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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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We are a powerful community, not a bunch of sick whiners

Discussion in 'General ME/CFS News' started by _Kim_, Dec 14, 2009.

  1. _Kim_

    _Kim_ Guest

    Wow, wow, and more wows.

    Taking stock in this forums accomplishments in the recent past, I am blown away by the talent, the creativity, the passion, and powerful presence that the members of this forum have brought to the table. I'm only going from memory, so help me out in acknowledging the accomplishments of the Phoenix Rising Forum community.

    dreambirdie - single-handedly initiated a campaign to get Dr. Oz to do a show on XMRV. Not a small task indeed and not without some health-related consequences. She's lying on the big sofa in the Burnout Bench if anyone has been wondering where she is.

    hvs - started Time for the Big Talk. How's the CAA doing? back at the end of October. This long discussion with 39 pages and 12,944 page views has served as a voice for the community's concerns about its leadership.

    mvwu - took the CAA discussion to a level where change could happen and started the Suggestions for change at the CAA? Post here.

    garcia - transcribed Dr. Peterson's Testimony at the CFSAC

    A whole gang (me, fds66, blackbird, ComeBackShane, cfs since 1998 and Koan) have spent the day volunteering for sections and transcribing Nancy Klimas' lecture - all because gracenote asked.

    sarahg - translated (with a little help from her friends) a Russian XMRV article into English.

    levi - drafted a First Round of Legislation for a joint resolution

    fresh_eyes asked us to help "re-brand" CFS - then took the suggestions and is creating the most kick-ass media campaign.

    Good thing Koan created a Burnout Bench just in time when everyone is doing so much around here.

    Great job everyone! And apologies to those I've forgotten in the moment - there's so much good work going on. You are the best!!
  2. Marylib

    Marylib Senior Member

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    Except for me

    I am a sick whiner. :p

    Sorry Kim I could not resist.


    But SERIOUSLY, I agree with you wholeheartedly -- what a group this has become.
  3. _Kim_

    _Kim_ Guest

    Marylib, I originally had "not just a bunch of sick whiners in the title. If you are a whiner, you don't show it here - but I don't know what it's like to live with you :D
  4. Koan

    Koan Be the change.

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    And, Kim, our secret weapon, not only has big plans to take medical schools by storm, she also knows just when and how to lift us up!

    Feels sooooo good!
  5. Koan

    Koan Be the change.

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    Marylib,

    If you want to see some serious whining, just check out the Klimas thread where I took emoti-whining to a whole new level when I discovered that I had transcribed, nearly in tears, something someone else already had dibs on and was transcribing!!!

    Marylib, Marylib... what would we do without Marylib who has been a voice of reason in practically every serious and not so serious discussion that has taken place here?

    Don't wanna know.
  6. _Kim_

    _Kim_ Guest

    Koan

    With metta to you.
  7. Marylib

    Marylib Senior Member

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    Awwww shucks

    You guys are sweet.....

    and whiny


    See? I can't stop myself... nighty night
  8. fresh_eyes

    fresh_eyes happy to be here

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    Katie's "Roll of Honour" thread is awesome too.
  9. starryeyes

    starryeyes Senior Member

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    You all rock! I'm so glad you're all here making a difference for CFS and for our community. :D
  10. Katie

    Katie Guest

    Would you like me to add those names to the 2009 Roll of Honour thread Kim? I think they all certainly deserve to have their named mentioned :)
  11. dipic

    dipic Senior Member

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    I've been to a couple of the other "big" ME/CFS/FM forums and 99% of the people on them are just so seemingly apathetic to the issues that affect us so deeply. That said, it's such a nice change to be apart of a community that is full of intelligent and courageous people actually willing to pay attention to these issues, let alone try to fix them.

    It's inspiring and brings me great hope. Thank you all for your hard work and determination.
  12. Dreambirdie

    Dreambirdie work in progress

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    But Jeeeeeez, Kim, I'm so ti-i-i-i-i-red. :p:p:p:p:p

    Do I HAVE TO pretend like I'm some kind of powerful whatever you wanna think I am? :eek: :p:p:p:rolleyes::);)

    Isn't that counter-productive to my fatigue syndrome?
  13. Frank

    Frank Senior Member

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    The big difference with other forums i visited, is the constructive, positive vibe over here. I hope we can grow to one very big united group. And my hope is that also people who don't speak english can get to this group, so we can become even bigger.

    for example
    --------------Main group--------------
    Subgr.:--English---French----Spanish--..etc.

    So important messages, action alerts, news, asking for test results etc. that the main group provides, will get to all those subgroups.

    The Spanish subgroup could have moderators that speak English and spanish and so on..

    I think it must be possible to provide such platform on the internet. It already exists in online games, where there are millions of members to one game. Our "game" is CFS, ME, FM, MCS,..
  14. Martlet

    Martlet Senior Member

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    You've all left me with nothing much to add. What I've seen here is a bunch of fighters. Intelligent, strong, pro-active fighters and I am so proud to be a member of this forum.
  15. fresh_eyes

    fresh_eyes happy to be here

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    Love what you're saying here, s50. I wonder if you might like to try to get that started, if you're up for it? Maybe start with Spanish - I know Rita and Sergio from Spain have been on here, and seem eager for info, and have had info for us as well.

    Thanks for being on here. Vive la revolucion. (Did I spell that totally wrong??:p)
  16. Martlet

    Martlet Senior Member

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    I can speak German conversationally but don't know how I would do trying to communicate such complex issues. There is a German group - I just hunted them down but need to read more before I know if they are any use and it is way past my bedtime.

    Chronisches Erschpfungssyndrom

    http://www.fatigatio.de/
  17. brenda

    brenda Senior Member

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  18. DavidJ.

    DavidJ.

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    i know fatigatio and believe me, you can find way more infos here. especially when it comes to treatments. we have mike dessin postin here about neural therapy , others posting about alternative medicine like ozone therapy and the latest research and so on. its a really good board.
  19. Frank

    Frank Senior Member

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    Yes DavidJ ofcourse this in one of the best boards, but my goal would be to get more people to come to this wonderful place and in a way they can understand it. I'm sure there are for example german visiters over here who speak english fluidly and are willing to moderate a german subboard.

    The goal is to get a big community with a strong voice.

    I btw speak english, dutch, german and french so i could be busy :-d


  20. Koan

    Koan Be the change.

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    That is such an exciting idea -- a truly international community!

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