Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Can anyone recommend other CFS/ME forums

Discussion in 'General ME/CFS Discussion' started by redrachel76, Jan 12, 2015.

  1. redrachel76

    redrachel76 Senior Member

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    Does anyone know a good CFS/ME discussion forum that is like this one or even one that is more focused on research?
    I only know this one, Prohealth and CFS/ME Forums and a rubbish NHS one.
    There must be more as this disease is quite widespread.
    Of course I like this forum but I fancy looking at others

    Thanks
     
    kisekishiawase likes this.
  2. Sushi

    Sushi Senior Member Albuquerque

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    There are forums in other languages, if you would be interested, though I think this is the one that has the most research.

    Sushi
     
  3. helen1

    helen1 Senior Member

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    Do you know Health Rising? It's quite research based. Not sure it qualifies as a forum though.
     
  4. Valentijn

    Valentijn WE ARE KINA

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    From what I've seen and read, PR is the largest ME forum. And it seems to have the most rigorous discussions of the science.

    Health Rising started when Cort split off from PR because he wanted to make money from the forum, whereas PR admin wanted it to stay non-profit. I also don't think the science is always particularly rigorous on Health Rising, and a lot more focus is on the more social side and personal experience. I also don't see any forums there, just blogs where people can respond to the author.
     
    kisekishiawase, NK17, Kenshin and 2 others like this.
  5. cigana

    cigana Senior Member

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    I find http://www.mecfsforums.com has a much better scientific discussion of the retroviral hypothesis which seems almost non existent on this forum. Some kind of falling out happened a few years ago that I don't understand, in which a lot of members from this forum were banned I think and they all started posting on that one instead. It was very active at one point but now there seem to be only a few members left.
    If you're into Lyme then this forum is good for scientific discussion: http://www.lymeneteurope.org/forum
     
    kisekishiawase, justy, Woolie and 2 others like this.
  6. redrachel76

    redrachel76 Senior Member

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    Yes, I really like mecfsforums.com but that has gone dead lately.... that is what prompted me to ask this question, I find it hard to believe that this is the only forum on the net in English.

    Thanks for the Lyme disease forum link. I don't have Lyme disease, but it is useful to know, and the off topic research was interesting to look at.

    I tried looking for forums on facebook and joined Viv Wynn's "Desease Research and Support" which is general research news but with a large chunk devoted to ME.

    There is "Invest in ME" Forum on facebook which is dull. ...and they were rude and aggressive when I asked why they exclude anesthesia research and CFIDS Forum research from their conferences.
    There is a Dr Myhill hero worship adoration email group which I deliberately sneaked onto and told them how she worsened my illness. I just felt disgusted at the way they were pushing desperate people to see her.

    There was an anti Wessley thread with little on it.

    That was it. Maybe I haven't searched right.
     
  7. jstefl

    jstefl Senior Member

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    Try the hhv6foundation.org
     
  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    What is it that you are looking for redrachel76? There are people on PR very focused on research and all the relevant studies seem to get flagged up by someone as they come through.
     
    Sushi, justy, NK17 and 1 other person like this.

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