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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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Search results

  1. S

    A Metabolic Trap for ME/CFS?

    From what I read that didn't relate to Phair's work but to the severely ill study, right?
  2. S

    Dr. De Meirleir found not guilty

    http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/immune/antivirals-and-immunemodulators/treating-chronic-fatigue-syndrome-mecfs-nexavir-formerly-kutapressin Bit more info about nexavir.
  3. S

    Filgotinib KDM

    2019 at the latest, but rumors had it that might come out earlier than that.
  4. S

    Dr David Tuller: A Letter to Archives of Disease in Childhood 20th Jan 2018

    He explained on the other forum that they should be up again soon. Just some issues with the server or something like that.
  5. S

    Psychologists using forum posts for research papers promoting psych theories of ME

    Finding it harder and harder to take psychological and psychiatrical research seriously.
  6. S

    oxygen - fatigue and OI...MY EXPERIENCE

    Fresh air does do me the world of good. When I was still able to take walks in the woods i'd come back exhausted but PEM was way shorter and I'd feel better in the next days. Whether it's the air or the sun or a combo I don't know, I think it's a bit of both to be honest for me.
  7. S

    What effect does getting drunk have on you?

    The last time I drank anything was about 6 or 7 years ago, made me very nauseated. I threw up and felt like I couldn't catch any air. The days after were filled with PEM for me.
  8. S

    The Psychobabblers strike back with COFFI: Crawley, White, Moss-Morris et al

    So enraging after just learning about the Swedish couple that took their kids' lives. I fucking hate these people.
  9. S

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    Can't have the truth coming out, can we?
  10. S

    The Naviaux Protocol (Remove the Trigger / Refill the Tank / Flip the Switch)

    Sounds legit.
  11. S

    Success stories Prof. De Meirleir

    I didn't, how are you gonna contact those people? Most people I know have gotten better disappeared from forums.
  12. S

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    Her science resides mostly in the made-up and get's people with ME sicker, which is worse cause she mostly targets kids. When kids don't improve they get the blame and get an alternative diagnosis. She get's mad and smears patients when she's confronted about it.
  13. S

    ME on BBC news this morning

    The first thing I thought when I saw you were at the end of the show is "this is gonna stick with people the longest" mainly because it was at the end. One of the first things I learned in giving presentations is you stick the most important information at the beginning and at the end.
  14. S

    Good article on Jen's film Unrest in The Telegraph today 24th Oct

    Here in the Netherlands we have De Correspondent who still does investigative pieces, I don't always agree with the ideology of some writers seeping through but it's far more informative than any newspaper. I think in America they have something similar with one of the newspapers? Was it the...
  15. S

    What Very Severe ME is like: Stonebird

    There's really no telling. Some deteriorate very rapidly, others plateau for a long long time. The best one with M.E. can do is stay within their limits, take plenty of rest and hope for the best.
  16. S

    Can positivity cure any disease? (blogpost)

    I already agreed tbh :D . Just love seeing you taking it apart.
  17. S

    Can positivity cure any disease? (blogpost)

    Are you saying there's no solid evidence talking therapy cures anything?
  18. S

    Dr Phil Hammond talks to Jen Brea about Unrest this morning on Radio Bristol

    There's really no evidence that many patients with ME/CFS/CF or whatever definition you take benefit from GET. PACE was so inclusive that all it really studied was people with some sort of fatigue and they came up empty.
  19. S

    UK, Weds 18 Oct: Jen Brea & Omar on ITV news and in The Times with Unrest

    Her continuisly stressing she found help/friends online is so good with certain people stressing don't look up anything about this disease. It's just a pity this place is at such a shambles nowadays we could really stand to help so many people find answers and in the process help ourselves/advocacy.
  20. S

    Professor James Coyne commenting on poor British and Dutch fatigue research

    The Een vandaag bit warrants it's own thread imo.
  21. S

    "Unrest" Documentary Reviews

    It isn't trolling. It's angry advocacy at the wrong time and place. I've seen it a number of times before, likely from the same person. Attacking bloggers that were sticking up for us etc, attacking (good) science that uses the lable ME/CFS. Because of the cfs is not me thing. Understandable...
  22. S

    "Unrest" Documentary Reviews

    I can just imagine who it is tbh. There's someone from NL that doesn't pass up any opportunity to spout the "ME is not CFS" line. And eventhough he's right, he does it in the most unhelpful fashion imaginable.
  23. S

    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    That's fair enough, it definitely isn't without risk and 10% did declare they got worse on an independent survey. On the other hand there's a big number of successtories too. 75% on the same survey though KDM himself says that you oughtta keep a 20% placebo rate with M.E. But it is experimental...
  24. S

    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    Can't speak for anyone else, though I did meet some people irl and on dutch M.E. forums who went back to work, playing sports and having a social life. In my own particular case I got a bartonella diagnosis which was spot on. I have the typical bartonella-rash to prove it. And about 2 years ago...
  25. S

    Cosmopolitan: Millions of Women Suffer From a Disease That Virtually Sucks the Life Out of Them

    Nice article. There's no commenting possible on the article-page itself btw?
  26. S

    Dutch fatigue scientists getting worried

    Bips means bottom or ass in dutch.
  27. S

    General ME-related news from Scandinavia

    Not pulling any punches either it seems. That's NL, UK and Scandinavia were we are seeing some headway now too, after great progress in the US.
  28. S

    For People With Chronic Fatigue Syndrome, More Exercise Isn't Better

    I could've been mild as opposed to almost homebound if that were the case.
  29. S

    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    So the better strategy would be for us to big up the NICE decision and ignore the LP-bullshit untill it get's scientifically disseminated?
  30. S

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    No arguments there.