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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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  1. Jemal

    Debates on ME in Dutch Parliament May 14; & Lyme May 15

    Has the revolution started? I wonder. A Dutch psychiatrist doing PET scans and finding inflammation. The hospital in Nijmegen, always promoting CBT, now doing trials with anti-inflammatory medication (they were recruiting a couple of months ago)? We have a long way to go, but I think the...
  2. Jemal

    Complete Genome Sequences of New Xenotropic Murine Leukemia Viruses

    I found this article pretty interesting: http://www.plosone.org/article/info:doi/10.1371/journal.pone.0055669?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed: plosone/PLoSONE (PLoS ONE Alerts: New Articles)
  3. Jemal

    CFS prevalence in Hong Kong

    So 1 in 10 Hongkongers have CFS symptoms? Sounds more like chronic fatigue than ME/CFS to me?
  4. Jemal

    Hillary Johnson Chronicles Search for XMRV

    10 billion would have been even greater :-)
  5. Jemal

    A week after the flu.... :(

    A quick update: I mostly recovered and feel like I am back at my old level of sickness. So luckily it wasn't a huge crash. Took me me more than 6 weeks to recover though.
  6. Jemal

    Hobbies

    Definitely videogames for me. I suffered from brainfog a lot and I couldn't play all videogames. I did find out however that online shooters were my thing. They are fast and frantic. They keep me awake because of all the excitement and most of the time I even get some energy from them. I am even...
  7. Jemal

    CFS = Immune Dysfunction?

    My illness always improves on antibiotics, even though most of the time I get them for some other complaint. So this might make sense, at least for me.
  8. Jemal

    A week after the flu.... :(

    So how are you now MiamiMatt? I think I mostly got rid of the flu, but the fatigue and brainfog are still very crippling. So at the moment I am definitely still a lot worse. Most of my other symptoms are back to normal.
  9. Jemal

    Jamies latest blog. 10.1.2013

    Weird, the blog seems to be gone... above link worked for me, but now I get an error.
  10. Jemal

    do your symptoms increase when sick with cold/flu?

    Flu knocked me out in december and after 4 weeks I am still feeling a lot worse... So my symptoms definitely get a lot worse with cold/flu.
  11. Jemal

    A week after the flu.... :(

    Thanks all. I am starting to improve somewhat, but fatigue and brainfog are pretty crippling. Most of the other symptoms are manageable.
  12. Jemal

    Jamies latest blog. 10.1.2013

    Thanks for posting Currer. I am still reading her blog as well. Looks like we need more doctors with ME/CFS, though I don't wish this disease upon them. Shame nobody in the scientific world seems interested in Snyderman's results.
  13. Jemal

    A week after the flu.... :(

    Yeah, I think my doctor gave me antibiotics to try and prevent this. Still have some left, so I am waiting to see what happens now. Yes, too expensive and I have read mixed stories about him on the Dutch forums. If my ME/CFS stays at this level however, I might reconsider. He's one of the few...
  14. Jemal

    A week after the flu.... :(

    MiamiMatt, at the moment I am taking: - ibuprofen 200 (twice a day) - paracetamol 500 (twice a day) These are mainly for the pain and fever. Normally I took only 1 Ibuprofen 200 each day. I also take Omeprazole to protect my stomach, as Ibuprofen wrecks it and my stomach is very vulnerable...
  15. Jemal

    A week after the flu.... :(

    I have had ME/CFS for a few years now. I have a mild form and was able to work. Lots of fatigue, pain, etc, but most days it was bearable. Last Christmas I got the flu and it wiped me out. I have been very sick for 3 weeks now, extreme fatigue, headaches, muscle aches, etc. It was like my...
  16. Jemal

    Should PWME be driving?

    I think it depends on severity. When I first got ill, I got in 2 minor accidents, after driving accident free my entire life (had been using cars for 12 years by then). My wife didn't want me to drive anymore. It had to do with the brain fog and fatigue, as they were stupid mistakes...
  17. Jemal

    Testing for Difficulty Swallowing

    I had difficulty swallowing as well, but I did not have any problems with my tongue. Food would be stuck in my throat, it was nasty. The doctors did an endoscopy on me and they found lots of inflammation. I have been prescribed Omeprazole (http://en.wikipedia.org/wiki/Omeprazole) and I don't...
  18. Jemal

    XMRV Induces Cell Migration, Cytokine Expression and Tumor Angiogenesis

    http://www.plosone.org/article/info:doi/10.1371/journal.pone.0042321?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed: plosone/Urology (PLoS ONE Alerts: Urology)
  19. Jemal

    Comparing PreXMRV-2 gag sequence diversity in laboratory and wild mice

    I got the impression that Hanson didn't really know if it was contamination or not, but that she became cautious because of the amount of negative studies. She detected something: http://forums.phoenixrising.me/index.php?threads/new-paper-gammaretroviruses-maureen-hanson-david-bell.17574/
  20. Jemal

    Daily Beast: Interview with Mikovits who tells her side of events...

    Nope. Every time we get some answers a lot of new questions seem to emerge...
  21. Jemal

    New Paper - Gammaretroviruses - Maureen Hanson, David Bell

    That's how I read it. For me it's another indication that XMRV/MLV's might not be so innocent...
  22. Jemal

    New Paper - Gammaretroviruses - Maureen Hanson, David Bell

    Has this already been posted? This is the patent Denise O'Keefe was posting about I think. http://www.freshpatents.com/-dt20120503ptan20120107338.php
  23. Jemal

    Medical forum making fun of ME/CFS patients

    Looks like a bunch of trolls to me, probably best not to feed them...
  24. Jemal

    Any news on Lipkin study?

    Yes, thank you Eco, for the update. Your suggestion to funnel questions to Lipkin (and probably other researchers as well) is also a good one. Is Lipkin working on ME/CFS fulltime now? Your post seems to suggest that, though probably I am not interpreting it correctly. He must have a lot of...
  25. Jemal

    Heinrich-Pette Institute Hamburg: XMRV

    Thanks for sharing Overstressed.
  26. Jemal

    Any news on Lipkin study?

    Do you know why there might be multiple stages, Bob?
  27. Jemal

    No Evidence for Infection of UK Prostate Cancer Patients with XMRV ...

    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0034221
  28. Jemal

    Membrane Fusion and Cell Entry of XMRV Are pH-Independent and ...

    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0033734
  29. Jemal

    How many have fever regularly? Any treatment that is most suitable for those who do?

    In 10 years time I only had a fever once. That was a couple of months ago and I was surprised to get it. It only lasted for an evening. Now, I do feel I have a high temperature most of the time. But when I measure it my temperature is always normal.