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Article: CFSAC PROTEST AGAINST FEDERAL NEGLECT OF ME/CFS ON TAP FOR NOV 8th.

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 2, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Tuha

    Tuha Senior Member

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    eh yes dear friends "Somethings gotta be done". if not for a lot of us will be too late. The last decades we almost didnt move in our fight. I think its time to stop to be nice. with nice advocacy we didnt move at all. we always got only some promisses without keeping them. Its time for strong advocacy. What about to support this demonstration with the campaign "What have you done for ME today?" from the last year leading by Rivka. i think it worked really good the last year but we finished it too early. The authorities were really annoyed and unhappy and they will take some decisions in our favour only if they will be unhappy. We should request from them increasing funding (at least comparable to other illnesses but I would even request more for all the yers of underfunding) in the short therm and if they will not agree I would attack them with those daily emails, faxes, callings. And believe me it makes them really big problems because i was also working on a ministry and I know simmilar situations. Personally I can get at least 20 family members and friends who would join this.
  3. Nielk

    Nielk

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    Hi Cort,

    I wish you would have told me about this last week when I asked you about it. I wasted my time to write up a personal testimony and got a slot to testify by phone. I wouldn't have done that had I known about your plans. Not that I'm questioning your decision to join the protest. I have no idea what it will take to propel this government to do anything.
  4. Sing

    Sing Senior Member

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    My two thoughts are first--how much it costs in public and private insurance and out-of-pocket payments in patients' efforts to get help, as we wander from pillar to post, one specialist to another, through the labyrinth of alternative health care options, as long as there is no medically recognized, fully accepted, appropriate definition of this illness--the best of which is the International Consensus Criteria for Myalgic Encephalomyelitis which came out in September, 2011--no fully accepted biomarkers and recognized test, and no fully accepted, recognized treatment. We need the correct definition, a valid test and effective forms of treatment, not only to benefit the lives of patients, but to save all the wasted money and effort that has been going down the drain as we patients desperately try to help ourselves. So, saving money is the first idea I have, which might gain traction.

    The second thought is for our government to back trials of Ritumixab which showed more success as a treatment than anything else has yet done, according to Dr. David Bell.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Excellent!! Just what we need!! A huge thank you to everyone who will be participating! You are doing something very important.
  6. Ember

    Ember Senior Member

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    Great news that we can all join in! Thank you!

    You write: Make your own signs, shirts and Banners then post pictures on your own Facebook Page and Here. Is there perhaps a hyperlink missing?
  7. Enid

    Enid Senior Member

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    Good luck to you all Cort - what a battle it (still) is.
  8. Jill McLaughlin

    Jill McLaughlin *****

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    There is no funding or research for ME/CFS, so making up signs and tee shirts is a waste of time. We need more than putting on an advocacy show. ME/CFS is not an actual diagnosis as there is no ICD code. There is no such thing, just another made up term that can be used in different ways. CFSers may not hijack "our" illness to give them a little perceived cred. For anyone who has ME, CFS research will do no good, any more than it has for the past 25 years. Stop this Coalition 4 ME/CFS proposal to change ICD codes to prevent this lack of progress from from continuing.
  9. Cort

    Cort Phoenix Rising Founder

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    These weren't my plans. Sorry about that but I was behind the loop as well. I had heard something was probably going on but I didn't know what. I only got clued into this two days ago and wrote the blog yesterday.

    I don't know what its going to take either but we might was well find out! Inaction will get us what we have - which isn't much - abysmal funding and basically very little attention from the medical community.
  10. Cort

    Cort Phoenix Rising Founder

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    The link if for Bobs Facebook Page : http://www.facebook.com/event.php?eid=176694089084739
  11. WillowTree

    WillowTree ME/CFS is NOT fatigue!

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    Thanks for the email addresses. I will be participating. Does anyone have their fax numbers as well?
  12. Ember

    Ember Senior Member

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  13. Cort

    Cort Phoenix Rising Founder

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    Good idea Ember, I added our page to the post.
  14. BobM

    BobM

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    CFSAC Paddywack

    We will do our best to make this work, we need all your support to energize us. Post on Phoenix Rising, Facebook and on other sites willing to take part. Emails to the contacts listed above, phone calls and faxes as well. We will post video of the protest ASAP, we hope it will be within minutes of the action.

    People ask if this will break their backs, I don't know. What I do know is that doing nothing will get us nothing. I will do what ever I can to get more research and funding from NIH. The others are working very hard to make this work. Your support is very important to us all.

    Thank you for any support you give.
  15. SpecialK82

    SpecialK82 Senior Member

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    Thanks Bob, Cort, and others for organizing - this is great! I'll be working on my email this weekend and telling my family to do the same. We need ACTION!
  16. RivkaRivka

    RivkaRivka Senior Member

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    People, the time to act is now! Let your voices be heard. I can not attend (too sick) but I support all of you who will be there, live and in person. Here is a link to the last demonstration we did at HHS in Washington DC. http://www.youtube.com/watch?v=_elj8mcd9Ak
  17. Roy S

    Roy S former DC ME/CFS lobbyist

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    See, RivkaRivka is alivealive which at least proves that demonstrating is not universally fatal. And she wrote a play about us and got it produced. I think it should be performed on the Capitol grounds. For more attention from some senators and representatives maybe in the nude.

    But seriously ladies and germs, there are demonstrations all the time in Washington and we can use all we can get.

    Way back when in the previous millennium I moved to Capitol Hill for two years + to lobby for us and didn't lose my life. Did I lose my sanity? Well, that's a value judgment, isn't it?
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

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    What are we supposed to include in the emails? I am afraid my brain did not find that. Tina
  19. Cort

    Cort Phoenix Rising Founder

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    Ask for more federal funding for CFS. Note that the despite the fact that CFS is estimated to cost the US about 20 billion dollars a year in economic losses and its believed to effect 1 million people in the US, it receives about 5 million dollars a year in funding, making it one of the poorest funded diseases at the NIH. It ranks in the bottom 95% of diseases and conditions the NIH funds.
  20. SpecialK82

    SpecialK82 Senior Member

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    Are we sure that we should copy Wanda Jones on the emails if she is not participating anymore??

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