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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

    Has Anyone Seen Dr. Kogelnik?

    I guess I misrepresented him a bit. He tests for viruses, immune function, and some hormones. Here's exactly what he tested me for: Coinfections: Coxsackie A2, A4, A7, A9, A10, and A16 (all AB). Coxsackie B1-B6 AB. Chlamydia Pneumoniae IgG, IgA and IgM. Mycoplasma pneumoniae AB IgG...
  2. J

    Has Anyone Seen Dr. Kogelnik?

    He recommended that I take Valcyte. He's a bit of a one-trick pony, exclusively focused on antivirals. Well, that's not quite true -- he's also interested in Rituximab, but he's certainly not going to look at your sleep or treat your OI or anything along those lines. He's good about responding...
  3. J

    Simulate the PACE trial with a random number generator

    This is wonderful! It *is* a little hard to know how applicable it is. Anyone know if the standard deviation increased in the PACE trial over time? I'd love to get their raw data to do some analyses and see if something like this is going on.
  4. J

    Article: NIH have gotten Myra McClure, Dentists and Psychs to go to Work on You!

    I just sent the following edited version of the letter so helpfully posted above. My changes were just to keep it as focused and as easy for a harried staffer to absorb as possible. I post it here in case anyone wants to send it or a version of it: I am writing in response to the latest...
  5. J

    Has Anyone Seen Dr. Kogelnik?

    Here's the latest info from Kogelnik: The trial he's been trying to get started is for valomaciclovir. He hopes it will be as effective as Valcyte with fewer side effects. The trial has gotten delayed, though, and he now doesn't now when it will happen. What's likely to happen first is a trial...
  6. J

    Cochrane Overview of Pharmacological Treatments For Fatigue

    Provigil I've had good success with Provigil. It is indeed hugely expensive, but there are Indian generics at about 1/10 the cost. There are a number of different varietes of generics; for me, Modalert is effective but the others are not, though that seems to vary from individual to...
  7. J

    Article: My ME/CFS Story: from the Amygdala Retraining On by Cort Johnson

    Just wanted to express appreciation for your thoughtful article, and for the remarkable work you do in this forum. I know that, as for all of us, your life isn't what you had imagined -- but boy, you're doing something else that's pretty amazing, in creating this for all of us despite the...
  8. J

    Article: A Drug For ME/CFS? The Rituximab Story

    BTW, Kogelnik is planning a trial of rituximab, in conjunction with antivirals. His thought is that the B-cells may be reservoirs for active viruses, and that killing them off helps to get rid of active virus infections. I guess that antivirals can't get at the viruses in the B-cells. (Though...
  9. J

    Article: A Drug For ME/CFS? The Rituximab Story

    Quite interesting. I don't understand the relationship between methotrexate and rituximab, though. The methotrexate, as I understand it, can be given weekly, while the rituximab can't, and I guess they must be agents that have similar effects. It was interesting to note that all three patients...
  10. J

    Has Anyone Seen Dr. Kogelnik?

    update I spoke with Kogelnik yesterday, and he said the trial of the antiviral is now likely to begin in March or April. He's gotten the drug company on board, and now he's going through the process at the NIH. My sense is that one shouldn't count on that particular timeline, though. He also...
  11. J

    Has Anyone Seen Dr. Kogelnik?

    More than a month late in seeing your response -- sorry. He's focused on coinfections. He was the lead author of the study on Valcyte, in which 30% of his patients got better *and stayed better* even off the antiviral, and another 30% or so got better but only stayed better if they kept taking...
  12. J

    Has Anyone Seen Dr. Kogelnik?

    Kogelnik This may be a bit late to be helpful, but I just went to see him this afternoon, and I was very impressed. He sounds to me like he's really leading the charge with a lot of research, he's got a coherent theory of what's going on, and he's got a bunch of promising studies in the...