1. Guest, our 'News in Brief' post for w/c 10th June can be found by clicking here.
    Dismiss Notice

BBC Radio Bristol - March 7 (available for 28 days)

Discussion in 'General ME/CFS News' started by Sly Saint, Mar 9, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,030
    Likes Received:
    25,532
    Location:
    UK
    Starts around 2.11.00

    John Darvall. Interview with ME sufferer (ME for 20 years) Liz, who participated in pre PACE Frenchay trial in 2002. Mentions PACE trial and GET being discredited, #MillionsMissing campaign. Also talks to her husband re NICE guidelines and debate in HofC.

    good stuff.

    short music break.

    Interview with Clare Ogden from AfME.

    JD talks about #MM in Bristol last year.......but of course AfME were not there:rolleyes:

    leave people to make up their own minds about the rest (ie AfMEs self-promotion).

    JD poses some very good questions.

    https://www.bbc.co.uk/sounds/play/p070nh1h

    eta: he briefly, at the end, mentions Phil Hammond being an advocate for pwME. I think someone needs to fill him in on Crawleys work on GET.
     
    Last edited: Mar 9, 2019
  2. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    843
    Likes Received:
    5,122
    JD is excellent. The program was informative, even a lady severe but not in the worst severity was able to show without energy, we have no life. Unfortunately it seems in AFME and other charity interests to present a rosy progesss picture. Whilst it was progress for enough MPs to care and get this debated in parliament with quite a high level of knowledge the outcome of the debate, which AFME know because it was discussed on their page , from the the minister involved was nothing, same old defence and justification of status quo. I’d prefer compete honesty to get a patient uprising for the millions missing protests,

    Regarding #MM this year it’s about biomedical research funding...great. What will AFME be doing? I see mea are doing an awareness week stressing it’s real and physical which I thought had been done hundred times before ..l
     
  3. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    4,287
    Likes Received:
    28,509
    Why do I worry that AfME seem to have a "business model" that, to me at least, seems to put their own self-promotion and eminence ahead of the real science that is needed to help pwME.

    Discussion about the staffing and structure of AfME has been moved to this thread.
     
    Last edited by a moderator: Mar 10, 2019
    TiredSam, Sean, DokaGirl and 9 others like this.
  4. DigitalDrifter

    DigitalDrifter Established Member (Voting Rights)

    Messages:
    94
    Likes Received:
    504
    @2:28:20 - He says people don't die of ME, she replies suicide rates are higher in ME patients. Does anyone have any official statistics on this?
     
    Barry likes this.
  5. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    843
    Likes Received:
    5,122
    The most recent research on this finding the 6x figure was I believe simon wessely paper
     
  6. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    1,567
    Likes Received:
    12,993
    Location:
    Canada
    This is such a poor argument. No one has ever died of full body paralysis either. Illness and disability have cascading effects that lead to increased mortality. When those effects are denied or not accommodated people die. One does not need to be burned to ashes to die from a fire. The fire itself can even be quite far away and still end up being deadly.

    The effects of ME are denied and people die because of it. That's a fact. It's the neglect that kills, not the disease itself, and frankly that's 100x worse for those who make it happen, because they are the ones creating the conditions by which people die from a manageable disease that no one should die from. Those deaths are the direct result of this denial, it is blood on the hands of the deniers.

    Also by that definition kidnapping someone and locking them in oubliettes for the rest of their lives is no biggie as long as they're kept alive. Dying isn't the only adverse outcome to a situation. A life of suffering is a damn serious situation and it's monstrous to deny and perpetuate this reality by willful choices.

    "Locked-in syndrome is actually great, you get to spend all of your days in bed, worry-free" is definitely not as strong an argument as some people think it may be. It shows stupendous ignorance of the reality of illness and a great example of survivorship bias.
     
    andypants, MEMarge and TiredSam like this.
  7. phil_in_bristol

    phil_in_bristol Established Member (Voting Rights)

    Messages:
    33
    Likes Received:
    332
    Location:
    Bristol
    Actually (as one of the co-organisers of Bristol #MM 2018 myself), AfME *were* there, as I spoke to their representative, and they were also at #MM Bristol 2017 (two staff, or maybe one staff & one volunteer, as I remember). (edit: that was Sept 2016 - I dont' think there was a 2017 #MM)

    On that same day, AfME sent staff to Geneva where they collaborated with others to support #MillionsMissing in Europe. https://www.actionforme.org.uk/uploads/images/2018/04/millions-missing-2018-take-part.pdf

    As a co-organiser (again) for #MM 2019 Bristol, I will be contacting John again and hope to get his support as usual (I attended his radio show myself last year in the run up). If anyone wants to PM me about this. please do.

    Phil
     
    Last edited: Mar 13, 2019
    Esther12, andypants and MEMarge like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,030
    Likes Received:
    25,532
    Location:
    UK
    https://www.s4me.info/threads/afme-...r-millionsmissing-contribution-should-be.3489
     
  9. phil_in_bristol

    phil_in_bristol Established Member (Voting Rights)

    Messages:
    33
    Likes Received:
    332
    Location:
    Bristol
    not sure what specifically you are saying by posting a link to a whole thread, but AfME sent people to Geneva on May 12th last year (as discussed in the thread), and there was most definitely someone from AfME at Bristol #MM too, as i spoke to her prior to speaking to the reporter (who she also spoke to).

    It is, of course, possible, for representatives from an organisation to be in two different places on the same day? (a saturday , too: part of these worker's weekends).

    So, no: AfME were present at #MM 2018. Incidentally, if AfME organised a day of action, and other charities spoke about it in glowing terms, but weren't *actually* there, would you critique them, too? Just checking for bias.
     
    Last edited: Mar 13, 2019
    Amw66 likes this.
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,030
    Likes Received:
    25,532
    Location:
    UK
    I was too tired to give any kind of coherent response (am not that great at the moment); just wanted you to see what the general opinion of AfME doing the #MM thing in Geneva was.

    Also that, although you say they were represented in Bristol, they (AfME) made no mention of it at the time, and in the radio interview #MM in Bristol was brought up by JD but they(AfME) only talked about the Geneva one.

    It would have been an ideal opportunity to mention that a lot of bad ME/CFS research was being done in Bristol on CBT/GET on children.

    "AfME did not support or promote the Millions Missing campaign in 2017 and used alternatives but Sonya Chowdhury used the hashtag #MillionsMissing for fundraising for herself and AfME [21]."

    https://me-pedia.org/wiki/Action_for_ME

    I think you are missing the point.

    I shan't debate this any further but there are several threads on Action for ME on this and other fora which maybe you should read.
     
    andypants, TiredSam and JohnM like this.

Share This Page