We talk to over 100 GPs in Wales and help launch plans for UK ME/CFS Research Collaborative | 27 September 2012

GP conference in Wales and meeting at the Royal Society of Medicine in London to set up a UK ME/CFS Research Collaborative

Two brief reports from Dr Charles Shepherd, Hon Medical Adviser, The ME Association


After a long and frustrating journey through the floods on Tuesday evening, I finally reached mid-Wales for the three-day GP conference that started on Wednesday morning.

Over 100 GPs were in attendance and the whole of Wednesday afternoon was devoted to the issue of chronic fatigue and chronic pain in general practice.

My presentation on fatigue resulted in a lively discussion session with many of the questions relating to the issue of speculative/unproven forms of treatment. Over lunch and other breaks it was clear that there were many GPs who genuinely wanted to help their patients with ME/CFS, including references to unfair benefit decisions, but they often lacked the information and support to deal with ‘difficult cases’.

Everyone received a copy of the MEA purple guidelines booklet and I hope that this group of GPs will return to work with a clearer picture of how to diagnose and manage people with ME/CFS along with knowledge of the diverse range of biomedical research that is being carried out – including a slide on dorsal root ganglionitis!


On Wednesday night, I had another long journey to London in order to attend a meeting on Thursday morning at the Royal Society of Medicine that had been arranged by Professor Stephen Holgate. This aim of this meeting was to maintain and build on the momentum that has been achieved by the MRC Expert Group in raising biomedical research into ME/CFS, along with funding, to a high priority level at the MRC.

This meeting took the first steps towards setting up a UK ME/CFS research Collaborative that will encourage further new research, the establishment of research fellowships, and the creation of a much needed research infrastructure specific to ME/CFS. It is termed a collaborative because the partnership will bring together established researchers, new researchers, clinicians, research-funding ME/CFS charities, and the pharmaceutical industry.

Fortunately, Professor Holgate has a very solid track record in this area having set up the UK Respiratory Research Collaborative (UKRRC) and we will be basing our terms of reference on those used by the UKRRC:

Terms of Reference of UKRRC:

* Produce and update a strategy for respiratory research in consultation with constituent groups and others
* Promote the need for world class research into respiratory disease
* Facilitate translational research in respiratory medicine
* Continue working to raise the profile of respiratory research in the UK
* Raise awareness of the need for a good career structure for respiratory researchers
* Promote conditions in which more research can take place in NHS settings.
* Work to increase the funding for respiratory research in the UK
* Raise awareness of the achievements of the respiratory research community
* Liaise with UK agencies and funders – DoH, MRC, Wellcome Trust and so on – to share information, respond to consultations where an united response would be helpful, and to work jointly towards the shared aim of improved patient care. Such liaison to be effected in 2 ways – direct involvement in meetings, and open lines of communication meantime.

Further information on the UK RRC can be found HERE

A small group of us will continue to take this important initiative forward with a further meeting planned later in the year. We are aiming to formerly launch the collaborative early in 2013.

Dr Charles Shepherd
Hon Medical Adviser, The ME Association
27 September 2012


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