:

capitalising on current issues and UK strengths in the area of ME/CFS research
the use of new technologies
partnership models
research prioritisation
Each group then reported back to facilitate a whole group discussion.

The meeting closed with a summing up and an explanation of the next steps forward from Professor Stephen Holgate, Chair of the MRC Expert Group.

BACKGROUND INFORMATION

Background information provided by the MRC included a 351-page literature review of the current state of ME/CFS research and paper copies of the XMRV paper from Science.

The MEA provided copies of the latest edition (October 2009) of our guidelines – ME/CFS/PVFS – An Exploration of the Key Clinical Issues -on research, clinical assessment and management.

INFECTION AND XMRV:

There was a great deal of lively discussion relating to all aspects of XMRV infection – ie existing research findings; replication of the preliminary results from research groups both here and abroad; implications for blood donation; possible pathogenicity of the XMRV infection; future research priorities – during the formal sessions, over dinner, and well into the night on Thursday. We were fortunate in having four researchers present who are all involved with taking this research forward and are well aware of what is happening both here and abroad.

It was made clear to all the researchers present who are involved in retroviral work that the MEA Ramsay Research Fund has money available if this is required urgently to help fund any immediate or short term funding requirement. The MEA is also very willing to look at more major grant proposals relating to XMRV.A link to the latest MEA summary on XMRV can be found on the home page of the MEA website and we will be updating this information later in the week. The website also has details of our exchange of correspondence with Sir Liam Donaldson, Chief Medical Officer, on the subject of blood donation.

The All Party Parliamentary Group on ME has XMRV on the agenda when it meets at the House of Commons on Wednesday 2 December. The Rt Hon Mike O’Brien, Minister of State (Health Services) at the Department of Health, will be present to deal with the main item on the agenda: the APPG Inquiry into NHS Services for people with ME/CFS. This meeting is open to the public – more details re time and venue can be found on the MEA website. If you are intending to come to the meeting please check the MEA website the day before because the House of Commons venue can change at short notice. And do allow at least 30 minutes from arriving at the House of Commons to get through security and find directions the right room.

The Countess of Mar’s Forward ME Group also has research on the agenda when they meet on Tuesday 24 November at the House of Lords.

The MRC workshop also discussed other infections, in particular herpes virus infections, that have been implicated in ME/CFS.

AUTONOMIC DYSFUNCTION: PROFESSOR JULIA NEWTON

Professor Julia Newton and her team at the University of Newcastle, who are working on autonomic dysfunction in ME/CFS, have just had a new paper published in the European Journal of Clinical Investigation. The paper describes an interesting practical approach to the management of symptoms relating to orthostatic intolerance. Ref: Sutcliffe K et al. Home orthostatic training in chronic fatigue syndrome – a randomised placebo-controlled feasibility study. EJCI, November 12 2009. If we can obtain an abstract of this EJCI paper it will be placed on the MEA website news box. The MEA Ramsay Research Fund is currently funding another study at the University of Newcastle to examine muscle energy metabolism in ME/CFS patients. More information can be found in the research section of the MEA website.

MRC: NEXT STEP FORWARD

There are a number of ways in which the MRC can help with a research agenda, in addition to providing finance for good new research proposals. So the next step forward in relation to ME/CFS will be for the MRC Expert Group to meet early in 2010 to discuss the content of this research workshop, along with the conclusions and recommendations that were produced during further discussion on defining research strengths and priorities on the second day.

Personal note

On a personal note I would like to add that while I have been extremely critical of the MRC in the past I believe that Professor Stephen Holgate, who is leading this ME/CFS initiative, is genuinely determined to take forward the biomedical research that the patient population, along with many doctors and researchers, believes is so vital if we are going to find effective forms of management for ME/CFS.

Membership of MRC Expert Group on ME/CFS Research

Professor Stephen Holgate (Chairman)
Professor Jill Belch
Professor Philip Cowen
Dr Esther Crawley
Professor Malcolm Jackson
Dr Jonathan Kerr
Professor Ian Kimber
Professor Hugh Perry
Dr Derek Pheby
Professor Anthony Pinching
Dr Charles Shepherd
Sir Peter Spencer
Dr Rob Buckle (MRC)
Dr Joanna Latimer (MRC)
Dr Charles Shepherd
Hon Medical Adviser, ME Association

23 November 2009

MRC Research Workshop: Final Agenda

MRC Research Workshop: Final Agenda

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

As I was in contact with MRC Corporate Information and Policy, today, I requested confirmation of the presenter on “Fatigue” at today’s meeting which had been listed on the Agenda as “tbc”.

I have been advised that it was not possible to secure a speaker for the proposed session on Fatigue, but that an Open Session was added towards the end of the day. 

A final copy of the Agenda was provided for my information. I am advised that this will be published on the MRC website, early next week.

Note that this is the 3rd Agenda that has been issued (on 19 November) and it supercedes the two previous files posted on this site and elsewhere.

Final Agenda provided on 19 November in PDF format: Final Agenda MRC CFS ME Workshop 19- 20 November 2009

MRC: Withholding List of Participants for MRC CFS/ME Research Workshop

MRC: Withholding List of Participants for MRC CFS/ME Research Workshop until after the event has taken place

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

Further correspondence, today, with MRC Corporate Governance and Policy.

Link back

MRC CFS/ME Workshop: Revised Agenda and response re request for List of Participants: http://wp.me/p5foE-2nu

Declaration of interests for the CFS/ME Expert Group: http://wp.me/p5foE-2nM

To: Rosa Parker, Head Office MRC
Sent: Tuesday, November 17, 2009 1:38 PM
Subject: Re: Freedom of Information Request: CFS/ME multi-disciplinary panel November Conference and Workshop

17 November 2009

Dear Ms Parker,

Thank you for your responses of 11 and 13 November 2009 which included a PDF copy and revised PDF copy of the Agenda for the forthcoming MRC CFS/ME Expert Group Research Workshop due to take place at the end of this week, on 19-20 November.

Thank you also for the provision of other information in response to three further questions that I had raised with you on 6 November 2009.

I have appended the two emails in which this information had been requested.

One request which remains unfulfilled and which had been requested under the Act, on 19 October, is

“2] A list of participants for this event”

Your response (13 November) has been:

“The MRC is intending to publish a list of participants for the workshop on the 19th and 20th November alongside the note of the meeting. This will be published on our website as soon as it is available following the workshop. I will send you a link to this information as soon as it is available.”

I am not satisfied with the decision to withhold the information requested under the Act until some point after the Workshop has taken place.

I am not satisfied that this part of my request for information has been handled properly because no reason(s) has been given for the decision not to provide this information to me under the Act prior to the Workshop taking place.

It is my intention to lodge a formal complaint through the complaints system, for which you have provided various options and contact details.

In order to take this forward, I should be pleased if you would provide the following:

a) An acknowledgement of receipt of this communication.

b) A reference number for my original request for information under FOIA of 19 October 2009.

c) The reason(s) for the decision not to provide this information under the Act at this point in time.

d) The specific clause(s) from the Act under which this decision has been taken.

Sincerely,

etc

[Previous correspondence appended]

MRC CFS/ME Workshop: Revised Agenda and response re List of Participants

MRC CFS/ME Workshop: Revised Agenda and response re request for List of Participants

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

I have received, this afternoon, a further response from Ms Rosa Parker, MRC Corporate Information and Policy, in connection with a request for information under FOIA.

See previous posting: http://wp.me/p5foE-2mj

Ms Parker’s response follows.  Note that the MRC is choosing not to release the List of Participants until after the Workshop has taken place.  On Monday, I shall submit an Appeal.

Readers may recall that the List of Participants for the November 2006 AfME/MRC joint Research Summit was obtained by ME agenda under FOI in December 2006.

See: The AfME Research Summit and the list they did not want us to see

Why is the MRC not prepared to release the List of Participants prior to this Workshop?

—————–

Revised Agenda in PDF format: Revised Agenda – MRC CFSME Workshop

The MRC’s response, today, 13 November:

Further to my email of 11 November 2009 I am now able to reply with regard to your request for:

2] A list of participants for this event

The MRC is intending to publish a list of participants for the workshop on the 19th and 20th November alongside the note of the meeting. This will be published on our website as soon as it is available following the workshop. I will send you a link to this information as soon as it is available.

I have also attached a slightly revised copy of the agenda as there was a small typographical error in the version I sent to you on the 11th of November.

I hope that you are satisfied that your request has been handled appropriately. If not, you may appeal using the MRC’s complaints procedure.

Details are on the MRC website at: 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,
Rosa Parker

Rosa Parker | Corporate Information and Policy
Medical Research Council
20 Park Crescent
London
W1B 1AL

Benefits and Work: Hundreds of claimants unjustly imprisoned

Benefits and Work: Hundreds of claimants unjustly imprisoned

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

And update from Benefits and Work’s Steve Donnison  |  12 November 2009

In this newsletter we look at the shocking evidence provided by a welfare benefits expert that every year hundreds of claimants are being unjustly imprisoned because of misleading evidence provided to criminal courts by the DWP.

It’s not possible to prove whether the DWP is providing inaccurate evidence deliberately or whether it is solely through negligence. But, given the department’s desire to get as many tabloid headlines as possible about claimant fraud, many people will reach their own conclusions.

And still on the subject of potentially misleading evidence, we revisit the issue of taping your Atos benefits medical. Regular readers will know that Atos insist that if claimants want to record their examination they must agree to provide, at their own huge expense, a sound engineer and a tape machine capable of making two tapes at the same time.

We discover what happened when one of our members did exactly that.

We couldn’t leave the topic of misleading statements without revisiting the issue of DLA and the proposed National Care Service. Our suspicion that health secretary Andy Burnham’s apparent reassurance about DLA last month left claimants aged 65 and over still under threat is looking increasingly accurate. Burnham failed to answer repeated questions on the subject fired at him by MPs during a debate on the National Care Service.

What’s more, an undertaking to reveal full costings of the new service before the end of the consultation period has now been broken, leaving charities threatening to use the Freedom of Information Act.

That same consultation ends tomorrow. If you haven’t already contributed to the mauling the government’s proposals are receiving on the Big Care debate website, this is your final chance to do so.

Good luck,

Steve Donnison

More secrecy around National Care Service
http://www.benefitsandwork.co.uk/news/latest-news/1123-more-secrecy-around-national-care-service
The government has gone back on a pledge to reveal the true cost of its proposed National Care Service before the green paper consultation period ends on November 13th, prompting further suspicions about the honesty of the whole consultation process.

Burnham refuses to answer DLA questions
http://www.benefitsandwork.co.uk/news/latest-news/1122-burnham-refuses-to-answer-dla-questions
Health secretary Andy Burnham repeatedly failed to answer questions about disability living allowance for people aged 65 and over during a commons debate on the care green paper last week.

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Find out how to join Benefits and Work and get instant access to all our downloadable claims and appeals guides, DWP materials, members news items and more.
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Hundreds of claimants unjustly imprisoned
http://www.benefitsandwork.co.uk/news/members-only-news/1134-hundreds-of-claimants-unjustly-imprisoned
Many hundreds of claimants are unjustly imprisoned every year a welfare benefits expert has told MPs . In one case he assisted with, a woman prosecuted for a £47,000 overpayment had in reality under-claimed benefits.

Getting permission to record your medical
http://www.benefitsandwork.co.uk/news/members-only-news/1133-getting-permission-to-record-your-medical
The issue of tape recording benefits medicals is one that frequently comes up in our discussion forums. Atos, the company that caries them out, insists that if you wish to do so you must provide a professional operator and a properly calibrated tape machine that records two copies of the examination at the same time. Deeply unreasonable and unaffordable as these conditions are, what happens when a claimant actually meets them?

(c) 2009 Steve Donnison. All rights reserved

Agenda: MRC CFS/ME Research Workshop 19-20 November 2009

Agenda: MRC CFS/ME Research Workshop 19-20 November 2009

WordPress Shortlink: http://wp.me/p5foE-2mj

I have received the following response, today, from Ms Rosa Parker, Corporate Governance and Policy, Medical Research Council under the FOI Act:

 Workshop AGENDA in PDF format:  Agenda MRC CFS/ME Workshop 19 – 20 November

I had asked for:

1] A copy of the Agenda for this event.

2] A list of participants for this event

3] Clarification of whether the CFS/ME Expert Group intends to continue to hold meetings beyond the Conference / Workshop in November.

Ms Parker’s response:

“The agenda has now been finalised and circulated, a copy is attached. We are still in discussion with colleagues regarding the participants list and will respond to this part of your request in due course. You also asked whether the Expert Group intends to hold any further meetings following the Workshop; I can confirm that the Expert Group does intend to hold a meeting following the workshop. The dates of this meeting have yet to be confirmed, the note of this third meeting will be published on our website in due course.

“You have now also asked a couple of additional questions. You have asked whether a note or report of the workshop will be available. I can confirm that a note of the workshop will be published on our website, but I am not able to confirm the timescale at this stage. You have also asked about the minutes of the second meeting of the Expert Group. The minutes are currently being finalised and as soon as they have been approved they will be made available on our website, at the moment we expect this to be within the next month.”

“I hope that this information is helpful, and I will be in touch regarding the participants list in due course.”

Rosa Parker
Corporate Governance and Policy, Medical Research Council

11 November 2009

Link back

MRC Two day Research Workshop 19 and 20 November 2009

WordPress Shortlink: http://wp.me/p5foE-2bS

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

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

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

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

PDF: CFS/ME Expert group membership

Term of Reference can be opened in PDF format here:

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

or go to MRC site for full article and files:

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis 

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

RiME: Newsletter No. 11

Paul Davis of RiME has recently issued a Newsletter.

WordPress Shortlink: http://wp.me/p5foE-2iE

RiME Newsletter No. 11

Permission to Repost

Campaigning for Research into ME (RiME)  www.rime.me.uk

RiME Newsletter No. 11 is now available. Items include:

ME: Activism + Organisation: The Need for Change

MPs Referendum on ME Research

NHS Services Inquiry: RiME Bank of Evidence

ME Association – Running with Hare and Hounds?

What does Lady Mar stand for? Forward-ME Condemned

MRC – Freedom of Information

Lightning Process

Conservatives + Lib Dems – latest.

If you want a copy posted to you, please send SAE plus 4 unused postage stamps (the few who have sent contributions over last year will get it anyway).

In order to survive, RiME depends on contributions from its supporters. We welcome unused postage stamps.

Paul Davis

10 Carters Hill Close, Mottingham, London, SE9 4RS   rimexx@tiscali.co.uk  

www.rime.me.uk