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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. T

    Tethered cord syndrome

    I think inflammation plays a big role in this. We don't know exactly what goes wrong with the filum. When Dr. Petra Klinge has done histology on the filums of TC patients, she's found inflammatory molecules and mast cells in them. I know in my own case, inflammation has played a big role in my...
  2. T

    Tethered cord syndrome

    I had tethered cord surgery 2.5 weeks ago, following craniocervical fusion in December. For the first three months after fusion, I was steadily improving, able to take walks up to 1.5 miles, and the very severe neurological problems (including paralysis, inability to speak and difficulty...
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    Update on Julie Rehmeyer

    I put up a video updating people on events in my life since I published Through the Shadowlands. The short version is that I've been diagnosed with craniocervical instability, like Jeffrey Wood and Jen Brea. https://www.facebook.com/julie.rehmeyer/posts/10159080444875968
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    Help a journalist: The psychiatric study hall of shame

    Yes, PACE and its brethren are biggies, but I'm talking about them in a different context, as a way of describing how critical it is to use a decent case definition (though of course there were many problems with PACE). So now I'm looking for other psychologizing type papers. Thanks for those...
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    Help a journalist: The psychiatric study hall of shame

    OK guys, help me out. I'm working on a story about the IOM contract, and I want to provide links to the worst studies out there about CFS, ones suggesting that CFS is related to or caused by underlying psychiatric problems, along with other studies refuting them. What I've got so far is the...
  6. T

    Slate: How did the study of chronic fatigue syndrome come to this?

    The comments are finally, finally working again -- and not surprisingly, there's an awful lot of drivel that needs intelligent debunking.
  7. T

    Slate: How did the study of chronic fatigue syndrome come to this?

    Note also, in case you haven't read it, that this is one of the very few pieces of journalism in the mainstream media that exposes the government's mishandling of CFS. That's a story that the general public doesn't have a clue about. You may or may not agree with what the author says about...
  8. T

    My experience with Klimas

    I did go on LDN, and I didn't notice any impacts one way or another.
  9. T

    My experience with Klimas

    The only prescription med I've tried so far is Atenolol -- 12.5 mg twice a day. I also wonder whether that could be making it worse. It now seems like some kind of med is in order. Part of what I'm curious about is if anyone knows what med Klimas tends to start with.
  10. T

    My experience with Klimas

    Sorry not to have updated this in so long. My follow-up with Klimas had a ton of information, but none of it directly affected my treatment. I did much better for a while after my appointment with her, primarily because of the electrolytes, but this sumer has been pretty awful again. I think...
  11. T

    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    Oh, and she said that the kids tend to be fine. She also said that she's confident that there will be better treatments by the time it's likely to be relevant for a child. I must say that I was a little bit skeptical of her degree of positivity overall, though it was also what I wanted to hear.
  12. T

    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    I haven't read through this thread yet, but here's what Klimas has to say on the subject. She says that women with ME/CFS typically feel much better while pregnant, because their blood volume and cortisol levels go up during pregnancy. They also tend to do OK during childbirth. Three months...
  13. T

    April 7/8 NIH State of Knowledge Conference - watch online to show our support!

    Restarting my router seems to have helped.
  14. T

    April 7/8 NIH State of Knowledge Conference - watch online to show our support!

    Yeah, it's in and out for me. Out at the moment, despite repeated restarts. Very annoying. My guess is that we're hosing them.
  15. T

    April 7/8 NIH State of Knowledge Conference - watch online to show our support!

    Ah, finally got it to work again.
  16. T

    April 7/8 NIH State of Knowledge Conference - watch online to show our support!

    Aargh! I was watching just fine for the morning session, but now I can't get the sound. I'm watching with Real PLayer. Every once in a while, the sound will pop on for a few seconds, but then it goes away again.
  17. T

    Miracle swim cure

    Quite interesting, Sushi.
  18. T

    Miracle swim cure

    For me, it clearly has to do with the motion in the water. Taking a bath, or sitting in a hot tub, don't do it, and I seriously doubt that being still in a pool would do it either. I do get the sense that swimming somehow gets the brain and legs talking to one another again. I wonder if there's...
  19. T

    Miracle swim cure

    I have a bizarre symptom and a bizarre treatment for it, and I'm curious whether anyone has related experiences. I sometimes have a great deal of difficulty walking. It's as though my feet weigh a thousand pounds, or as if my brain can't quite communicate right with my legs. I don't have any...
  20. T

    My experience with Klimas

    Very wise remark, Hope123. How has your experience with Klimas been? Have you gotten better under her care?
  21. T

    Hungry all the time

    A very late response to this thread. I had hypoglycemia all of my life, and would often get suddenly, wildly, insatiably hungry. It has gone away, in a very odd way: I started taking a multivitamin that made it disappear. I have no idea why, but it's been consistent: if I get lazy about taking...
  22. T

    My experience with Klimas

    It was six weeks from when I called to when I saw her at her private clinic. The disadvantage of seeing her there rather than at U Miami (where it takes a year or two to get an appointment) is that she doesn't take insurance at her private clinic; you have to send the records to your insurance...
  23. T

    My experience with Klimas

    One more bit of info that may be useful to someone, now or in the future. Here's the dosing schedule NK uses for Imunovir: Days 1-2: Take 1/2 tablet once a day Days 4-6: Take 1 tablet once a day Days 7-9: Take 1 tablet twice a day If at any point you feel like you are not tolerating the...
  24. T

    My experience with Klimas

    I'm glad to hear that Nancy continues to have things to offer, Kati. And I think LaurelW's explanation was the primary thing Nancy was thinking of in her comment.
  25. T

    My experience with Klimas

    So you're also a patient of Klimas's, Kati? How has your experience been? Do you think you've gotten better under her care?
  26. T

    My experience with Klimas

    Since Imunovir is approved in Canada and not the US, it's hopeless to think that insurance might cover it, right? I had some Nuun today, and it's pretty tasty. Kind of pricey, though. I figure I'll get some and throw it in my backpack, so that when I make the great three-block trek to the...
  27. T

    My experience with Klimas

    How long have you been working with Klimas, Marg?
  28. T

    My experience with Klimas

    Dsdsmom, my understanding was that this is a treatment that she uses regularly and has had good success with. I wouldn't swear that it's non-experimental for her, though, as I was exhausted and brain-fogged. Cloud, thanks so much for the recipe. I'll make it! I can't see myself drinking...
  29. T

    My experience with Klimas

    Atenolol is the beta blocker. She started me on 12.5 mg twice a day, which she described as a tiny dose. She said that a monoclonal TNF inhibitor might be the way to treat the cytokines. It depends on which cytokines are high. Yes, I needed a prescription for Immunovir. She ordered it for me...
  30. T

    My experience with Klimas

    I just got back from Klimas's clinic in Miami, where I had a very positive experience. Of course, the question is how I'll do over the long term, but the visit itself could hardly have gone better. I have four treatment approaches starting now, and that's before the test results come back. And...