• 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. R

    NIH isn't adequately funding CFS viral research because they believe the cause is unknown and this needs to change

    I could not read all the posts in this thread, I just wanted to point out that the NIH is going to have an ME/CFS conference in December. NIH ME/CFS Young and Early Investigators Conference December 11, 2023 Bethesda, MD (in-person and virtual) Advancing ME/CFS Research: Identifying Targets...
  2. R

    Charité Fatigue Center @ChariteBerlin will host its 2nd international ME/CFS-Conference,

    https://drive.google.com/file/d/17OZSXVzkJo0vbsF6Lq7OeKTq7vChEXpe/view
  3. R

    Bhupesh Prusty - latest research study

    He still is on Twitter: https://twitter.com/BhupeshPrusty
  4. R

    NIH intramural research program update

    Well it looks like we will finally see the intramural study in 2023. Another interesting piece: In a separate study set to begin soon, Nath and NINDS clinical fellow Yair Mina plan to test corticosteroids and intravenous immunoglobulin (IVIg) treatments for neurological symptoms in people with...
  5. R

    From Cort's site: Success! Nath Reports the Big ME/CFS Intramural Study Points to Possible Treatment Options

    From the IIME site: "Due to the pandemic the International ME Conference Week events in London for 2022 have been amended. The pandemic has continued to disrupt plans for our annual events and the charity has decided to reschedule some of these events. Due to absence and unavailability of some...
  6. R

    BC007 - what are your thoughts?

    Comment from a novice here. I'm excited to see this trial. If autoantibodies are involved and patients get better this would be a huge leap in our understanding of what is driving this disease.
  7. R

    Oct 23: Advances in Our Understanding of ME/CFS and the Impact of Long Covid

    I was told it would be recorded for future viewing.
  8. R

    it seems ron davis may have a new potential treatment

    I guess we all will have to listen in. The good news is that besides Ron Davis there are other ME/CFS researchers speaking in the morning. We might get a better glimpse where the research stands.
  9. R

    it seems ron davis may have a new potential treatment

    Ron Davis will be giving a presentation at the NIH conference on September 27th titled: "The Role of the Metabolic Trap in Fatigue" https://web.cvent.com/event/4630788d-baa2-47fb-af01-0f5b8d0d92bd/websitePage:645d57e4-75eb-4769-b2c0-f201a0bfc6ce
  10. R

    Long Covid: Summary of discussions

    I don't know if this is the place for it but I just wanted to share an article I'm reading. Please delete if not in the right area. Your Immune System Could Turn COVID-19 Deadly...
  11. R

    it seems ron davis may have a new potential treatment

    That's very understandable and sixteen years into this disease I'm becoming more like this myself after chasing treatments for years. I do understand the strong desire that those who choose to try treatments early. We all have our own experience's and risk tolerance.
  12. R

    it seems ron davis may have a new potential treatment

    Just speculating a bit here. How long till the patient community has access to this proposed treatment that @Whit is on? I imagine that Stanford will monitor Whitney for a minimum six months but more likely a year looking for side effects or tolerance issues. If all that goes well and Whitney...
  13. R

    Stanford researchers may have answer to why COVID patients develop 'brain fog'

    https://abc7news.com/health/stanford-researchers-may-have-answer-to-treat-covid-brain-fog/10828320/ Working with a team in Germany, they found that the virus triggers brain inflammation, which leads to symptoms similar to Alzheimer's and Parkinson's. "Researchers at Stanford Medicine...
  14. R

    Abilify- Stanford Clinic Patients

    Apologies if already posted. https://med.stanford.edu/content/dam/sm/dbds/documents/data-studio/abstract.20201118.pdf " In a retrospective study, we reviewed the medical records of 101 patients who met the criteria for an ME/CFS diagnosis according to three separate case definitions (Fukuda...
  15. R

    An Announcement from Ron Davis, PhD

    https://www.omf.ngo/2020/08/05/kynurenine-trial-in-me-cfs/ "New methods have been developed under Dr. Bergquist to measure the metabolic pathways relevant to Kynurenine. These new methods are used to identify people with ME / CFS that have low Kynurenine in the plasma. This method will also be...
  16. R

    Is Ron Davis’s ME/CFS Collaborative Research Center at Stanford Poised for a Breakthrough? - Health Rising

    Cort added some additional info to his blog: "A new research thrust has emerged, courtesy of Chris Armstrong PhD - an Australian researcher who’s been working with the Open Medicine Foundation (OMF) over the past year. Several years ago, Armstrong said he was "looking for Waldo" but wouldn't...
  17. R

    Grant Awarded to Nitrogen Hypothesis Study

    @Ben H Hi Ben, Is this an NIH grant? Can you find out for us? Thanks!
  18. R

    California fires

    I live between the CZU and the LNU fires. The smoke at times is unbearable and is causing headaches and dizziness. I also have a messed up autonomic system that makes dealing with the heat difficult. So having to close the windows because of the smoke has been difficult. I have great empathy...
  19. R

    Article: As Covid-19 Symptoms Linger, Demand for Specialized Clinics Surges.

    Another quote from the article: "Mount Sinai’s Center for Post-Covid Care first opened its doors in May. It focuses on assessing patients with longer-term symptoms and connecting them with the appropriate specialists and care. The center saw exponential growth in demand in June, according to...
  20. R

    Article: As Covid-19 Symptoms Linger, Demand for Specialized Clinics Surges.

    Here are two excerpts from an article in the WSJ that is behind a paywall. https://www.wsj.com/articles/as-covid-19-symptoms-linger-demand-for-specialized-clinics-surges-11597925200?mod=hp_lead_pos10 "The medical community is turning more research and clinical attention to this cohort of...
  21. R

    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    Hi Raghav, Thanks for the explanation. I was shocked at the statement you posted but figured if he had made that much progress and was willing to say so publically then it would of made it a lot easier to raise the needed funds. I was just responding to your comment. I don't need guarantees from...
  22. R

    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    If he is willing to publically stand behind the statement and as you say give some specifics, I would think the community would be mostly committed to help in raising some of this money. This is a pretty bold statement for him to have made.
  23. R

    How does COVID-19 kill? Uncertainty is hampering doctors’ ability to choose treatments

    https://www.nature.com/articles/d41586-020-01056-7 How does COVID-19 kill? Uncertainty over whether it is the virus itself — or the response by a person’s immune system — that ultimately overwhelms a patient’s organs, is making it difficult for doctors to determine the best way to treat...
  24. R

    Message from Ron Davis

    @Janet Dafoe (Rose49) If possible, could you ask your husband if this treatment he is looking into is more of a "get over" treatment until the cause of ME is found or whether he thinks this has the "potential" for getting a significant part of our health back? Thanks!
  25. R

    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    Wow. Thanks for sharing that with us. He is an incredible person. On another note. I gave blood at the Stanford Genome lab today. There expecting to get the order at some point to close the lab. Everyone stay safe.
  26. R

    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    @Badpack He has a paper that is in revision and will be out soon. The next paper with the first identified factor will follow after that.