• 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. Riley

    Catalytic Antibodies May Contribute to Demyelination in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    I read the paper and watched the video, but I am not understanding any of this. What is the MS connection, and is he suggesting patients get tested for MS? I have severe neurological symptoms and am now worried about permanent damage from demyelination. The only thing that keeps me going is the...
  2. Riley

    HealthRising: "ME/CFS and the Coronavirus Vaccine: Is There a Better Way?"

    There is no ethical provider who is going to do this at this juncture. It would be pure medical experimentation with potentially deadly consequences.
  3. Riley

    Stanford experimental treatment didn’t work for Whitney

    I do struggle to be optimistic sometimes. I have another health condition for which I am following drug development, and there are dozens of companies spending tens upon tens of millions on it. Still they have not successfully brought a drug to market, but they are getting closer and closer...
  4. Riley

    it seems ron davis may have a new potential treatment

    You’re welcome! Reading my comment I see how it could be construed as another vague forum anecdote. I wish I could help document this person’s response more thoroughly like a case study, but I am too sick to do that currently. I will say this person has not spent a single second on a patient...
  5. Riley

    Dr levine wants lab at labcorp, worth it?

    I realize I’m way out of date here, but it is possible depending on where you live to get an independent in home phlebotomist to draw labs and deliver them to labcorp for processing.
  6. Riley

    it seems ron davis may have a new potential treatment

    I don’t want to take this off topic, and I don’t have explicit permission to share their story, but Abilify took this individual from extremely severe to moderately ill over the course of about 2 to 4 weeks. It’s held for a few months now. I’ve been sick a long time and met a lot of patients...
  7. Riley

    it seems ron davis may have a new potential treatment

    I believe this is correct. Although I don’t think anything is known about the treatment other than it exists, and he’s trying it.
  8. Riley

    it seems ron davis may have a new potential treatment

    I have a close friend who was extremely severe for years and has now had a truly miraculous response to Abilify, and I still am having trouble processing it.
  9. Riley

    it seems ron davis may have a new potential treatment

    I greatly appreciate you sharing, and I do take your comments in this spirit, and they do give me hope. I know other patients who do as well. I personally am not rabidly interested in the specifics because I have been around long enough to know that they are ultimately inconsequential to me...
  10. Riley

    Gastroparesis and Nutrition - Please Help!

    Years ago I tried Mestinon for just a few days, and it caused a catastrophic relapse that left me bedridden in the dark for six months. That was the last in a long line of drugs I tried and failed with. Unfortunately in my present situation, eating is not optional so I don’t know what I’m going...
  11. Riley

    Gastroparesis and Nutrition - Please Help!

    @kangaSue what do you know about Reglan? My doc wants me to take that, but I have a terrible history with meds, and that seems like a terrifying drug with an FDA black box warning. I’d prefer a risk of sudden death over tardive dyskinesia. ETA: when I have stomach pain it feels like my stomach...
  12. Riley

    Gastroparesis and Nutrition - Please Help!

    My ME/CFS doc thinks it’s gastroparesis from autonomic dysfunction. I plan to establish care with a G.I. doc and get worked up, but I’m trying to triage the situation now. I’ve been having 4-5 bm’s per week regularly up until Sunday when I stopped solid food so I don’t know if that suggests...
  13. Riley

    Gastroparesis and Nutrition - Please Help!

    Major CFS relapse last fall, IBS began after that, got it under control with low FODMAP diet, also experienced stomach pain off and on during this time, but it never prevented me from eating and I just thought it was part of IBS. I used to have very severe POTS, but it has been mostly under...
  14. Riley

    Gastroparesis and Nutrition - Please Help!

    That’s great to hear! That’s the one I ordered.
  15. Riley

    Gastroparesis and Nutrition - Please Help!

    I have developed severe gastroparesis essentially overnight. I am panicking and desperate to get some nutrients in my body. I tried ensure plus, and I had a horrific reaction to it. Does anyone have any suggestions for a PWCFS friendly high nutrient powder or liquid? I ordered some feeding...
  16. Riley

    Emerge Australia Research Interview: Professor Ken Walder

    Better late than never I suppose. :(
  17. Riley

    New research update video with Prof. Ron Davis, March 29th 2021

    Thanks to everyone involved for the update! is there any news on the nano needle? @Ben H @Janet Dafoe
  18. Riley

    Millions suffer from an invisible disease: My ME/CFS story--Ryan Prior--CNN

    Dr. Lapp was interviewed in Forgotten Plague regarding Ampligen. However, he is not Ryan's physician.
  19. Riley

    List of various recent interviews with Judy Mikovits

    I don't want to be snarky, but there is a reason for this. The issues they report on are bogus, and a serious journalist is not going to report on stories that do not have facts to support them. Yikes, it's way worse than I thought. Here are the most viewed stories at the moment:
  20. Riley

    Scientist Ron Davis Interviewed by WBUR in Massachussetts (6 minute 23 of Q&A)

    I'm curious about this as well. They've been talking about the nano needle for what, two years now? It sounds like a home run. How is it possible they've only run it on 10 patients? I say this with all due respect to Dr. Davis and OMF, and I'm sure there are reasons, but as someone following...
  21. Riley

    List of various recent interviews with Judy Mikovits

    She can talk all she wants, but the facts and the evidence do not support her. I don't know if you've noticed, but most of the content you are linking is from fringe/conspiracy theory programs.
  22. Riley

    List of various recent interviews with Judy Mikovits

    What happened was the scientific method. Nobody could replicate her results after multiple rigorous independent attempts. The other scientists involved in the initial finding retracted their papers on scientific grounds.
  23. Riley

    Jen Brea, Unrest, and CFS in the weekend Wall Street Journal

    There is a profile of Jen Brea in the weekend edition of the Wall Street Journal that talks about CFS and Unrest. A Filmmaker's Personal Look at Chronic Fatigue Syndrome It is very prominent in the print edition as well:
  24. Riley

    Bedside Chats with Ben: Ron Davis

    @Ben H It looks like a member of the CFS subreddit did it: https://www.reddit.com/r/cfs/comments/7c3wyt/bedside_chats_with_ben_prof_ronald_w_davis_phd/
  25. Riley

    NPR: For People With Chronic Fatigue Syndrome, More Exercise Isn't Better

    Very cool. I know that she spoke with Dr. Lapp by phone, but I guess his comments didn't make the piece.
  26. Riley

    Hemispherx Biopharma Announces Collaboration with Millions Missing Canada....

    This is true. To the best of my knowledge Hemispherx is not in imminent danger of bankruptcy.
  27. Riley

    Update on Ampligen Availability in the US

    I am an ampligen patient at Dr. Lapp's. Neither site is taking new ampligen patients at this time. This is coming from Hemispherx and not the doctors. I don't know what their reasoning is. They stopped taking new patients when there was a supply issue last year, but the supply issue seems to...
  28. Riley

    Interview with Maria Gjerpe: Chronically Engaged - Following Ritux One year on...

    Wow! Really? I don't think I've heard this before. That sounds amazing.
  29. Riley

    5 June - Jeremy Vine BBC R2 - chronic fatigue.....CFS

    A relative of mine found out he had hemachromatosis from 23andMe as well. He wasn't having any symptoms and just discovered it by chance, and his doctor confirmed it.