May 12, 2017 Is International ME/CFS and FM Awareness Day
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Spreading the word - other ME/CFS forums

Discussion in 'Advocacy Projects' started by slysaint, Nov 10, 2016.

  1. slysaint

    slysaint Senior Member

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    Adding more as I find them:
    https://healthunlocked.com/edmesh

    this is another on healthunlocked:
    https://healthunlocked.com/meandcfssupport

    think it would be very good to get a presence on healthunlocked as there appear to be a number of non UK orgs(non ME) up there as well.
    @Mark ?

    Edit: I would also like to suggest posting a link to #MEpedia on any sites people visit, whatever you think about it, it's got to be better than the WIki version as far as correct info on ME is concerned.
    ETA: I'm done with this now.............if anyone wants to take over fine by me.
     
    Last edited: Nov 28, 2016
  2. worldbackwards

    worldbackwards A unique snowflake

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    And this is where the internet turns back on itself. We're famous!

    https://www.reddit.com/r/cfs/comments/5f29n6/thoughts_on_the_phoenix_rising_forum/

    Lots of fixations on "quack treatments" (I usually ignore most things about treatments anyway. There's a whole other PR I never see). And a couple of amusing quotes:
    I hope it's me!
     
  3. actup

    actup Senior Member

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    Invisible Woman likes this.
  4. justy

    justy Donate Advocate Demonstrate

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    Doesn't this idea smack slightly of colonialism? That we presume to know more/better information and must pass it around to the poor masses?

    On another note, I spent a lot of time on one of the above mentioned forums, before I came here. It was a lovely, small, friendly place full of lovely kind people who brought into some of the BPS stuff - because of that I ended up having to leave and landed here. When I came to these shores I found it a large, bewildering, slightly hostile territory, but eventually found the natives to be friendly if you put a lot of effort in.
     
  5. wdb

    wdb Senior Member

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    Don't forget the numerous ME/CFS focused Facebook pages and Twitter accounts, that seems to be increasingly where online discussion is going, some people are even arguing that forums are dying, I hope not.
     
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  6. worldbackwards

    worldbackwards A unique snowflake

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    I think a lot of forums are dying and being replaced by T******/F*** *** and it's a real shame - I like the idea of a small community that isn't lining someone's pockets, and catering to interests outside the mainstream without someone butting in and leaving you a nasty message.

    But I don't think that PR will go away for a long while; it offers somewhere safe enough for people not to have to worry about being attacked for being ill, and slow enough that you can leave it and come back later and you won't have missed that much. All in all, it functions as safe space, community, help desk, news desk, rant space, etc, etc. And it has a captive audience: we really aren't going anywhere. If PR didn't exist, it would be necessary to invent it.

    If PR were going to die, I think it would be like Freddie Kruger or Jason or something - you'd think it was dead, but it would always come back for one last scare.

    "Reddit users to the southwest, sir. Thousands of them!"

    [​IMG]
     
  7. slysaint

    slysaint Senior Member

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    2009 MEA website
    "
    Internet forum offers tranquil support for people with ME/CFS
    The co-ordinator of the ‘Phoenix’ internet forum has been in touch to request that we publicise this forum once again and invite people to join. This item will be held in place only until midday on Thursday, 6 August, as ‘Phoenix’ is only able to welcome and get to know a small number of applicants for membership at any one time.

    Members have been ‘talking’ to each other quite happily for the past five or six months, and Phoenix Rising now invites other people with ME/CFS to share their joy at being able to open up to each other in a friendly, non-judgemental way. Only friendly and non-combative members will be welcome."
     
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  8. Esther12

    Esther12 Senior Member

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    Oops. That was before I joined. I'm only combative in a friendly way!

    I think it's good to have a wide range of people posting different ideas about things, but also to try to have it normal and okay for everyone to challenge one another, and point out when they think mistakes are being made. I'm sure we could be better at that, but PR does pretty well imo.

    I think that new members can find it a bit 'hostile' if they turn up with a minority view and suddenly have lots of people challenging them in a way they're not used to. I think that if people have lurked a bit and seen that it pretty normal for everyone to get challenged on things then they're less likely to take it personally.
     
  9. worldbackwards

    worldbackwards A unique snowflake

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    When did it change? :)
     
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  10. wdb

    wdb Senior Member

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    At the bottom of the article,

     
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  11. worldbackwards

    worldbackwards A unique snowflake

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    That explains a lot.
     
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  12. Barry53

    Barry53 Senior Member

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    Just discovered this South African site ...


    The introductory message is definitely arresting ...

    upload_2016-12-5_22-32-34.png
     
  13. Mij

    Mij Senior Member

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    @Barry53 good description . . . I wish they would be more mindful on which stock photo they print.
     
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  14. worldbackwards

    worldbackwards A unique snowflake

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    She has the look of someone who's seen something grotesque yet fascinating on the TV, Ed Balls on Strictly Come Dancing perhaps.
     
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  15. Mij

    Mij Senior Member

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    @worldbackwards I first thought constipation . . . but the added make-up threw me off.
     
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  16. worldbackwards

    worldbackwards A unique snowflake

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    Ah, but it wouldn't be an ME picture if she hadn't had time to do her make up before the mild suffering began. :)
     
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  17. slysaint

    slysaint Senior Member

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    I'm not on Twitter or Facebook. Any South Africans on PR?



    ME CFS Foundation South Africa:
    ME/CFS Facebook support group:


    Send an email to info@mecfssa.org to join our online support group.

    Please note that the support group is classified as a ‘closed’ Facebook group, in other words it can only be joined by invitation and the content can only be viewed by members of the group.
    Help us spread the word
    Please like and share our Facebook page, and follow us on Twitter (@mecfs_sa).
     
  18. Barry53

    Barry53 Senior Member

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    Er no ... if she had been looking at "that" it would have been a very authentic looking photo :ill: :vomit:
     
  19. NexusOwl

    NexusOwl Spanish advocate

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  20. Jenny TipsforME

    Jenny TipsforME Senior Member

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    This is a great resource, does anyone have the ability to update these forums re the last day of the UK stopGET petition? Eg @slysaint @justy @Barry53

    We're sharing wording like this


    Or

    Or

     
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