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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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Search results

  1. L

    What is your personal theory or understanding of ME/CFS?

    The difference between a disease and the infectious agent.
  2. L

    Interview with neuroscientist Michael VanElzakker: Vagus Nerve, ME/CFS, latent infection and more

    Well I will keep doing what works for me. Taking the immunemodulator which has many effects on Tcells.
  3. L

    Pajediene et al: Sleep patterns among patients with chronic fatigue: a polysomnography-based study

    Now my sleeppattern is very different from what it was when I was very severe.
  4. L

    Do you get body-part-specific PEM?

    My legs could not carry my body weight. I Had to crawl to the loo or getting upstairs etc.They could just stop working from one minute to the other. Futhermore I could not lift my arms high enough to comb my hair or get dressed.
  5. L

    What is the course of your ME/CFS?

    I still do. Levamisole
  6. L

    What is the course of your ME/CFS?

    I was worse everytime after a flare. When I started taking the immunemodulator I was a little better after a flare. It was very slow improbement but over time it made a big difference.
  7. L

    Chest wall pain and fatigue

    I think that is a wrong translation, must be inhale
  8. L

    Chest wall pain and fatigue

    And that does not effect the lungs? These muscles are not for breathing in?
  9. L

    Chest wall pain and fatigue

    I had very severe pain. Almost gone now but took an awfull long time to heal My lower lunglobs did not work and the upper ones barely worked.
  10. L

    Bromantane an actoprotector/adaptogen

    Seems so. I was never realy interested in that. My focus was on immunemodulation and A7 nACHreceptor
  11. L

    Bromantane an actoprotector/adaptogen

    Btw levamisole decreases HIV infectivity in vitro.
  12. L

    Bromantane an actoprotector/adaptogen

    It saved my live and I still need it every day.
  13. L

    Bromantane an actoprotector/adaptogen

    Not bromantane but I see levamisole mentioned in the article.
  14. L

    ME/CFS stopped with outbreak of autoimmune disease

    These diseases have no cure only bandages for bleeding.
  15. L

    ME/CFS stopped with outbreak of autoimmune disease

    I have been saying al along and am still convinced there is inflamation. Just not the kind doctors know. Why would damage not be repaired when the disease proces is stopped? Nature has a nice system for it.
  16. L

    ME/CFS stopped with outbreak of autoimmune disease

    https://en.wikipedia.org/wiki/T_helper_cell
  17. L

    Hypothesis piece by Amy Proal, a microbiologist with ME/CFS

    Of course pacing and research, research research to find a diagnostic test and meds to interfere. The diagnostic test is the most important. Without it you can not select research participants nor select patients to treat.
  18. L

    Hypothesis piece by Amy Proal, a microbiologist with ME/CFS

    I know one can improve after years. I was dying and have improved a lot but why suffer for years when early intervention can prevent becoming very severe. If I had known when it started what I know now it would not have become so bad.
  19. L

    Cyclophosphamide

    Levamisole has many effects but the core mechanisme is not known yet. It is hard to tell which effects are the most important in this disease. I am thinking of the superoxide decrease and the thymus hormone mimicking.
  20. L

    Cyclophosphamide

    The first thing I noticed within ten minites it eased the horrible pain enough to let me sleep a couple of hours. That made me keep taking it. Improvement was very slow and I am still not cured but compared to what is was I am in heaven. I take it at night before going to bed. If I forget I...
  21. L

    Cyclophosphamide

    Not for worms. The dosis I take is to low for that.
  22. L

    Cyclophosphamide

    Forgot to mention when it happened I was very severe