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UK Research Collaborative means business

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 4, 2013.

  1. Valentijn

    Valentijn Activity Level: 3

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    Agreed ... it doesn't sound like he has anything to do with ME/CFS, unless someone is operating under the psychosomatic theory that IBS and CFS are the same thing.

    How the hell is this an ME/CFS project when IBS guys are being added to it and given a vote?
     
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  2. Simon

    Simon

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    Thanks for the clarification.

    Although the chair does not have a vote, the 5 charities on the Executive do, which would lead to a hefty majority for the biomedical perspective. And the chair will usually have a lot of influence. If Stephen Holgate had a BPS view I would be very worried, but I've seen no evidence of that (and quite a lot to the contrary).
     
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  3. David Egan

    David Egan Hermes33

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    Reply to Simon and others.


    While respecting you and your viewpoints, from the very limited, very poorly funded ME research worldwide, some biomarkers have emerged. Do not expect the level of biomarkers and replicated studies one finds in cancer, aids, MS, etc. which have been well funded worldwide for many years. We must work with what little we have, in terms of biomarkers and research findings. They are listed on web site www.cfs-ireland.com (biomarkers link on web site).

    The mockery and belittlement of the ME illness by psychiatrists resulted in little or no funding for ME for the past 25 years. The loss of research into ME is estimated at $600 million over 20 years. One can thank the psychiatrists for this. By the way psychiatrists have no biomarkers, they rely on assumptions, presumptions and guess work. Strangely they are on this research collaborative, very, very strange indeed.

    As regards so called 'mood disorders' in ME patients, I am sure the mood would improve if biological diagnostics and treatments were applied to improve their condition and bring about recoveries. Furthermore, the use of psychiatry to belittle, mock, slander, insult and stigmatise ME patients would tend to affect the mood of ME patients ; what do you think Simon ?

    One does not solve a problem by applying more of the problem into the mix, psychiatry in this case being the problem, in the faint hope that more problems piled upon problems will somehow produce a solution.

    This research collaborative needs to define certain definite outcomes and results. These outcomes must be strategic to the interests of all ME patients. An outcome or result which answers the following questions would provide the strategic direction for research, diagnostics and treatments, clinics and public awareness.

    - the name to be used ? will it be ME or Chronic Fatigue Syndrome (CFS) ? The term Chronic Fatigue Syndrome is actively used to mock, scorn, slander, belittle and insult patients. And if it is chronic fatigue syndrome, then the same (false) logic could be used to call diabetes 'chronic thirst syndrome', call amemia 'chronic weakness syndrome', call cancer 'chronic tiredness and pain syndrome', etc.. Using proper logic, ME should be the only name used, as it is scientifically and medically correct and could not be used to mock, scorn, slander, belittle and insult ME patients.

    - which definitions will be used ? will it be the old outdated CDC 1994 criteria which has led to excess heterogeneity, non-ME patients being diagnosed and recruited, and contradictory research findings. Or the Oxford criteria, London criteria, NICE criteria, which have the same defects as CDC 1994. Or will it be the up to date and more accurate Canadian Consensus Criteria (2003) and ICC (2011) ?

    - will people continue to presume that there are no biomarkers for ME ? and will this presumption be used to undermine and confuse research ? or will they admit that biomarkers actually exist, some of these biomarkers are mentioned on www.cfs-ireland.com (biomarkers link) . By the way, psychiatry has no biomarkers, and relies on assumptions, opinions and presumptions.

    - the format and structure of translational research and new biological based ME clinics

    - will pharmaceutical companies use Canadian Consensus Criteria (2003) and ICC (2011) and biomarkers to properly recruit and assess ME patients in research projects and clinical trials ?

    - how will research be prioritised ? what research is necessary to build a structure of causation instead of an analysis of some secondary symptoms ?
     
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  4. Bob

    Bob

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  5. Bob

    Bob

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  6. Simon

    Simon

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    Summary of minutes from the latest meeting from the MEA site

    UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013 | ME Association

    highlights:

    2. Research Priorities

    All five charities have submitted their priorities which included the top five priorities identified by nearly 1,000 participants to Action for M.E.’s survey, where 90% of the respondents had M.E. During a conference call over the summer with a subgroup of the Board, it was agreed that SH will work to pull these priorities together to inform the Collaborative’s work.
    There was a strong need identified for work with, and including, people with severe M.E. as research with this patient group is lacking. Action for M.E. is in the process of replicating the survey with researchers as part of their consultation to inform their Research Strategy and will report back results to the Board.

    It was agreed to look at other organisations such as the MS Society where there has been effective collaborations between patients and researchers in driving research work forward. There was a lot of discussion about how the Board might take this forward.

    4. Annual Science Conference

    There is a small conference planning group that has been formed and a venue in Bristol has been booked for 1-2nd September 2014. The purpose is to explore how to drive and generate more research and to work more collaboratively. Ideas were shared for the focus of thematic workshops on such as genomics, diagnosis, treatment, cognitive dysfunction and biobanking.

    There will be a patient/researcher joint session focused on how researchers and patients can work more effectively together. It was agreed to identify leading researchers in and outside of the field to invite and engage with the event including international experts.

    Costs will be covered by attendees with a financial contribution from MRC. There may be additional costs, such as fees such as supporting patient participation that the charities could consider but this would need to be looked at in more detail.
    Further consideration will be given to live streaming.

     
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  7. Firestormm

    Firestormm Guest

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    MS Research priorities - referred to above - as identified by the MS Society: here.

    Spot the similarities? Spot the differences?
     
    SOC likes this.
  8. peggy-sue

    peggy-sue

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    It any trouble likely to arise from the MEAssociation using ME to stand for Myalgic Encephalitis rather than Encephalomyleitis?

    Is there a chance this could be used to negate their vote?

    :p Simon said; "Think Peter White is as likely to change his mind as Julia Newton is to change hers."

    I am sure Professor Newton would change her mind if the evidence showed she should.
    That's what scientists do.
    Ditch theories that the evidence does not support.

    Then file the theory away, with all the evidence and methodology, for future reference, to ensure the same mistakes don't happen again.

    There are far too many powerful folk from the bps school here for my liking. I can see why some of them should be there - but not holding all the cards!
     
  9. Dolphin

    Dolphin Senior Member

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    ETA: My points relate to this being applied to ME/CFS.

    I spot the similarities with the MRC "CFS/ME" research strategy (2003) which the patient community were very annoyed about. It was about justifying research into rehabilitative and nonpharmacological therapies (funding for the FINE and PACE Trials was announced a couple of weeks after it came out) and saying studying of the aetiology and pathophysiology wasn't that important.

    There is already a surfeit of non-pharmacological research funding by the NIHR relative to other types of research.
     
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  10. Dolphin

    Dolphin Senior Member

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    Here's some research the NIHR is currently funding:

    I don't recall seeing the cost for the top four - would be interested if anyone did a FOI request:

    ----

    ----

    ----
    ----



    ----

    We know the cost of the following


    -----
     
  11. Esther12

    Esther12 Senior Member

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    Yeah. Lots of room for quackery there.
     
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  12. Bob

    Bob

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    The summary of the meeting refers to AfME's patient survey re research priorities:
    Below, are the details re AfME's survey results, and also AfME's stated research priorities:

    Summary of Survey results:

    Survey results in more detail:
    http://www.actionforme.org.uk/Resources/Action for ME/Documents/research/research-priorities-survey-results.pdf
    (It's interesting to note what comes at the bottom of this list. e.g. 'psychological aspects' comes at the very bottom, but also 'sleep', 'diet', 'vitamins and/or supplements', and 'economic research' come low on the list.)


    AfME's stated research priorities (I don't know how current this list is)
    (These priorities differ slightly from the top priorities listed in the survey: e.g. 'effective prevention strategies' gets a relatively low score in the survey):
     
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  13. Dolphin

    Dolphin Senior Member

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  14. Bob

    Bob

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  15. Simon

    Simon

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    Not sure about that. The first big difference is that these were the priorities identified by patients and health care professional, as opposed to researchers/clinicians with some consultation. This was organised by the very patient-friendly James Lind Foundation, presumably because the MS Society chose to do things that way.

    Second, it depends on how you interpret the list

    Clear biomedical issues
    2. How can MS be prevented
    3. Does early treatment with aggressive disease modifying drugs improve the prognosis for people with MS?
    8. Is Vitamin D supplementation an effective disease modifying treatment for MS?

    Self-help
    4. How can people with MS be best supported to self-manage their condition?

    Clear psychological/behavioural approaches
    10. Is physiotherapy effective in reducing disability in people with MS?
    But GET doesn't seem to be controversial in MS, and was first formally trialed because patients recommended it. Interestingly, the Light's moderate exercise gene expression study found that MS patients recovered quickly from such exercise (self-rated) compared with CFS patients.

    Other - end result, not type of treatment is specified
    1. Which treatments are effective to slow, stop or reverse the accumulation of disability associated with MS?
    3. Which treatments are effective for fatigue in people with MS?
    7. Which treatments are effective to improve mobility for people with MS?
    8. Which treatments are effective to improve cognition in people with MS?
    9. Which treatments are effective for pain in people with MS?

    What surprised me most is the absence of a simple 'find a cure' from the list, though maybe point 1 covers that. I bet most MS patients are not looking at BPS approaches to deliver most of the 'Other' goals,
     
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  16. Simon

    Simon

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    Bob Dolphin re AfME's survey
    So,
    • 68% of respondents wanted to prioritise disease processes, with 41% of all responders putting it as their first choice
    • 6.6% of respondents wanted to prioritise psychological aspects, with 0.7% of all responders putting it as their first choice
    By a happy co-incidence, CMRC's chair Stephen Holgate argues that research now needs to focus on causal molecular pathways.
     
  17. Dolphin

    Dolphin Senior Member

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    My point wasn't that the MS Society survey was biased.

    My point was that I wouldn't be happy it being used at this moment in time for ME/CFS in the UK as it would likely be used to justify a lot of research done by biopsychosocialists.

    One has to take political realities into the equation. It's a bit like asking was the PACE Trial a good idea: in theory, one might say it would be interesting to know how effective GET, CBT and a form of pacing are. In practice, I don't think having such a major trial led by Peter White, Trudie Chalder and Michael Sharpe at that moment in time was a good idea.
     
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  18. Bob

    Bob

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    Indeed, and this very much depends on who gets to interpret the list!
     
  19. Dolphin

    Dolphin Senior Member

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    Not so clear when applied to ME/CFS at this moment in time in the UK:

    Hazel O'Dowd's Early intervention in fatigue: a feasibility study

    http://public.ukcrn.org.uk/Search/StudyDetail.aspx?StudyID=11924

    http://www.controlled-trials.com/ISRCTN72645894/

    This can be seen as a prevention study (preventing fatigue develop into CFS, as they would see it).
     
  20. Dolphin

    Dolphin Senior Member

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    And my point was that a priority list like that doesn't focus on the causal molecular pathways.

    And similarly it can easily be used to justify more of the same funding patterns that have existed with the MRC funding over the last 20 years and now NIHR (excluding the ring-fenced money in 2011).

    The MRC research strategy in 2003 talked a lot about working out effective treatments.
    ---
    ETA: I'm not one of the people totally against the collaborative. But I think it's important to point out that it can easily be misdirected if people aren't conscious of possible problems.
     
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