1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy

Discussion in 'Phoenix Rising Articles' started by Firestormm, Dec 6, 2013.

  1. Sonya Chowdhury

    Sonya Chowdhury

    Messages:
    4
    Likes:
    0
    Hi Bob - we revised the information on our Online M.E. Centre some time ago and do not cite a 30% recovery rate. Best wishes, Sonya
  2. user9876

    user9876 Senior Member

    Messages:
    755
    Likes:
    1,817
    But I assume that you did take recent action to write a letter to the court looking at an FoI request for the trial steering committee saying you did not want the minutes made public. How does this help ensure patient involvment when you wish to keep things secret.
    Min, golden, Wildcat and 1 other person like this.
  3. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,461
    Never-mind taking any positive action, you've not yet even explained your current position, or preference for inaction.

    How do you know that whatever you say will not make up for your inaction, when you've not made any attempt to explain you current position? If you had a reasonable justification, then that would make a difference. I'm keen to see you try to change my mind. Why not try and explain yourself?

    Did you ever? Who is advising you on this stuff?
    Last edited: Dec 10, 2013
    Min, Valentijn and Wildcat like this.
  4. Bob

    Bob

    Messages:
    8,087
    Likes:
    10,386
    England, UK
    Perhaps it's been a long time since I scrutinised AfME's online information.
    I've just had a look, and there is a wide range of PACE-related information on the website, including many links to critical information.
    It even includes a link to the Phoenix Rising PACE trial analysis:
    http://www.actionforme.org.uk/get-i...2012/evaluating-the-results-of-the-pace-trial

    The primary outcome improvement rates that I highlighted earlier (and asked why AfME hadn't published them) is actually now published prominently on AfME's website (although perhaps not explained quite as clearly as it could be) (my emphasis):
    So I have to backtrack, and acknowledge that AfME has published more than I had thought.
    I don't remember having seen this information before on the AfME website. But it seems that AfME's PACE information is more balanced that I thought it was.
    I can't see any reference to 30% recovery rates, and I have no reason to disbelieve Sonya that any such references have been removed.
    I cannot find an explanation of the objective outcomes though (i.e. disability, employment hours, and welfare benefits), and it would be nice to see these results highlighted.

    The website includes a statement from BACME which I disagree with because it ignores the methodological and statistical flaws of the PACE trial:

    So AfME's website information about the PACE trial is much better, and more balanced, than I remember it being. I guess it has grown and evolved over time and, as Sonya says, it has been amended.
    Personally, I'd be reasonably satisfied if the published results of the PACE trial are disseminated clearly and honestly, and it seems that has now been accomplished to some degree on the AfME website, but with a number of omissions (i.e. the objective outcomes.)


    I'm looking forward to AfME's new direction of travel, including the proposed renewed patient engagement. I hope it's a period of renewal in terms of engaging with patients, and representing the needs of patients.
    Last edited: Dec 11, 2013
    peggy-sue, MeSci, Simon and 1 other person like this.
  5. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,461
    re 'prevention', I just posted in a thread about the only trial on 'prevention' I can see happening in the UK at the moment. Looks like a joke study: http://forums.phoenixrising.me/inde...e-effects-of-early-intervention-for-me.13736/

    And similar/worse to the old Chalder/Wessely study which has been so repulsively spun: http://forums.phoenixrising.me/inde...o-educational-intervention-to-aid-reco.13326/

    I have no idea what value anyone could claim there is to this new study.

    That requires the release of meaningful data on recovery. That means AfME should take a proactive approach to ensuring that patients are able to access this data and are able to make informed decisions about their own health care. Instead, they seem happy to let patients be manipulated by quacks.
    Last edited: Dec 19, 2013
  6. Leopardtail

    Leopardtail Senior Member

    Messages:
    1,018
    Likes:
    611
    England
    Given that rather disgraceful salary, I will NOT be renewing my membership.
    peggy-sue and Min like this.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,523
    Likes:
    4,133
    Cornwall, UK
    I find it worth it for the three £10 Goodness Direct vouchers a year, which gives me double what I pay in membership fees! :D
  8. Leopardtail

    Leopardtail Senior Member

    Messages:
    1,018
    Likes:
    611
    England
    Never had the vouchers, so can't comment on that one...
    but nice to see the cheesey grin :-D
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,523
    Likes:
    4,133
    Cornwall, UK
    Look at the ads in the magazine InterAction. The Goodness Direct voucher code is in a box ad. It's the first thing I look for when the magazine arrives.
  10. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,974
    Cornwall England
    Latest Blog from CEO Sonya Chowdhury: 15 January 2014: http://www.actionforme.org.uk/get-informed/news/our-news/ceos-blog-working-on-our-research-strategy

    Simon, Esther12 and Bob like this.
  11. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,290
    Likes:
    8,994
    Amersfoort, Netherlands
    Since they are emphasizing a couple contradictory opinions, my guess is that they'll use that as an excuse to continue business as usual. Useless.
    Min, peggy-sue and Esther12 like this.
  12. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,461
    That's my fear.

    I think that they need a venue for open and ongoing debate, where all views and opinions are not respected, but challenged and picked apart.

    One of the disappointing things here was how totally unwilling Sonya was too even attempt any real defence of Action for ME's approaches.
    peggy-sue, Min and Valentijn like this.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,523
    Likes:
    4,133
    Cornwall, UK
    I got the feeling she didn't know much about the research, or understand it.

    I used to post on the AfME website, and tried posting constructive comments below abstracts in their research section. When my comments didn't appear, I contacted the mods and found that the section wasn't even being monitored. What a wasted opportunity! I had hoped for some intelligent discussion with other scientists and sciency people. At least I finally found that here! :)
    Min, peggy-sue and Valentijn like this.
  14. Bob

    Bob

    Messages:
    8,087
    Likes:
    10,386
    England, UK
    Simon likes this.
  15. Min

    Min Senior Member

    Messages:
    1,186
    Likes:
    1,184
    UK
    AfME gave a miserable £58k to research in 2013. Their salary bill, which is huge for such a small charity, was £545k for 9 employees. The CEO earns £75k a year (the average salary for a charity CEO in the UK is about £27k), more than the research donation. The director of fundraising earns £40-50k. With salaries like this, no wonder they have so little to spend on research.

    Did AfME or its employees as individuals benefit financially from their involvement in the PACE trial?
    Last edited: Feb 23, 2014
    Roy S, MeSci, peggy-sue and 1 other person like this.
  16. PhoenixDown

    PhoenixDown Senior Member

    Messages:
    258
    Likes:
    235
    UK
  17. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,290
    Likes:
    8,994
    Amersfoort, Netherlands
    Doesn't seem like much of a charity at all, when such a huge chunk of funds are going to salaries, and so little to benefit patients. Exactly what skills do those employees possess which make such a salary warranted? It really looks like they're just raising money to pay it to themselves, with a trivial amount left over to spend on actual charitable endeavors.
    Snowdrop, peggy-sue and Min like this.
  18. Min

    Min Senior Member

    Messages:
    1,186
    Likes:
    1,184
    UK
    The enormous salaries would be more suited to a large London based charity than a small Bristol based one.

    AfME's total charitable expenditure in 2013 was £562.473, hardly more than their salary bill. I wish those good people who fundraise so hard for them could be made aware of this.
    Last edited: Feb 23, 2014
  19. Leopardtail

    Leopardtail Senior Member

    Messages:
    1,018
    Likes:
    611
    England
    An average of 50K per staff member (excluding the MD) does seem a lot doesn't it?

    A lot does depend on what 'gross salary' means though. When I ran a company if exployees bought (for example) paper on their own credit cards and submitted an expense claim, then what was paid to them still counted in 'gross salary' reporting in britain does not distinguish the two which is kind of nuts. Same goes for travel cards bought by the company.

    It's also important to realise AfME acts mainly as a source of advice and support and probably spends a lot of cash on that. I would like to see (on this report) a breakdown of what is spent on 'support' vs 'charitable donations'. Support is from a financial perspective mostly about salary.

    Quite why the average is so high does raise obvious questions though!
  20. Leopardtail

    Leopardtail Senior Member

    Messages:
    1,018
    Likes:
    611
    England
    @MeSci
    Sonya Chowdhury is actively asking those of us with ME to comment on their missions statement / goals for research. If you want to be heard and taken notice of now's the time. They complete their review by end march this year.

    B.

See more popular forum discussions.

Share This Page