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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. RYO

    Brain functional connectivity in people with ME/CFS

    A larger study replicating these results is needed. This study begs the question - what is causing brain connectivity issues? Herpes virus reactivation? HERVs? Glial inflammation? Immune cells that crossed BBB during initial viral infection? Are excitatory or inhibitory neurons affected?
  2. RYO

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    I wish we had IL-6 in CSF data from a larger study looking at moderate to severe patients.
  3. RYO

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    It seems both ME and LC patients have issues with tryptophan metabolism. Both also have dysbiosis and other common symptoms. Dr Maureen Hansen suspects a significant portion of ME patients may have chronic EV in their gut. LC patients may have persistent SARS COV2 antigens in their gut. Maybe...
  4. RYO

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    @Murph Are you able to look at supplemental data from NIH study and determine if they measured IL-6 levels in serum and/or CSF before and after exercise? If yes, any difference in IL-6 levels in CSF between ME and healthy controls?
  5. RYO

    Any further research on the Migraine/M.E connection?

    It seems severe MECFS patients share same intolerance to light and sound as ME patients. Migraines are thought to related to levels of catecholamines in the brain. I am curious to see if any ME patient has tried new CGRP antagonists and found some improvement in PEM symptoms?
  6. RYO

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    Can anyone clarify? It seems Nath found increased expression of PD1 in T cells of CSF. In previous studies from Dr Mark Davis and Maureen Hansen did they not find evidence of T cell exhaustion from peripheral blood draws? Any significance of this disparity?
  7. RYO

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    The concepts of central fatigue and interoception are interesting theories but not established bedrock science. This study was conducted for deep phenotyping. It is an over reach by authors to draw conclusions from the data. It should have been presented as theories to consider. It was also...
  8. RYO

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    I agree with the comment about streisand effect. There are plenty of meaningful data from this study. Not sure concept of effort preference relative to MECFS patients will stand up well over time. The immune dysregulation findings and possibility of persistent antigen are very important. I...
  9. RYO

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    I think we need studies to show effects of exercise on blood brain barrier of pwMECFS. https://pubmed.ncbi.nlm.nih.gov/30678702/
  10. RYO

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    Also by not performing 2 day CPET, you greatly underestimate/underreport the physiologic and autonomic effects of PEM.
  11. RYO

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    Not surprising when you Google the term “effort preference” it shows paper written by psychology researchers. Why would NIH use this language? From ncbi.nlm.nih.gov
  12. RYO

    Covid infection

    @Hip Thanks for the link. I think it’s pretty difficult to avoid infection given drop of public masking and increased transmissibility of new variants. Even home bound patients are at risk from their family and care givers despite best precautions. It’s hard to live in a bubble. But I hope...
  13. RYO

    Covid infection

    Just curious how many in the MECFS community have had the misfortune of getting Covid infection. What has been your reaction? How did it affect your MECFS symptoms and your overall functional status? Did you use Paxlovid and did it help you?
  14. RYO

    Any Dr. Systrom patients here? - Mestinon (Pyridostigmine bromide) and safety profile

    I have taken pyridostigmine for over 2 years. I slowly titrated my dose over 2-4 weeks. I currently take 60 mg three times daily with meals and 1/2 tablet at bedtime. Slow release pyridostigmine is cost prohibitive. Through trial and error I received the most benefit from taking DHEA 10 mg in...
  15. RYO

    Lumbar sympathetic blocks

    My large arteries and arterioles are all normal. Similar to what long covid patients describe, I have a pain and temperature sense dysregulation. After a hot shower I often experience a lacy skin rash over my legs. Sometimes my feet either look white or flushed after getting out of bed...
  16. RYO

    Lumbar sympathetic blocks

    Has anyone ever had or considered a lumbar sympathetic chain block to treat their chronic leg pains?
  17. RYO

    Selective translocator protein (TSPO) agonists

    I recently came across the article discussing how benzodiazepines may lead to cognitive impairment. My interpretation is that neuro-inflammation may be mediated by over active microglia in MECFS after viral insult. Some patients benefit with benzodiazepines because they reduce effect of...
  18. RYO

    BC-007: Successful drug against Autoantibodies helps with long COVID

    Does anyone know if any US commercial labs offer autoantibody testing? Berlin cures website states they are no longer accepting blood tests. • AT1-Receptor-Autoantibody • MAS-Receptor-Autoantibody • ß2-Receptor-Autoantibody • M2-Receptor-Autoantibody • Alpha-1-Receptor-Autoantibody •...
  19. RYO

    Looking for noise canceling headphones

    Try Soundcore Q35 made by Anker. They are comfortable and noise canceling is good. Also affordable.
  20. RYO

    Dr. Bruce Patterson mentions me/cfs

    I recently queried whether there are any clinical trials by Dr Bruce Patterson for long covid on clinicaltrials.gov and I did not see any studies listed. Does anyone have any additional information?
  21. RYO

    Loneliness ...how do u cope

    My favorite classical music compilation https://tidal.com/album/174413024 Soothing sleep music
  22. RYO

    Loneliness ...how do u cope

    I find classical music very helpful when I am not in PEM/crash. I have trained myself near bedtime to listen to soothing relaxing sleep music. It helps me help me fall asleep quicker. I wish there was a therapy dog service for disabled people who can not take care of a dog or cat.
  23. RYO

    What is happening in the body re pain ?

    I’ve had terrible leg pains since start of my illness in 2012. Honestly, no one knows the cause. Always worse after activity (PEM) and also worse when fighting infection. Interferon amplifies the pain. I’m not sure it’s neuropathic. No way to tell if it’s lactic acid build up. Acupuncture...
  24. RYO

    Mitochondrial transplant

    Research by Maureen Hanson and NIH intramural study does suggest decrease in mitochondrial function after exercise challenge in their patient cohort. The purpose of my post was to promote/brainstorm potential treatment ideas.
  25. RYO

    Mitochondrial transplant

    Could mitochondrial transplantation be a potential treatment for MECFS patients? Are mitochondria damaged during acute severe viral infection? https://pubmed.ncbi.nlm.nih.gov/34035362/
  26. RYO

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

    Has anyone heard whether Dr Nath’s group is close to publishing their findings in detail? I thought their goal was for the fall of 2021?
  27. RYO

    The Enterovirus Theory of Disease Etiology in ME/CFS: A Critical Review (O'Neal and Hanson, 2021)

    Does anyone know whether the antiviral made by Pfizer (Paxlovid) for Covid infection may have efficacy against enteroviruses?
  28. RYO

    The Enterovirus Theory of Disease Etiology in ME/CFS: A Critical Review (O'Neal and Hanson, 2021)

    As I rewatched the webinar “Advances in our understanding of MECFS and the effects long COVID”, I found Maureen Hanson’s presentation about changes in the microbiome very interesting. She mentions that other disease states such as inflammatory bowel disease, HIV infection, non alcoholic fatty...
  29. RYO

    Exercise Intolerance: Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS (Joseph et al., 2021)

    Glad to see that Dr Systrom’s research published. His work is gratifying because it utilizes existing methods of studying potential physiological abnormalities in MECFS patients. Over 1500 patients subjected themselves to invasive CPET. The study participants should be commended because a...
  30. RYO

    Dr. John Chia talks about chronic enterovirus infection in ME/CFS - Interview by Amy Proal

    I wish we could convince the NIH or other study groups (Dr. Lipkin) to perform stomach biopsies on MECFS cohort and test for latent viral infections in the gut.