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All Party Parliamentary Group on M.E.
Vice-Chair: Annette Brooke MP
Secretary: John Leech MP
Treasurer: Martin Vickers MP
Meeting held Wednesday 16th February at 1.30pm.
W1, Westminster Hall
Annette Brooke MP (Chair)
Ian Swales MP
Russell Brown MP
Harriet Baldwin MP
Steve McCabe MP
David Amess MP
Julian Sturdy MP
Bernard Jenkins MP
Countess of Mar
Professor Stephen Holgate (University of Southampton)
Parliamentary office representatives in attendance
Paul Humphries (From the office of Sheryll Murray MP)
Rachel Andrews (From the office of Anne Marie Morris MP)
Tom Fairweather (From the office of Bernard Jenkins MP)
Sophie Tredinnick (From the office of Peter Luff MP)
Wendy Austin-Giddings (From the office of Adam Holloway MP)
Carys Williams (Cardiff University)
Secretariat in attendance:
Tristana Rodriguez, Action for M.E.
Dr Charles Shepherd, M.E. Association
Sir Peter Spencer, Action for M.E
Sir Robert Smith MP
Tom Brake MP
1. Welcome by the Chairman
2. Speaker: Professor Stephen Holgate, Chair of Medical Research Council (MRC) Expert Group on M.E.
Professor Holgate gave a brief history of M.E. research, and explained that scientific peer reviews had tended in the past to involve mainly those with a background in neuroscience. This had led to research that did not reflect the views of those who believed that the condition has an organic cause. Just over two years ago the MRC had set up an expert group which included representatives from patient charities. The group reviewed all the relevant research that had been published in the previous few years and then held a workshop attended by invited experts in a wide range of key specialisms. The aim was to identify all promising lines of research with an emphasis on new technologies and new scientific talent that could be brought into the field of CFS/M.E. research.
The findings of the workshop were subsequently debated by a small team chaired by Professor Hugh Perry of Southampton University. This had resulted in an agreed list of priorities for CFS/M.E. research in the UK which was published on the MRC website. The Strategy Board of the MRC then decided to earmark some funds specifically for research into the causes of CFS/M.E. Final approval had been delayed by last year’s Government spending review but an allocation of £1.5M was finally announced in January 2011. An MRC call for proposals for research into CFS/M.E. was imminent (post meeting note:- MRC announced this on their website 22 Feb 11). The MRC will be considering applications with co-applicants from outside the field of M.E., and with a strong emphasis on the underlying mechanisms which cause this disease.
Professor Holgate said that the scheme could be seen as a pilot to see whether sufficient intellectual energy could be generated to relaunch this specialist area of research. If sufficient high quality applications are received, a case can be made to the MRC Strategy Board to release more funding.
Professor Holgate then invited questions from the floor:
Key questions included:
Ian Swales MP asked whether Professor Holgate was happy that enough emphasis will be placed on the viral causes of M.E.
Professor Holgate said that it would be deeply shocking if applications were not received from virologists.
The Countess of Mar asked Professor Holgate’s feeling about a possible mitochondrial cause of M.E.
Professor Holgate said that they are dealing with a spectrum of conditions which need to be phenotyped. This would cast light on the causes.
The Countess of Mar commented that there are thousands of peer reviewed papers on CFS. Why repeat the same work?
Professor Holgate said that before the MRC held its expert workshop on M.E., a literature review of research was done. Most existing work is of low quality and has not been replicated.
The Chair asked what MPs can do to support the work of the Expert Group.
Professor Holgate said that it would be helpful if MPs would write to the Chair of the MRC in support of M.E. research.
The Chair agreed to do this on behalf of the Group.
3. Minutes of the last meeting
The minutes of the meeting held on 9 Nov 2010 were approved by the group as a true record.
4. Professor Harrington’s report of the Independent Review of the Work Capability Assessment.
Dr Charles Shepherd reported the activities of a working group and advised the Group of a Statutory Instrument due to come into force on 28 March 2011 which would impose the recommendations of the internal review of the Work Capability Assessment (WCA).
The Countess of Mar said that she had tabled a motion to annul the statement and hoped her colleagues from the House of Commons would do the same.
The Chair said that she would submit a parliamentary question on the subject.
5. Programme for APPG work for 2011
The Group noted the work plan that was proposed for 2011. The chair said that Rt. Hon. Paul Burstow MP had agreed to meet the officers of the Group on 10 May 2011, 3.00pm.
6. Welfare Reform – Introduction of Personal Independence Payment to replace Disability Living Allowance
The Group noted the areas of concern that had been raised by people with M.E. during the course of the consultation on Government proposals to introduce the new Personal Independence Payment to replace Disability Living Allowance. The Countess of Mar said that the new process would apply to new claimants from 2013 and that existing claimants will gradually be moved over to the new system.
Sir Peter Spencer said that there will be an assessment process and there are concerns about how this will impact on people with fluctuating conditions.
6. Date of next meeting
Date to be decided.
The officers of the APPG only will meet with Rt. Hon Paul Burstow MP, Minister of State for Care Services on 10 May 2011.
7. Any other business
The Countess of Mar told the Group that Jane Colby of the Tymes Trust has made her aware of a child who has all the symptoms of M.E. but has been put under child protection measures and referred to a psychiatrist. There are also a number of cases where the Mental Capacity Act is being used to admit people with M.E. to psychiatric hospitals.
In response to a question from the chair, the Group decided to invite other national charities to attend meetings. The Secretariat would draft the appropriate letters to the Association of Young People with M.E. (AYME), Invest in M.E. and Tymes Trust.
The Chair called the meeting to a close.