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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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  1. S

    Successful treatment of ME/CFS using hydrogen gas: four case reports. 2024

    I'm really skeptical when researchers can't even get the definition of ME/CFS right. These symptoms would not result in someone meeting the ICC criteria. Perhaps the researchers had issues writing this in English, but it's time to get over talking about ME/CFS as being "neuropsychiatric"...
  2. S

    Has anyone gotten over CFS and intolerance to light and sound

    I'm not sure POTS can be "cured", but for most people it can be controlled through prescription medications. If she hasn't already, your daughter should see a good neurologist with expertise in autoimmune diseases. It took 5 years of experimenting with different combinations of drugs and...
  3. S

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

  4. S

    Dr David Marks: The Rise and Fall of the Psychosomatic Approach to Medically Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue Synd

    When my daughter got sick 5 years ago, pyscho-babble (CBT, etc.) was not only alive and well, but being practiced by major medical institutions throughout the world. We should be happy that we've come so far :)
  5. S

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

    Correct me if I'm wrong, but my reading of this is simply that increased muscle sodium content is yet another comorbidity associated with ME/CFS, and the researchers were just speculating as to what might be causing the increased muscle sodium content: I don't mean to criticize, I just don't...
  6. S

    Journal of Clinical Medicine Special Issue “Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Diagnosis and Treatment” (2022)

    FYI - @Consul's citation is just to the Editorial. It would appear from the footnotes to the Editorial that all of the papers are from 2021 and earlier.
  7. S

    The occurrence of hyperactivated platelets and fibrinaloid microclots in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    I'm reminded of Ron Davis' conclusions that there's something in the blood. Not only is this objective evidence of ME/CFS, but it offers possibilities for treatment.
  8. S

    The occurrence of hyperactivated platelets and fibrinaloid microclots in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    My daughter has been on Heparin for a little over a month and has seen definite improvement. Not massive, but it appears to have raised her baseline.
  9. S

    New Systrom Study: PPAR Delta for ME/CFS

    Thank you #mitoMAN for posting this. However, when I see company-sponsored research showing great results, I don't just take it with a grain of salt -- I grab the whole salt shaker.
  10. S

    Drug treatment comparison hhv6 [Study] Jan 31st 2022

    Jose Montoya, M.D. used a similar protocol, apparently with some success on ME/CFS patients. Unfortunately, my daughter was not one of his success stories, perhaps because she most likely didn't have a viral onset.
  11. S

    Bad link in Disability Resources

    Under "ME/CFS Handbooks " in https://forums.phoenixrising.me/threads/disability-resources.28/
  12. S

    Bad link in Disability Resources

    The link for How to Apply for Social Security Disability Benefits If You Have Chronic Fatigue Syndrome (CFS/CFIDS) in Disability Resources by @Cort Johnson is now https://www.massmecfs.org/images/pdf/handbook/Disability_Handbook.pdf Perhaps someone with administrative privileges can fix it.
  13. S

    Patient perceptions of infectious illnesses preceding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    I have to agree with Wishful on this. I'm surprised that 40% of their patient group reported no infectious illness before onset. When my daughter was diagnosed, we spent a lot of time racking our brains for anything she had had that could have been a virus. I can't cite anything off the top...
  14. S

    Science: Great research summaries available from ME associations!

    https://meassociation.org.uk/wp-content/uploads/ME-Association-Index-Published-MECFS-Research.pdf appears to be a bad link. Should it be https://meassociation.org.uk/wp-content/uploads/ME-Association-Index-Published-MECFS-Research-.pdf ?
  15. S

    Delineating the Association Between Soluble CD26 and Autoantibodies Against G-Protein Coupled Receptors, Immunological..., Scheibenbogen 2021)

    "We observed correlations of sCD26 concentrations with blood pressure in patients with infection-triggered onset, which, however, did not remain after BY-correction. Remarkably, in patients with non-infection-triggered onset the inverse correlation of sCD26 with heart rate upon orthostatic...
  16. S

    Cardiopulmonary responses to exercise in an individual with ME/CFS during long-term treatment with intravenous saline: A case study (Davenport 2020)

    I'm not saying it might not help some patients. My daughter tried it, and it had no effect. My point is simply that if her doctor wrote a paper based solely on her experience, the conclusion would have been that it was completely ineffective. With a disease as mysterious as ME/CFS, individual...
  17. S

    Cardiopulmonary responses to exercise in an individual with ME/CFS during long-term treatment with intravenous saline: A case study (Davenport 2020)

    Before anyone reads anything into this, the sample size was one patient!
  18. S

    Circulating levels of GDF15 in patients with myalgic encephalomyelitis/chronic fatigue syndrome. (Melvin et al 2019)

    The authors believe GDF15 may be a biomarker, but not a contributing factor for ME/CFS. However, given the number of elite athletes who get CFS, I was struck by the statement, "Secondly, it has also been shown that GDF15 increases following physical activity." They go on to say, "The receptor...
  19. S

    Naltrexone, NK cells and the calcium ion channel research

    The reasearch may be good, but I'm a bit leery when they mischaracterize the symptoms of ME/CFS.
  20. S

    Dr Grubbs team ‘Strongly Suggests’ Autoimmunity in Dysautonomia

    Thank you very much for the suggestion. She is currently seeing David Kaufman, and we feel pretty confident that he is on top of things.
  21. S

    Dr Grubbs team ‘Strongly Suggests’ Autoimmunity in Dysautonomia

    Thanks. Those are on the list. Her doc is currently building a case so the insurance will pay for the IVIG :thumbsup:
  22. S

    Dr Grubbs team ‘Strongly Suggests’ Autoimmunity in Dysautonomia

    Sorry for my ignorant response to your original question. Please tell me more about how you were treated for autoimmunity. I don't think she's been offered that option yet.
  23. S

    Dr Grubbs team ‘Strongly Suggests’ Autoimmunity in Dysautonomia

    She was mildly positive for anti AT1R and anti ETAR. She's taking Fludrocortisone, Pyridostigmine, Propranolol, Midodrine and Potassium Chloride for her POTS. Last week, increased dosages finally got her heart rate increase down to 40 in a lean test.
  24. S

    Dr Grubbs team ‘Strongly Suggests’ Autoimmunity in Dysautonomia

    Yes, those were Cell Trends results.
  25. S

    Dr Grubbs team ‘Strongly Suggests’ Autoimmunity in Dysautonomia

    My daughter's anti alpha-1-adrenergic antibodies are almost 16 (with greater than 7.0 being positive).
  26. S

    Chang-Gue Son: Differential diagnosis between “chronic fatigue” and “chronic fatigue syndrome”

    This appears to be a distinction drawn in other countries. See An open-label study of effects of acupuncture on chronic fatigue syndrome and idiopathic chronic fatigue: study protocol for a randomized controlled trial
  27. S

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    I apologize. I knew that, and she said that. I just used too brief of a short hand for my summary, because she started out talking about what it was like when she was caring for Whitney. She is an amazing lady, as are you.
  28. S

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    Not to take anything away from all of the great presenters, but I'm assuming if you're on this forum, you know a fair amount about ME/CFS. Therefore, if you want to skip to the research parts of the presentation, here's my outline of the video: Intro 0:00 - 14:15 (Optional) Ron Davis...
  29. S

    Autonomic Nervous System Functioning Related to Nocturnal Sleep in Patients With Chronic Fatigue Syn

    My daughter has been on pyridostigmine three times a day for her POTS for almost two years. She doesn't take it at night, but taking it throughout the day hasn't helped her sleep any better.
  30. S

    Question regarding RBC Deformability

    "We observed from various measures of deformability that the RBCs isolated from ME/CFS patients were significantly stiffer than those from healthy controls." Red blood cell deformability is diminished in patients with Chronic Fatigue Syndrome In response to the original question, "In this...