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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. cfidsurfer

    Dr Sarah Myhill interview

    I'm glad I watched it but I was not magorly impressed. It didn't seem like she had much concrete evedence about ME. It sounded a lot more about chronic fatigue (cf) and various other fatigue related conditions. Its possible to try some of her suggestions and if they help, hey thats good.
  2. cfidsurfer

    Spring 2012 CFSAC Meeting Dates

    OK, forget it. CFSAC prob isn't the best place to protest anyway. any of you see 'And the Band Played On?
  3. cfidsurfer

    Spring 2012 CFSAC Meeting Dates

    Tina, I think Robert is on to something.
  4. cfidsurfer

    Spring 2012 CFSAC Meeting Dates

    I know the CFSAC isn't a protest per se, However it would be cool if we all wore orange prison shirts or the black and white prison stripes, because that's what ME is, a prison. That would make statement! Just look at 'Change for ME Australia' brisbane rally and the sea of red shirts. see here...
  5. cfidsurfer

    Spring 2012 CFSAC Meeting Dates

    What hotel are people staying at?
  6. cfidsurfer

    Voices from the Shadows

    Thanks for posting. I just bout a USA copy!
  7. cfidsurfer

    Nov. 2011 CFSAC Videos Posted

    Andrew, Here is the first of 3 on the 9th(day 2). http://www.youtube.com/watch?v=8CPZrFM-sA0
  8. cfidsurfer

    Nov. 2011 CFSAC Videos Posted

    day 2 is up now. please rate and comment on these to let them know we are watching!
  9. cfidsurfer

    (Anon poll) How many ME/CFS+related groups have you voted for in ChaseCommunityGiving

    Voting ends at noon EST. BTW, for you last minute voters; I think voting might end on the 22nd at noon EST.
  10. cfidsurfer

    Chase Community Giving Contest for Small Non-profits-Nov 8 to 22-$3M in Prize Money

    I think the mecfs groups will be loosing ground in the next couple of days so it is important now more than ever to try to get votes. Over all, the turnout for mecfs votes has been less than impressive. Considering the amount of money at stake, I'm really not sure why more people are not...
  11. cfidsurfer

    Since your ME/CFS onset, have you caught the Cold & or Flu more or less frequently?

    Pre ME: Sick 2x a year like clockwork. Post ME: Haven't cought a cold or flu in 11yrs Ever since I got mono-(which turned into ME) in 2001 I have never caught a cold or flu or strep ect...! I'm not complaining. I have told my GP, he said it is a "good thing" and blew me off. I have to agree...
  12. cfidsurfer

    NEWS: A Novel Diagnostic Approach For CFS- Hemispherx Biopharma & Chronix Biomedical

    http://www.reuters.com/finance/stocks/HEB/key-developments/article/2405167 Hemispherx Biopharma, Inc. And Chronix Biomedical Present Data on a Novel Diagnostic Approach For CFS Monday, 26 Sep 2011 08:02am EDT Hemispherx Biopharma, Inc. announced that it has presented new...
  13. cfidsurfer

    $$$ for WPI vote daily now in Vivint Round 2!

    Hi Dolphin, You are correct. I looked at the contest and mixed up IGB with BPF. My mistake. As far as alternative voting, if i had to vote for a group other than WPI, I would vot for IACFSME.
  14. cfidsurfer

    $$$ for WPI vote daily now in Vivint Round 2!

    IGBP just had a huge leap today. Who knows what they are capable of? It's not over until it's over. I will continue to vote for WPI.
  15. cfidsurfer

    $$$ for WPI vote daily now in Vivint Round 2!

    She is performing at the WPI's I HOPE YOU DANCE fundraising event on the 15Th.
  16. cfidsurfer

    $$$ for WPI vote daily now in Vivint Round 2!

    The question is, are PWC willing to risk it all just for a small gain?
  17. cfidsurfer

    $$$ for WPI vote daily now in Vivint Round 2!

    I am very worried about this contest. 'It Gets Better project' is a total wildcard, and we have NO idea of what they are capable of. They could come out of nowhere and get many votes on the last day to win it. So please keep voting for WPI.
  18. cfidsurfer

    $$$ for WPI vote daily now in Vivint Round 2!

    Ohhhh Noooooo!!!!!!!!!!! :Sign eek:I hope this isn't going to be a repeat of the past contests we seem to lose. Everybody needs to vot for WPI in order to even have a CHANCE at winning. Some of these contestants are sleeping giants who haven't even started ramping up their votes yet. This is...
  19. cfidsurfer

    $$$ for WPI vote daily now in Vivint Round 2!

    Lets face it. Statistically The National ME/FM Action Network has no chance of winning (unless they get an astronomical amount of votes from NEW vote sources which is highly unlikely to say the least!) Therfore, every vote taken away from WPI is a wasted and lost vote. This contest is far...
  20. cfidsurfer

    Applied kinesiology?

    I agree these types of treatments can be entertaining and if you're looking for "fun and rewarding" by all means, continue. Also very true, these types of treatments can offer a placebo effect which can be helpful and I had not thought about in my previous post.
  21. cfidsurfer

    Applied kinesiology?

    This is a scam. Use common sense and reason and actually think about what this Dr. is telling you. I'm not saying this to be rude or to dash your hopes. I hope the best for you and I think treatments for PWC are just around the corner. Sorry if others disagree.
  22. cfidsurfer

    Anyone up for hosting a CFS/ME podcast?

    I listen to a bunch of weekly and by weekly podcasts about many varying subjects. Some are formal but most are very laid back. I'm amazed how many weekly podcasts are available to listen to on so many random topics. Maybe I am uninformed but I am unaware of any podcasts specifically for the...
  23. cfidsurfer

    Another Contest Vivant - to WIN Reseach Money!!

    WPI slips in ranking WPI is now in second place.
  24. cfidsurfer

    CFSAC Agenda is up!

    Same problem too. can anyone help? "Permission Denied. Please contact your System Administrator to obtain additional permissions"
  25. cfidsurfer

    Another Trivializing Article - RGJ

    This article is pathetic and you can thank the CDC for puting out misinformation that feuls these types of ignorant articles. Thank the CDC for the Faduka definition (aka Reeves disease) also.
  26. cfidsurfer

    Time to Vote for MCWPA Public Service Announcements

    I liked #1 80% of PWC are undiagnosed. This PSA might make some realise that they have cfs, then get diagnosed. Resulting in strength in #'s. Part of the reason It took me 7 years to get diagnosed is because I thought you had to be bedbound and in extreme pain all the time. I thought no way...
  27. cfidsurfer

    Tina Tidmore on the RADIO! Spreading Critical Information on ME/CFS!

    Great interview. Her facts were spot on across the board. Her communication was clear and consice. She is a great asset to the CFS community. Thank you for all the work Tina!
  28. cfidsurfer

    Demonstration at the CDC

    Great ideas, BTW, I would like to see a demonstration annually. Maybe cirtain local groups could rent buses to get to demostration locations which would be easier than everyone driving cars, therfore more people would participate.
  29. cfidsurfer

    Know Any pwME who went to Brown University?

    Roger Williams University(20 min south of Brown). Class of 2000. Got sick w mono? sr yr, never recovered.
  30. cfidsurfer

    Demonstration at the CDC

    A demonstration is a great idea. Count me and my entire family in.