Minutes of the meeting held on

Wednesday 29 June 2011

 2.00 PM

HOUSE OF LORDS.

1. Present:

Margaret Mar – Chairman

Christine Harrison – BRAME

                        Bill Kent - ReMEmber

Janice Kent – ReMEmber

                        Charles Shepherd – MEA

                        Sue Waddle – MERUK

Tristana Rodriguez – Action for M.E.

Sir Peter Spencer – Action for M.E.

   Apologies:

                        Tanya Harrison – BRAME

Jane Colby – TYMES Trust

Mary-Jane Willows – AYME

Arlene Wilkie – Neurological Alliance    

 

2. Welcome from the Chairman

The Chairman welcomed the Group to the meeting.

The Group formally congratulated the Chairman on receiving 2011 Outstanding Achievement title in the eighth annual Dods Charity Champion Awards.

3. Speaker: Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, Sunderland University

Professor Hooper began by headlining three “Ts” of criticism of the PACE trial which were:

Other points Professor Hooper made included:

The slides from Professor Hooper’s presentation are available here [INS LINK]

3. Questions

Sir Peter Spencer cautioned against making allegations of fraud unless there was explicit evidence that data had been tampered with. His understanding was that the statistical work following the trial was done wholly independently. Nevertheless if there were deep rooted concerns about whether it had been analysed properly then there could be a case for asking for the raw data to be released in a form that would enable the data analysis to be done again by another independent source of statistical expertise.

 Dr Charles Shepherd said that the MEA has raised similar points to Professor Hooper regarding the PACE trial.

The Chairman told the Group that she has tabled a request for a short debate on PACE and its effect on patients.

Dr Charles Shepherd commented that the treatments which Professor Malcolm Hooper detailed were only supported by the opinion of some doctors. If the PACE trial was to be criticised it was important to look at the evidence base behind other treatments too.

4. Minutes of meeting held on 1 March 2011

The minutes were accepted by the Group as a true record.

5. DWP matters:

(i) DLA – PIP letter from Dr Bolton

The Group agreed that it was important to take the opportunity to work with the DWP when possible to highlight ways to improve the welfare system for people with M.E. Individual charities would forward details of any volunteers who were willing to trial the PIP assessment process to the DWP.

            (ii) ESA fluctuating conditions

Dr Charles Shepherd told the Group that Professor Malcolm Harrington has asked the Group on fluctuating conditions to continue working together to improve understanding within the DWP.

The Chairman said that she would ask Lord Freud whether a meeting could be arranged between herself, Lord Freud and Dr Shepherd.

Dr Shepherd told the Group that he has been invited to attend the next meeting of the Scrutiny Group

7. All Party Parliamentary Group

Sir Peter Spencer told the Group that a presentation by Dr Jane Colby and Mary-Jane Willows on Child Protection was well received by the APPG. There was general recognition that it was important for Tim Loughton MP, Children’s Minister, to attend a future meeting. The AGM was successful and 5 officers had been appointed for the Group. Annette Brooke MP has been elected to be the Chair and is working towards making the Group more inclusive. MERUK will be invited to be represented at future meetings.

8. Research

The Chairman told the Group that she had met with the Rt. Hon Stephen Dorrell MP, Chair of the Health Select Committee and she hoped that he would take an interest in M.E. treatment and research.

Dr Charles Shepherd said that:

9. NICE

 Charles Shepherd told the Group that NICE would not reconsider the guidelines on M.E. until 2013. Christine Harrison reiterated her strong belief that there should be a call for an urgent review of the diagnosis, management and the severely affected sections of the NICE Guidelines, particularly in light of the Peter White letter to the Lancet regarding the selection criteria for patients for the PACE Trial which excluded people with ME or CFS, which in turn called into question the validity of the evidence used by NICE. Professor ooper’s presentation supported thisHooper’s presentation supported this.

 

10. Any other business  

The Chairman said that she had invited the 25% Group to return to Forward M.E. as she believed they were an important part of the M.E community. The Group agreed.

The Chairman called the meeting to a close.