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Oxford University research into ME/CFS - MEA Update

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Jan 23, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    Oxford University research into ME/CFS - MEA Update

    Start of the year update on biomedical research being funded by the MEA Ramsay Research Fund

    And looking at the possibility that the University of Oxford could become another Centre of Excellence for ME/CFS Research here in the UK:

    http://www.meassociation.org.uk/201...omedical-research-into-mecfs-23-january-2016/

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  2. user9876

    user9876 Senior Member

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    Should the story be dated the 23rd Jan 2017 rather than 2016?
     
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  3. charles shepherd

    charles shepherd Senior Member

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    Yes - I will speak to Tony on the website!
     
  4. Hip

    Hip Senior Member

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    From the article:
    Sounds very promising.

    I'd like to know more about what is happening at Oxford, but the way the above paragraph is phrased, it make me think that academic research is finally realizing what a truly fascinating and intriguing physical disease ME/CFS really is, and what a stimulating and exciting intellectual challenge it will be for researchers who get involved in figuring out ME/CFS etiology.

    I think once more researchers do realize this that the physical diseases of ME/CFS represents a stimulating area of study, we will see more universities setting up biomedical centres of excellence for ME/CFS.
     
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  5. charles shepherd

    charles shepherd Senior Member

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    What is particularly encouraging about the situation in Oxford (and this is not unique) is that we now have a growing number of top research scientists involved in muscle/mitochondrial disease, exercise physiology, metabolomics, exosomes etc with no previous involvement or interest in ME/CFS research wanting to get involved with a range of biomedical research studies.

    I would add that we are also talking to the clinicians in Oxford.
     
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  6. Sasha

    Sasha Fine, thank you

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    I've never really understood what a "centre of excellence" is. Is it just a loose affiliation of researchers/clinicians with a specialist interest in a particular location, or does it have some sort of special status in the eyes of funders that help it to pull in money? Or in the eyes of the NHS that gets it some sort of special support?

    Either way, it's very promising to have a biomedical gathering of talent in Oxford.
     
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  7. charles shepherd

    charles shepherd Senior Member

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    That's a good starting point for a definition of a medical centre of excellence

    I have slightly enlarged it into 3 key aspects:

    1 An affiliation of researchers and clinicians from various specialties with a specialist interest in a particular condition in a particular location

    2 Has special status in the eyes of research funders that may help it to bring in funding

    3 May receive special support from NHS in relation to clinical resources and the MRC in relation to research funding for both researchers and research infrastructure
     
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  8. Sasha

    Sasha Fine, thank you

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    Thanks, Charles - that's very interesting.

    Do the researchers/clinicians have to declare themselves somehow as a CoE or set up some sort of special framework?

    Is there any way that patients can help (a petition in support, or anything)?
     
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  9. charles shepherd

    charles shepherd Senior Member

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    I
    In some cases a hospital or university will decide to give a centre of excellence some form of formal status

    In other cases, especially during the early stages of development, it's a much more informal definition - often with no official recognition from the hospital or university

    At this point I don't think there is any need for patients to be doing anything in the way of petitions or writing letters

    But fundraising is always welcome and we have left the MEA Xmas fundraising appeal for the metabolic research at Oxford (which has brought in over £60,000 so far) open till the end of January
     
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  10. AndyPR

    AndyPR Senior Member

    This is meant as a genuine question. Do you actually think this is a possibility, given what we are learning about how the NHS looks to be pursuing a MUS line of approach with ME? Why would the NHS waste money on biomedical research when they believe that psychological treatments are the cost effective route to follow? Or is it possible to have two disconnected parts of the NHS, one MUS based, the other willing to fund biomedical research?
     
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  11. Sasha

    Sasha Fine, thank you

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    That's good to know. Is Dr Karl Morten still thinking of giving some more info on the project? It sounded very interesting and it would be good to hear more, if he has time.
     
    Last edited: Jan 24, 2017
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  12. charles shepherd

    charles shepherd Senior Member

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    Clinicians working in the NHS still have a considerable degree of clinical freedom to manage patients in a manner that they think is best - even if this may not be entirely consistent with the NICE guideline on ME/CFS or other NHS thinking on the subject

    We are also taking to the clinicians in Oxford and at the last research planning meeting at the John Radcliffe Hospital in January a new (consultant virologist) member of the clinical team, who appeared to be very open minded, came along to hear what was being proposed
     
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  13. trishrhymes

    trishrhymes Senior Member

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    It would be great to have a centre of excellence for biomedical research into ME at Oxford University.

    Should nicely get up the nose of one Professor Sharpe of Oxford University of PACE and IAPT infamy.
     
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  14. AndyPR

    AndyPR Senior Member

    Thanks for the reply. So, given the MUS framework that is being erected, even if (hopefully when) the NICE guidelines are amended to reflect the biomedical reality of ME, the chances are that, with this clinical freedom, patients will still have to navigate a maze of MUS.
     
  15. slysaint

    slysaint Senior Member

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  16. AndyPR

    AndyPR Senior Member

    Short answer, I don't know.

    Longer answer, I still don't know but it depends if they are trying to attract the same researchers, facilities and funds or not. If they aren't then I can only see two centre's of excellence as a good thing. We don't complain about having the OMF and Lipkin's CII in existence at the same time, as a, possibly poor, example.
     
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  17. charles shepherd

    charles shepherd Senior Member

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    No

    We already have three emerging or established centres of excellence at:

    1 The London School of Hygiene and Tropical Medicine (epidemiology, Immunology, ME/CFS Biobank)

    2 Newcastle (autonomic nervous system dysfunction; immunology; muscle; sleep disturbance)

    3 Norwich/UEA (microbiome research)

    It would be great if we could have a fourth centre of excellence into biomedical research art the University of Oxford - which is what we are trying to achieve

    This happens in other diseases

    Why not in ME/CFS??

    CS
     
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  18. charles shepherd

    charles shepherd Senior Member

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    Given all the uncertainties and disagreements over nomenclature, clinical and research diagnostic criteria, causation and consequent management of ME/CFS the current situation regarding hospital based referral services, whereby different doctors have differing views on management, will almost certainly continue for the foreseeable future
     
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  19. slysaint

    slysaint Senior Member

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    agreed; thanks for the reply(just wondered about funding)................and would, by the by, rather we didn't have one in Bristol;)
     
    Last edited: Jan 24, 2017
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  20. charles shepherd

    charles shepherd Senior Member

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    We are not involved in funding any of the research taking place in Bristol and do not have any plans to try and set up a centre of excellence in Bristol……..
     
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