1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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New Research to Explore Role of Online Peer Support on Phoenix Rising Forums

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 22, 2013.

  1. Firestormm

    Firestormm Senior Member

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    tatt very good point about the 'lurchers' and this being a public forum means you don't need to be a member of course to view the goodies :)
  2. EllenGB

    EllenGB

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    I don't post much and as a scientist, have problems with some info. Fora with scientist are stronger. What we need though is for patients to get info on a subject from someone who actually knows about that subject. I'm no expert in chemistry so wouldn't interpret chemical data. A lot of other scientists appear to fele happy to interpret psych lit and they usually get it wrong. Patients should be pickier. There are psychs with ME and who know ME inside out. Don't know of a single group who have knowledgeable psychs to guide them. Ergo: confusion. Patient population has been subjected to lot of trollling which have made psych appear as major source of mess when editors are rarely psychs. They decide what is published. And they tend to decide not to publish critical articles of the CBT model. We need to deal with that. Just check out the BMJ and Lancet on CFS. Last time either published a biomed paper was 1995 (Lane, BMJ.). All editors of BMJ have not been psychs as far as I know but bullies have been going on and on about individuals rather than arguments too long. The main problem is intolerance, not psychiatry. Hence no knowledgeable psych helping big groups. Undermines advocacy.
  3. user9876

    user9876 Senior Member

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    Looking at the login stats for the forum is interesting from this respect
    Online now: 205 (members: 23, guests: 182)
    At the moment but this proportion of guests to members seems pretty typical of the few times I've noticed it.

    I have done some analysis on other non medical forums in the past and I noticed quite a few members who hadn't accessed a forum passed the day they registered. I think these forums might have required registration for access.
    Little Bluestem likes this.
  4. Sasha

    Sasha Fine, thank you

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    I wonder how much the stats reflect the mechanics of logging in. If you don't tick the box to stay logged it, you're thrown out after half an hour. I'm permanently logged in but actually here for very little of the time in total. Some people might only bother to log in if they're going to post a message.
  5. Firestormm

    Firestormm Senior Member

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    Sasha I am similar. I tend to leave myself logged in and the internet on all the time in the background. Sometimes even when I am in bed! :)
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I wonder whether a lot of members are too ill to participate?
    peggy-sue and Firestormm like this.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    There are dogs using the forum?! o_O
    Bob, peggy-sue and Firestormm like this.
  8. biophile

    biophile Places I'd rather be.

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    Despite no apparent charges or arrests for the alleged criminal activities for which people in the general population are charged or arrested daily, it has nevertheless been claimed or implied that 50-100 ME militants in the UK are as dangerous as animal rights extremists, and more dangerous that insulting Islam or visiting Iraq and Afghanistan, or going over Niagara falls in a barrel. It has even been claimed that there is a dedicated police unit monitoring the situation.

    Patient forums are supposedly a breeding ground of paranoia and radicalism, and occasionally there is some indication that they are being observed by the sort of people that promote or believe in the above themes. Not to mention the default dismissal of criticisms as being borne from extremist patients who do not understand the mind-body connection, fear the stigma of mental illness, and would rather everyone stay unwell than admit to their own psychological problems.

    So are a few of these lurking "guests" such people who take all that literally? If so, perhaps they could stay and genuinely learn a thing or two about why many patients are frustrated and critical in general, without sorting to the common simplistic explanations and inaccurate stereotypes or woefully inadequate sound-bites?
    currer, Roy S and Valentijn like this.
  9. Dr Neil Coulson

    Dr Neil Coulson

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    Hi,

    Yes - in the survey I shall be asking about engagement with the forum and that typically maps on to what some people call 'lurkers' and 'posters' - though I plan to go beyond this simple distinction and be more detailed. The comment about those who have moved on is very pertinent and something that would be fascinating to research. However, for now - the plans are to focus on current members but i do acknowledge that future research may usefully seek to explore the reasons shy people move on and drop out of forums.

    Best wishes,

    Neil
    Firestormm and Valentijn like this.
  10. biophile

    biophile Places I'd rather be.

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    IIRC, some people moved on to a brand new forum primarily because they were frustrated or unsatisfied with the moderation here during the heated debate that occurred during the XMRV saga? And/or Cort's ties to the CAA?
  11. Firestormm

    Firestormm Senior Member

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    Well. Learn something new every day! I was under the now realised, mistaken impression, that IIRC on certain comments related to some - I dunno - cell or gene or something! :redface:

    Gods I feel old sometimes :nerd:
    rosie26 likes this.
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I wish you wouldn't. You're a spring chicken compared to me, so every time you talk about being old, that makes me ancient! :eek:
    Firestormm likes this.
  13. Bob

    Bob

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    Ah, a translation! Thanks for that Firestormm. I'd been wondering about that one for a while.
    It also took me months to figure out what 'BPS' means! (bio-psycho-social) (I think)

    some other basics...

    lol - laugh out loud
    rofl - foll on floor laughing
    FWIW - for what it's worth
    WYSIWYG - what you see is what you get
    rosie26 and Firestormm like this.
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    It's quite ironic that IIRC is the one I forget most often! I had to look it up (again).

    I thought that BPS was being used to mean British Psychological Society.
    Bob likes this.
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    But heaven help those using google translate to read here! :confused:

    Sushi
    Bob likes this.
  16. Mark

    Mark Acting CEO

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    Hmm...if we're raking over that one, I think there were a number of reasons behind that breakaway, I couldn't confidently say what the primary reason was. I think there were a few mistakes made over time which built up a bit, but there was certainly a lot of anger when Cort began to warn that it was looking like XMRV might not pan out, and that issue seemed to be a key catalyst. In my opinion, the moderation at that time was of a very good standard.

    And I'd phrase it as Cort's "supposed", "alleged" or "imagined" ties to the CAA.

    From what I understand, the breakaway forum then split further after an argument between two of its founders (about moderation?), and then the breakaway from the breakaway split again...though I haven't really kept up with developments since then, and much as I do miss some of the people who left, thinking about it all does tend to remind me of this sketch (parental advisory: swearing).
  17. Firestormm

    Firestormm Senior Member

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    :D:rofl::thumbsup:
  18. Nielk

    Nielk

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    ..and so we are the;

    lo - leftovers
    rm- remains
    us - unshakables
  19. peggy-sue

    peggy-sue

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    It wasn't me!:D

    (I was absent when it happened.)
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    :):D:lol:

    Maybe it all boils down to the fact that "We are all individuals"...:D

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