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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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  1. Sing

    The Atlantic: Fatigue Can Shatter a Person by Ed Yong

    MassME Annual Meeting October 28, 1-3 pm ET We are excited to announce that Pulitzer Prize winning science writer Ed Yong will be the guest speaker at our Annual Meeting this fall. Yong's coverage of Long COVID and ME/CFS in The Atlantic has been groundbreaking, and has shaped and changed the...
  2. Sing

    The Atlantic: Fatigue Can Shatter a Person by Ed Yong

    Yes! I found an earlier article by him in the Archive on Long Covid from April of 2023 and he references his first article on this subject from 2020. You can listen to the recording Ed Yong made of this longer article , which is near the top of the article. It is terrific! And it definitely...
  3. Sing

    The Atlantic: Fatigue Can Shatter a Person by Ed Yong

    I believe that Ed Yong wrote an earlier article on this subject, probably also in The Atlantic.
  4. Sing

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    @Hip Well, there is lots of brainpower and heart I am finding in this thread today. It was only by a lucky accident that I discovered the great news that Cort is back, then to see so many valued people, familiar to me from the past, (when I used to participate) joining in. PR was a lifesaver...
  5. Sing

    Ron Davis Update

    This shows how we arent all the same in terms of memory and cognitive abilities. One size does not fit all. I know @JanetDafoe is entirely well intentioned and that her judgement around helping does help some. It is hard to be critical and to hear it, but I think my kind if experience, due to...
  6. Sing

    Ron Davis Update

    I know you were trying to help patients understand Robert Phair’s talk, but each time you interrupted him, I lost the thread of what he was explaining. None of your interruptions were helpful to me at all. He also did not continue his talk exactly where he left off but seemed derailed by your...
  7. Sing

    Article On the Absence of Light and ME/CFS

    Yes, winter in the NE has felt like a long, long endurance test. It is very hard to be confined so much, mostly in one room that has enough heat. With neuropathy all over, especially the nerves around my neck, I can’t wear a hat and am « on a timer » for even the best materials for a scarf. Then...
  8. Sing

    Article On the Absence of Light and ME/CFS

    Thank you for such an interesting and thorough reply! Would you take a picture of the ceramic base too, just for an example? Like you I am often cold, often in stiffness and some degree of pain, and lack much physical comfort. It is hard and discouraging. I would like a heat lamp!
  9. Sing

    Article On the Absence of Light and ME/CFS

    @soulflower I didn’t know there are infrared lights for SAD. That is something I would like to try. I am light sensitive too, in the ordinary way, but definitely do best in spring and summer, worse by October when living close to the Canadian border. I like the infrared end of the spectrum for...
  10. Sing

    Link today for talk by Alain Moreau?

    I must have made a mistake—sorry!
  11. Sing

    Link today for talk by Alain Moreau?

    Does anyone have the link for the talk right now with Alain Moreau in Montreal?
  12. Sing

    Article On the Absence of Light and ME/CFS

    https://www.wbur.org/hereandnow/2019/12/17/lighting-alzheimers-sleep-depression Other neurological conditions show these and more benefits. What helps is 4X the usual indoor light level just for seeing, or else a lot of good sunlight indoors, until 6 pm was my takeaway. Also taking a walk...
  13. Sing

    Ron Davis Talk: Quest for an ME/CFS Diagnostic Test, Columbia Univ, Nov 21, 2019 Livestream

    Interesting idea that collagen could be a preferred energy source. This would not surprise me.
  14. Sing

    Ron Davis Talk: Quest for an ME/CFS Diagnostic Test, Columbia Univ, Nov 21, 2019 Livestream

    I think I have collagen degradation too, not only in my neck. But I do have osteoarthritis and am getting up there in years. Still my decline in this area is going faster than my relatives, so I wonder if my MECFS is pushing things along?
  15. Sing

    Ron Davis Talk: Quest for an ME/CFS Diagnostic Test, Columbia Univ, Nov 21, 2019 Livestream

    I was listening not only for my own information, but also because I was curious about the way he would deliver this talk and the kind of impact it might just have. My apology for another sports metaphor but I felt he knocked it out of the park!
  16. Sing

    Ron Davis Talk: Quest for an ME/CFS Diagnostic Test, Columbia Univ, Nov 21, 2019 Livestream

    Yes. Of course I have a weak memory, so I am not always sure what is new and what is not. His presentation was so memorabe,however, I hope a lot of us watch it.
  17. Sing

    Ron Davis Talk: Quest for an ME/CFS Diagnostic Test, Columbia Univ, Nov 21, 2019 Livestream

    He really is! He is punching now with the power of a champion. This presentation was riveting and powerful by its directness, honesty and courage. I also felt astounded by all the experiments and avenues for discovery that he is working on. If one approach isn’t promising, he is right on to the...
  18. Sing

    Ron Davis Talk: Quest for an ME/CFS Diagnostic Test, Columbia Univ, Nov 21, 2019 Livestream

    Yes, he said that this would be a job for the biochemists.
  19. Sing

    Ron Davis Talk: Quest for an ME/CFS Diagnostic Test, Columbia Univ, Nov 21, 2019 Livestream

    I listened to the whole thing and found it an excellent talk and update from Dr. Davis.
  20. Sing

    Naltrexone, NK cells and the calcium ion channel research

    Could I ask what herbs you find valuable? Or have you gone into this on another thread?
  21. Sing

    Naltrexone, NK cells and the calcium ion channel research

    Trouble is, it doesnt help a lot of us.
  22. Sing

    How fast does improvement take on Immunoglobulin?

    My doctor and I have been working on the hypotension and I do take Florinef, but these meds don’t resolve the hypotension or the symptoms from immunoglobulin. They probably help my symptoms, just don’t fix all the issues.
  23. Sing

    How fast does improvement take on Immunoglobulin?

    @Avena I am sorry it didn’t work for you. The sleepier side effect for me is accompanied by more stupidity, hypotension and weakness. This is not so extreme I want to stop this trial of immunoglobulin, but if it turns out not to give me help by 6 months, I also won’t be very regretful to give...
  24. Sing

    How fast does improvement take on Immunoglobulin?

    Would you be willing to share what kinds of improvements you hd?
  25. Sing

    Xanax or Other Benzo Withdrawal SUCCESS Stories, Please.

    I was on a very low dose of a benzo and got off it by very slowly tapering off. This medication had been helpful to me for sleep and pain but after awhile it started to cause a bit of depression. Just the edge of that depression told me I didn’t want to proceed with it, and at the same time—as...
  26. Sing

    How fast does improvement take on Immunoglobulin?

    Only been at it for 2 ½ months and not sure I am seeing improvements yet. Have been told that 6 months is a good trial. As for side effects, I am still sleepier and more brain fogged than I was before starting, so I can’t say yet that it is helping, but I still have more of a fair trial to go.
  27. Sing

    Dr Grubbs team ‘Strongly Suggests’ Autoimmunity in Dysautonomia

    Depends on the doctor. My neurologist and immunologist for example only use non-ME/CFS diagnoses. Another doctor uses the whole laundry list.
  28. Sing

    Dr Grubbs team ‘Strongly Suggests’ Autoimmunity in Dysautonomia

    I had 10 out of 11 positive of the autoantibodies tested by Cell Trend in Germany. The 11th, I was « at risk » (very close to positive). However, I have not had POTS except for one very unpleasant episode years ago. Instead, my heart rate stays low and drops ever lower, often when standing or...
  29. Sing

    How fast does improvement take on Immunoglobulin?

    Yes. IVIG is the intravenous form and SCIG is the subcutaneous, which the body absorbs slowly over several days. Same medication.