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Our Roll of Honour for 2009

Discussion in 'General ME/CFS News' started by Katie, Dec 13, 2009.

  1. gracenote

    gracenote All shall be well . . .

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    we are the world

    Marylib, what about this one? Wouldn't it be lovely to have THIS for US?

    we are the world
  2. Khalyal

    Khalyal Guest

    Oh sorry!

    What about,

    Don't be tardy for the party, Ohhh, Ohhh...

    (Eek. Yes, I DO watch Real Housewives! lol)
  3. Marylib

    Marylib Senior Member

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    for Khayal

    I graciously forgive you for re-activating my PTMSYCPSD. Post traumatic methodist summer youth camp stress disorder.

    Okay I am outta here -- pulling us off topic with my rantings....:p
  4. flybro

    flybro Senior Member

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    pluto
    Love it and all together ...Kumbaya, my lord, Kumbaya...
  5. Kati

    Kati Patient in training

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    old timers

    As a rookie with this disease this year, I would like to honor the old timers that has been with this disease for 10-20-30 years. This is beyond bravery. And beyond belief. A special thoughts to the bed ridden and those who are VERY SICK. Hang on. We are near a solution.

    Hillary Johnson, for she gave us a voice, and without her we would not have had uncovered the lies and deciept. Thank you.

    Dr Peterson, Cheney, Bell, Mikovits. For sticking with us relentlessly.

    Mr and Mrs Whittemore. They have been worried parents and passed to action. Thank you. Andrea, for going public.

    Cort and Dan for hosting wonderful website and helping all PWC to network and share thoughts information and ideas. Thank you.

    And lastly, a special thoughts to those who couldn`t wait.
  6. flybro

    flybro Senior Member

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    pluto
    Living long with ME

    On the WPI facebook there was a woman in her 80's that had been diagnosed with ME since she was 37.

    The reason I mention it, is because she was able to articulate and post responses. I applaud all 80 year olds that can do this, but one that can do this after 40 years with ME is inspiring.

    Her posts also gave you that feel good vibe.
  7. shrewsbury

    shrewsbury member

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    All those involved in the The Canadian Consensus Documents for ME/CFS (and FMS), which include clinical definitions and diagnostic and treatment guidelines for medical practitioners and the Overviews of the Canadian Consensus Documents for ME/CFS and FMS, which are "user-friendly Overviews of the physicians' guidelines", and those who continue to try to get all medical professionals involved with ME/CFS and FMS educated and using the documents.

    This list includes but is not limited to:

    The National ME/FM Action Network for spearheading the drive for the development of clinical definitions and guidelines for ME/CFS in Canada and getting Health Canada to select the Expert Consensus Panels.

    Dr. Bruce Carruthers, principal author of the ME/CFS Consensus Document and Co-Editor of the FMS Consensus Document, and Marjorie van de Sande, Consensus Coordinator of both the ME/CFS and FMS Consensus Documents, have written and published Overviews of the Consensus Documents independent of any organization.
  8. Cort

    Cort Phoenix Rising Founder

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    You probably know who I'm going to nominate:

    • The only organization to use its contacts on Capitol to actually dig into the CDC's records.
    • The only organization that submitted its critique in a timely enough manner to possibly make a difference. (If only the CFSAC/IACFS/ME had woken up in time!).
    • The organization that found the CDC had spent $4 million dollar on a study that enrolled 50 patients.
    • The organization that demonstrated the CDC suffered from low productivity.
    • The organization that uncovered evidence that Dr. Reeves was funneling unspent money to Abt at the end of each yearly budget
    • The only organization that submitted a rigorous and detailed critique of the CDC's research plan.
    • the organization that publicly called for new leadership and the program to be shifted elsewhere.
    • The organization that, after all that, was referred to by Hilary Johnson - as 'the CDC is the CAA and vice versa".

    Of course its the CAA.
  9. Katie

    Katie Guest

    Hey guys, if you're up to it don't worry about rementioning (is that a word, heck I just invented it if not) people already on the list as it would be nice to collect some sentences or particular words that sum up how you feel.

    I'd actually like to add one person:


    Vikki George, a long time ME sufferer and founder of the amazing charity Post Pals that connects terminally ill children and children with serious illnesses to penpals and friends from around the country, maybe even the world. It breaks the isolation and provides laughs and support to children and their families going through horrendous times which our experience would pale in comparison. She's a truely inspirational woman who I am proud to know. Check out her website, if only to look at what she has achieved, she is remarkable and only twenty-four.
  10. Marylib

    Marylib Senior Member

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    In defense of the IACFS/ME

    Just a little word about the IACFS/ME

    These folks are volunteers.

    You all know about lots of their members -- Klimas, et. al. I know one personally, Dr. Vallings, and this woman is a national treasure. I won't go on and on about what she has done, is continuing to do, but in addition to all that -- she continues to volunteer for even more responsibility with the the IACFS/ME. And she always speaks so highly and positively of everyone involved.

    So I have no idea about the history of the IACFS/ME with the CDC and am not challenging this at all. I just like to speak up for them when I can.
  11. Koan

    Koan Be the change.

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    Post Pals is an amazing endeavour! I have posted them on my Facebook feed - people may be most sensitive to others this time of year, maybe someone is looking for a way to give. This is a really lovely opportunity. What a special young woman she must be!

    Thank you for this!
  12. Kati

    Kati Patient in training

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    Wow, this is very impressive work for Vikki, congratulations!
  13. Stuart

    Stuart Senior Member

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    Brilliant thread Katie et al!

    I would say any doctor who truly listens to their patient - any good doctor will tell you that is really how they learn.

    To all the patients who try their best through the exhaustion and brain fog to educate themselves so they can give their doctors "real" information on this DD, or at least help themselves.

    To all the brilliant posters and bloggers, many of them ill patients who really seem to be experts in their area of contribution, if only the CMEs and treatment guides were written by you!
  14. Katie

    Katie Guest

    *bump* Just bumping this up to see if there are anymore takers :D
  15. blackbird

    blackbird caged.

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    Sorry, I don't remember her name, but has the patient from the Dr. Oz show been mentioned?
  16. Katie

    Katie Guest

    Nope. I think her name was Gina but I didn't watch the show. If someone would like to write a few words about her that would be wonderful :)
  17. starryeyes

    starryeyes Senior Member

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    Cort Johnson for writing awesome blogs, running an excellent newsletter and creating this wonderful forum with Aftermath.

    Sometimes when I'm at my worst and feeling totally misunderstood by the world, I receive Cort's newsletter and reading his blogs and the Personal Stories helps me pull through and gain renewed hope and strength. :)

    tee
  18. fresh_eyes

    fresh_eyes happy to be here

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    I seriously think we should make this more official. Give the award a name and pass it out, and write up their acheievements. (CFS Heroes? Something like that? CFS Hero 2009?)

    Katie, I saw your NaNoWriMo avatar a while back - we could give people something like that. I'd be willing to do the graphic design.

    Come to think of it, it could be the first action by CFS/OUT.

    ?
  19. Katie

    Katie Guest


    Do you want to set up an official group? If you do I certainly think you should start a thread an work out it's aims, from the campaign to awards like this and what other things it/you would like to achieve. I like the CFS Heroes, maybe ME/CFS Heroes as there are UK folk listed. A graphic would be great, it could go up on bloggers sites who've been award and direct them to the CFS/OUT site. Oh, you'll need a site ;)

    I think it could be a goer.

    I'd contribute a little more to this post but I've completely lost my sleeping mojo in the last few weeks and my head feels like a bowling ball on my shoulders and my brain is trying to work but it keeps grinding to a halt.


    Also, I just thought of someone I would like to add:

    John Herd. He's one of the most brilliant, articulate, dry humoured, creative, caring and inspirational people I've met during my ME career. Well, online met, I missed my chance when he was on these shores but that turned out to be good for me in the long run. His words effected me and I carry them to this day along with many others who he has inspired with words that somehow he had the talent to express and a humour that kept us all going. I will never look at Catwoman again without seeing myself ;) Oh, and if John ever reads this, rest assured that I can still type with my toes but it's so cold here I'm not taking my socks off for love nor money :D Ok, maybe money, I've already got the love.
  20. fresh_eyes

    fresh_eyes happy to be here

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    It's certainly been in the back of my mind...sounds daunting but wonderful, too. A new organization might have the agility and feistiness that everyone resents the CAA for not having. Let's discuss further. After you rest up!!!

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