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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. jimbob

    Big Day Eve

    http://meluluslegacy.com/2014/03/18/big-day-eve/
  2. jimbob

    Severe ME/CFS could be called Pervasive refusal syndrome

    "Fatal Mothering", Are they trying to push Munchausen by Proxy? Things are getting totally insane! I wish I could travel back to the eighty's when ME/CFS was treated with at least some respect.
  3. jimbob

    Rheumatology and ME/CFS?

    I see a Rheumy, but she knows nothing about ME/CFS, only Fibro. Internal medicine Dr. the best way to go, I just can't find one anywhere near me who sees ME/CFS and that includes MUSC in Charelston, S.C.! In the eighties all the diagnosing and treatment were being done by Infectious desease...
  4. jimbob

    Update on support for Dr. Mikovits

    www.facebook.com/pages/Support-Dr-Judy-Mikovits/101589063330685?fref=ts
  5. jimbob

    Advocacy Made Easy And Cheap! Just need a little help and we can make an impact.

    I don't think making 10-12 cys and putting them in a box and mailing it requires a lot of energy. The info and the box (hopefully thousands of them, once the word is spread) is enough of a major impact. We just need to keep this simple and it will work.
  6. jimbob

    Advocacy Made Easy And Cheap! Just need a little help and we can make an impact.

    Some of these could be very useful for inclusion in the education packet. Just need to vote/agree on what goes in and the destination and mailing date and we're good to go.
  7. jimbob

    Advocacy Made Easy And Cheap! Just need a little help and we can make an impact.

    We can add a sure-fire way of guaranteeing impact. We put a "return receipt requested" on every box, I'm not sure what you call this in other countries, but I'm sure there is something similar. It doesn't cost that much and they will have to acknowledge receiving every package. I need just a...
  8. jimbob

    Advocacy Made Easy And Cheap! Just need a little help and we can make an impact.

    I think to keep it cheap and easy, we stick with the packet of info. Print out 10-12 pages, put them in a box, put address on box and mail on the designated date, can't get any easier. We can send them anywhere, I just thought cbs Health Dept would be best.
  9. jimbob

    Advocacy Made Easy And Cheap! Just need a little help and we can make an impact.

    Yes Ember, that's one page for sure. Alex, maybe the MCWPA can help out those who can't make copies. I'll mail you a packet if need be. Once it's finalized, it will represented as much as humanly possible.
  10. jimbob

    Advocacy Made Easy And Cheap! Just need a little help and we can make an impact.

    I think CBS is perfect because they were in on the spinal fluid discovery and if they make mention of this, it might just be on 60 Minutes. I think most people have printers, so it won't be a problem (10-12 pages). People that don't might have someone they know that could make the cys for them...
  11. jimbob

    Advocacy Made Easy And Cheap! Just need a little help and we can make an impact.

    The Boxes Rebellion Have an idea for an impact program that is very cheap to perform. It seems letters, faxes, and e-mails are'nt getting the job done. A package of information is put together and posted so everyone could make their own copies. This package would then be put in a good...
  12. jimbob

    The Boxes Rebellion

    Alright DB, thanks for listening. Hopefully, I'll find a way to get it off the ground.
  13. jimbob

    The Boxes Rebellion

    Dreambirdie, who's our best gossiper? We need to spread the word. imagine, boxes from the U.S., U.K., Australia, japan, china, Belgium etc., this would be awesome!
  14. jimbob

    The Boxes Rebellion

    I can't believe more people are'nt reading this and weighing in?!!!
  15. jimbob

    The Boxes Rebellion

    I know what you mean d.b., but it's really so easy. We just get one of our brightest to post 10 or 12 pages explaining the past couple of years and everyone can cy it. Then all we need to do is choose a destination and a date and mail it in a box. Only cost is the postage (anyone can find a box...
  16. jimbob

    The Boxes Rebellion

    Have an idea for an impact program that is very cheap to perform. It seems letters, faxes, and e-mails are'nt getting the job done. A package of information is put together and posted so everyone could make their own copies. This package would then be put in a good size box and sent by USPS...
  17. jimbob

    13th week of Valcyte

    Glad to hear someone beat the evil beast, enjoy every day of it.
  18. jimbob

    What they new back then????

    1987 videos http://www.youtube.com/watch?v=CqpvRC_YurY http://www.youtube.com/watch?v=4xdtVan0xko http://www.youtube.com/watch?v=t32EcWN6Zws http://www.youtube.com/watch?v=24IKrgHq0nI http://www.youtube.com/watch?v=ZRY5_x8vhKo Here is the rest, enjoy. That's me with my wife and 2...
  19. jimbob

    What they new back then????

    You pinched them from me, but that's O.K., I was going to post them here anyway. Pretty much all of them are from 1987. After being diagnosed by DR. Gantz, I would pop in a VCR tape when I new a CFS story was to be aired. I'm actually in the Nightline one and the 3 part series by Channel 7 out...
  20. jimbob

    Unpublished XMRV studies and Future XMRV studies

    I don't understand why, with all these positive studies, that the public doesn't have any idea what's going on. There is a breakdown somewhere in communication. I don't believe all our associations are pulling their weight in this regard.
  21. jimbob

    Question to all

    Hello fellow South Carolinian, I'm from Myrtle Beach. Not having any luck in my part of the state either! Even MUSC in Charleston is clueless. Hang in there and keep up with the forums, it does help ease the pain.
  22. jimbob

    The BIG CHASE: funding US ME/CFS non-profits

    Just posted on Craigslist in Charlotte, N.C. and Columbia, S.C. for volunteers to vote for WPI in the Chase Giving contest. Doesn't take long and it reaches a lot of people.
  23. jimbob

    Count ME In! $$$'s for the WPI - April's here

    Just donated to the WPI using Paypal, seems to be the safest and easiest way for me. I posted on facebook to remind them and WPI did as well. Looks like we're the only ones who are going to make a difference, what a shame.
  24. jimbob

    Demonstration at the CDC

    May demonstration at the CDC postponed until after April and May ME/CFS upcoming events. Due to lack of numbers, there wasn't enough time for a plan B, where a smaller group could put on a different type of demo. Thanks to all who volunteered and helped out. Jim
  25. jimbob

    Demonstration at the CDC

    The demonstration at the CDC is posted at ACTUP.ORG on the 2nd page of the front page news and contains more details. They have been very receptive and helpful with our plight. I believe they may be our last hope in getting enough people to make an impact. WE NEED MORE PEOPLE or at least ideas...
  26. jimbob

    tsunami warning

    Get to high ground Andrew, we need you buddy!
  27. jimbob

    Demonstration at the CDC

    Still working on that one, hoping MCwpa will come up with some ideas.
  28. jimbob

    Demonstration at the CDC

    Lost it a little bit there, but seriously, they need to start carrying their weight!
  29. jimbob

    Demonstration at the CDC

    Then we give them an ultimatum, help support us or we start class action suit due to negligence! I'm finally and totally fed up with all the bull####!
  30. jimbob

    Demonstration at the CDC

    With any luck, this might be the only one!