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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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Search results

  1. beaker

    Opioids in the treatment of ME/CFS patients

    There is a huge difference between addiction and habituation. I think it is important to make sure that is understood in any discussion of any long term medication use. As for myself, I couldn't do anything w/o pain meds. Even then, what I take, only takes the edge off and makes it so I am...
  2. beaker

    Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

    Perhaps. But please remember the cluster outbreaks. It could just be that all were exposed to same infectious agent.
  3. beaker

    Side Effects of Salt Tablets?

    I tried the salt tablets in conjunction w/ Florinef . Best to have something in stomach first as it can irritate. Also I drank a gallon of water. Best bet is to pre measure your water for the day. Easiest way to keep track. Your body is retaining more fluids and so less is available for your...
  4. beaker

    Is chronic fatigue syndrome finally being taken seriously?

    As someone who was in a cluster outbreak, I would disagree. The article talked about the RC outbreak , so it is probably based on that.
  5. beaker

    Angry Emails to the NIH -- Good or Bad? (Split thread)

    Yes ! Important to remember NIH works for us ( USA taxpayer anyways )
  6. beaker

    German musician dies from CFS

    thank you
  7. beaker

    German musician dies from CFS

    I missed that one. Would you happen to have a reference or at least who did study so I can look it up ? Thanks.
  8. beaker

    Dr David Bell joins Open Medicine Foundation board

    CBV is tested through nuclear medicine. He used a University near me, and I had it done there by same people. There are degrees of "severely ill" . Obviously those he tested were able to get to the center-- No way to do nuclear med tests unless you can be there. Of those he tested, he said that...
  9. beaker

    TEVA clonazepam--changed formula?

    I have never had luck with generics. I have several friends w/ same situation, so we shell out the big bucks for brand name. ( Get the bigger ones of those and cut for cost savings) Cheney at one point was only recommending the brand. But I know not everyone can do that. Really sucks that...
  10. beaker

    Dr David Bell joins Open Medicine Foundation board

    True. He did quite a few. When mine came back normal he said he wasn't surprised and why. ( I wasn't in his study) It has a couple theories about it.... long time ago can't remember exactly. One conjecture was that it was so low that the blood vessels adjusted and so gave false reading. Wish I...
  11. beaker

    Dr David Bell joins Open Medicine Foundation board

    Great news. Not only a talented and knowledgable MEcfs clinician , but a very good person too !
  12. beaker

    In memory of PR-member andreasvq

    *tears* So sad, so close to his appointment he wanted so badly. Peace @Andreas . Condolences to your loved ones......
  13. beaker

    NIH drop FMD (functional movement disorder) control group from ME/CFS study

    There are many who believe that FMD are just those who have a bio illness whose cause has not yet been discovered. That adds a layer of difficulty we do not need for our study. I do feel great empathy for those dx w/ FMD.
  14. beaker

    NIH post-infectious CFS study

    I hope you ( or someone) will get your note of first hand experience to Carol Head before her upcoming meeting w/ NIH. First hand acct. would be an impt. bit of info for them imo.
  15. beaker

    A supportive view of Wallit from CortJohnson.org

    I think it's about time patients reacted. For too long apathy, or caring but no response. Advent of social media makes it easy to respond. That said, it certainly has good and bad points. I say more good than bad. We have been too long in dark and too long left out of loop or disregarded. Time...
  16. beaker

    NIH intramural research program update

    They have been attacking @JenB today about taking small salary for Canary. Felt bad for her. I think she is trying to do things in a way that will go way beyond our community. Go Jen ! But I fear this is going off on a tangent. so back to NIH......... PS ditto for me on the last sentence by...
  17. beaker

    NIH intramural research program update

    Although I think Walitt should go, I also think that the FMD group and Lyme controls ( mostly the former) should be more of a priority. They set the tone for the study as comparisons. IT gives me a very bad feeling. And the problem to me w/ Walitt is connected to these groups. Maybe I wouldn't...
  18. beaker

    NIH post-infectious CFS study

    The same artist name is on all of them. I tried google and got nothing. I know that ICA( interstitial cystitis association) once had an art contest or exhibit of patient's work showing what it felt like to have IC. I am wondering if this strange bit of art could be from someone who did the same...
  19. beaker

    NIH intramural research program update

    Thank you for your insight. There motives are pure.-- Purely interested in putting #ME to rest w/ some conversion order BS. People don't change their specialty from FMD / CD to #ME bio illness . If it looks like a duck, and quacks like a duck.... it's a duck.
  20. beaker

    NIH intramural research program update

    Start a petition ? Write to NIH and NINDS and ask for him to be removed as head of study . Along with Gill? This is total BS. The petition needs to state rather plainly that the evidence re: the IOM report and the more recent studies don't align w/ this persons "false belief system". He must go !!
  21. beaker

    NIH post-infectious CFS study

    thanks for the clarification. : ) I need sleep.
  22. beaker

    NIH post-infectious CFS study

    Actually, I'm quite happy to have researchers to be biased in that they have read the literature and realize this is a serious multi systemic biological illness. : ) But I know what you meant. The psychobabblers must go !
  23. beaker

    Hear More on Tuesday about NIH study during CDC’s Grand Rounds

    Many surveys/screens for mental illness have questions that if answered honestly by someone w/ a chronic illness would come out as pos for MI. ie Answer Y or N ~ I have a lump in my throat and trouble swallowing. MECFS: ~Yes ( bc my lymph nodes are like golf balls) ~I'm tired all the time...
  24. beaker

    NIH intramural research program update

    Lipkin's studies published last year showed a differentiation of immune profiles for first few years( I think they had cut off of 3 yrs in their study) of illness versus later on. Which basically proved what MEcfs docs and patients have long known that if you are going to get better it's in the...
  25. beaker

    NIH intramural research program update

    ETA It seems you posted while I was writing. So I think we're good ? Brian, I am not interested in arguing. I'm not against this at all. For the most part, I'm happy about it actually. I do have specific concerns, which I haven't yet had the chance to mull over more and put down in writing...
  26. beaker

    NIH intramural research program update

    Perhaps those who have not been around for decades don't understand the game. @viggster I know you wrote that fine letter, and have done some other advocacy work.( For which I am truly grateful -- Thank you) I am guessing you feel heard on a more personal level than most of us b/c of that...
  27. beaker

    Hear More on Tuesday about NIH study during CDC’s Grand Rounds

    I wish I were in that old tired Yuppie category. It's been disproven time and time again. Look at all the kids that got sick in lyndonville . I didn't watch, so maybe I will wait until I hear it myself before I comment further on that.
  28. beaker

    Genome-wide association analysis identifies genetic variations in subjects with ME/CFS

    emphasis mine. Genetic studies are interesting and are important for many reasons. But I just feel the need to point out that genetic cause does not explain cluster outbreaks.
  29. beaker

    ****** !!!!!!!! ****************!!!!!!!!!!!!!!!! Junior version of PACE funded PI Dr Crawley

    Letters to Editors of Newspapers ? -- big and small ? Not sure how it works in UK. Here our tiny local paper publishes whatever is sent in. ( edited for language and such of course w. ed. duly noted)
  30. beaker

    NIH post-infectious CFS study

    30 years of eating shit makes us tough.