cfs

  1. 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...
  2. 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
  3. 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...
  4. 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...
  5. 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...
  6. Apollonia

    Dr Michael Fitzpatrick fights back

    https://archive.is/S4COu
  7. 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...
  8. frozenborderline

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

    https://openletteropenmedicinefound...ical-toxicity-sheds-light-on-me-cfs-epidemic/
  9. 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...
  10. 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...
  11. 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...
  12. 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/
  13. 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...
  14. 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...
  15. Nasaud

    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...
  16. 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...
  17. 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.
  18. Pyrrhus

    B12: a simple 5-second poll for everyone

    This is a simple 5-second poll for anyone who has ever tried a B12 supplement in any form. Many thanks to everyone who responds! Please feel free to share your experience in more detail in a post.
  19. Pyrrhus

    Quotes from the unusual life of Dr. Byron Hyde

    I thought I would start a thread to collect quotes from the life of Dr. Byron Hyde, who has had a front-row seat to some of the most important events that have occurred in the field of ME/CFS: On the Akureyri outbreak: On the Royal Free outbreak: On McEvedy and Beard's paper calling the...
  20. gbells

    Poll for SEIDs patients who had nagalase testing

    Answer this poll only if you had nagalase testing and did not have cancer at that time.
  21. gbells

    NIH Lead investigator promotes 'mental illness' theory of CFS

    NIH lead clinical investigator thinks CFS and fibro are somatoform https://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/ #MEAction via @meactnet
  22. A

    Sudden onset of leg and tooth pain - advice needed

    Hey Guys and girls Ive had cfs/Me for the past 13 years. It started with EBV and my symptoms have been pretty constant the past decade. Namely lots of fatigue - needing to lay down most the day / finding it hard to sit up for too long, head pressure, POTS, achiness.... 6 weeks ago I got sore...
  23. Pyrrhus

    NYT Article on Empress Masako

    For anyone interested in the new Empress Masako of Japan, who reportedly suffers from ME, there was a New York Times article that entirely neglected her health problems: https://www.nytimes.com/2019/04/29/world/asia/japan-emperor-women.html?action=click&module=News&pgtype=Homepage All it says...
  24. Pyrrhus

    CDC finally admits: Enterovirus D68 causes paralysis

    After spending decades carefully avoiding the use of the word “cause” in relation to enteroviruses, the CDC has now conceded for the first time that Enterovirus D68 causes paralysis. https://www.cdc.gov/mmwr/volumes/68/wr/mm6815a4.htm?s_cid=mm6815a4_w
  25. Pyrrhus

    Viral Extracellular Vesicles known as ‘Stealth Spheres’

    Given the recent interest in exosomes, I thought I might share some research on extracellular vesicles that the media have, somewhat sensationally, dubbed “Stealth Spheres”: References: (Chen et al., 2015)...
  26. O

    Anyone's symptoms get worse after doing anything stress related?

    I want to here from people who experience PEM and what the resulting symptoms are from PEM.