The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
Discuss the article on the Forums.

Action for ME Tosses Sir Simon Overboard

Discussion in 'General ME/CFS News' started by jimells, Feb 12, 2016.

  1. jimells

    jimells Senior Member

    Messages:
    1,996
    Likes:
    6,075
    northern Maine
    https://www.actionforme.org.uk/news/sharing-research-data-board-of-trustees-states-our-position/

    In a stunning about-face for an organization that has been closely tied to PACE since it was first proposed, Action for ME has now joined the chorus of calls for releasing the data. The organization will also now specifically require the release of data for all future research that it funds.

     
    Woolie, leela, lycaena and 45 others like this.
  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,063
    Likes:
    4,250
    Toronto, Canada
    The tide continues to turn in our favour.
     
    leela, justy, barbc56 and 17 others like this.
  3. jimells

    jimells Senior Member

    Messages:
    1,996
    Likes:
    6,075
    northern Maine
    They are also asking us to contact the university about releasing the data. I think we should follow their suggestion.

     
    Woolie, leela, justy and 13 others like this.
  4. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,221
    Canada
    [​IMG]
     
    Woolie, leela, justy and 43 others like this.
  5. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    Could it be the new medical officers? Certainly, it's impossible that this could have happened under Alaister Miller. AfME, whilst still officially useless, are surprising me a lot more often than they used to.
     
    Last edited: Feb 12, 2016
  6. Esther12

    Esther12 Senior Member

    Messages:
    8,266
    Likes:
    26,679
    Is there a danger that QMUL would then present this as a campaign of harassment to the tribunal? I don't think QMUL are going to change their mind on this, so think contacting them is unlikely to do any good, and they could try to use it as an excuse for not releasing data: "Look at all these polite and reasonable e-mails we've received.... it's traumatising!"

    I took it to mean that the were talking about the any PACE participants who might be concerned about anonymised data being released:

     
    Woolie, leela, Simon and 10 others like this.
  7. jimells

    jimells Senior Member

    Messages:
    1,996
    Likes:
    6,075
    northern Maine
    Even if every patient and advocate in the world went completely silent, QMUL would claim "Vexation by Silent Treatment". Don't be intimidated. We need to do everything we can to raise the social costs of policies that harm patients. "Think of the Children" that Creepy Crawley will harm with her new "GET for Kids" study.

    QMUL has essentially unlimited resources and we have only each other and our voices. I'm gonna scream and yell until I can't do it anymore.
     
    Woolie, leela, Bob and 9 others like this.
  8. Mrs Sowester

    Mrs Sowester Senior Member

    Messages:
    774
    Likes:
    4,543
    I think @jimells is right on this one, we have a duty to the children who are at risk from GET and from MAGENTA.
    At risk of sounding schmaltzy we are a community of patients and they are our children.
    They have no personal agency, they have desperate parents who think trusting in GET, CBT and LP will make their children better. We know how we feel when people disbelieve in ME, imagine being a powerless child - it just doesn't bear thinking about.
     
    Woolie, panckage, leela and 11 others like this.
  9. Esther12

    Esther12 Senior Member

    Messages:
    8,266
    Likes:
    26,679
    Crawley, MAGENTA and SMILE are not based at QMUL. I don't think that screaming and yelling is likely to be the best use of people's time, and could be used against us. imo people should protest, argue and challenge in as calm, informed and thoughtful a way as in possible, although everyone is free to do whatever they think it best.
     
    Woolie, panckage, leela and 8 others like this.
  10. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,794
    Likes:
    9,166
    Toronto
    Holy Moly, I'm flabergasted. :jaw-drop: This is certainly very welcome if unexpected.
    I've been a harsh critic--I hope they stay the course.
     
    Woolie, leela, barbc56 and 4 others like this.
  11. Mrs Sowester

    Mrs Sowester Senior Member

    Messages:
    774
    Likes:
    4,543
    I agree 100% that shouting and screaming would be a counter-productive tactic.
    But aren't MAGENTA and SMILE follow on trials from PACE? If PACE is retracted or discredited then the rationale behind the follow on trials vanishes - as does funding.
     
    Woolie, leela and Keela Too like this.
  12. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,794
    Likes:
    9,166
    Toronto
    I don't know about the connections between the trials but I do think that once we sink PACE we should concentrate on SMILE and MAGENTA.
     
    Woolie, Keela Too and Mrs Sowester like this.
  13. Scarecrow

    Scarecrow Annie Gsampel

    Messages:
    1,850
    Likes:
    5,029
    Scotland
    @Mrs Sowester, SMILE was supposed to be a study using the Lightning Process (TM), so can't be directly compared to PACE.

    Does anyone know if SMILE is still happening? It's gone very quiet. ?
     
    Last edited: Feb 12, 2016
  14. Mrs Sowester

    Mrs Sowester Senior Member

    Messages:
    774
    Likes:
    4,543
    I think when designing a trial the research team look at the conclusions of available research papers and suggestions for further areas for study - wasn't MAGENTA a follow on from PACE?
     
    Woolie likes this.
  15. jimells

    jimells Senior Member

    Messages:
    1,996
    Likes:
    6,075
    northern Maine
    Yes. We are discussing a small club. The various institutions and individuals all know each other and work together. QMUL, Oxford, and Kings College London are all involved in PACE.

    http://www.ncbi.nlm.nih.gov/pubmed/26521770
    We must push against all the cracks that develop.
     
  16. Sasha

    Sasha Fine, thank you

    Messages:
    12,756
    Likes:
    33,927
    UK
    Bear in mind that an 11,000-strong petition, largely from patients, asking for the data release will be going to the PACE authors and therefore QMUL. IMO there's no further need for patients to contact them - just IMO, though.
     
    leela, justy, Art Vandelay and 11 others like this.
  17. Scarecrow

    Scarecrow Annie Gsampel

    Messages:
    1,850
    Likes:
    5,029
    Scotland
    @jimells, MAGENTA (and SMILE if it's still happening) were / are being led by Esther Crawley in the Bath/Bristol area. I don't know how much formal collaboration there has been with the White / Sharpe / Chalder set. I wouldn't expect there to have been a great deal as Crawley is a paediatrician but I'm sure they exchange Christmas cards or something.
     
  18. user9876

    user9876 Senior Member

    Messages:
    2,406
    Likes:
    16,269
    I think it is important that it goes to the head of QMUL and their governance council. The institution as a whole are responsible for both the PACE trial (legally) and FoI requests. I see it as a failure of their governance that they have not asked the hard questions of White about protocol changes and have been spending QMUL's money on preventing the release of data that would better inform patients about treatments.
     
    Woolie, lycaena, mango and 8 others like this.
  19. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,415
    Likes:
    10,003
    Cornwall, UK
    I think a little more than that. A quick Google shows them both at meetings of the MRC CFS/ME Expert Group, eg. here in 2008: https://www.mrc.ac.uk/documents/pdf/cfsme-expert-group-minutes-1st-meeting/

    edit: reading through that doc, it's weird that Crawley could listen to all that — pathogenic triggers, cytokine action, immune dysfunction, genetics — then come away thinking the Lightning Process was just what children need.
     
    Woolie, GreyOwl, halcyon and 4 others like this.
  20. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,415
    Likes:
    10,003
    Cornwall, UK
    btw, @jimells — thank you for the title of this post which put a huge smile on my face :):thumbsup:
     
    leela, justy, mango and 3 others like this.

See more popular forum discussions.

Share This Page