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Livestreaming of Action for ME AGM and conference on Friday, 18 Nov 2016

Discussion in 'Upcoming ME/CFS Events' started by Sasha, Nov 15, 2016.

  1. Sasha

    Sasha Fine, thank you

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  2. AndyPR

    AndyPR RIP PR :'(

    Collaborating with biomedical researchers and not supporting 'scientists' who still support the PACE trial would be a good start.
     
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  3. Sasha

    Sasha Fine, thank you

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    Bump - this is happening now.
     
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  4. Wildcat

    Wildcat

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    The woman speaking at AFME's conference 11am, Christalla Bailey, representing M.E. Support in Glamorgan, was encouraged by her International Evangelical Church leaders to start a local Church branch and an 8 week 'Healing Rooms' course of a Christian Evangelical movement, 3GMinistries, on the basis that she recovered from ME by a Miracle:

    http://healingroomscardiff.co.uk/healing-rooms-team/

    3G Ministries- Our Team – Healing Rooms Cardiff Founders

    Christalla Bailey
    "We started a “House Of Prayer” after I got miraculously healed after 23 years of M.E. After being encouraged by our local church leaders to start an eight week course in our home, we started the House Of Prayer, a year later we started Healing Rooms. This was because we saw so many answers to prayer that we had to open our doors for others to experience what was taking place. I am thankful to our wonderfully dedicated team and to God for guiding us."

    ~~~~~~~~~~~~

    .
    I do hope that Christalla Bailey's Evengelical religious group is not recruiting people with ME to her Evangelical Org, on the basis of her Miraculous healing and her very public and organised religious Evangelism about her miraculous healing.



    What are the ME Glamorgan org thinking of!
    .
     
    Last edited: Nov 18, 2016
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  5. Chrisb

    Chrisb Senior Member

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    I suppose it is no more unlikely than people with ME being cured by the Lightning Process, or, indeed, CBT.
     
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  6. Wildcat

    Wildcat

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    Last year, or the year before , AFME invited an Ancestor Healing Group to advertise at AFME's annual conference. It does suggest a worrying lack of reasonable discernment of the part of AFME


    It is different from Lightning process which is overtly a commercial product. What ME Glamorgans representative does, religious evangelising about her 'miraculous healing' via a religious Org, she does as the representative of an official ME group representing people with ME in Glamorgan.
    .
     
    Last edited: Nov 18, 2016
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  7. Sasha

    Sasha Fine, thank you

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    Sonya just said that the MEGA patient advisory group would have 12-15 people on it, if I understood that correctly - and I'm wondering if I did, because that seems a massive number. She said that they're now under time pressure with their proposal (didn't quite catch whether an application deadline has just been announced - I think it has) and that they hope to get their new website up in the next week or two and start recruiting.

    Please correct me, anyone who caught this more clearly!
     
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  8. Valentijn

    Valentijn WE ARE KINA

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    I didn't get a number due to my video feed freezing, but the rest is the same impression I got. Audio isn't great, so it can be hard to tell.
     
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  9. Sasha

    Sasha Fine, thank you

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    I lost my video too - hoping others maybe caught more detail.
     
  10. Sasha

    Sasha Fine, thank you

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    Coming up at 12:50 pm: Sonya Chowdhury talking about "Our global movement".
     
  11. Valentijn

    Valentijn WE ARE KINA

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    ... that's just begging to have "bowel" strategically inserted :cool:
     
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  12. Wildcat

    Wildcat

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    (Sorry about the bolding, I didn't set it to bold and cant get rid of it the normal way)


    AFME Livestream Comments thread :


    lizziedripping 10:54 AM How did the membership of AfME stand at year end 2015, please


    Action4ME 10:55 AM I don't have those figures to hand Lizzie, sorry. I can only answer questions that are directly related to the presentations.



    lizziedripping-1 11:54 AM Could my Q re membership numbers be raised as a Q during session "Questions on the Treasurer’s report for 2015-16 and on the Trustee Report and Accounts of the Charity to 31 March 2016", please?



    The questions above have been deleted





    .Someone repeated the question to afme -

    Sweetie7734 11:07 AM AFME - why can you not just answer the question by a person on this channel, and state how many members the Charity has? The question is not unreasonable. Yet you appear to have deleted the quesion previously asked, without answering .


    Action4ME 11:13 AM Hi Sweetie7734, as I said earlier, I don't have access to those figures. I'm monitoring the technical aspects of this livestream. If I get a chance I will try to pass on questions later.


    Sweetie7734
    12:24 PM Hi AFME - about diagnosis - the Canadian Consensus Criteria (CCC) have been in existence since 2003! Why have neither AFME or the APPG lobbied to have the CCC (or the later International Criteria, ICC) adopted as official UK policy? After all, those diagnostic Criteria are ME Criteria, designed to identify ME from other conditions which feature fatigue?



    Action4ME 12:21 PM We're currently only taking questions from members of the audience who are in the room to ensure we stay on schedule. I will have to check whether or not questions can be taken from the livestream for the afternoon sessions.


    Sweetie7734 12:15 PM So can viewers not pass on questions to the Panel via this comment section? I rather hoped that would be possible x



    lizziedripping-1 12:34 PM "I will have to check whether or not questions can be taken from the livestream for the afternoon sessions."
    Thank you. Why have our previous exchanges been redacted?
     
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  13. Wildcat

    Wildcat

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    Sonia is saying that the mysterious ME/CFS International Alliance, which she says she instigated, which no one else knows anything about, is just an informal network/might be a good idea/talking shop, sounds vague .....

    But Sonia has already sent a letter to Dr Patricia Grady, Institute Director, National Institute of Nursing Research, letter by Sonya Chowdhury, CEO, Action for M.E., in the name of the M.E./CFS International Alliance, and listing the supposed membership Orgs ... a letter about about the Shorter lecture.
    https://www.actionforme.org.uk/news/me/cfs-international-alliance-protests-shorter-lecture/


    But Sonia was vague about the status of the supposed 'ME/CFS International Alliance'

    Is the International Alliance a formal Org or not? One member, Jen Brea, says she has not formally signed up to such an alliance and was in the dark about being a member, and in the dark about the letter sent in her organisations name (MEAction USA)

    http://forums.phoenixrising.me/index.php?threads/new-org-me-cfs-international-alliance.47920/
    .
     
    Last edited: Nov 18, 2016
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  14. Sasha

    Sasha Fine, thank you

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    I think (poor audio - not sure) that Sonya said they had received a legacy that would allow them to have someone at the United Nations for a year, with support already offered by a cancer charity about how to advocate there.
     
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  15. soofke

    soofke

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    Dutchy
    @Chrisb I've heard some optimistic stories about gardening :tulip:
     
    Last edited: Nov 18, 2016
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  16. Solstice

    Solstice Senior Member

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    So AfME is gonna advocate for us at the UN? Good times ;( .
     
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  17. Sasha

    Sasha Fine, thank you

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    Rountable (including online discussion) coming up at 2pm. I thought there was going to be a lunchbreak now but Dr Dunn (?) seems to be back.
     
  18. Cinders66

    Cinders66 Senior Member

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    Really unimpressed by the small bit I saw by SC and their talker on the APPG also. AFME advertise themselves as largest ME charity, they don't act like it. We supposedly have between 100,000 to 600,000 sufferers if you take looser criteria, why does this look so amateurish. They aren't going to lobby and campaign but "inspire", the focus is still on self management, they haven't got anywhere with the advocacy aims announced a couple of years back - this is after being in existence nearly 30 years? Right back in2002 I think AFME announced report on failure to care/services and medical help....
     
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  19. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Re "Our Global Movement" (at around 12.50) and the "International Alliance":

    Sonya said she had been talking to groups in the USA, in Canada, Australia, Japan and other countries, but named no specific orgs or org reps other than Solve CFS (at that point she introduced a short video by Carol Head and a man whose name I did not catch).

    Although as Wildcat says, a list of "current members" of the International Alliance had already been published by AfME - a list that #MEAgenda's Jen Brea is in the process of investigating the status of.

    Sonya said of the alliance "we are exploring what that means".

    So despite the list of "current members" already published on 7 November (and in whose name the joint letter re Shorter was sent) the "alliance" was presented at today's annual meeting and AGM as a nebulous concept.
     
    Last edited: Nov 18, 2016
  20. Wildcat

    Wildcat

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    Sheesh, Sonia Chowdhury will continue "exploring" what things mean, Inspiring, Enabling, 'Helping AFME members reach their full potential' (yes that is an AFME Mission Statement!), which is patronising to say the least .... Waffling about grandiose but vague international schemes that dont have any details or bite ..... flashing photos of the UN about the place ...... until we are all pushing up the daisies!
    .
     
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