• 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.

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cfs

  1. S

    cereset has anyone tried?

    has anyone tried cereset therapy?
  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. Bladean

    Colchicine side effects or herx reaction

    I have mild cfs, for 15 years now. Past lyme, Candida or latent EBV (i have high EBV igg, arround 200), may be the probable causes. I also test positive for genetic test HLA-5. (but I dont have any Beçet symptoms) I just started colchicine 0,5mg daily, I feel less fatigued these days but my...
  4. Markthehatter

    Chiari Malformation support

    Hi all, I hope this finds you as well as you can be. This is a long post so for those that don't have the energy or want to read a long post, I will get to the main points first. I have been suffering with significant long covid since March 2022 (symptoms below) and have been predominantly...
  5. M

    Hypoglycemia and ME

    What do we know about ME and Hypoglycemia? Does ME cause Hypoglycemia (low blood sugar)? Does ME crashes immediately drop blood sugar even lower? Do many people have Hypoglycemia and they think it's ME, because the doctors haven't looked at Hypoglycemia and the symptoms are the same in many...
  6. SWAlexander

    Persistent endothelial dysfunction in post-COVID-19 syndrome and its associations with symptom severity and chronic inflammation

    This is a very long paper. The most important part: Excerpt: Discussion: PCS patients with CFS exhibited a more severely impaired retinal microvascular integrity in our cohort. Even though this association was weaker after controlling for confounders, this aligns with recent findings...
  7. gbells

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

    The CFS community has a big problem. National Institutes of Health is the major funding body for medical research in the United States. They only fund $15 million per year (frozen) for research on HHV-6 and $9 million per year for research on CFS. The problem is that researcher Bhupesh Prusty...
  8. SWAlexander

    CFS and the CDC's Failure to Respond: Primetime Live (1996)

    Does anybody besides me remember this?
  9. gbells

    HSV-6 EBV superinfection theory for SEID CFS

    First I'd like to say that I'm extremely frustrated at the lack of progress being made in discovering the pathogenesis and effective treatments for SEID (CFS) and now long covid. In my own case, I have a good history of what triggered it. First I contracted EBV then during the convalescent...
  10. R

    Anemia of unknown origin

    Hello I have anemia (Hb 8) Size of red blood cells is reduced, they are small Iron is at 158 Ferritin is at 506 B12 at 857 Holo TC at 85 I take all other b vitamins I also take copper, molybdenum, zinc and even nickel What other nutritional deficiency could cause Anemia? I was thinking of ultra...
  11. linusbert

    chronic carbon monoxide poisoning and symptoms a thing?

    i wonder if this is a thing. since a few days i am suffering from the smell of car exhaust gases smells. and i dont think its from the street despite living on a big high trafficed road. i instead suspect the heating to be not working good and clean - its heating time in germany and this house...
  12. SWAlexander

    1974 Chronic Fatigue Syndrome

    Nothing has changed since. Excerpt: By 1987, Kaiser had been to 212 different experts. Her eyesight was fading and she was having a dozen minor seizures every day. She often lacked the strength to stand up. Her concentration and memory had so deteriorated that she couldn't get through a TV...
  13. SWAlexander

    The Draft Report by the Institute for Quality and Efficiency in Healthcare Does Not Provide Any Evidence That Graded Exercise Therapy and Cognitive Be

    Abstract The German Institute for Quality and Efficiency in Healthcare (IQWiG) recently published its draft report to the government about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The IQWiG concluded that graded exercise therapy (GET) and cognitive behavioral therapy (CBT)...
  14. SWAlexander

    Study from 1999 (‼️) showed an association b/t hypercoagulable states in ME/CFS & FM.

    Chronic fatigue syndrome and/or fibromyalgia as a variation of antiphospholipid antibody syndrome: an explanatory model and approach to laboratory diagnosis https://pubmed.ncbi.nlm.nih.gov/10695770/ Elevated fibrinogen & blood viscosity were most common in this population vs normal levels in...
  15. frozenborderline

    Headless youth podcast Origin Story Part III--my experiences with CCI diagnosis, the history of Lake Tahoe and Environmental illness

    Listen to Origin Story Pt. 3 by Headless Youth Podcast on #SoundCloud https://soundcloud.app.goo.gl/pHvgT
  16. frozenborderline

    An essay about consumerism and spirituality : Suburban Bardos

    I wrote this before I was really far into me/cfs but it deals with emptiness , issues with faith, and depression that are relevant to many people's lives. I am proud of the writing, and think the photography is excellent... I know I should be humble, but I'm humble when it is accurate, like...
  17. I

    Link between POTS, MCAS and CFS - Innate inflammation in response to an antigen..t-cell exhaustion's role?

    31:00 onwards Dr Grubb explains which autoantibodies are found in POTS and suggests they are driven firstly by the innate immune system, including mast cell mediators and other cytokines, which then triggers the adaptive immune system to make autoantibodies . He argues it can't be coincidence...
  18. I

    IVIG UK

    Hi, does anyone know if there is anywhere in the UK that offers IVIG privately? I'm looking to try it out as a POTS treatment which seems to be autoimmune in my case. It seems it is only offered on the NHS for immune deficiency and, whilst I know i'm immune deficient (low white blood cells and...
  19. Apollonia

    Dr Michael Fitzpatrick fights back

    https://archive.is/S4COu
  20. EddieB

    Licorice root?

    I stumbled across this write up, it’s probably old news. But is there any truth to this? exert from article... There is one area, however, that does merit a closer look. And that, believe it or not, is the use of licorice in the treatment of chronic fatigue syndrome (CFS). This is a baffling...
  21. frozenborderline

    A new discovery about ecological toxicity sheds light on the ME/CFS epidemic

    https://openletteropenmedicinefound...ical-toxicity-sheds-light-on-me-cfs-epidemic/
  22. gbells

    Someone Just Won Disability for ME at the ALJ hearing 2021

    Someone who asked me for help recently forwarded me their notice of favorable decision for SSD for ME from an ALJ hearing. He was previously rejected at the earlier stages based on biased SSA but persisted, continued to strengthen his case with a full neuropsychology exam and two day exercise...
  23. H

    93% of CFS patients tested positive for mold/mycotoxins?!

    So this study has already been posted in the Research section of PR, but the thread has sort of died as it started back in 2013. I am reposting here because it's directly related to mould and mycotoxins and feel it's a useful area of discussion in this area of the site. Here is the link And...
  24. gbells

    Autoimmunity-Related Risk Variants in PTPN22 and CTLA4 Are Associated With ME/CFS With Infectious Onset

    I found some information on genetic mutations that trigger ME when people are exposed to chronic viruses. Previously I shared an article about MTHFR mutations that also do this by impairing folate availability to provide ubiquinol. In this case the proteins made trigger hyper-responsiveness in...
  25. gbells

    MTHFR Gene Defect Survey of ME patients

    Survey on MTHFR gene mutations for ME patients. https://genesight.com/articles/is-there-a-difference-between-l-methylfolate-and-folic-acid-supplementation-for-patients-with-the-mthfr-c677t-mutation/
  26. Muon

    Is POTS a central nervous system disorder? (Blitshteyn, 2021)

    Is postural orthostatic tachycardia syndrome (POTS) a central nervous system disorder? (Blitshteyn, 2021) Same thread on Dinet forum Abstract Postural orthostatic tachycardia syndrome (POTS), a disorder of the autonomic nervous system characterized by a rise in heart rate of at least 30 bpm...
  27. P

    Creatine pinworms anal itching

    This is probably a first of its kind question. I was taking creatine regularly for last few weeks. I used to take one scoop of the small scoop it comes with. Its probably just 5 grams. It was very helpful for my energy levels. I was cycling for 60 - 90 minutes everyday and also studying. It was...
  28. CristianSerious

    European/USA Telemedicine Doctors/Clinics familiar with peptides?

    Hi, I am interested in using peptides but want a doctor involved. Looking for a doctor in Europe/USA(telemedicine is fine) to figure out what peptides might help I can buy them myself no problem to get my hands on any kind of compound I live in Romania, Europe. I have a mild AAI with no...
  29. W

    Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

    Piggybacking off https://www.mechanicalbasis.org/ + https://forums.phoenixrising.me/threads/have-you-ruled-out-chiari-or-craniocervical-instability-cci-as-a-cause-of-your-cfs.56908/#post-945253 , a story of a man that suffered CFS alongside POTS...I'm inspired to sort out my body, especially...
  30. gbells

    For Age 25+ w/ history of Chicken Pox and ME. Fever poll.

    Please answer this poll only if you are age 25 or older and have a history of chicken pox infection and chronic Myalgic Encephalomyelitis. Please indicate in text if you have lower body temperature in general as well.