Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Action for ME or Inaction for ME or even worse?

Discussion in 'General ME/CFS Discussion' started by Yogi, Mar 24, 2017.

  1. Yogi

    Yogi Senior Member

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    This is not a surprise to me. Is it to anyone else?

    I have always wondered how Inaction for ME would cover the PACE trial when lots of articles about it come out and it becomes too big to ignore.

    None of the major stories this week (**) about the PACE scandal have been mentioned on Inaction for ME's news thread or its twitter account. they are keeping their members in the dark.

    https://www.actionforme.org.uk/news/

    https://twitter.com/actionforme

    They always have nonsense stories and always asking for money,

    Can anyone take a snapshot of these this week for evidence?

    This is the ME communities BIGGEST problem. This is the root cause. See also

    http://forums.phoenixrising.me/inde...ded-by-action-for-me.44622/page-3#post-726339

    http://forums.phoenixrising.me/index.php?threads/afme-and-pace-trial.42801/#post-692577


    In fact I think calling them Inaction for ME is being too generous and charitable to even call them that. They are actively working against the interests of the ME community and in conjunction with the psychiatrists.

    Nothing will improve for people in the UK until AFME are taken out. That is the hard truth.


    ** examples

    The Conversation US: How a study about Chronic Fatigue Syndrome was doctored

    Do graded activity therapies cause harm in chronic fatigue syndrome?

    Dr C. Wilshire:The problem of bias in behavioural intervention studies: Lessons from the PACE trial.

    Scientists and patient organisations call for retraction of PACE recovery paper - open letter

    Investigator bias and the PACE trial by Steve Lubet in Journal of Health Psychology
     
  2. Demepivo

    Demepivo Dolores Abernathy

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    @Yogi Thanks for your post.

    How about copying and pasting the details and sending them to Sonya Chowdhury & Clare Ogden (Press Officer)?

    Sonya@actionforME.org.uk

    clare@actionforme.org.uk

    Be polite & you should get an answer (if not, resend a few days later)

    Hope this helps :)
     
  3. Keela Too

    Keela Too Sally Burch

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  4. keenly

    keenly

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    Yep you know what's up. Just look at their treatment section. CRAP.
     
    ladycatlover likes this.
  5. Jan

    Jan Senior Member

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  6. daisybell

    daisybell Senior Member

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    I've just looked at their website for the first time, and I have to admit that it surprised me. There is reasonable information, and under the treatment section, it clearly says that GET has been found to be harmful in surveys, and that reanaylsis of PACE found no evidence that CBT or GET work....
    So my impression is that the website is ok - I just wish they would develop some courage and admit they were wrong..
     
  7. aaron_c

    aaron_c Senior Member

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    From the letter:

    Since its publication, Action for M.E. has been repeatedly asked to sign this letter, and we are pleased to make our position clear.

    Any decision to support this letter would need to be taken by our Board of Trustees, and no approach was made to us in advance of the letter being published. Given that the letter has been already sent, and that getting our Board members together would take at least five working days, Action for M.E. is not in a position to sign at this point in time.
    Then they go on to say that their website generally criticizes the PACE trial, as @daisybell noted.

    I'm not impressed; this smells like the kind of word-play that lawyers use. Yes, they can't sign the letter as things stand now, but they avoid answering whether they would sign it. Perhaps it's like everyone says, they don't want to spend time on it and they are just waiting for the whole thing to go away. Obviously they still don't understand what a sore point this is.
     
  8. Keela Too

    Keela Too Sally Burch

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    Agree @aaron_c they did not link to the letter to show support, but rather to try and skirt round why they didn't sign it. However AfME did put a link to the letter on their site, which someone up-thread said they had not done. I was on my phone at the time so I didn't expand further.
     
    ladycatlover and aaron_c like this.
  9. Yogi

    Yogi Senior Member

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    I am not a member. I also think they will give a non answer as they have done on any important issue and effectively are a lost cause.
     
    ladycatlover likes this.
  10. Demepivo

    Demepivo Dolores Abernathy

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    @Yogi you don't need to be a member. You'll get a reply.

    You have made valid points & they are worth raising. You want to start a dialogue, give it a try if you have the time & energy.
     
    ladycatlover likes this.
  11. slysaint

    slysaint Senior Member

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    They do have some good information; eg Benefits advice.
    But if you look in the News and Research sections for example you see their 'sanitised' versions of what is happening.
    for example:
    Severely affected in MEGA are "absolutely essential"
    March 30, 2017

    The Scientific Team and the Patient Advisory Group for MEGA have confirmed that data will be collected from those most severely affected by M.E., preferably through home visits.

    The latest update from the MEGA team confirms that including data from this patient group is considered “absolutely essential”.

    It also confirms that post-exertional malaise will be a prerequisite for inclusion in the bioresource and that those whose samples are collected for the bioresource will have their diagnoses and severity of illness confirmed and recorded at point of collection.

    The update explains that a preliminary funding application to the Wellcome Trust has been turned down but the team remains focused and is working on other funding applications.

    It also adds that while three people have resigned from the patient reference group the remaining 12 – some of whom have experience of severe M.E. – remain enthusiastic and “valuable progress has been made”.

    And this is why I suggested a forum for carers/parents on PR:

    Forums for carers, parents and young adults launched
    March 29, 2017

    Action for M.E. has today set up two new message boards within our M.E. Friends Online forum – one for carers and parents, and another for young adults aged 18-26, both of which can be accessed via the forum hub on our homepage.

    Two other private forums - one for under-18s and one for parents and carers of young people with M.E. – will be set up on the Action for M.E. website separately from M.E. Friends Online. These will be members-only forums (ie. users will need to be members of Action for M.E.) that are accessed separately from each other. The aim is to launch the new forums by Wednesday 12 April, or sooner if we can."

    On the Research section:
    https://www.actionforme.org.uk/reso...ic-me-surveillance-study-youre-funding-about/

    Study lead: EC

    You don't have to dig very deep. Trouble is most AfME members take everything they are told as the whole truth.
     
  12. Demepivo

    Demepivo Dolores Abernathy

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    @slysaint

    It is true the average member isn't as well informed as yourself.

    That said I know a few members who are unhappy & let Sonya Chowdhury & Clare Ogden know, especially about the EC grant.

    Would transfer the information from your post to an email?
     
  13. Solstice

    Solstice Senior Member

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    I think it didn't do much good in the past, but anyone is welcome to try. I wouldn't expect much from the outset though, the chances you get them to change course are slim.
     
    Yogi likes this.
  14. Demepivo

    Demepivo Dolores Abernathy

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    @Solstice discussing it on PR won't change anything :)

    Let the b*st*rds know in their inbox!
     
  15. Yogi

    Yogi Senior Member

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    I disagree it is important that people are made aware here of AFME and do not fund their operations in any way (by membership or fund raising).

    I repeat charities should lead and patients should not have coax or pressure them into doing something which is common sense - i.e. not to act against patients interests that they claim to serve. AFME are well aware of the issues and they will not suddenly change their spots.

    Hopefully people here in PR are all aware of AFME and are not members of an organisation which brought us PACE trial and now MEGA. Hopefully no-one here fundraises for PR. If they do know of people that do they should let others know of AFME's history and it acts against our interests and instead with the Wessely school.
     
    Invisible Woman, Solstice and Jan like this.
  16. Demepivo

    Demepivo Dolores Abernathy

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    Unfortunately those at AfME don't spend their days waiting for somebody to post something here and then choose to ignore it.

    What is more important.... Getting likes on PR from strangers on different continents or doing stuff in the real world?
     
  17. slysaint

    slysaint Senior Member

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    Ever occurred to you that some of us might be doing both?
     
  18. Solstice

    Solstice Senior Member

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    Raising awareness isn't exactly doing nothing. People have banged their heads against the wall that's afme for years now with no iota of change. Through spreading information they are now getting people to leave that organisation and joining one that supports us properly. Afme and ayme have had to merge because they're apparently hemorrhaging members, so I'd say it's working. And what better place to raise awareness about a CFS-charity than on a M.E./CFS-forum?
     
  19. slysaint

    slysaint Senior Member

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    Taken from AfME website (new children and young people section):
    "Sometimes we hear about doctors who don't take M.E. seriously, or wrongly believe that it's a mental health problem. The good news is that the number of doctors with this view is getting smaller, thanks to positive work by supportive professionals and charities like Action for M.E., and a growing body of research."

    ????? the world according to AfMEo_O

    eta: The Managing symptoms section:
    Activity Management
    GET and CBT
    https://www.actionforme.org.uk/children-and-young-people/your-health/managing-symptoms/

    also found that in the Research section:
    our Scientific Advisory Panel, made up of researchers with a proven track record in their field and ideally with a specialism or interest within the M.E. field,
    The page from the link to the Scientific Advisory Panel has gone.
     
    Last edited: Apr 4, 2017
  20. Solstice

    Solstice Senior Member

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    Did anyone track when they were supposed to have a board-meeting which should include discussing signing the open letter? I don't have twitter myself alas, but if someone could keep reminding them that would be great.
     

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