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Forward ME group: Minutes from meeting 25th October 2016

Discussion in 'General ME/CFS News' started by AndyPR, Dec 5, 2016.

  1. AndyPR

    AndyPR Senior Member

    http://www.forward-me.org.uk/25th October 2016.htm

    Speakers were Dr Ian Gargan, Chief Medical Officer of Capita, UK and Northern Ireland and Rebecca Papanicolas, Communications and Stakeholder Manager, Capita. Also discussed was PACE and MEGA and a review of the ME/CFS clinics in the UK.
  2. slysaint

    slysaint Senior Member

    PACE Trial and NICE
    5.1 Members discussed the release of the raw data of the PACE Trial. Sound analysis was now necessary to determine whether it was flawed. Jane Colby asked whether the matter would be discussed in the House of Lords. The Chairman confirmed that it would but she would need to wait until a peer reviewed paper was published. Sue Waddle suggested it should be brought before the Public Accounts Committee, as the whole exercise had cost such a lot of public money. The Chairman said she would look into that too.

    5.2 Dr Charles Shepherd said we needed the re-analysis of the raw data that has now been released to be published in a reputable peer-reviewed journal. Dr Shepherd said he had been in touch with the person who had made the Freedom of Information request; a small group was putting together a paper but it would take time to prepare this paper and go through the process of submission, peer review, etc. So a paper was unlikely to be published before Spring or Summer next year. The Chairman said she couldn’t do anything until she had that paper.

    6. Research
    6.1 Dr Charles Shepherd outlined the proposed MEGA study. It was to be a study by the Epidemiology and Genomics Alliance. It had developed from Stephen Holgate’s call to make use of a number of recently developed areas of investigation including genomics, metabolomics, epigenetics etc. as they apply to ME/CFS. It would be a big data study involving a large number of people - 10,000 adults and 2,000 children - and the only way you could collect that number of patients would be through the ME/CFS clinics. The aim is to put a preliminary application in January. He had discussed with other members of the Research Collaborative (AFME and MERUK) and they agreed there was merit in the proposed study. However there was disquiet among the public, mainly because of the uncertainties about how patients would be selected, difficulties in accessing people with severe ME/CFS and the background of some of the researchers who are involved in the planning group.

    6.2 Sue Waddle said MERUK’s position was that not enough was known about the project yet. They could give qualified support but needed more detail. The Chairman proposed writing to Prof Holgate asking him to come and speak to us about it before the preliminary application is submitted – in November or December. This was agreed.

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