The UK ME/CFS Research Collaborative: ‘how can we not want any part of that?’ | 24 April 2013

There has been some comment as to whether The ME Association should have agreed to become a member of the CFS/ME Research Collaborative, which was launched on Monday 22 April 2013 at the Wellcome Collection in London.

The charity made the decision to join for the following reasons:

* We believe that far more biomedical research into the illness is required

* For research to occur, you need researchers who are interested in the illness and money to fund that research

* One of the principal objectives of the Collaborative is to foster research, develop research infrastructure and engage funders, such as the Medical Research Council, to fund it

* Never before have so many widely disparate organisations involved in the illness and in medical research come together with one purpose

* If we increase the number of researchers and we increase the funding then we have a much better chance of achieving what every person with ME wants – a treatment that will cure us

I was present at the launch on Monday and what inspired me most of all was the speech given by Professor Stephen Holgate. Stephen has been instrumental in promoting a Collaborative. He illustrated what a huge jump had been made in both research and funding into his own speciality, respiratory disease, following the launch some years ago of a Respiratory Disease Collaborative. Funding went from 3 million pounds a year to 12 million pounds and the number of research projects grew accordingly.

There were high quality presentations on a wide range of clinical and scientific topics including autonomic dysfunction, inflammation and the immune system, muscle abnormalities and sleep disturbance.

Over 100 UK researchers accepted the invite to attend and there were plenty of new and young researchers there as well. The press coverage in the The Times was extremely positive – concentrating on the new muscle research that was presented by Professor Julia Newton.

How could a charity like The ME Association stand on one side and say: ” No, we do not want any part of that”.

The Research Collaborative is a big tent covering a wide range of views on causation, definition, epidemiology and management. We believe it is far better to be inside the tent discussing and debating these issues – as happened during the discussion session on Monday – than sitting outside where we would not have a voice.

The ME Association will be monitoring closely what happens with the Collaborative and we shall not be slow to give constructive evaluations of what is done. Provided the Collaborative drives forward and promotes research into the biomedical causes of ME then we shall be in there, taking an active part and supporting its efforts. As someone, like you, with ME, I want to find a treatment for this illness. As Chairman of the ME Association, I will do everything I can to ensure this happens.

Neil Riley
Chairman, The ME Association


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