1. SWAlexander


    The Patient-Led Research Collaborative’s Patient-Led Research Fund announced $4.8 million in biomedical research awards today, funding 9 research projects in Long COVID, ME/CFS, dysautonomia, and associated conditions. This fund and awarded projects are distinctly meaningful for four major...
  2. frozenborderline

    Indigenous people of siberia tolerate tick borne infections better, have more resilience Interesting. Could validate environmental/dual factor theory of @Hip or it could be their microbiome or some epigenetic factor.
  3. frozenborderline

    [Indie Band] Belle and Sebastian Frontman: "Living with ME makes me feel like a non person " He's also an OMF ambassador. He's one of one of most prominent famous people with our illness. Albeit more mild than a lot of us bedridden folks. But apparently early on he...
  4. SWAlexander

    Autoantibody determination in chronic fatigue syndrome (CFS)

    This is a google auto translation: Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a common and severe multisystem disease. A defined cause could not be found so far. What is clear, however, is that dysregulation of the immune system, the hormone system, the...
  5. SWAlexander

    1934 Los Angeles atypical polio outbreak

    Thank you for pointing it out. Finally!!! I have been saying for years PPS is (part of) ME/CFS. I was laughed at by every doctor telling me "you have no medical credentials." But, I have had all related symptoms since the age of 5 y old. The 1934 Los Angeles County General Hospital epidemic...
  6. frozenborderline

    Long covid has forced a reckoning for one of medicines most neglected diseases An article by Ed Yong, about how long covid is forcing people to address the situation with me/cfs. I'm not sure he's right about that but it's worth a read and he is getting our...
  7. SWAlexander

    New study links 14 genes to ME/CFS

    A study has analysed existing genetic data in a new way to link 14 genes to ME/CFS and identify many patient subgroups. If the new approach pans out, it could transform ME research and turbocharge the development of treatments. Paper: Genetic Risk Factors for ME/CFS Identified Using...
  8. SWAlexander

    Researchers say they have found a link in the pathology between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

    Article: Researchers say they have found a link in the pathology between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Key points: Griffith University researchers say their findings could help to treat those suffering from long COVID A woman with chronic fatigue...
  9. frozenborderline

    NIH misallocating funds and moving slow on Long covid research
  10. frozenborderline

    Looking for podcast participants for my ME/CFS related podcast

    looking for podcast participants Potentially upsetting Looking for people to be interviewed on a podcast: The most interesting things I'd like to talk about ir type of guests : 1. People who have had some kind of experience with environmental factors in their illness People who have done some...
  11. gauche

    Diagnostic for reduced calcium in cells

    Hey folks, As we know, there's a lot of chatter about links between ME/CFS and long COVID. However, today I was surprised to read that a research team in QLD are looking into whether their ME/CFS diagnostic test (yes, diagnostic test) and treatment (double yes) will also work for long COVID...
  12. SWAlexander

    Eye movements may be key to chronic fatigue syndrome diagnosis

    25 March 2022 Oculomotor testing in the lab. A Monash Central Clinical School scientist has been awarded $180,000 over three years to develop a way to help diagnose myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Associate Professor Joanne...
  13. SWAlexander

    Chronic Fatigue Syndrome: The Need to Raise Awareness

    Excerpt: Most doctors and people with chronic fatigue syndrome don't know the name of this syndrome or anything else about it. The CDC estimates that 90% of people with ME/CFS aren't diagnosed by a health care professional. “Of all the people who completed the survey, only 46% had ever heard...
  14. frozenborderline

    An Open Letter to the Open Medicine Foundation, by Kaylin Jones Another person asking the OMF to look into mold or environmental toxins in ME/CFS. So far they haven't responded. But lets keep trying. If anyone else has experienced environmental...
  15. SWAlexander

    A new part of my ME/CFS diagnosis: "CYP3A4"

    Clinically important drug interactions potentially involving mechanism-based inhibition of cytochrome P450 3A4 and the role of therapeutic drug monitoring Abstract Cytochrome P450 (CYP) 3A4 is the most abundant enzyme of CYPs in the liver and gut that...
  16. frozenborderline

    What outlets do we have to publish pieces of art or writing about this illness and theology or spirituality, or just any art about it?

    What outlets besides our own blogs can we publish art specific for ME/CFS peolle or people with chronic illness? Omf rejected a poem I wrote for supposedly being too dark, it made me very sad and made me think I cant really connect with people in the me/cfs community. Bc this particular poem...
  17. SWAlexander

    Expertise in post-viral illness and ME/CFS

    Expert Virtual Care for Long COVID One in three people who have been ill with COVID develop long term health effects including disabling fatigue, cognitive and mood disorders, and many other symptoms. We can help. RTHM brought on post-viral illness & ME/CFS expert Jennifer M. Curtin MD from...
  18. SWAlexander

    New OMF funded paper: "Lessons From Heat Stroke for Understanding ME/CFS"

    On behalf of Open Medicine Foundation, I'm pleased to share that a new research publication, authored by myself and colleagues, has been published in Frontiers in Neurology: “Lessons From Heat Stroke for Understanding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.”...
  19. frozenborderline

    Polybio (small org founded by michael vanelzakker and amy proal) has announced first cci study in ME/CFS

    Here's the tweet announcement. I expect lots of discussing about this , its very exciting news , but I am concerned they are not using upright mri if I read btwn the lines. (Upright mris in 7Tesla dont exist I think, not even in 3 tesla) Anyway I will post my thoughts about this in a...
  20. SWAlexander

    Contradicting information about ME/CFS

    The more I read about ME/CFS, the more I´m confused. The Charite in Germany is making this statement: How to Make a Diagnosis of CFS There is currently no specific test for CFS in clinical diagnostics, so the diagnosis is made on the basis of clinical symptoms. CFS is also a so-called...
  21. frozenborderline

    Seeds of some ideas: art and movies that relates to ME/CFS
  22. 2

    Thiamine Deficiencies, SIBO and Polyneuropathy

    Hi everyone. Sorry this is long. I’m hoping someone who’s tried high dose thiamine might chime in. For my backstory, I’m 69 and have been disabled with ME/CFS for 35 years. The first 3 yrs I was bed-bound most of the time and gradually improved to about 70% over the first 10 yrs. But then...
  23. frozenborderline

    ME/CFS "theory of everything" Etiology This isnt the final form of the theory. I have three substantial parts to add, and it will become even more big and unwieldy. :) But I think that its substantial enough that I may as well put it out there for now. @Hip I referenced your dual factor...
  24. frozenborderline

    "helpless" an essay on severe ME/CFS, becoming an unwilling canary/seer/etc
  25. frozenborderline

    "Go west young man", a podcast interview with a guest who did mold avoidance to put his illness in remission

    Here's a new one, particularly long, in which I interview a friend I knew from school who got sick with similar issues simultaneously to me and ended up pursuing mold avoidance in new Mexico. We talk about his whole journey but at the end we get into his visions for using permaculture to...
  26. Z

    Is it realistic for a single parent to recover or improve?

    Hi - I am a single parent with three lively children and my own business. I have tried everything and have learnt to manage symptoms etc but have not made a breakthrough. It seems one of the main things needed for the body to recover from ME/CFS is to be in a 'healing state'. Even though most...
  27. frozenborderline

    My story of getting ill told in podcast form

    Listen to Origin Story Pt. 1 by Headless Youth Podcast on #SoundCloud
  28. Jody

    Article The Apologizers of the ME/CFS World

    The Apologizers of the ME/CFS World by Jody Smith I'm Canadian, so I hear a lot of good-natured jokes about how Canadians apologize all the time. It's funny in part because ... in part, it's true. But you know who else apologizes a lot? Chronically ill people. And that ain't so funny. Now...