• 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. K

    Faulty DNA disposal system causes inflammation Feb 8, 2024

    https://www.sciencedaily.com/releases/2024/02/240208121733.htm, Feb 8, 2024Scientists discovered a pathway from mitochondrial DNA replication stress to immune system activation and inflammation, finding that endosomes responsible for disposing of dysfunctional mitochondrial DNA were leaking...
  2. K

    Published Feb 6, 2024 An effective long term lupus treatment?

    https://www.sciencedaily.com/releases/2024/02/240206151411.htm ...at the Centre for Inflammatory Disease Monash University, are confident the new method can be developed for up to 100 other autoimmune diseases such as diabetes, rheumatoid arthritis, multiple sclerosis, Sjögren's syndrome...
  3. K

    Gulf War Illness significantly reduces white blood cells' ability to make energy Nov 1, 2023

    https://www.sciencedaily.com/releases/2023/11/231101180623.htm Gulf War Illness (GWI), which affects approximately 250,000 U.S. veterans, has been found to significantly reduce the ability of white blood cells to make energy and creates a measurable biochemical difference in veterans who have...
  4. K

    Something exciting is coming in November

    My guess is that it is a funding proposition from the Government. That is about the only thing that could be kept secret easily.
  5. K

    New research offers clues to what causes long COVID — fuelling hope for eventual treatments Oct 21 2023 CBC

    https://www.cbc.ca/news/health/new-research-offers-clues-to-what-causes-long-covid-fuelling-hope-for-eventual-treatments-1.7002046
  6. K

    Researchers find a cause of Parkinson's disease October 2, 2023

    https://www.sciencedaily.com/releases/2023/10/231002124357.htm "A significant breakthrough sheds light on the underlying mechanisms of Parkinson's disease, offering the potential for innovative treatments in the future... For the first time, we can show that mitochondria, the vital energy...
  7. K

    Considering tonsillectomy for potential recovery from EBV induced CFS. Would greatly appreciate advice.

    Dietrich Klinghardt MD PhD recommends this procedure to many of his patients.
  8. K

    Does Parkinson's starts in the gut August 22, 2023

    https://www.sciencedaily.com/releases/2023/08/230822151748.htm Who knows? Maybe me cfs could have a similar process happening too.
  9. K

    Prusty talks about his upcoming research on a podcast

    The trials are taking place at 32 locations in the US only and the vaccine is for people who already have EBV. They started recruiting in April.
  10. K

    Prusty talks about his upcoming research on a podcast

    Carmen Scheibenbogen's last twitter post says Martin Kräter @KraterMartin · Apr 24 It's a pleasure and an honour to announce that @GuckLab and @rivercyte have successfully established deformability cytometry @C_Scheibenbogen Lab @ChariteBerlin and at Uta Behrends Lab...
  11. K

    Prusty talks about his upcoming research on a podcast

    Wonder how easy it is to get the c1q blood test.
  12. K

    Prusty talks about his upcoming research on a podcast

    I hope BC007 is not what they are talking about. I heard from someone I consider a reliable source that it will not work, will be a big money maker and at least not cause harm.
  13. K

    Prusty talks about his upcoming research on a podcast

    A reddit document (not sure if allowed to repost it here) says This treatment actually already exists for ME/CFS and patients have been successfully treated with it without a scientific explanation What treatment could he be talking about?
  14. K

    Letters to your government or representative

    I just wrote a letter to my government asking why people with me/cfs are not included in the trials with people with long covid. It got me thinking. I used to include stats on the numbers of people suffering with the disease in the country. I do believe that they get it now. They know there is...
  15. K

    Firstnasal monoclonal antibody treatment for COVID-19 published March 8, 2023

    https://www.sciencedaily.com/releases/2023/03/230308084337.htm "Next, we are going to look at studying the use of Foralumab in long COVID, larger studies of multiple sclerosis, and other diseases such as Alzheimer's disease." Also published today...
  16. K

    Extremely Severe and debilitating Muscle tightness

    She took a number of different antibiotics to clear up the lyme and co infections. It helps to see a knowledgeable doctor who is specialized in clearing these from the body starting with the most predominant infection first. Based on your main symptoms the doctors know which infection to treat...
  17. K

    Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients (Glass et al, 2023)

    twitter Maureen Hanson @DrMaureenHanson Despite a small sample size, our pilot study on the urine metabolome turned out to be much more interesting than we expected. ME/CFS subjects lack a large number of significant changes in the metabolome that occur in controls in response to exercise.
  18. K

    Is prof. Carmen Scheibenbogen still seeing patients?

    I read somewhere she said she was so busy she did not even have time to walk her dog. They said she is 60 years old. I fear she could be close to retirement age as are so many of our best researchers who have gained so much knowledge.
  19. K

    how a brain molecule could halt MS Feb 1, 2023

    https://www.sciencedaily.com/releases/2023/02/230201134234.htm A researcher is one step closer to demonstrating the potential of a brain molecule called fractalkine to halt and even reverse the effects of multiple sclerosis and other neurodegenerative diseases. Researchers injected fractalkine...
  20. K

    Long COVID, major findings, mechanisms and recommendations, January 13, 2023

    https://www.nature.com/articles/s41579-022-00846-2 It refers to the current situation for treatments for me/cfs in the Diagnostic tools and treatments section.
  21. K

    Itaconate Shunt (now called INFa-Itaconate shunt) Part 2!

    So many many thanks to Robert Phair!
  22. K

    Specific immune response to Epstein-Barr virus discovered January 19, 2023

    https://www.sciencedaily.com/releases/2023/01/230119112807.htm Medical science has not yet been able to explain why the Epstein-Barr virus triggers infectious mononucleosis (IM) in some people with initial infections and not in others. But now, a research team has identified a specific immune...
  23. K

    Biologics for me cfs

    Is there a specific transfer factor you had in mind Shanti1?
  24. K

    Biologics for me cfs

    I think biologics are powerful drugs that reduce inflammation related to autoimmune disease. Some of the drugs although producing very good results have side effects.
  25. K

    Biologics for me cfs

    It has been mentioned that biologics might be a treatment for some me cfs patients. I wonder if any researchers have approached some of the best hospitals treating or researching rheumatology / autoimmune diseases to get an idea of whether they feel some patients who also have me cfs could have...
  26. K

    The good news: cause of muscle weakness ME/CFS discovered

    not sure but i think they said the adrenergic receptor was not functioning to remove the excess sodium.
  27. K

    CAR-T cell therapy leads to remission in severe lupus Dec 9, 2022

    Wonder if there will ever be a day when this therapy could help me/cfs? I heard they were thinking of trying it on rheumatoid arthritis and ms. too. https://www.healio.com/news/rheumatology/20221208/huge-surprise-cart-cell-therapy-leads-to-remission-in-severe-lupus
  28. K

    Molecular Diagnosis /Alain Moreau

    not sure if this was posted last month
  29. K

    Celine Dion - Stiff Person Syndrome

    if there is some truth in some autoimmune disease having me/cfs she could have variations of that too. eg fatigue body reactions to anxiety, gut issues etc