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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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    I've had ME for 15 years. There was very little info/help when I fell ill/was diagnosed and I didn't have internet access. I rarely went to the doctor after the first 5years, but when I did, I began to notice a distinct change in attitude. I had no idea about the politics of ME and was totally unaware of what has been going on for the last 10 years. It was only since I joined PR that I found out (eventually!).

    I imagine this is the case for a lot of ME sufferers out there. In fact I know it is as I have been having a look at other forums; and it's not just long-term sufferers but recently diagnosed who are often fed a lot of out of date or incorrect information, or no information at all.

    So for starters I'm suggesting a list of ME/CFS forums be posted on this thread.

    ENGLISH:

    Patient : http://patient.info/forums/discuss/browse/chronic-fatigue-syndrome-389

    Chronic Fatigue Syndrome CFS/ME Support Forum: http://forum.chronicfatiguesyndrome.me.uk/

    Patientslikeme: https://www.patientslikeme.com/conditions/27-myalgic-encephalomyelitis-chronic-fatigue-syndrome

    Foggy friends: http://foggyfriends.org/

    ME CFS Forum: http://www.cfs-info.com/forum/

    Healthboards: http://www.healthboards.com/boards/chronic-fatigue/

    CFS Subreddit: https://www.reddit.com/r/cfs

    Health Rising: http://www.healthrising.org/forums/

    BrainFog: http://www.brainfog.org/phpBB3/

    Christians with ME: http://www.cwme.org.uk/

    The Student room; Chronic fatigue Syndrome/ME Society: http://www.thestudentroom.co.uk/showthread.php?t=796282&page=41

    MD Junction CFS Forums: http://www.mdjunction.com/forums/chronic-fatigue-syndrome-discussions

    Daily Strength CFS Forum: https://www.dailystrength.org/group/chronic-fatigue-syndrome

    Local M.E. : https://groups.yahoo.com/neo/groups/LocalME/info

    ME Chat (not a forum as such but an emailing group): http://mechat.uneed1.co.uk/help/welcome.html

    to Me or not to Me (Requires login to YUKU): http://tomeornottome.yuku.com/login/loginnow/Login-to-Yuku.html


    Long list of online Support Groups: http://fmcfsme.com/support_group_online.php


    DUTCH:
    ME-gids: http://www.me-gids.net/Forum.html

    NORWEGIAN:
    ME-forum: http://www.meforum.info/


    List of Useful Websites on Australias EMERGE site, haven't gone thro them;
    http://emerge.org.au/useful-websites/#.WCm62_QVLTQ

    please don't post comments if you think this a waste of time:p
    EDIT: I'll add any more you find to this list, and continue adding any others I find.
    EDIT2: I've done my best with the list now it's over to you.
    Final suggestion (take it or leave it):

    I'm not going to coordinate any great strategy but I would like to put forward one suggestion.

    Operation ReMEmber.
    Pick a forum from the list, have a reccy and see if they are aware of PR, if not sign up (if you need to, to post)

    simply say something like

    'Hi fellow ME/CFS sufferers, thought you might find something of interest here........http://forums.phoenixrising.me/index.php?forums/general-me-cfs-news.14/ ,

    please also sign the #stop-get petitions details here: http://www.meaction.net/2016/09/12/uk-and-global-petition-its-time-to-stop-get-trials-for-mecfs/ take care :)'

    and leave it at that (?)

    then check back a few days later to see what the response (if any) is. (?)

    simples:D
     
    Last edited: Nov 17, 2016
  2. undiagnosed

    undiagnosed Senior Member

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  3. Barry53

    Barry53 Senior Member

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    I think this is a great idea. Broadening people's awareness throughout the wider ME community.
     
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  4. tandrsc

    tandrsc

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  5. JohnM

    JohnM Senior Member

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    Many thanks for this @slysaint .. given your thread title, I think it would be a great idea to have ourselves on PR (for those that can, and as and when health allows) contribute to other forums. It would help to raise awareness of current developments and findings in ME biological research. It would also help to counteract the still dominant BPS narrative surrounding ME, and the way in which they continue to frame the debate by conflating chronic fatigue with ME.

    I have been aware of the politics surrounding ME for a few years, and did not want to get involved as dealing with this bloody awful disease is challenging enough in itself. Given the most recent developments here in the UK and elsewhere, ENOUGH is ENOUGH, and I can no longer remain on the sidelines, poor health or no.

    In the same way that we can break down all our activities with pacing, it would be a manageable task if each of us that can - say 2/3 people per forum, to cover for any relapses in health - contribute to discussion, and raise awareness as able, and manage our activity levels that way. Forum by forum .. an approach that can be applied to other ME advocacy routes as discussed on other threads?

    I've not yet caught up on any threads here (with regards to the IoM report if memory serves?) suggesting our disease be renamed SEID. Though I suspect it has its problems, I do wonder if use of SEID provides us with an opportunity to break free from the past (the conflation of ME with chronic fatigue as above), and better confront the BS that is BPS .. that, or would it add yet another level of confusion?

    Thanks as ever to all on PR, and wishing you and yours the best health possible :D
     
    BurnA, Webdog, mfairma and 5 others like this.
  6. slysaint

    slysaint Senior Member

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    Thanks.
    For now I'd just like to get the list, and hopefully in doing so pick up some support for the idea:).
    I think whatever happens after that needs to be treated with some care. I won't say more than that as I know people will have their own opinions and I don't really want to get into that discussion just yet. As you say pacing is key....so let's just go one step at a time;)
     
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  7. eafw

    eafw Senior Member

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    Reddit seems to be a very underused resource - I don't mean the cfs sub specifically, more in terms of putting say UK-based stories on the UK subs and so on. I know people have tried to post on the science sub but had things pulled as not meeting the rules, but I think there is a lot of potential for us to use reddit in our favour if we plan it properly.
     
    wdb, Cohen2, halcyon and 2 others like this.
  8. JohnM

    JohnM Senior Member

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    I hear you @slysaint .. be happy for you to send PM if I can be of help at some point.

    Meantime, I hope to spend some more time reading up on the FITNET-NHS paper .. so many alarm bells ringing on first reading earlier in the week, I nearly put it down to my tinnitus, hehe!
     
    AndyPR, MEMum and slysaint like this.
  9. Zuiderzon

    Zuiderzon

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  10. undiagnosed

    undiagnosed Senior Member

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    Ya, just be warned that subs like /r/medicine can be very hostile for CFS related posts. If you want to see what I'm talking about, there was this exchange on there not too long ago.
     
  11. Barry53

    Barry53 Senior Member

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    Yes, broadening horizons does also bring risk. But, like life, it is about managing risk, not avoiding it unconditionally.

    Re-reading this, I realise it sounds like I am preaching at you @undiagnosed - I am not. Just agreeing with you, and adding a bit more to it.
     
  12. undiagnosed

    undiagnosed Senior Member

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    Agreed, I wasn't implying that it should dissuade anyone from participating in these types of environments, just be prepared that you often won't get the support like you get on Phoenix Rising. Having rational debate with skeptics can help to address weaknesses in your position and allow for self-reflection. However, sometimes the people on the other end aren't rational and such encounters can be very frustrating.
     
    Last edited: Nov 11, 2016
  13. Barry53

    Barry53 Senior Member

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    During my quite short time with PR, I have become immensely impressed with what a great community it is here.
     
    MEMum, justy, BurnA and 4 others like this.
  14. slysaint

    slysaint Senior Member

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    I didn't want this to turn into a big discussion, as this seems to be how most threads end up.
    My intention in starting this thread was to try and reach out to the wider ME/CFS community, let them know what research is going on (ie Positive information) but also let them be aware of things they can do to try and bring about change to the status quo (eg nothing but CBT/GET as treatment) such as the stop-get petition, but let them make up their own minds.
    Trying to change public perception/understanding on other forums is IMO asking for trouble and possibly counter-productive.
    Here endeth the lesson.........
     
  15. IThinkImTurningJapanese

    IThinkImTurningJapanese Senior Member

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    Thank you for posting that.
    I have suffered with CFS for the majority of my life, and the one thing that has puzzled me the most is the near universal denial about the seriousness of this disease.
    If someone as educated, and intelligent, as that poster can maintain such an ignorant and uninformed position, what chance is there that the general public will understand.
    I'm thinking that until there is a reliable treatment, that we will continue to regularly face this hostility.
    People fear a lack of control.
     
    Last edited by a moderator: Nov 12, 2016
    MEMum and Sidereal like this.
  16. worldbackwards

    worldbackwards A unique snowflake

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    I think they'll be a row. Other fora have their own distinct feels. PR feels like a safe space, with the good things that that implies (it is frowned on to abuse or shame patients and/or tell them that their illness is their fault, they could recover if they tried harder, etc). It also has it's downsides - to a certain degree debate can be curtailed, both by mods if it veers into arbitrarily forbidden territories, or by a groundswell of opinion if someone says something no-one wants to hear eg "I exercised my way to fitness", etc, even if they aren't advocating that position for anyone else.

    I've been having a look at the CFS subreddit recently and the feeling that I got on there is that there are a lot of people with co-morbid mental health conditions on there - it is almost a commonplace for someone's story to start with "after years of battling anxiety, depression, etc". That's not to say they don't have ME - some clearly do, others less so. But there are plenty of opinionated "I did this and you can too" type people who are ready to throw their weight around and don't give a damn who gets upset about it. I see this less round here and thankfully so.

    I don't say that this is absolutely a bad idea, but it is making a point that a lot of people who are clearly ill with a diagnosis of CFS or ME don't see the illness in the same way as the consensus round here, and the result may not be all sweetness and light.

    But that's just one man's opinion.

     
    justy likes this.
  17. slysaint

    slysaint Senior Member

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    I didn't expect it to be; but other groups are equally protective of their safe havens and 'hostile' to 'outsiders' trying to mess them up.
    That said, if 'we' were not to get into discussions but simply say something like

    'Hi fellow ME/CFS sufferers, thought you might find something of interest here........http://forums.phoenixrising.me/index.php?forums/general-me-cfs-news.14/ , take care :)'

    and leave it at that (?)

    then check back a few days later to see what the response (if any) is. (?)
     
    justy likes this.
  18. worldbackwards

    worldbackwards A unique snowflake

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    Maybe so. I think they know we're here, by and large. I vaguely knew about PR years ago and I've never heard of any of the other ones.

    Anyway, always good to start a fight :)
     
    justy likes this.
  19. slysaint

    slysaint Senior Member

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    Not what I've seen, apart from, obviously, Health Rising.
    I'd never heard of Phoenix Rising, only found it when searching for something else.......... and even then didn't immediately realise it was for people with ME/CFS.
    But that's not the point...............it's the information that needs to get out there. What they do with it after that is up to them.
    I hope this was meant as a jokeo_O I never know with you!:cautious:
     
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  20. slysaint

    slysaint Senior Member

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    just bumping this as I've put it all in the first post now.
     
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