Friday, 16 June 2017

The ME Association to remain with the CFS/ME Research Collaborative | 16 June 2017

MEA Board of Trustees Statement

The MEA has no intention of leaving the CMRC at the present time. Trustees have considered the limited evidence from the recent lecture given by Prof. Crawley to the British Renal Society, and while we did not agree with the response given at the time to David Tuller – and said as much to the CMRC board – we feel we should remain a part of the collaborative and continue to support its aims where we can.

We believe the CMRC will continue to raise awareness and strive to attract greater funding for research into ME/CFS. We think that it offers the best chance of achieving success with the big funding bodies and with industry in the UK compared to even the most ambitious patient-oriented funding initiatives. And we would rather be able to have some influence on the quality and aims of such developments by remaining at the table than by trying to make ourselves heard from outside.

Belonging to a collaborative, which consists of a wide spectrum of clinical and research opinion on both cause and management, can be a very challenging and difficult task. This is particularly so when members disagree. But we believe it is important to remain an active part of the CMRC especially when it has a considerable influence over the direction that research in the UK is taking.

This also comes at a time when a number of important developments are taking place that involve the CMRC – for example:

  1. Design of the MEGA bioresource and discussion relating to related research studies with involvement of the Patient Advisory Group. In order for the MEA to reach a decision about whether or not we will support the MEGA project we need to be involved in the discussions about MEGA that occur within the CMRC.
  2. Follow up to a very important meeting that took place recently about future funding for ME/CFS research. This meeting included representatives from major funding bodies such as the MRC, NIHR, NIH (National Institutes of Health), pharmaceutical industry partners, and charity representatives. The topic was met with great enthusiasm by those who took part and the MEA would want to remain involved in future discussions with these funders.
  3. The 2017 CMRC research conference taking place in Bristol is aimed solely at biomedical research and increasing our understanding of this disease. This is the fourth CMRC conference and will feature experts on neurovirology, imaging and orthostatic intolerance. The MEA continues to believe that these conferences are important in bringing together experts from inside and outside of ME/CFS research and helping inform future research direction and we would not want to lose our influence in this area.

The ME Association will agree with colleagues on the CMRC Board much of the time and we will disagree at other times. We see this as being no different than when we engage with representatives of the Department of Work and Pensions (in relation to benefits) or NICE (in relation to the NICE guideline on ME/CFS). We will continue to do our best for people with ME/CFS and we feel the best way we can do this is through active engagement and participation.



from ME Association
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