• Welcome to Phoenix Rising!

    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. dancer

    super depressed about MD's and Montoya news

    Not to get off topic (about the lack of doctors) but I quick checked the Mayo Clinic website, because last I checked they were horribly backwards in their understanding of this disease. Here's what their website still says: " Treatment There is no cure for chronic fatigue syndrome. Treatment...
  2. dancer

    Derya Unutmaz Jackson Laboratory - announcement Weds 27 Sept

    His twitter bio says: Professor at The Jackson Laboratory for Genomic Medicine. Human immunologist, interested in aging research, personalized medicine and technological advances. And he's tweeted about #millionsmissing and retweeted good articles about me/cfs. Interesting!
  3. dancer

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    My brain hurts, and I've had a mix of gratitude (so many brilliant minds who care, are doing good science, and are working on our behalf) and discouragement (still so little funding, no specific treatment directions, years of waiting still to go) as the day has gone on. I think Mark Davis' talk...
  4. dancer

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Dr. Naviaux shared about his research in the cell danger response. I was going to post highlights, but got distracted because my 20-month-old grandson was on my lap, and kept pointing to the screen saying, "Sing!" He assumed that if someone was on the screen he should be singing. My son said, "I...
  5. dancer

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    300 attending! and 1500 live streaming!
  6. dancer

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Now I'm hearing voices (I mean from the live stream, not in my head)... "We're just about to begin, please take your seats." Yep! I'm seated here in bed, ready for info!!!
  7. dancer

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    I followed the link and have the "Welcome" page, but no sound yet. SO eager for this! THANK YOU for arranging for live-streaming of this important day!
  8. dancer

    How often do you cry?

    An interesting question. Since getting ME/CFS, I've probably been able to cry a handful of times in 10 years. I don't have the physical energy that crying demands. Any emotion - including joy - can bring on a payback of exhaustion, so just as I've learned to move more slowly, I also have learned...
  9. dancer

    David Tuller needs our help

    Made my small donation...wish I could do more. David's writing has been a brilliant beam of hope as I despaired about the poor nonsensical research and watched the burgeoning high quality research developing elsewhere.
  10. dancer

    Naviaux to Speak on CDC Conference Call May 25

    I had great intentions to write a summary - but after listening for an hour my brain crashed. Diwi9 explained it all VERY well. All I'll add is that I felt cautious optimism as I listened to him.
  11. dancer

    Naviaux to Speak on CDC Conference Call May 25

    Dr. Naviaux's talk is jam-packed with info and interesting theories.
  12. dancer

    Naviaux to Speak on CDC Conference Call May 25

    Right now Dr. Unger is giving a report on what the CDC has been up to. Sounds like updates to their website will be happening by mid-summer. She's also reporting on their multi-site studies.
  13. dancer

    Naviaux to Speak on CDC Conference Call May 25

    Dr. Unger is saying that their guest speakers represent their own views and not that of CDC.
  14. dancer

    Naviaux to Speak on CDC Conference Call May 25

    The call is starting. The host is saying that transcripts will be available at a later date on the CDC website.
  15. dancer

    Naviaux to Speak on CDC Conference Call May 25

    I think the slides referred to "low dose suramin" so perhaps it's repurposing it's use in lower than normal (and not as toxic) dosage. I am confused/curious to hear about his theories for how this drug could address ME/CFS. The slides mention 50% of people live with chronic illness...but I'm...
  16. dancer

    Naviaux to Speak on CDC Conference Call May 25

    Bumping this, in case folks miss it under the calendar of events. I hope to listen in. My doc has been interested in Naviaux's research.
  17. dancer

    US Action - ME/CFS Awareness Day Congress Campaign

    Thank you for making this easy and do-able. I'm in a crash, and was tempted to slide past the call for advocacy, but the form made it possible for me to send - even on a bedbound/little-brain day. :-)
  18. dancer

    Problems with LDN-anyone have any advice?

    I found LDN helpful for pain and sleep (once I got past the first week of insomnia), but each time I tried it, after a few weeks I got horrible stomach pain. Tried several times and just figured I couldn't tolerate it, which made me sad, because I had found it helpful. My new D.O. told me LDN...
  19. dancer

    Upcoming Webinar with Drs. Susan Levine and Jose Montoya

    Anyone hearing anything? I keep getting, "The Webinar will begin shortly" - but it was supposed to start ten minutes ago.
  20. dancer

    Fasting-like diet reduces multiple sclerosis symptoms: applications for ME?

    My doc said for many folk in America, they are like a car with too much bad fuel and fasting can be helpful to "clean the system" but that with ME/CFS I am "out of fuel" and fasting is a bad idea for me. Before ME/CFS I did a few fasts and found them helpful. Since ME/CFS I've tried and it made...
  21. dancer

    Poll: Which Type of Treatment Has Not Worked For You At All?

    Yes, I fit the Canadian Consensus Criteria.
  22. dancer

    [YouTube]Leonard Jason's talk on Myths about ME and CFS

    Lenny Jason is a treasure. Over the years I've listened in to CFSAC when he's spoken up there, and followed his research (taking his unique angle to show the problems with definitions, questionaires, and conclusions as applied to ME/CFS). Such a dedicated, long-term gift to our community!
  23. dancer

    O Carol!

    Well deserved honor. Carol has turned around the former CAA into an organization I can actually support.
  24. dancer

    Band, Wearden et al: Activity Patterns in Response to Symptoms in Patients Being Treated for CFS

    Let's not insult tap dancers ;-) (that was in response to the earlier post about the whole model being tap dancing) Hee hee!
  25. dancer

    Worse Than the Disease by David Tuller

    This article is as much a tour de force as the Virology articles. Wow! And the patient who was profiled was so courageous to share her experiences. I hope many many people read this. I ached as I read about the attempts at GET which set her back - so similar to my experience. When I was...
  26. dancer

    Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

    After years and years of bad days for so many of us, today is a GOOD DAY. :-) Thank you to all for tireless work.
  27. dancer

    Alem Matthees has been nominated for two WEGO Annual Health Awards

    Has anyone nominated David Tuller yet?
  28. dancer

    absent/diminished patellar reflex

    Weird...the one doc who bothered to do that test on me was shocked at the OVER-reaction. At the slightest tap my leg FLEW. This was early on in the illness. He asked if that was typical for me (it wasn't). More head-scratching and shrugs.
  29. dancer

    Treatment of insomnia reduces fatigue in CFS in those able to comply with the intervention

    Sounds like the Borg. "Resistance is futile." You must comply. Ugh is right.
  30. dancer

    Links to media coverage of the Naviaux study (Aug 30, 2016)

    LOL! The photo makes it look like she drank some hot cocoa laced with sleep meds and passed out, still clutching her cup.