APPG on ME Minutes, 24 January 2012, and details of future work

March 2, 2012

As reported on 19 January, the APPG on M.E. was addressed by Prof Sir John Savill, CEO, Medical Research Council (MRC) on 24 January.

Professor Savill gave an overview of his background and told the group that he has a personal and professional interest in M.E.

He said that the landscape of M.E. research has changed as a result of NICE Clinical Guideline 53 on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, and that work is now being done to establish the pathogenesis, disease pathways and biomarkers of M.E.

Professor Savill said that he believed very strongly in working closely with patient organisations so that patients and representatives could have a say in the design of the studies. He finished by saying that he would like to counsel patience. It will take two to four years for this investment to bear fruit, but that the MRC would support the dissemination of the results.

Professor Savill then took questions from the Group.

Read the minutes in full.

Future work:

A delegation of members of the APPG on M.E. have been invited to meet Rt Hon Chris Grayling MP, Employment Minister, in his office at 5pm on 26th March, to discuss the problems faced by people with M.E. If you would like to comment on the issues you would like mentioned you can contact your local MP and ask him/her to attend.

An agenda and briefing information will be circulated in due course.

1 thought on “APPG on ME Minutes, 24 January 2012, and details of future work”

  1. Thanks for this – I’m still trying to digest – but appreciate the reference to the Sjorgen’s work. The biobank was mentioned by Sir Jimmy 😉 and I wondered to what extent it would play a role in these MRC sponsored projects or if that was an aside mentioned only in relation to the involvement of ‘severe’ patients?

    Danke 🙂

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