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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. J

    Carmine Pariante's MRC research award-Persistent fatigue induced by interferon-alpha

    This thread deserves to be bumped I think.
  2. J

    Chronic fatigue syndrome page on RationalWiki.org

    I don't know a lot about them. There was a controversy some time ago, maybe a decade ago. I believe there was some sort of threat lodged, or there was an allegation to that effect. There may be a link in, of all places, the RationalWiki page. My understanding was that it was a fabrication, but...
  3. J

    Chronic fatigue syndrome page on RationalWiki.org

    Well, now that we know that the geniuses on "RationalWiki" are following this discussion, let's afford them the opportunity to congratulate themselves. As they usually do, because it's generally difficult to draw any conclusion other than that they think they're the only clear-thinking...
  4. J

    Congress on the brink of repealing Obamacare

    No, I haven't. And given everything I've been reading on this forum for more than seven years, given the large numbers of people on this forum sharing their experiences living with "Universal Health Care" as ME patients in the UK & Western Europe, I'm quite grateful, thank you. You may be...
  5. J

    Chronic fatigue syndrome page on RationalWiki.org

    Yeah, it's cherry-picked, sure. But, and I'm not ideological about this...that page and that site are not right-wing, I assure you. I disagree with @Chriswolf in the sense that I wouldn't use a link from libertarian/Austrian econ sites to make my point, but that's his opinion which is fine & in...
  6. J

    America’s Hidden Health Crisis: Hope for Those Who Suffer from ME/CFS (posted by CDC)

    Beth Unger's comments at CFSAC about PEM didn't sound like times were changing to me. You did see that the CDC links I posted are current as of today? BTW James Jones is neither dead nor buried. Still at the CDC, and just one year ago published this CFS paper about 'observed illness...
  7. J

    America’s Hidden Health Crisis: Hope for Those Who Suffer from ME/CFS (posted by CDC)

    I'd be happy to acknowledge their change of heart, but it's kind of difficult when they still have this https://www.cdc.gov/cfs/management/quality-of-life.html and this https://www.cdc.gov/cfs/management/managing-activities.html which unlike blog posts, doctors are more likely to pay...
  8. J

    Congress on the brink of repealing Obamacare

    Yeah, I honestly don't have an answer on that one--it wasn't what I was addressing. I understand where you're coming from & I can't say I have any quarrel with what you're saying. On the other hand, there are some pretty persuasive arguments that the ACA didn't exactly work out as planned & has...
  9. J

    An open letter to Psychological Medicine, again! by D Tuller et al

    They were being praised in the debate in the Scottish Parliament yesterday, weren't they? If any sympathetic ears are listening, the result is they think this is a good charity. Same for newly diagnosed patients, or patients who are new to the 'community.' There are US-based entities that are...
  10. J

    Congress on the brink of repealing Obamacare

    Single-payer health care is great on paper, and probably great for a majority of people. Great for governments, maybe, in terms of providing good care for a majority of citizens while reining in costs. Sounds great. There may be reasons why it wouldn't work so well in differing societies given...
  11. J

    David Tuller: New Virology Blog post (May 3rd)

    Weak.
  12. J

    Coyne: Patients writing about their health condition, abused by a peer reviewer, silenced by BMJ

    I don't think it's the same paper. The reanalysis paper appeared in a time frame that doesn't suggest there was time between when the data was released & the paper was published, if in between it was sent to the BMJ & enough time spent for review & consideration resulting in refusal to publish...
  13. J

    Coyne: Should The BMJ silence authors who were abused by a reviewer?

    I don't think it's likely to be any names we'd be as familiar with as we are with Wessely's, and the PACE team. After everything that's transpired, it would be far too irrational to display anger they've for so long managed to keep under wraps, if indeed they ever express themselves that way...
  14. J

    Louisiana (USA) radio station to have a programme on ME/CFS on March 30

    Well, I think it's safe to say they didn't really spend much time discussing 'chronic fatigue syndrome.' Most of the time seemed devoted to Fibromyalgia, Rheumatoid Arthritis, Lupus, and some common symptoms including chronic fatigue. But I would say it was done in any sort of offensive way...
  15. J

    Ron Davis featured in "nature" journal of science article

    I disagree with the dismissal of the criticisms: when someone tries to take down information, particularly research, that we consider to be valid and important, I find it valuable to see how this is approached. What they're thinking, perhaps what their agenda is, and/or are there any legitimate...
  16. J

    Is anyone working on the Cochrane reviews issue after PACE debunking?

    Cochrane certainly 'outranks' the IOM report, that's for sure.
  17. J

    Live feed of 12/13 January CFSAC Meeting

    This is the part where they talk about how the whole thing is designed to never function properly.
  18. J

    Live feed of 12/13 January CFSAC Meeting

    This is Dane Cook? I missed the introduction. Thought the one saving grace was that this had to be someone who had zero experience with ME/CFS.
  19. J

    Live feed of 12/13 January CFSAC Meeting

    I'm using Google's Voice app for the audio on my computer. I had almost given up & decided to try that. The process for installing the Cisco app just to see the slides was not easy & ultimately absurd. But Google Voice is working for the audio for the moment. The icon for it is next to the...
  20. J

    Chicagoland Area CFS/ME Doctors

    It's not enough for us to be as sick as we are. We have to advocate for ourselves, raise our own funds for research, and educate doctors--those who are willing to listen, that is. A 'CFS specialist' with an unfamiliar name is, unfortunately, just as likely to follow the CDC/Mayo line and be...
  21. J

    Edward Shorter to give talk on CFS at NIH

    You'd think Walitt--assuming this is correct and he was responsible for the invite--would have chosen differently, knowing that his very presence is unpopular. Instead it was decided that our interpretation of the published research is unimportant, and it was an ideological choice. I remember...
  22. J

    Edward Shorter to give talk on CFS at NIH

    I would have an easier time with this if Shorter were just the almost-cartoonish villain he seems to want to be. He uses the philosophy of the heel (bad guy) in professional wrestling. A couple of comments on one of the feminist blogs complaining about him alluded to this. Obviously that...
  23. J

    Jonas found guilty

    This led to a fairly interesting thread, quite a few replies. Shoot, I was just trying to post it as a URL to encourage people to click on it and take a look. Not sure if just clicking anywhere will bring you to the actual Tweet and subsequent thread. If not, you can click on the time/date...
  24. J

    GcMAF warning?

    That's a long, loaded subject. I think the only doctors working with it now are Dr. Peterson in Nevada, Dr. Lapp in Charlotte, and Dr. Bateman in Salt Lake City. I could be wrong on that. Ampligen seems to work very, very well for a subset of us. Nobody really knows why. It's held by a company...
  25. J

    GcMAF warning?

    Bad news here. In a way there's a similarity to Ampligen in that here's something that may help people but it's been in the hands of people prone to mismanagement, or worse. Unlike Ampligen, I can't imagine anything taking place anytime soon in the way of any sort of above-ground, scientifically...
  26. J

    Podcast by Dr Ronald Hoffman on PACE Trial

    Yes, it is. But to be honest taking into consideration who he is and what he does--people I know have been to his practice, and he is quite the 'wellness' empire builder, if not nearly as offensively as someone like, say, Gary Null--I see this as a positive. He's getting the word out to a good...
  27. J

    Investigating using FITNET to treat paediatric CFS/ME in UK (FITNET-NHS)

    @Dolphin Boy, she wants help NOW, doesn't she. https://www.timeshighereducation.com/unijobs/listing/42408/research-associate-for-fitnet-nhs/?trackid=10
  28. J

    Appt With Enlander

    I have seen Dr. Alcarez--just came from an appt with her, actually, as I type this. It's a bit early in the game for her and I'm not sure what her group practice yet thinks of ME/CFS, but she seems eager to try to help. I am a longtime patient of Dr. Enlander's but getting to his new location is...
  29. J

    Appt With Enlander

    Dr. Enlander has scaled down, but would like it known that he has not retired.
  30. J

    Blog: "My Comment to MEAction’s #MillionsMissing Protest Demands"

    it's okay @Snowdrop I'm not trying to be terribly forceful about this. I don't expect people to agree with me. Over the years it seems few have. I do find what ME Action is doing to be intriguing, and clearly there are some good people with some good ideas and they're making strides we haven't...