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

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

  1. Very few things are perfect, but having a Research Collaborative with lots of talented scientists who want to help us is a dream come true.
    OK, I don’t like the inclusion of of the psyco brigade but with the possibility of building on the work already done by the likes of Prof Newton, Dr Myhill and Dr Kerr, the future looks brighter. And the scales are tipping in our favour as more and more empirical evidence is published. The psycos can’t admit they’re wrong (and lose face) but they are now undoubtedly fighting a rearguard action as they retreat.
    Well done all you founders of the Collaborative – thank you.

  2. I welcome all biomedical research into properly-defined ME. Agree, the biopsychosocials will never admit they were wrong. I just hope they do no more damage, waste no more resources.

  3. Invisible Woman

    I agree Soloman. A few years back it would have been predominantly the psychs with maybe one or two medical/biological researchers and in this collaborative there seems to be far more medical/biological researchers than psychs.

    I think the MEA has no choice but to be involved, even if it doesn’t agree with the opinions of all concerned. If you want your opinion to be heard then you have to take part in the conversation.

    We are not going to just wake up one morning with a complete solution sudden there, fully formed. It’s going to be a (slow) process and this is a good foundation block to start from. Unless we can attract researchers and funding then we are not going to get anywhere.

    Thank you to the founders of the Collaborative for your hard work in making this happen and to those researchers who are willing to get involved.

  4. I believe this is a positive step forward; like everyone else, I am wary of the psych brigade, but we have to engage with a collaboration like this for our voices to be heard. Thank you to Neil and the others for engaging with this initiative.

  5. I too would definitely rather you were inside the tent making the case, rather than outside it protesting.

  6. This collaborative breaches the WHO classification of ME by combining ME with fatigue syndrome. It is therefore not possible to find consistent biological abnormalities.

  7. Yes I agree the ME Assoc. should be part of this and so can also can monitor how the collaborative develops over time, and who has the loudest voice, if it comes to that.

    I have already expressed concern under ‘Launch’ news item of the last paragraph of press release, as did others; my other concern is that those who support this view (co-morbid, trauma in childhood) appeared to have a dominant role in the launch day. Presumably as they don’t want to be left out of any funding to be had. Hopefully some of the biomedical collaborators ideas may rub off.

  8. ME and CFS are already confused at the clinical coalface as they overlap and all diagnosis is currently symptomatic. As Charles Shepherd has pointed out neuroimmune inflammatory findings such as DRG do not correspond to encephalomyelitis.
    The whole thing is a mess. Only when the research reallly gets going will we have proper subgroups and nomenclature.

  9. I fully support the MEAssociation being “inside the same tent”.
    Thank-you to all concerned, from the bottom of my (peculiarly-acting) heart.

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