Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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UK CMRC AGM today - available to live stream

Discussion in 'General ME/CFS News' started by K22, Apr 27, 2016.

  1. K22

    K22

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    Copied from AFME Facebook

    The 2016 AGM of the CMRC will take place today (Wednesday 27 April) from 2.45pm to 3.30pm. If you're not able to attend in person and are interested in viewing the event you can watch it in real time via livestream at https://livestream.com/accounts/5490858/cmrcagm2016

    The agenda for the event is as follows:

    - Welcome and apologies
    - Annual report 2014 - 15
    - Charter revisions/approval
    - Plans for 2015 - 16
    - Membership of the Board
    - Any other business
     
  2. K22

    K22

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    It was very poorly advertised so I think only 20 people watched this presentation to the public
    The general message was everything is going good and that over the years even more good should start to happen - where patients are supposed to get a bit excited

    Patients weren't involved, it was a talk to not with.

    It's a shame more didn't listen as obviously I'm a cynic but other views would be interesting.
     
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  3. Keith Geraghty

    Keith Geraghty Senior Member

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    I watched this but was quite annoyed that we could not ask questions - Soyna Chowdury said it wasnt possible to see questions; then her own screen showed that she could - I dont need to be Sherlock Holmes here - then she said she'd look to see if there were any questions; turned to Prof. Holgate said there were a few comments; he moved no -- no one got to ask any questions.

    So much for involving people - no doubt some statement that the technology was to blame and next time it will be better.
     
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  4. worldbackwards

    worldbackwards A unique snowflake

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    Some things never change...
     
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  5. Esther12

    Esther12 Senior Member

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    Was their anything about their weird 'organised campaign' bit in the charter? Would like to see that expanded to protect patients from researchers.
     
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  6. Simon

    Simon

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    Monmouth, UK
     
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  7. BurnA

    BurnA Senior Member

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    I really think this is something that should be pushed for. Is there anyway this issue can be brought to the fore ?
     
    Kati likes this.
  8. Sasha

    Sasha Fine, thank you

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    SC said they were redrafting.
     
  9. Bob

    Bob

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    Haven't they recently been redrafted? We've seen a new document recently - three-ish weeks ago. It's on the forum somewhere.
     
  10. Scarecrow

    Scarecrow Revolting Peasant

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    They're redrafting the redraft!

    One of the things they mentioned was that they are going to significantly shorten the Charter and remove a considerable amount that refers specifically to the board (they never said as much but as I understand the way in which organisations are governed, they can cover this in separate documents, eg standing orders) and they are also going to widen membership beyond the UK.
     
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  11. Esther12

    Esther12 Senior Member

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    Wonder what they are - anyone know?
     
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  12. worldbackwards

    worldbackwards A unique snowflake

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    I think it involves never directly engaging with critics. Or something.
     
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  13. Bob

    Bob

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    Firing squad? (Sorry - slightly cynical.)
     
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  14. worldbackwards

    worldbackwards A unique snowflake

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    Interpretive mime.
     
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  15. Esther12

    Esther12 Senior Member

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    LOL

    "We think it's really important that patients themselves are included in the development of research projects..."
     
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  16. K22

    K22

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    Love the suggestions for how they're encouraging debate :) . It certainly wasn't at the presentation to the public yesterday & since the applications to attend CMRC patient sessions have to go through approval I don't think there's much room for anything other than cheering on the establishment.

    Sonya's reply about the orchestrated campaigns - that clause has no place because it implies people on the board ie charities, have to be very careful about what they're allowed to do. I personally would like to see a campaign against the banning & silencing of Dr Speight which has left the 25% group without a dr they can call on for severely ill in crisis & against Chronic fatigue research being spun aS ME, whether it's through use of the Oxford criteria or as Dr Crawley did recently but she's put herself above this. She clearly assumes funding for their project, just as she seems to for her proposed MAGENTA trial. The vision of working with BACME & the fatigue clinics for the Grand challenge, they're all still holding hands but have the charities in tow ...

    I was irritated by how Stephen Holgate referred to the funding a "few years ago" - yes I am very aware it was way back that MRC actually gave us some big money - & how that wave of funding has stretched on over 4 long years.

    The AGM seemed low key and without the urgency that the States are showing at last.
     
  17. Keith Geraghty

    Keith Geraghty Senior Member

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    I should state for the record that I am a professional member of the collaborative.

    I think Prof. Holgate is doing some good work but much more needs to be done on the public patient involvement front (PPI) - if I compare how the NIHR operates compared with the CMRC, I think theres a long way to go.

    The inability to ask questions was disappointing - but then again if there were say 20 questions how could that be managed, so I have to be fair to them also.

    I think in future I will have to attend this events rather than seek to watch via the online system.
     
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  18. K22

    K22

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    It's
    it's heartening you are a voice there Keith
    I think naturally there's a different perspective on these things & the rate of progress etc from an academic point of view and me, a long-term severe in bed where it's seemed like watching paint dry since the formation of the ME expert group in 2007.
    Theres a huge difference in how UK & USA operate and also I think there's more urgency eg we are told repeatedly in UK that more ring-fenced funds can't be given, whilst In the USA there's more recognition of the need for a multi-pronged action plan to drive things forward.

    I guess you're not a member of the CMRC board though?
     
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  19. Sasha

    Sasha Fine, thank you

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    It's very unclear what BACME actually is (its site is currently down for maintenance). It may just be a group of all or most of the researchers and clinicians who are involved in the NHS specialist ME/CFS clinics. Some of its statements appear rather BPS-model driven, and maybe that reflects a dominant influence of the BPS school - that wouldn't be surprising. In the NHS, the clinics are obliged to follow the NICE guidelines, which recommend CBT and GET.

    But it's quite possible that a lot of those clinicians want something better than the BPS approach and understand the poor quality of the evidence (such as PACE).

    And in order to recruit patients, it's going to have to be done via the NHS specialist clinics. I don't see any getting away from that.

    The key is going to be in good study design, and the fact that George Davey Smith is involved - and, apparently, a load of biomedical people - reassures me that the BPS crowd aren't going to be in control of this. Compared to biomedical scientists, they don't have the status. It's one thing to dominate the field when biomedical people aren't in it - it's quite another to try to do that when they're on the same project with you and outrank you.
     
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  20. user9876

    user9876 Senior Member

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    I get the impression that Holgate is somewhat old fashioned when it comes to patient participation or even the idea that a patient could possibly read an academic paper and understand it. I suspect he is quite typical of the older generation in medical research.
     
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