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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

    MGH or Brigham & Women's Experience?

    Thanks so much, @minimus, @Mel9, @GG, @RebeccaRe -- I really appreciate you sharing your experiences with Mestinon and with Dr. Systrom. Please keep letting us know how you're doing!!
  2. K

    MGH or Brigham & Women's Experience?

    So glad to hear, @minimus! Please keep us updated about the mestinon and whether you experience any positive effects. Fingers are crossed for you. I had to decide last week whether to keep or cancel my appointment for the iCPET testing. After talking with 5 of Dr. Systrom's patients who...
  3. K

    MGH or Brigham & Women's Experience?

    Thanks Lerner1. I don't currently take any supplements - I have been sick a LONG time -- 28 years and counting -- and after about 10 years of trying everything under the sun and not noticing any improvement and having some problems from things I've tried, I settled on waiting until there's good...
  4. K

    MGH or Brigham & Women's Experience?

    hi all, I saw Dr. Systrom in September, and had a very similar experience as @minimus (thanks for writing it all up, minimus, so I don't have to ;-)). I have an appointment for the iCPET in early December and am trying to decide whether or not to go through with it. I'm very concerned about...
  5. K

    Dr Cheney looking into low dose oxygen therapy at night

    hi all, I know this thread is from nearly a year ago, but I'm wondering if anyone knows anything new on the topic? Last spring I had a sleep study and had multiple apneas -- around 21 AHI. I also had lots of desaturations, with 122 minutes under 88, with the lowest reading at 78. I started...
  6. K

    plan for no cure and hope you're wrong

    I'm really appreciating this thread. The news that Rituximab isn't the treatment we've dreamed of is devastating. I have been sick for 27 years, and find that my perspective fluctuates with the degree of my illness. The first 2 1/2 years of being sick were so awful, mostly because I was...
  7. K

    Experiences with sleep apnea treatment amd ME/CFS

    hi there, Merylg, your comment reminded me that I hadn't checked back in and reported on my experience. I began using the CPAP machine 2 weeks ago. I'm happy to report that it was much easier than I feared to find a comfortable mask and get used to it. I think it's helping some -- the primary...
  8. K

    Experiences with sleep apnea treatment amd ME/CFS

    Thanks so much, StrivingOn -- it's helpful to hear your experience. I'm scheduled to get the CPAP mid August -- I'll report back on how it goes.
  9. K

    Experiences with sleep apnea treatment amd ME/CFS

    Thanks BruceInOz, I am afraid this will be true for me too, but I will definitely try to be sure. And I have the same problem with pain in my hips and neck from lying on my side so often over so many years. I used to have wretched ME symptoms but no chronic pain, but that changed a little over...
  10. K

    ME is not mould intolerance; mould intolerance is not ME

    I also just finished the book. It's funny how we can all read the same book and get different take-aways! I didn't feel like she underplayed the mold at all. She recounted many, many times when mold made her so sick, and nothing except getting away from it and showering made her feel better...
  11. K

    Experiences with sleep apnea treatment amd ME/CFS

    hi folks, I recently did a home sleep study and was told that I have moderate obstructive sleep apnea. The results show that my O2 saturation was at or below 88% for 123 minutes during the night. My primary care is adamant that I get treatment and seems confident that I'll feel better. But as...
  12. K

    Low-dose naltrexone (LDN) - how's it working for you?

    Thought I'd add my experience, in case it's helpful. Used LDN for 8 months total, started very low and very slow and by 5 months was up to 4.5. Didn't experience any improvement at all so stopped.
  13. K

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    I've been following this thread with great interest, and am so, so appreciative of Ron's passion and brilliance. A bunch of people brought up fears that their illness happened or became worse because of their Type A personality or because they pushed too much. I know pushing can make things...
  14. K

    Grades of CFS severity

    Thanks Sandman. I'm feeling so discouraged right now, as I feel like I was managing OK for many years-- lots of grief and sadness, but also able to appreciate lots of little things. Whenever I think I'm coping well, I realize that it's just that I"m feeling better physically! There's a line that...
  15. K

    Grades of CFS severity

    I'm curious about how others experience the difference between PEM and a crash. I find that if I limit myself (basically resting most of the day), my PEM isn't too bad, though I do get significantly worse with any upright activity. My PEM generally goes away after a few hours of rest or a long...
  16. K

    New Blog post on #MillionsMissing

    hi folks, I wrote a blog post on yesterday's protest for Our Bodies, Our Blog -- the blog of the women's health organization Our Bodies Ourselves: http://bit.ly/1U8zVHI I hope people can comment on it and share it widely on social media. Thanks!
  17. K

    Current therapeutic strategies for ME/CFS: results of an online survey

    Double sigh. I know it's the best we can do so far, but wouldn't it be nice if someday we could hear advice beyond, Learn to live within your limits, and build up your emotional resilience, because you're in for a tough ride?