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UK CMRC 2018 Conference held September 19 & 20 at Bristol

Discussion in 'General ME/CFS news' started by Sasha, Mar 6, 2018.

  1. Sasha

    Sasha Senior Member (Voting Rights)

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    Thanks for your reply. I don't recall seeing this for academic conferences but I have seen it for other events where it's possible to buy a ticket to hear a single speaker's presentation.

    Academic conferences have understandably been aimed at academics/researchers (i.e. people well enough to be in work and therefore well enough to attend the whole event) but I think it would be good if people could start thinking outside of that tradition if there's real interest in enabling patients with ME to attend these events.
     
    Inara, Daisymay, Amw66 and 2 others like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    Exactly you would think that ME organisations would be leading on innovative ways of making events INCLUSIVE FOR PEOPLE WITH ME rather than looking for examples from elsewhere. come on @Action for M.E. wake up
     
    Inara, Daisymay and Trish like this.
  3. Sasha

    Sasha Senior Member (Voting Rights)

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    @Action for M.E. - even a half-day pass would be a step forward, and possibly easier for you to administer - but please bear in mind that even £25 will be a lot of money for a patient/carer. Many of us have been unable to work for years and live on benefits.

    You say that the £50 day-rate for patients/carers is 'heavily subsidised' but can you explain to me what it costs to have us there, other than a couple of quid per person to cover the cost of refreshments?

    The event will run with or without patients/carers, so unless you're having to hire a bigger hall to accommodate us, I can't see why you need to make such a high charge.
     
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  4. Action for M.E.

    Action for M.E. Established Member (Voting Rights)

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    The cost involves paying a day delegate rate (in excess of £50) which is set by the hotel. I will certainly ask our contact there if a half-day rate would be possible, though it's too late to do this for this year's event.
     
    Indigophoton, Inara, Amw66 and 3 others like this.
  5. Inara

    Inara Senior Member (Voting Rights)

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    This is shocking and telling.
     
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://twitter.com/user/status/1032190047699828741


    as their logo is still included I assume a representative from the MRC will be attending?
    If so, it would be good to get someone to talk about the PACE issue(?) particularly in light of AfMEs recent statement.
    ......actions speak louder than words.
     
  7. Sasha

    Sasha Senior Member (Voting Rights)

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    Has anyone seen a schedule of the papers being presented?
     
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  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    possibly looking for cake..........
     
  9. NelliePledge

    NelliePledge Moderator Staff Member

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    adambeyoncelowe and Sasha like this.
  10. NelliePledge

    NelliePledge Moderator Staff Member

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    Interesting the oral presentation from Tiffany Lodge about factors in serum that might be influencing cell metabolism- is this picking up on Ron Davis comments about is something in the serum? (Sorry if title is garbled doing from memory as only on my phone)

    Also good to see session by Dr with MEabout medical education

    Not sure about the MRC funded stuff. But generally it looks to have moved on in line with new approach.
     
  11. Sasha

    Sasha Senior Member (Voting Rights)

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    Are either/both of you going to this conference, @dave30th, @Jonathan Edwards?

    Any thoughts on what looks interesting/rubbish on the programme?
     
    adambeyoncelowe and NelliePledge like this.
  12. Sasha

    Sasha Senior Member (Voting Rights)

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    Am I right in thinking there's no livestream this year? I can't remember seeing it mentioned.
     
    adambeyoncelowe likes this.
  13. NelliePledge

    NelliePledge Moderator Staff Member

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    I think it was only recorded and posted in the evening last year.
     
    adambeyoncelowe and MEMarge like this.
  14. Sasha

    Sasha Senior Member (Voting Rights)

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    Even recording it and posting it later would be good for those of us who can't go. I hope they'll do that, but I don't recall that being mentioned either (OTOH, I don't follow AfME's own social media).
     
  15. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Para below is from AfME website:

    "With speakers’ permission, each presentation during the conference will be filmed and free to watch on our YouTube channel, following the event. However, please note that, due to the presentation of unpublished data, some speakers decline to be filmed. Last year’s presentations from speakers, including Professor José Monyota, have been viewed nearly 10,000 times, and are still available to view."

    So presumably those speakers who
    • are not presenting new data they hope to publish, or
    • don't mind those militant, patient activists harassing them,
    will be happy to have their talks shown later on You Tube.
     
  16. dave30th

    dave30th Senior Member (Voting Rights)

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    I'm planning to go but haven't really looked over the schedule yet.
     
  17. JohnTheJack

    JohnTheJack Moderator Staff Member

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    A few things look questionable to me:

    I don't trust Pariante and he gets two slots. It seems to me that he's trying to introduce beliefs through the back door. Inflammation, but one that can be treated with CBT.

    I don't like the attempt to link FM, IBS and ME. That looks very dodgy to me.

    The Yorkshire Fatigue Clinic looks like packaged-up GET to me. It seems also to be a private clinic, so I have two big question marks alongside that.


    ETA: 'to big question marks' to 'two big question marks'.
     
    Last edited: Sep 8, 2018
  18. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    By Tiffany Lodge. This is very interesting. Edited: Lodge is with Karl Morten's group, so there are now 3 or 4 groups talking about something in the serum that's impairing cell function.
     
    Last edited: Sep 8, 2018
  19. jaded

    jaded Established Member (Voting Rights)

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    @JohnTheJack - just to reassure you that the Yorkshire Fatigue Clinic are pretty unique in the UK in the fact that they don’t ever push GET. In fact they largely disagree with it and how it has been delivered by mainstream NHS clinics. I think this is why they set up an independent private clinic in my humble opinion.

    I’ve been a patient of them for two years and they’ve been very supportive from an occupational therapy point of view. They actually forced me to stop pushing against my symptoms in the early days when I didn’t understand the illness and have reassured me constantly during my worse months being bed bound and hardly able to make it to the bathroom.

    I know the title looks ambiguous but I’m hoping it’s focused more so on pacing/activity management. They’re well informed with the biomedical research and are worlds apart from my digustingly ignorant and barbaric local NHS clinic.
     
  20. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Right, OK, thanks. Sometimes I get a bit overly suspicious.
     

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