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

September 28, 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

GP CONFERENCE IN WALES

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!

UK ME/CFS RESEARCH COLLABORATIVE

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

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

  1. Thank you Dr Shepherd for the effort you our putting in on our behalf. We need to keep up the momentum at the MRC.

  2. Thank you very much Dr Shepherd for attending these meetings. It sounds very demanding on your energy! Great to hear of the positive response from GP’s in Wales and the news about the research collaborative. There is so much catching up to do after the years dominated by the psychiatric lobby and dubious theories which underpin current government cuts to benefits, and health insurance companies’ denial of legitimate claims by people with ME.

  3. May I add my thanks for two extremely worthwhile, though exhausting, events.
    Meeting GPs and looking them in the eye is surely the best way to encourage the interested ones, and to convert the unbelieving!
    As for the Research Collaborative – brilliant! Substitute ‘ME’ for ‘respiratory’ in the terms of reference and we could hardly ask for more.
    Thank you, Dr Shepherd and Prof Holgate.

  4. How are GPS educated in fatigue able to help?

    All the funding given by the MRC has been to other diseases or fatigue. It is pretty clear that nothing is going to change in the next 10 years and the same mistakes are being made.

  5. As always Dr Shepherd, thank you for your valiant efforts, and a special thanks to all the medical representatives from Wales who attended and contributed.

    One burning question I always refer to in these matters, is the ‘retirement’ on a full pension for UK medical profesionals who are diagnosed with Myalgic Encephalomyelitis (M.E.).

    Those unfortunate to be diagnosed with this devastating condition, do of course have to have their case fully assessed by a medical panel.

    Why is it, that the majority of M.E. patients (the 98%) have to jump through burning hoops of ATOS & Co. and suffer the appeals procedures in order to obtain basic Social Security and where necessary help at home etc.

    1. Hello Ronnie
      I’m intrigued by your comment on medical professionals with M.E. being retired early. Do you have further info on that?
      Is it a case of paying them off so they don’t cause a fuss by supporting their sick former patients?

  6. Ronnie_PVFS: very simple – the government is only interested in cutting claimant numbers, not in fairness or justice. The more people who fall by the wayside the better, as far as they”re concerned. It’s totally unforgiveable. Read Dame Anne Begg’s excellent speech at the recent parliamentary debate on ATOS/WCA raised by Tom Greatrex MP on 4 September (posted on Sue Marsh’s excellent blog):

    http://diaryofabenefitscrounger.blogspot.co.uk/

    Read all the Scots Daily Record recent campaign articles on ATOS:

    http://www.dailyrecord.co.uk/all-about/atos

    Even Liam Byrne MP who was in government when WCA was instated has admitted it is a total failure:

    http://www.guardian.co.uk/society/2012/sep/26/labour-review-sickness-benefits-assessment?newsfeed=true

    But despite all this and much more evidence, such as the rising tide of associated deaths and suicides, the corruption at the heart of the bogus WCA as demonstrated by the recent Panorama and Dispatches documentaries, this psycopathic government continues to scythe through as many sick and disabled people as it can. No justice, just cuts.

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