1. Guest, the 'News in Brief' for the week beginning 6th July 2020 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice
  3. Guest, the DecodeME study has announced £3.2m of funding, click here to read about it.
    Dismiss Notice

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

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

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    4,730
    Likes Received:
    39,555
    Location:
    UK
    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
  2. Trish

    Trish Moderator Staff Member

    Messages:
    23,787
    Likes Received:
    117,464
    Location:
    UK
    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.
     
    MEMarge, JohnM, alktipping and 2 others like this.
  3. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    5,107
    Likes Received:
    33,827
    Location:
    UK West Midlands
    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.
     
  4. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    2,526
    Likes Received:
    16,933
    The English is unnatural. Are we sure there is human involvement?
     
    alktipping likes this.
  5. Andy

    Andy Committee Member & Outreach

    Messages:
    9,875
    Likes Received:
    71,806
    Location:
    Hampshire, UK
    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 URL for an archived version of the site is https://web.archive.org/web/20190914091905/http://www.afme.org.uk/
     
  6. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    2,117
    Likes Received:
    13,168
    Location:
    Cornwall, UK
  7. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,105
    Likes Received:
    14,898
    rvallee and Trish like this.
  8. Trish

    Trish Moderator Staff Member

    Messages:
    23,787
    Likes Received:
    117,464
    Location:
    UK
    I agree it's a scam.
     
    rvallee likes this.
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    4,730
    Likes Received:
    39,555
    Location:
    UK
    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.
     
    Trish likes this.
  10. Trish

    Trish Moderator Staff Member

    Messages:
    23,787
    Likes Received:
    117,464
    Location:
    UK
  11. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,610
    Likes Received:
    29,427
    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.
     
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    4,730
    Likes Received:
    39,555
    Location:
    UK
    TiredSam, MeSci and Trish like this.

Share This Page