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Action for M.E. 2019 AGM and conference 15th October 2019

Discussion in 'General ME/CFS News' started by Sly Saint, Aug 12, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Location:
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    Tuesday, 15 October 2019, 10:00 AM - 4:30 PM

    same venue as last year
    Bishops Square, London, E1 6AD, United Kingdom

    So highlights are results of their Big Survey, and Dr Nina Muirhead

    https://actionforme2019conference.eventzilla.net/web/event?eventid=2138742076

    (link to discussion of last years conference to see issues already raised/discussed)
    https://www.s4me.info/threads/action-for-m-e-s-agm-and-conference-2018.6076/
     
    Barry, DokaGirl, Annamaria and 4 others like this.
  2. Amw66

    Amw66 Senior Member (Voting Rights)

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    remote access @Action for M.E. to improve inclusiveness? Given that many members will struggle to attend perhaps an option to livestream?
     
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  3. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    This was definitely highlighted last year. Don’t seem to be listening.
     
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  4. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Is that @ Joan Crawford speaking.
     
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  5. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    It looks reasonable, if they had done anything of more than marginal use this year it wouldn't be so bad. Instead they just designed a pretty poor survey which asked nothing on research strategy etc to inform their work, but what work
     
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  6. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    not quite sure of the angle here. Yes the whole issue of MUS is a problem, but inadequate treatment is not the real issue. ME CFS and others 'they' regard as 'functional disorders' should simply not be there and certainly not 'treated' under IAPT.
     
    Last edited: Oct 5, 2019
  8. Andy

    Andy Committee Member & Outreach

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    Sly Saint likes this.
  9. Barry

    Barry Senior Member (Voting Rights)

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    I've emailed.
     
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  10. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Same issue was raised last year and possibly 2 years ago there doesn’t seem to be a will to make it truly accessible to people with ME. I believe the response before was let us have suggestions. And I think my response was as one of the main charities for people with ME AFME should be setting the standard on innovation in making events accessible to us not trying to follow what others do.
     
  11. Wonko

    Wonko Senior Member (Voting Rights)

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    Theirs allegedly 250,000 of us.

    Knock off the 25% who are bedbound.

    Leaving.....lots.

    If we all turn up and demand lunch and refreshments, as well as individual quiet rooms, then maybe the extra costs will bankrupt the £$%&ers out of existence.

    The Met may also have something to say to them, close on 200,000 people turning up at the same location, without a permit, is bound to be against some law or other.

    200,000 people blocking up London, all demanding a biscuit and a cuppa, would definitely get press/media attention.

    I have after all received a personal invitation ;)
     
  12. Barry

    Barry Senior Member (Voting Rights)

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    I had a recent success so thought I'd have a go :).
     
  13. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Moderator note:
    Merged thread



    As it’s the AFME conference this week on the 15th and it is being live streamed I thought this thread would Give those of us who are non members opportunity to watch and comment and reflect on what the charity has achieved, what it’s saying and it’s proposed direction and initiatives for the coming year. 2020.


    Live stream info here:
    https://www.actionforme.org.uk/news/live-streaming-our-agm-and-conference?sfns=mo
    “A link to the webinar’s registration will be available soon, along with full joining instructions. Watch this space!”

    and details of the conference and workshops here
    https://www.actionforme.org.uk/news/save-the-date-action-for-mes-2019-agm-and-conference/

    https://www.actionforme.org.uk/news/our-agm-and-conference-what-workshops-you-can-attend/
     
    Last edited by a moderator: Oct 14, 2019
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  14. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    In terms of development, I wonder how many knew AFME had added a deputy to to their chief executive so we now have a CEO and deputy CEO, I assume a highly paid post as well.
    https://www.actionforme.org.uk/about-us/chief-executive/


    So that’s 17 paid members of full time staff (or equivalent ( including a CEO on £70 000, deputy CEO and the supposedly 4 information and support officers who took over their Facebook page for a day here, giving advice


    they spend £570 000 on salaries on an income of 1.2m. List of staff here
    https://www.actionforme.org.uk/about-us/our-staff-team/
    ME association 2017 had an income of £320 000. I don’t know how many paid staff they have as I could not find that information easily on their website. Yet they seem to manage to provide A similar support service minus a specialist children service.
     
    Last edited: Oct 13, 2019
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  15. Anna H

    Anna H Established Member (Voting Rights)

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    Wow! That's a lot.:thumbsdown:
    It's way more paid staff than OMF has.
     
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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    That's a lot of staff. I can't say I could think of a single useful thing to have come out of it. Maybe it's on count of the distance that I can't see it from far away, but I can see it in other organizations, some much smaller or even without any staff.
     
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  17. Andy

    Andy Committee Member & Outreach

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    If all goes to plan I'll be there tomorrow, I'm intending on more of an observer role rather than taking them to task, as I'm not sure that would actually achieve anything.
     
  18. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    They are really apples and oranges as OMF is essentially about research like Invest in ME and AFME, who Only spend about £80 000/ year on research, focus more on support / information/ “empowering”, despite their claims to be tackling injustice etc. So if you look at the staff list there’s 3 for children’s services and support, They provide a mentor service in Scotland I think that , which is convenient for the Scottish nhs who don’t provide services, they have a service on supporting people back to work and a very limited advocacy service covering 2 counties in England and they set up a lobby in Europe which might have folded.

    Side note ....I wonder how America survives without national “support “ charities, given we have two. Or does America have smaller state ones that provide a support Role.

    Anyway, What I don’t understand Is having 5-6 membership and fundraising when they’re obviously small Fish and achieving little in revenue, several supposed media and communication people ... doing what ? , 4 people in information and support when surely the main points on management could be covered in more literature and then a section on the website where people can ask questions which are then answered and made Searchable for the community to get advice from. Ofcourse people might still need 1-1 but 4? Then the main thing, since the current CEO is so useless and invisible and expensive, why employ a blooming deputy... I think that they Could reduce staff costs to around £300 000 which would free up around £200 000 for research.

    If you think of the major recent things in the U.K., although there’s not much, it was the HoC debate which was primarily #MEaction led, there is millions missing - # MEAction , there’s were moves to get increased research funding in Scotland, -# ME action Scottish volunteers led on this I think. And MEA sort of led the way on NICE review. #MEAction and #MEA did an in depth review of the cochrane review, AFME did not. And it seems like #MEaCtion uk facilitated the recent petitioning of the EU parliament for biomedical research funds. I cannot really think of anything else. #MEACtion are with 1 paid staff in the UK?
     
    Last edited: Oct 14, 2019
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  19. Andy

    Andy Committee Member & Outreach

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    https://www.actionforme.org.uk/news/attending-our-agm-and-conference-via-webinar/
     
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  20. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Medically unexplained symptoms, somatoform disorder, and compensation neurosis are outdated and/or inaccurate terms. The terms subjective, nonspecific, and vague can be used inaccurately. Conversion disorders, functional disorders, psychogenic illness, factitious disorder imposed upon another (Munchausen’s syndrome by proxy), somatic symptom disorder, psychogenic seizures, psychogenic pain, psychogenic fatigue, and delusional parasitosis can be over-diagnosed. Bodily distress disorder and bodily distress syndrome are scientifically unsupported and inaccurate. Many “all in your head” conditions may be related to the microbiome and the immune system.

    https://www.mdpi.com/2227-9032/7/4/114/htm?
     

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