1. 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...
  2. 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...
  3. 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...
  4. 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...
  5. 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...
  6. 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...
  7. 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...
  8. 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...
  9. 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.”...
  10. 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...
  11. 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...
  12. frozenborderline

    Seeds of some ideas: art and movies that relates to ME/CFS
  13. 2Cor.12:19

    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...
  14. 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...
  15. frozenborderline

    "helpless" an essay on severe ME/CFS, becoming an unwilling canary/seer/etc
  16. 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...
  17. 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...
  18. frozenborderline

    My story of getting ill told in podcast form

    Listen to Origin Story Pt. 1 by Headless Youth Podcast on #SoundCloud
  19. 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...
  20. Pyrrhus

    Second study might confirm neuroinflammation in ME subcortical brain

    Many of you will remember the landmark Japanese study from 2014 that used PET tracers to detect and image neuroinflammation in the brains of ME patients. Previously, no one had the technology to detect and image neuroinflammation in ME, as standard MRI's are totally unable to detect or image...
  21. frozenborderline

    Helpless (Essay i wrote from current place of pain and uncertainty)
  22. Pyrrhus

    Anti-inflammatories may reduce symptoms in the short-term, but may not in the long-term

    Over the years, we have seen multiple reports that strong anti-inflammatory treatment reduces ME symptoms in the short-term, but may worsen ME in the long-term. Most of this evidence has come from patient anecdotes regarding...
  23. 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.
  24. Jody

    Article May 12, 2020: It's Our International ME/CFS and FM Awareness Day!

    May 12, 2020: It's Our International ME/CFS and FM Awareness Day by Jody Smith On May 12, our International ME/CFS and FM Awareness Day, I tend to look back over the years since I was first flattened by ME/CFS. Things changed for the better for me when I found my community. I'd already lived...
  25. Jody

    Article A Look at COVID-19 Through the Eyes of ME/CFS

    A Look at COVID-19 Through the Eyes of ME/CFS by Jody Smith I have been self-isolating for over two weeks now. Not because of COVID-19. At least, not at first. Like many of you, I spend a great deal of time in my house because of ME/CFS. I was housebound due to a resurgence of ME/CFS symptoms...
  26. 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...
  27. Jody

    Article Looking Ahead to a New Year With ME/CFS

    Looking Ahead to a New Year With ME/CFS by Jody Smith Hey, it's the beginning of a new year. And 2020 has a nice fresh ring to it. This time of year are you thinking about the future? I'm not talking about New Year Resolutions. I ditched those years ago. Me, I have a hard time looking to...
  28. Jody

    Article Living With ME/CFS in the Holiday Season :Year After Year

    Living With ME/CFS in the Holiday Season: Year After Year by Jody Smith This year marks my twenty-eighth holiday season fractured by ME/CFS. Some years have been better, some worse. All of them have been thrown off kilter in one form or another for me and my family. My first Christmas...
  29. Jody

    Article On the Absence of Light and ME/CFS

    On the Absence of Light and ME/CFS by Jody Smith On my side of the world, change is brewing. Here in North America, the cold and dark brooding of winter looms and glowers. In some areas it has already hit, hard. Temperatures dropping, days shortening ... for someone like me who lives with...