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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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Search results

  1. Brooklyn Laura

    Xyrem/sodium oxybate experiences? Advice needed

    Thank you LauraB! I will look into that. Dr. Natelson's office says it's up to ME to appeal the insurance denial (pretty appalling, but I'm getting used to this sort of thing). From what you write, it sounds like SDS might be prepared to work with just me.
  2. Brooklyn Laura

    Xyrem/sodium oxybate experiences? Advice needed

    I am working with Dr. Benjamin Natelson in NYC. He wants me to try Xyrem. I was initially really excited, given what I've read about its track record of success with ME/CFS. I'm mostly housebound/extremely sick. Alas, so far my insurance company is refusing to play ball, given the drug's obscene...
  3. Brooklyn Laura

    Seeking primary care physician in Brooklyn, NY

    Hi, I am looking for a new PCP near my home in Brooklyn. I've already been treated by a well-known ME/CFS expert in Manhattan, so I'm not after that anymore. My goal at this point is more modest—a thorough, attentive, and well-organized clinician who's seen the disease before and can attend to...