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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. W

    Lancet retracts 1998 paper linking vaccine and autism

    This is another disease continuum that bothers me. There are still no accepted biomarkers for autism outside of subjective (if more demonstrable) behavior observations. Outside of UC Davis saying to start looking at environmental factors (in California anyway), there's been little progress...
  2. W

    Reeves 2010 (biomedical research!?) CFS associated with Metabolic Syndrome

    This paper might have been in Elsevier's pipeline before Reeves got "booted." In any event, my first psychiatrist was way ahead of him. When I kept losing weight on his anti-depressants, he squawked "metabolic problem." I have borderline hypertension, and not only low HDL, but low total...
  3. W

    Retrovirus in salivary glands from patients with Sjgren's syndrome

    Re: Sed Rate Osler's Web (pp.214-215) references an Aussie paper, Mukherjee, et.al., Abnormal Red Blood-Cell Morphology in ME, Lancet, Aug 8 1987. The paper noted the RBCs had a "globular" or "sickled" appearance that fluctuated according to symptoms. In a 1988 conference, Komaroff and...
  4. W

    Support the Whittemore Peterson Institute

    Pocket Change Campaign This was put together with help from Dan Morcoli and folks on the ME-CFSCommunity board. Our U.S. rep Ms. Bauer was at both of the last CFSACs. I'd say it's legit. I'd say it's awesome that you've got these heavy hitters coming together on their own - Kerr, Klimas...
  5. W

    Nancy Klimas Opening ME/CFS Clinic Next Month

    Suggestions It's great to air out our concerns here. The site has a contact e-mail; better yet to use it and write the clinic. Some here have done that. I spent considerable time doing so yesterday, and appreciated people posting here. Beyond the name, a concern of mine is what the bill...
  6. W

    Dr Vincent Lombardi

    Who's pushing who? This is starting to get crazy. Wasn't a commercial test supposed to be 6 months away? It would take time just to verify that Quest and Labcorp are doing it properly - time well spent. So, now this shortcut to the research lab, which can't provide the "kits" for 1-1/2...
  7. W

    Dr. Hyde on XMRV

    HHV-6 and Yet Another Definition to Deal With According to the HHV-6 Foundation, 6B is the one present in nearly everyone by age 2, and causes roseola, though it can also do other things. -6A, according to them, is more likely to be found in "CFS," AIDS, and MS and is acquired later in life...
  8. W

    Dr. Hyde on XMRV

    I'm a little surprised (Forgive me if you've read this elsewhere - I don't know where my post went.) I've long respected Byron as one of our hard-line advocates in medicine, but I haven't read his book or seen him. If Dannybex's appraisal of him has merit, that's funky, because I sort of...
  9. W

    Dr Vincent Lombardi

    Told you So Someone posted that NCF disagrees that XMRV is the deal, and without naming names (a near-first for them), called out the involvement of Lombardi with RedLabs as a conflict of interest. Stepping back, the post here about the nun is true. Ours is a field stocked with conflicts of...
  10. W

    Time for the Big Talk. How's the CAA doing?

    "Gray Hats" 4 Now, you can take this for a grain of salt or as you wish. The Scotts of Common Cause, supposed Canadian ex-pats with the "truth" as NCF once put it, are curious, and is what you can "learn" by following their trail. Is the Brucellosis Triangle, etc, verifiable? To a point -...
  11. W

    Time for the Big Talk. How's the CAA doing?

    Grays Hats on All - 3 As for NCF - so much for Rich vK's statement that they among others can't remain silent in all this XMRV business, remarkably, NCF has done almost exactly that. For all their hooting about finding a virus, when someone appears to finally have (we'll see) - absolute...
  12. W

    Time for the Big Talk. How's the CAA doing?

    Grays Hats on All - 2 Cort is also diligent to at point out the shortcomings of the CFSAC. Whether the CAA is pushing them, I don't know, but in May (when I first started to really tune in, literally), only Jason and Oleske really came close to challenging CDC. In the end, they just couldn't...
  13. W

    Time for the Big Talk. How's the CAA doing?

    Grays Hats on All - 1 Besides his journalism overall, I give Cort credit for one thing, even if I don't always agree 100% - trying to remain level headed, which isn't easy in our thing and never was. Perhaps I fail here as well. I respect Hillary's work, and most of her passion, when that...
  14. W

    CCFS Advisory Committee Meeting - Will be Webcast Live

    Minutes I don't know how long it takes, but DHHS does post minutes for the entire 2-day meeting.
  15. W

    Got a juicer

    The Juiceman I had one of these a couple of years ago, but it's chomping power was kind of weak. Glad someone came up with an easier way to keep these clean these. I liked carrots, apples, and beets, but you have to go light on the carrots for glycemic content and Vitamin A (turning orange!)...
  16. W

    Chronic Fatigue Syndrome mentioned on FOX News program

    Interesting Segment Glenn Beck's a little off the handle, to me, but he's asking some important questions. I wouldn't side with the Endo' yet and start blaming flu vaccines for "CFS," but it's really something that should be considered. A connection was being looked at as of the Cold Harbor...
  17. W

    Congressional Oversight Hearing ASAP &

    Wow I hopped over to your full post through the link. Yet another of us aero-nuts with dreams that didn't fly like we'd hoped. And you're one of the early cases before Tahoe. I don't think any of us can thank you, Tom, and others enough for the work you did and tried to do. I don't know...
  18. W

    UK denies chronic Lyme disease exists

    More Strikes Against State-Run Health Care Interesting how during the IDSA Guidelines panel hearing, the IDSA people not only denied what they talked about in their patents, or those of related companies, but suggested neuro-lyme was the European's problem.
  19. W

    WPI Finds High Levels of Retrovirus in ME/CFS Patients

    Wetting his pants? I wish, but not yet. People like Reeves and Wesseley didn't get to be who they are without thick skin to hold the melting icewater in their veins. The WPI site says "bodily fluids." To me, that includes saliva, unless someone has said otherwise, in which case it makes...
  20. W

    WPI Finds High Levels of Retrovirus in ME/CFS Patients

    Great - am I a Man or a Mouse? :eek: This is a hell of a way to have your illness validated. Was this what DeFritas was trying to verify years ago? Hmmm? I could care less about Reeves - he's going to protect his behind to the end, and those butts he's covering. I'm not sure who they are...
  21. W

    CFS Radio commercial

    Don't Wait I just heard my first CFS radio ad after 12 pm, not very long ago. 'Knew right what it was about before it was half-way over. CAA is still talking about this, the photo show, etc., and I'd be the first to say that I've said it all seems pretty lame. However, google SolveCFS, and...
  22. W

    CDC five year plan

    The Coming Winds and the Untouchables A 30-year DoD/IRS retiree and I recently talked about whistleblowers over breakfast. Whistleblower protection itself is seldom enforced. Most, whistleblowers, like otherwise unwanted federal employees, can have their lives made miserable enough - stopped...
  23. W

    Teitelbaum ME/CFS/FM and Oprah

    The Curtain of Oz? I tried responding to Oz's fibromites via his blog. Perhaps it was coincidence that suddenly I had problems getting my thoughts posted . I've admired Dr. Oz a lot, for his delivery, presentation, tackling of tough issues, and especially talking candidly with the chronically...
  24. W

    The Basic Sleep Poll

    My Sleep and Studies It's reflexive to see the poll results and insist sleep problems are near-universal with CFS/ME and FM. I think they are; anecdotally, it's rare to find a patient without any. I also think what Cort especially is saying is certainly valid, that some obstructive apnea...
  25. W

    The Basic Sleep Poll

    Yes, Angela - common in FM, probably in CFS/ME too - but for me they're a real mystery. I've had docs say I have dry eyes, but my burning and tearing typically comes at night upon taking Klonopin and right before turning out the lights. Doesn't always happen, but it can sometimes be pretty...
  26. W

    De Meirleir Gut Paper is Out!

    I'm not a doc' (your question could use one), but be careful about linking pH between blood, sweat, and tears. I've had holistics do urine pH tests, suggest an alkaline diet, etc. Until this paper, I haven't seen much professional literature backing them up. In any search, though, you'll soon...
  27. W

    John Herd: "Looking Back and Ahead'

    There's a lot to agree with... ...in both Hillary's letter and Mr. Herd's, namely that the CFS/ME community is losing ground while a sense of history and mission is perhaps getting lost. And I'm glad Hillary hasn't retired, because a German shepherd is sometimes what's needed to help wake up...