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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. V

    NIH phonecall and Q&A, Tues 8 March

    @duncan The Lyme sample will be those who have recovered (asymptomatic, anyway) rather than persons with chronic Lyme.
  2. V

    Have you tried Oxygen Therapy and did it help you?

    Hers is the best response to daily high-flow that I've heard of "through the grapevine"/informally. I have always thought she'd have improved faster if she'd done regular HBOT, too. I have also wondered if the high-flow O2 has somehow "been enough" for her because of her relative youth (she was...
  3. V

    Have you tried Oxygen Therapy and did it help you?

    My daughter, who had been seriously ill for 15 years, started using high-flow oxygen (10 L/min) through a rebreather mask for an hour/day in 2012. Improvement was slow, but her symptoms slowly resolved and she's now living a 95% normal life. HBOT, when it was available, also gave her a bump. But...
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    NIH intramural research program update

    Kati, it's not impossible to go outside - they already have a few consultants identified as "associate investigators," in addition to Unger (who they don't have to fund) and Lipkin (who may be funded through other grants he has with NIH or other sources). But I'm guessing there's a very low...
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    NIH intramural research program update

    Walitt isn't the only problematic investigator involved. Here's a recent publication in which Carine Maurer and Mark Hallett appear to make fun of FMD patients: The “Whack-a-Mole” Sign in Functional Movement Disorders http://onlinelibrary.wiley.com/doi/10.1002/mdc3.12177/abstract
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    NIH intramural research program update

    Walitt's bio and links to publications here: https://www.ninr.nih.gov/researchandfunding/dir/bwalitt#.VsOG7ceFfzI
  7. V

    Dr. Collins wants to mend fences - my call with him

    Fantastic news!!! Thank you!
  8. V

    Mold or Oxygen? Feel better in Hawaii

    Lisa, I can't help but think the environment at the northern tip of the Big Island contributed. The trade winds are constant, blowing in over 2600 miles of open ocean, and the air feels lively and fresh up there. At the same time, this month was the rainy season and we had a lot of rain...
  9. V

    Switzer now finds (some) XMRV in Prostate Cancer

    I also found this paper really interesting! I had just finished the Singh paper when I read it, so I was wearing "contamination" eyeglasses. I found it interesting that they developed a new contamination test for murine MCOX2 (whatever that is). I didn't see that they tested the Taqman...
  10. V

    Another Trivializing Article - RGJ

    I, too, would like to know if there's any research evidence that an early diagnosis (dx) and extended rest make any difference! How "early" is early? It seems like 6 months of fatigue and other rotten symptoms isn't particularly "early," where the CDC definition requires that the "fatigue"...
  11. V

    A New Term! - "Bodily Distress Syndrome"

    This really IS frightening. Can we sue them for slander?
  12. V

    Trine & Tribune All Over Contamination Theories

    Follow the money. Who owns them?
  13. V

    Retrovirology Publishes Five Papers on XMRV and Contamination

    This is great news, Ecoclimber. Glad that the Contaminants stepped on the prostate cancer research, as well as the CFS studies, this time. If we weren't so desperate and sick, watching the science and the associated drama unfold is better than House or any soap opera. The suspense is...
  14. V

    Donate to WPI: WPI is under attack, let show them some love!

    She just did it last week. But I suspect they have a form letter to reply to one-off requests. They accept grant proposals in several areas, including "Neglected diseases." http://www.gatesfoundation.org/grantseeker/Pages/funding-neglected-diseases.aspx I don't see a category for...
  15. V

    Donate to WPI: WPI is under attack, let show them some love!

    Yes, bless her. A concerted effort to request funding from them seems worthwhile to me. Does anyone know if WPI has contacted them?
  16. V

    Donate to WPI: WPI is under attack, let show them some love!

    Gates Foundation LOL - my Mom wrote them a letter...
  17. V

    Why did Alter not detect xmrv

    free, I'll try an answer, but am likely to be off, so I hope someone will correct whatever I say. It turns out there are a ton of "pieces and parts" to a retrovirus. It appears that what you find depends on which pieces/parts you're looking at. (And other factors that have been endlessly...
  18. V

    Blood Products Advisory Committee Meeting Announcement (BPAC) December 14-15, 2010

    I'm sorry I couldn't be clearer in my posts. I wish FDA would post the actual slides, which are presented as handy tables and much easier to understand than my notes. A couple of things: In Phase 2b, there were no Day 4 samples tested by any lab. They didn't include a Day 4 in Phase 2b -...
  19. V

    Is life worth living with this?

    roma, I'm sure glad to see you posting! We broil everything (chicken, fish, and a little pork now and then). It's quick and most of the fat drains off. If you are going to put meat into a stew, it's good to brown it in a frypan first, which will get some of the fat out of it before it goes...
  20. V

    Blood Products Advisory Committee Meeting Announcement (BPAC) December 14-15, 2010

    CSB, thanks so much for the NCI info!! You "noted" that Coffin consults to NCI/DRP, right? (Save that man part, man!) leela, in the intro slide to the BWG results, the presenter basically said they "really need" a reliable/valid blood test because that's most cost-effective for dealing with...
  21. V

    Blood Products Advisory Committee Meeting Announcement (BPAC) December 14-15, 2010

    One of the questions I have and hope we get an answer to tomorrow is whether NCI/DRP is different from NCI/Ruscetti (on a later slide re: serology results). So confusing STILL!
  22. V

    Blood Products Advisory Committee Meeting Announcement (BPAC) December 14-15, 2010

    Oh, another thing I wanted to mention was that, by the time they got to the discussion of the other 3 questions on the agenda, which didn't require a vote, the meeting had already gone over by about 1.5 hours. So, those questions didn't get much attention/discussion, as everyone was more than...
  23. V

    CFS Patient Advocate take on FDA Blood Study Advisory meeting

    You know, my notes may not have made it clear that Stoye's presentation included a discussion of the negative studies. I have the hand-out from his presentation, too, but it would really make me gag (not env or pol) to have to post his slides. Is anyone dying to see them today, rather than...
  24. V

    Blood Products Advisory Committee Meeting Announcement (BPAC) December 14-15, 2010

    Marco, They did have an agenda they followed that included discussion times. It just seemed to me that the BPAC members, other than Coffin and occasionally Klimas, didn't have much to say. I think Dr. Nelson, who asked the most questions, is also new, which may be why he asked so many and the...
  25. V

    Blood Products Advisory Committee Meeting Announcement (BPAC) December 14-15, 2010

    OK, here we go. I posted the detailed info from the Phase II slides here: http://www.mecfsforums.com/index.php/topic,4124.0.html Please feel free to copy and paste them here. If I had my own website, I would have just posted them there for anyone to view - sorry!
  26. V

    Blood Products Advisory Committee Meeting Announcement (BPAC) December 14-15, 2010

    I have the hand-outs from the meeting and meant to post them so everyone has more details of which labs found what using which methods in which Phase IIa and IIb, but I did crash yesterday. Plus there are 6 slides on a page, so they're hard for my old eyes to read -- even with a magnifying...
  27. V

    Blood Products Advisory Committee Meeting Announcement (BPAC) December 14-15, 2010

    Pretty darned good translations of my short-hand and garbled notes, Cort. I went back over them and tried to fix some of the typos and clarify some of the points. A few things: Hand-outs of the slides from a few of the presentations were available before the meeting started, which is why...
  28. V

    Article: Not One Alone: CFIDS Association Board of Directors Take a Stand For the Power Of 'We'

    More! This is an excellent debate. Parvo, your arguments are devastating. Cort, your replies aren't. Step back and think further. You can do it. We've seen you do it. Breathe and think more, then reply. :)
  29. V

    XMRV Buzz - Take a Deep Breath/the Big XMRV Meeting, Singh On XMRV, Sample prep?

    Perfect, Rivka.
  30. V

    XMRV Buzz - Take a Deep Breath/the Big XMRV Meeting, Singh On XMRV, Sample prep?

    Bravo, Otis. It's TIME for new info.