A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
Discuss the article on the Forums.

UK Research Collaborative Conference in Newcastle: 13th - 14th October

Discussion in 'Upcoming ME/CFS Events' started by charles shepherd, Mar 26, 2015.

  1. jimells

    jimells Senior Member

    Messages:
    2,005
    Likes:
    6,133
    northern Maine
    Professor Edwards managed to achieve significant breakthroughs without "Big Data" and "Grand Challenges", so perhaps there are more than two options?
     
    Bob likes this.
  2. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,663
    .
    @charles shepherd , did Colin Barton ever get back to you to explain exactly why and how the NICE and BACME-supporting Sussex CFS Society is assisting with Dr Mark Edwards MRC funded research?

    ‘This project that is being funded by the Medical Research Council will involve three scientists - Dr Mark Edwards, a neurologist at the Motor Neurosciences Unit, UCL Institute of Neurology, Prof Neil Harrison from the University of Sussex and Dr James Kilner at University College London.’

    The Sussex CFS Society Charman, Colin Barton writes on the site: , “We are delighted to be able to assist with this most important study.”

    .
     
  3. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,239
    Likes:
    16,203

    No - I never received a reply from Colin. My query followed his comment about this on the MEA Facebook Page
     
  4. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,663
    .
    Yes, I saw your question to Colin. I do think that he should answer the question, and explain how the Sussex Society is assisting the research. They should be accountable to the ME community about their involvement with CMRC research Someone will have to write to Colin about it I expect.
     
    Last edited: Nov 5, 2015
    Research 1st likes this.
  5. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,239
    Likes:
    16,203
    I may be meeting Dr Mark Edwards next week in London at the MRC and will ask him
     
    Hutan, MeSci, Simon and 1 other person like this.
  6. jimells

    jimells Senior Member

    Messages:
    2,005
    Likes:
    6,133
    northern Maine
    Thank you Dr Shepherd. It definitely helps my morale to know that folks like you and Professor Edwards are looking after our interests.
     
    MeSci likes this.
  7. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,850
    Different Edwards :p
     
  8. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,239
    Likes:
    16,203
    Dr Mark Edwards (Senior Lecturer at the Sobell Department of Motor Neuroscience and Movement Disorders at the UCL Institute of Neurology and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery)

    Professor Jonathan Edwards attends the conference when he can but is not a member of the Board of the UK Research Collaborative
     
  9. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,239
    Likes:
    16,203
    Full list of Research Collaborative Board Members:

    Dr Neil Abbott (MERUK)

    Sonya Chowdhury (AfME)

    Dr Esther Crawley (Reader in Child Health, Bristol University)

    Dr Mark Edwards (Senior Lecturer at the Sobell Department of Motor Neuroscience and Movement Disorders at the UCL Institute of Neurology and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery)

    Dr Zoe Gotts (post-doctoral health researcher: sleep research, University of Northumbria)

    Professor Stephen Holgate (Immunopharmacology, University of Southampton)

    Professor Peter Little (Primary Care Research - University of Southampton)

    Dr Alastair Miller (Infectious diseases, University of Liverpool)

    Professor Julia Newton (Dean of Clinical Medicine, Newcastle University)

    Professr Carmine Pariante (Profesor of Biological Psychiatry, KIngs College Hospital)

    Professor Hugh Perry (Experimental Neuropathology, University of Southampton and Chair of Neurosciences Board at MRC)

    Professor Chris Ponting (Professor of Genomics, University of Oxford)CV: http://www.dpag.ox.ac.uk/research/ponting-group

    Dr Charles Shepherd (MEA + other appointments)

    Mary Jane Willows (AYME)
     
  10. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    697
    Likes:
    2,308
    Wildcat, here are some Colin Barton quotes that don't appear to mirror the experiences of UK ME sufferers on this forum (or from any other country), but do appear to mirror UK BPS psych CFS, which AFME support.

    I found that odd, as there is no evidence based treatment for ME/CFS, especially in the UK that is using CBT/GET. In addition, patients report that most doctors in the UK do NOT accept that ME/CFS is a genuine disabling illness, and indeed, want nothing to do with the patients and leave them to rot in their homes and beds (as there is no treatment, and their symptoms are presumed psychosomatic). There are exceptions of course.



    This again seems odd. I don't know if there is any evidence that ME/CFS 'these days' only makes people mild or moderately affected with ME/CFS?

    Again he mentions the 'approaches', but doesn't list them.

    The approaches available to UK doctors are anti depressants, counselling, pacing, CBT and GET. (TILT test and Antivirals are advised against in the NICE guidelines). So no other 'approaches' are possible, as no research has lead to an evidenced based therapy yet. Unless you tow the BPS psych CFS line that is.

    Of note the IOM don't feel these approaches work either as as a form of treatment for CFS ME rebranded as SEID.

    So a strangely positive outlook, but with no mention what this effective treatment programme for ME CFS is.. that science itself also isn't aware of.
     
    Last edited: Nov 8, 2015
  11. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    697
    Likes:
    2,308
    Dr Alastair Miller quoted on AFME website in 2010, who at the time, was AFME's 'principal medical advisor'.

    The question is:
    Can & Do people recover?

    Dr Millers response, is below:




    This confuses me greatly. It looks like he's describing F48.0 psych CFS, not organic ME CFS? Hence he was medical advisor to AFME (who supported the PACE trial) and not the 25% ME group.

    I prefer Dr Shepherd's response who says from the same source as above, a rather more accurate comment.

    Now that's a realistic reply when it comes to ME. So it seems Dr Miller is referring to MRC F48.0 Psych CFS which is then incorrectly referred to as 'ME'.

    Hopefully Dr Alistair Miller now in the UK Research Collaborative, as it has 'gone biomedical' has changed his views. At the end of the day, 'employment status/domestic environment' have no effect on the disease process, to allow for a
    full recovery.

    I'd say B Cell depletion in an autoimmune subset, and/or wiping out pathogens, is far more likely to lower chronic inflammation, reduce symptoms, and increase the human bodies ability to recover.
     
    BurnA, maryb and Wildcat like this.
  12. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,663
    .
    @Research 1st .... I just wrote a post in response to yours but lost it.

    In short the attitude of the Sussex Society Chairman reflects those of UK BPS psyches and BACME, but don't reflect the experiences of UK patients, including those in Sussex. Raises the question of how objective future reporting by the Sussex Society of the MRC funded Mark Edwards research would be.

    I have stated in a previous post that the Sussex CFS Society is a top down organisation, it wields a lot of power in Sussex with its contact with the Brighton and Sussex University Hospital; its friendly relations with the Brighton Argus local paper and local orgs. But the Sussex Society is determindly supportive of NICE, the UK Clinics, and BACME.

    Sussex patients who report to the Society about bad attitudes or behaviour from GPs or other doctors and health professionals in Sussex, are not listened to, and are airbrushed out of the pretty pictures that Colin Barton paints.

    The Sussex Society has strong links with Barts and Peter White.

    .
    Colin Barton:
    "One interesting development that we have noticed in our area is that many more people with M.E./CFS these days are falling into the mild to moderate category and improving significantly with the help of various approaches."
    Source:http://www.actionforme.org.uk/get-i...-recovery/can-and-do-people-recover-part-two/


    Sussex Society marketing sales talk for the UK Clinics, NICE and BACME.

    .
     
    Last edited: Nov 9, 2015
  13. halcyon

    halcyon Senior Member

    Messages:
    2,330
    Likes:
    5,457
    That or many more people are being misdiagnosed with CFS and go on to improve because they don't actually have the disease which is by definition chronic.
     
  14. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,358
    Earth
    MeSci and Snow Leopard like this.
  15. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,616
    Likes:
    12,462
    South Australia
    The whole "you might recover" thing reflects that a minority (5-10%) do end up recovering spontaneously (though as we know on the forum, some of those people become ill again years later).

    I think they say this to try and give people hope.

    You know how it is, you have severe symptoms, you've been given a dead-end diagnosis, told their are no treatments and they say, hey keep your chin up, I know a guy who knows a guy who recovered!
     
    Woolie, rosie26, aimossy and 2 others like this.
  16. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,663
    .
    The Sussex CFS Society maintain a blind optimism as part of its policy of being officially pro-NICE, pro-CFS Clinics, and as a member of BACME the Sussex Society supports BACME Guidelines.

    I have stated in earlier posts the Society's choice of Medical Advisors, and its long term affiliation with Barts CFS Clinic and Peter White. It is not just a case of a local ME group trying to give its members hope.
    .

    All but three UK ME charities and groups who made submissions to NICE, condemned the NICE Guidelines as 'Unfit for Purpose'. The only exceptions were AFME, AYME and the Sussex CFS Society (a local group and charity), who all support NICE.

    Two of the Sussex officials were patient representatives on the Chief Medical Officers Working Group. The Sussex Society were very active in national campaigning on many issues, maintaining a stance of supporting the medical establishment's handling of ME. That leaves ME sufferers in Sussex (and Kent) marginalised by their own (supposed) local ME Group.
     
    Last edited: Nov 9, 2015
  17. daisybell

    daisybell Senior Member

    Messages:
    1,602
    Likes:
    7,370
    New Zealand
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,985
    Likes:
    12,847
    Cornwall, UK
    and look who's there - our 'friend' Jon Stone.
     
    Wildcat likes this.
  19. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,663
    .
    The CMRC is losing credibility for its flagship 'biomedical ME research' by the minute. Are ME patients supposed to be reassured that the CMRC is really taking ME biomedical research seriously? Peter White has left the Collaborative but 'functional' researchers with hardcore BPS research connections, such as Mark Edwards history with Jon Stone, are still being given money by the MRC. And the patients are supposed to be reassured by it?
     
    Last edited: Nov 13, 2015
    MeSci, Woolie and halcyon like this.
  20. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,663
    .
    From the statements attributed to Professor Stephen Holgate in the Virginia Gewin gizmodo article, it looks like another 'Behind the scenes at the CMRC' FOI is required to clarify exactly what has been going on inside the Collaborative, behind the scenes and unknown to the UK ME population.


    http://gizmodo.com/the-battle-to-finally-understand-chronic-fatigue-syndro-1741658406

    "Unlike Jason’s emphasis on transparency and patient participation, however, the secret to the UK collaborative’s success, according to Holgate, is a membership charter that forbids harassment or abuse of researchers. In effect, patient groups are banned from whipping up a media frenzy over research findings.
    The charter has already been tested a couple of times, says Holgate, who gave the aggressors a choice: apologise or leave. He’s even suggested that he’ll disband the collaborative completely if all parties don’t play by the rules.


    “We set up the charter to protect researchers; anybody who joins us can’t abuse or upset that trust,” he says. “There is power in this to stop silly publicity which is quite destructive.”
    .



    An explanation from Stephen Holgate and the MRC is required by the UK ME community.
    .
     
    Last edited: Nov 13, 2015
    MeSci likes this.

See more popular forum discussions.

Share This Page