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AFME - Association for Myalgic Encephalomyelitis website (not Action for ME)

Discussion in 'Advocacy Action Alerts' started by Sly Saint, Oct 30, 2019.

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  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    this website
    https://web.archive.org/web/20190914091905/http://www.afme.org.uk/

    we discussed it at the other place and some people thought it might have been a student project or similar.
    They are not a registered charity as far as I can find out.
    There is no information as to who they are (although they say to contact them).

    their info includes:

    their info on pacing:

    any chance we can get this site amended or shut down?

    Mod note: Direct links removed and replaced with archive link to cut traffic to scam site.
     
    Last edited by a moderator: Oct 31, 2019
    Sly Saint, Oct 30, 2019
    #1
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  2. Trish

    Trish Moderator Staff Member

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    I have had a quick look through the site. There are a lot of short sections on all sorts of aspects of ME that seem to be just one person's half understood waffle. No links to outside sources, no evidence to back statements, nothing useful at all.
     
    Trish, Oct 30, 2019
    #2
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  3. NelliePledge

    NelliePledge Moderator Staff Member

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    If nobody links to it and there’s no traffic it shouldn’t surface high on search

    we can all help de highlight it by removing links from any posts and suggest people don’t go to it.
     
    NelliePledge, Oct 30, 2019
    #3
    Ash, Hutan, bobbler and 5 others like this.
  4. chrisb

    chrisb Senior Member (Voting Rights)

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    The English is unnatural. Are we sure there is human involvement?
     
    chrisb, Oct 30, 2019
    #4
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  5. Andy

    Andy Committee Member

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    Yep, ironically linking to it here will probably help search engines think it's far more important than they should. URL for an archived version of the site is https://web.archive.org/web/20190914091905/http://www.afme.org.uk/
     
    Andy, Oct 30, 2019
    #5
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  6. MeSci

    MeSci Senior Member (Voting Rights)

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    MeSci, Oct 30, 2019
    #6
  7. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    adambeyoncelowe, Oct 31, 2019
    #7
    Ash, rvallee and Trish like this.
  8. Trish

    Trish Moderator Staff Member

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    I agree it's a scam.
     
    Trish, Oct 31, 2019
    #8
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  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    thing is, years ago when I first came across it, it was the site that you were taken to for some of the links that were supposed to be to AfME.
    If you do a basic search on Google for 'Action for ME' it comes up second on the list so it's possible that some of those links are still live. Am surprised, well no I'm not really, that AfME haven't done something about it.
     
    Sly Saint, Oct 31, 2019
    #9
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  10. Trish

    Trish Moderator Staff Member

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    Trish, Oct 31, 2019
    #10
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  11. Esther12

    Esther12 Senior Member (Voting Rights)

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    It could be just a well meaning individual who has struggled to understand all the details of the problems around ME/CFS. It's easy for people who've been following this stuff closely just how confusing it can be for people who are relatively new to it.
     
    Esther12, Oct 31, 2019
    #11
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  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Oct 31, 2019
    #12
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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Aug 24, 2020
    #13
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  14. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Some years ago, AfME forgot to renew their domain registration and lost ownership of the domain. It was bought by someone else and they had to buy a new domain and construct new site content.
     
    Dx Revision Watch, Aug 24, 2020
    #14
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  15. Hutan

    Hutan Moderator Staff Member

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    This discussion has been moved from the News from Action for ME thread.

    While trying to find out what had happened with the AfME Media Guidelines that were going though a consultation period last August/September, I visited the an AfME website. Has it changed recently? I was surprised at the way the organisation is presenting itself.

    It's looking very basic.
    web link removed to reduce traffic to the fake site.
    Edited to add: It's a fake website.

    Here's the home page:
    Screen Shot 2022-12-30 at 10.38.22 am.png

    "afme.org.uk is a free online resource about myalgic encephalomyelitis"

    Is that really the most important thing to know about AfME - that it's a free online resource?

    And the resources are really limited. I didn't find links to materials. And the content really had me amazed. I though AfMe had turned a corner, but the content on this website is, I think, a major u-turn.

    See, for example this content about Pacing:
    That's not Pacing. "which foresees increasing both physical and mental activity in away to avoid worsening of the conditions symptoms"
    "During and intensity of activity are increased gradually over a period of time with the aim to improve the patient's physical and mental functioning in the long term."

    To call me gobsmacked is an understatement. Is this a fake AfME website, or what? Edit - yes it is a fake website

    Under the heading "What did the PACE Trial find?"
    Seriously?

    There are no contact details, the language is pretty poor. It looks really suspicious.

    I have now re-found the proper AfME website
    https://www.actionforme.org.uk

    I think AfME need to do something about the website that is pretending to be them.
     
    Last edited by a moderator: Dec 30, 2022
    Hutan, Dec 29, 2022
    #15
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  16. Trish

    Trish Moderator Staff Member

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    Trish, Dec 29, 2022
    #16
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  17. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I think that was the Action for ME domain name at one stage.
     
    Dolphin, Dec 29, 2022
    #17
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  18. Hutan

    Hutan Moderator Staff Member

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    AfME's section about the PACE trial on their real website is still not ideal:
    The main problem with PACE is not that it was based on a flawed hypothesis. It was that it was so poorly designed that the data it produced cannot constitute reliable evidence for any treatment being helpful. I don't think it's right to focus on 'repeated questions about the methodology'. We know the answers to such questions - and that is that the PACE trial had a hopelessly flawed methodology, as do pretty much all the BPS treatment trials.
     
    Hutan, Dec 29, 2022
    #18
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  19. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Yes, here's a screenshot from one of their old magazines

    Action for M.E..PNG
     
    Dolphin, Dec 29, 2022
    #19
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  20. Andy

    Andy Committee Member

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    That website is registered to
    "Mrs J Gilbert t/a Gilbert [Tag = UKPHA] URL: https://ukpha.org.uk"

    That UKPHA website is an old one that doesn't look to have been updated for around 12 years.
    "Welcome to the UK Public Health Association website

    UKPHA is a unifying and powerful voice for the public's health and well being in the UK, focusing on the need to eliminate inequalities in health, promote sustainable development and combat anti-health forces.

    The UK Public Health Association - known by the initials UKPHA - is an independent voluntary organisation, formed by the coming together of three organisations in 1999 to unite the public health movement in the UK.

    As a multidisciplinary membership organisation, the UKPHA brings together individuals and organisations from all sectors who share a common commitment to promoting the public's health.

    We seek to promote the development of healthy public policy at all levels of government and across all sectors. We act as an information platform and aim to support those working in public health both professionally and in a voluntary capacity."
     
    Andy, Dec 30, 2022
    #20
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