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

    To become a member, simply click the Register button at the top right.

mecfs

  1. JasonPerth

    MECFS & CIRS

    Does anyone with experience in the condition CIRS able to assist ? I personally hate illnesses that have the “95% diagnosis and success treatment rate” that is always told to you as a disclaimer. I believe- If you have MECFS, and do CIRS diagnostic tests, you will likely be positive. This is...
  2. JasonPerth

    The moderator of Reddit r/cfsme & r/mecfs pushes CBT and brain retraining and GET and bans you if you say something about it.

    Stay away from r/cfsme & r/mecfs It's full of misinformation & harmful treatments. (Like brain retraining)(CBT) The moderator deletes all comments negative about his/her beliefs so you will only find positive one sided opinions. This is what brain retraining pages do. Remove anything negative...
  3. JasonPerth

    QEEG - Brain Function Scan

    Hi- just wondering if anyone with MECFS has done a QEEG brain function scan and following treatments? (Image attached) There is a clinic near me that mentions healing Pain/ Fibromyalgia- with some links to CFS Can Trans-Cranial Direct Current Stimulation really change the brain to remove pain...
  4. P

    What happened to covid? and the research into long covid... 2023 feels different

    Doesn't 2023 feel wholly different with respect to covid? While the country was obsessed with this virus for almost 3 years, especially that first year with lockdowns and 24/7 news coverage, etc, 2023 just has a very different feel. On some days I even forget about it. Offices are calling us...
  5. SWAlexander

    Researchers refine experimental gene therapy for herpes

    Christoph Ströck: "if #mecfs is a chronic nervous system infection by one or more of the Herpes viruses, AAV gene therapy might be our best chance." My question would be, is it affordable? Two years after scientists showed that an experimental gene therapy for herpes can knock out most latent...
  6. C

    Anthony Komaroff research presentation (video) for MassME 2022 annual meeting

  7. C

    Genetic and epigenetic regulation of Catechol-O-methyltransferase in relation to inflammation in chronic fatigue syndrome and F... (Polli et al, 2022)

    Genetic and epigenetic regulation of Catechol-O-methyltransferase in relation to inflammation in chronic fatigue syndrome and Fibromyalgia Abstract Background Catechol-O-methyltransferase (COMT) has been shown to influence clinical pain, descending modulation, and exercise-induced symptom...
  8. C

    Orthostatic Intolerance in Long-Haul COVID after SARS-CoV-2: A Case-Control Comparison with Post-EBV and Insidious… (van Campen & Visser, 2022)

    Orthostatic Intolerance in Long-Haul COVID after SARS-CoV-2: A Case-Control Comparison with Post-EBV and Insidious-Onset Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients Abstract Background: As complaints of long-haul COVID patients are similar to those of ME/CFS patients and as...
    • Consul
    • Thread
    • ebstein barr virus frans visser linda van campen long covid long haul covid mecfs orthostatic intolerance visser
    • Replies: 1
    • Forum: Long COVID and Coronavirus
  9. A

    Benzodiazepines and Pregnancy

    This is my first post here (save for the introduction one). Apologies in advance, if I am asking in the wrong forum. I’d love to hear your experiences about being pregnant with ME and while on Benzodiazepines. I am also interested in your experience of withdrawing Benzodiazepines while...
  10. C

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and fibromyalgia are indistinguishable by their cerebrospinal fluid prote… (Schutzer et al, 2022)

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and fibromyalgia are indistinguishable by their cerebrospinal fluid proteomes Abstract Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and fibromyalgia have overlapping neurologic symptoms particularly disabling fatigue. This has...
    • Consul
    • Thread
    • benjamin natelson bergquist csf fibromyalgia mecfs natelson proteome schutzer
    • Replies: 8
    • Forum: Latest ME/CFS Research
  11. SWAlexander

    Striking Drop in Stress Hormone Predicts Long Covid in Study

    Cortisol could be used with other biomarkers for diagnosis Research identifies three potential causes of chronic symptoms Striking decreases in the stress hormone cortisol were the strongest predictor for who develops long Covid in new research that identified several potential drivers of the...
  12. SWAlexander

    Minnesota MECFS

    Just an announcement. No details yet. Minnesota's Mayo Clinic Internal Medicine doctor Stephanie Grach, MD, MS, @StephanieGrach is doing a clinical rotation at the Bateman Horne Center! Very exciting to have a new doctor taking focus on #MECFS! Especially for us Minnesotans. CC: @MinnesotaMECFS
  13. frozenborderline

    Website about koroshetz, need help

    Hi all I'm working on a website about Walter koroshetz, Sort of continued off the #notenough4ME campaign from a couple years back that focused on koroshetz failure to do the right thing for ME/CFS funding at the NIH I need help with web design and even writing copy I already have the domain...