• 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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  1. U

    Special airing of "Unrest" in Alabama

    When "Unest" aired on public television in January, the Alabama public television aired it at bad times, midnight and 3 am, for example. Some other Alvama patients, including me, asked the program director to show again in a prime time slot. He watched it and then agreed it needs to be shown...
  2. U

    2017 CFSAC Summary

    See my reasoning here: http://mecfsfromme.blogspot.com/2018/02/december-cfsac-part-2-best-bang-for-buck.html
  3. U

    CFSAC Part 2: Focus on Getting Some Touchdowns

    My second review of the December CFSAC: http://mecfsfromme.blogspot.com/2018/02/december-cfsac-part-2-best-bang-for-buck.html
  4. U

    Photos recommended for news media

    I can't find the article or post where someone collected photos that the news media could use instead of the bad ones they always find. Can anyone show me where that is?
  5. U

    2017 CFSAC Summary

    They made some recommendations. I forget what. All good. Most of their talk was about physician education, increasing or continuing collaboration, and getting the DA to fix their issues in what they communicate about the disease. There was lots of talk about whether they should target family...
  6. U

    2017 CFSAC Summary

    It's a bit late, but here's my commentary on the December 2017 CFSAC, Part 1. http://mecfsfromme.blogspot.com/2018/01/december-cfsac-commentary-part-1.html
  7. U

    Younger Lab, July 2017 Newsletter

    Ha, misplace antecedent. I need to watch that.
  8. U

    Younger Lab, July 2017 Newsletter

    Hot off the press: http://bit.ly/YLJuly2017NL
  9. U

    About the Bioenergy Health Scientist, now researching our disease

    It will depend on my function at that time. I have been having a run of good days. But I've also been much more active. You never know when the payback will hit.
  10. U

    About the Bioenergy Health Scientist, now researching our disease

    I didn't ask specifically. We only had an hour. I spent most of that time finding out his history with our disease, how he got into the research of our disease, and understanding the science and how it fits in with what we already know about our disease and about the Nevada study. I also wanted...
  11. U

    About the Bioenergy Health Scientist, now researching our disease

    Just wrote this blog after my interview: http://mecfsfromme.blogspot.com/2017/03/introducing-victor-darley-usmar-phd_31.html Enjoy!
  12. U

    IOM Recommendations: Something is Missing

    I've done it again: http://mecfsfromme.blogspot.com/2017/02/iom-implementation-whats-missing.html
  13. U

    "Please Don't Let it Die" by Tina Tidmore

    Well, I Googled my name, and this old thread came up. I decided to take a read, now almost 2 years later. It seems that the CFSAC recommended the SEID criteria, but not the new name. The CDC is working on implementation with a workgroup. So my frustration has not moved to part of what I...
  14. U

    Live feed of 12/13 January CFSAC Meeting

    I want to share how important these public comments are. This is for a couple of reasons: 1. For those who serve on the committee, and ex officios, who know the disease, they may get frustrated with the challenges in getting some progress. I remember one committee member, when his term ended...
  15. U

    Live feed of 12/13 January CFSAC Meeting

    Herza fail: This contract was discussed at the last CFSAC meeting as a problem and report back. Yet, the ex officio today had no knowledge of it? FAIL!
  16. U

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    No, before him. It was when Suzanne Vernon was with CFIDS Association. He found leptin levels (in body) go up and down with symptoms severity. And I can see he might have mentioned higher lactate in the brain based on the study I' referring to. But I'm thinking about a study before he got involved.
  17. U

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    All this talk about lactate, does anyone else remember the study that showed we have higher levels of lactate in our brain? I remember a webinar Suzanne Vernon did explaining it. Seemed like a good discovery at the time (She was with CFIDS Association at the time).
  18. U

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    The recommendation included creating a "SEID" code. Yet, to my knowledge, no one has started that process.
  19. U

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    I'm sorry for the misinterpretation of my comment about "angst." I was contrasting the involvement and collaboration and discussion from the past, where instead of working with us, they were the target of our angst. I was pointing out that even though Collins isn't there, we have seen a change...
  20. U

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    I would imagine that his attending any conference of researchers would be awkward because all would be buddying up to him or asking him to fund this or that. I think it's great that Whittemore from NIH is there and that we now have NIH and CDC people coming to these conferences, participating...
  21. U

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    This is true, except putting CFS elsewhere in US clinical coding happened before ICD-10.
  22. U

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    I agree with all he said here, except I think the "SEID" name is an improvement. Glad he spoke up. One of the reasons this disease has not had credibility and considered "the wastebasket diagnosis" or not a disease entity is because it's what the doc is supposed to diagnose you with when all...
  23. U

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    I'm glad she was there to explain and make the case for the IOM report. Five things I like about the IOM committee recommendations: 1. Does not require excluding other illnesses to be diagnosed in a clinical setting. If I have anxiety disorders, I can also have this disease. If I have a heart...
  24. U

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    I agree. However, we are seeing new researcher names and faces. Maybe more will be there on Sat and Sun.
  25. U

    Dr Younger live event on YouTube tomorrow!

    Recording is now available: In the video description, you can see the questions and a link to where he h answers it (time is there but links don't work in mobile).
  26. U

    Younger Lab's 2nd Q&A Live Broadcast

    Here is the recording: 22 questions answered. If yours wasn't answered, it will be in a future broadcast.
  27. U

    Questions for Jarred Younger's 2nd Q&A Live Broadcast

    Here is the recording: 22 questions answered.
  28. U

    Questions for Jarred Younger's 2nd Q&A Live Broadcast

    2 pm Central. (I read daylight savings time started in March, so it should be CDT.) Whatever, it's 2 pm as time is now. That's 3 pm Eastern, 1 pm Mountain, and noon Pacific.
  29. U

    Questions for Jarred Younger's 2nd Q&A Live Broadcast

    One of the questions submitted for tomorrow's broadcast (Wed, April 27): Since your theory is the Gulf War illness, fibromyalgia and ME/CFS are all caused by an oversensitized microglia, what would explain the different symptoms and different triggers, such as ME/CFS is more often triggered by...