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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. K

    Pinecone extract

    Yes I have tendency to autoimmune, that's why I've started taking immune extra: it promised to recover this. So now I'm (even more) confused. I don't know if I've high antibody titers to HHV-6. I've had ebv, and other herpes virusses.
  2. K

    inhibitors of xmrv

    This article might be interesting http://www.virology.ws/2010/04/07/inhibitors-of-xmrv/
  3. K

    Taking Adderal, Ritalin or Concerta for Cognitive problems?

    Hopingsince88, I take the methylfenidaat (Ritalin) which is not time-released. There's a time-released methylfenidaat called Concerta, but my insurance doesn't pay for that. They do for Ritalin. I take every 4 hours 10 mg, so 3 or 4 times a day. It's a low dosage. My doctor said I could have...
  4. K

    Taking Adderal, Ritalin or Concerta for Cognitive problems?

    Ritalin works for me Since january this year I'm on Ritalin. I was very reluctant, but I'm glad I've given it a try. I want to tell you about my experiences with this drug, but at the moment I'm pretty tired, so I think there will be a lot of misspellings etc in my narrative. :ashamed...
  5. K

    Pinecone extract

    A few days ago I've started taking pine cone extract. It's an immune modulator. In this article dr Cheney recommends it. It shifts the T-cel activity, so it may help the immune system fighting viruses, and reduce allergies...
  6. K

    letter Nijmegen to Whitemoore

    I think it's incredible arrogant of van Kuppenveld. But hey, in Nijmegen they have their cognitive behaviour therapy; the one and only therapy which has proven to 'cure' cfs. The therapy includes that people who suffer from cfs have to be confinced their not ill. They must learn to have other...
  7. K

    How long did it take before you had benefits from isoprinosine?

    O, it must have been the fever... I read 2 tabs a day, instead of 2 tabs, 3 times a day. Thank you for sharing this. Since 4 days I'm on a high dosage, 6 tablets for 5 days. I've also made the desicion to take Immunextra at the same time. I have a feeling Immunextra does something for me...
  8. K

    letter Nijmegen to Whitemoore

    A few days ago I read an article about how Frank van Kuppenveld, researcher in the Radboud hospital in Holland, interpreted the differences in studies: in the US they should have taken blood from a group of people which is not reprentif for the biggest part of cfs-ers, because in Nijmegen they...
  9. K

    How long did it take before you had benefits from isoprinosine?

    Thank you for the feedback. So it's very different; one person can have benefits right away, another person sees results after months. I have taken it one month. I took it in very low dosages to see if I'm not allergic to isoprinosine. Right now I'm having a cold, or flu (something with...
  10. K

    How long did it take before you had benefits from isoprinosine?

    Hi, I'm new here. My English isn't very well, I'm sorry for that. There's something I would like to talk about with cfids-ers. I've been very ill for years. It's getting better, but I suffer a lot from allergies and I often have infections etc. At the moment I'm searching for information...