Brian Fog
@useless_priest
ME, when triggered by SARS-CoV-2, is a subset of Long COVID | LC Apr 2022 | #MECFS #PostVac ally | 🏳️🌈 | 🇮🇪 | No miners
Everything is on the patient. Everything. Finding out how the illness works. Finding out you need to pace (despite what you're told). Deciding how to much risk to take with infection. Finding out how to mitigate infection. Deciding how much risk to take with treatment.
Why do these symptoms never invoke severity in their minds? Not even the potential for it? Is it because severe OI doesn’t exist if the patients can’t get to the clinic?
Saw a new GP and explained my symptoms (debilitating fatigue, brain fog, orthostatic intolerance etc.) and how my goal is to find a way of getting back to work. His response was 'So what's stopping you from working?' I just looked at him and repeated my symptoms word for word.
I can't stress enough how convenient it is to many people in my life that I was an introvert before I got sick.
I'm an introvert & someone who spent more time alone doing things that mattered to me than the average bear, & it's clear a subset of people in my life think this . . . unrelenting imprisonment (& pain & loss & insecurity) is somehow preferable to me. Useful, willful ignorance.
I can barely bring myself any more to click into the study and see how they defined LC and especially ME.
Jackson Laboratory: 'Gut microbiome may predict “invisible” chronic fatigue syndrome and long COVID' “Our study achieved 90% accuracy in distinguishing individuals with chronic fatigue syndrome, which is significant..." said study author Derya Unutmaz jax.org/news-and-insig…
If circumstances conspire to allow me to lie down continuously until around 1-2pm, it's wild how much more stable my symptoms remain for the rest of the day. And consequently what I'm able to do.
Zooming out of a life with mild/moderate ME - it's having this downgraded, shitty, super-isolated version of other people's (and your own former) life - and you get this vibe like people think it's just your decision to live like this. Like it's a personality quirk.
The BMJ @bmj_latest has not published a rapid resopnse from Maeve Boothby O'Neill's mum, Sarah, to its ME/CFS "hope" propaganda piece from members of the biopsychosocial ideological brigades. So I have posted it here: virology.ws/2025/07/23/tri…
Did anyone find that knowing your V02 max heartrate threshold was helpful for pacing? This would require a 1-day CPET.
As noted here, the two day CPET would allow you to confirm what has been observed previously in ME patients. Even one test, max or even submax should give you a good estimate of your aerobic threshold including the HR at which that sits and pacing efforts should stay below that
Erlangen, Germany, 30 patients. A single infusion of rovunaptabin significantly improved fatigue and quality of life in Post-COVID syndrome patients with GPCR autoantibodies, without major safety concerns. thelancet.com/journals/eclin…
Doctors are to be given training in better ways to diagnose and treat people with ME - as part of a long delayed action plan that's finally been published. The debilitating condition with a range of symptoms including severe exhaustion and constant pain, affects around 400,000…
Someone drafted this in 20 minutes and there were two weeks' worth of meetings to decide whether JRE would be on or off.
Introducing TIME's list of the best podcasts of all time: 100 podcasts that shaped the genre and pushed it forward ti.me/451XhfW
If your reaction to someone who masks every day expressing their honest feeling that they find it exhausting (but will continue to do it) is to get mad and shout at them and say "I don't find it hard at all" you need to take a breath and examine yourself tbh.
My friend, Savannah, a 23yo woman with severe ME/CFS, is currently in a London hospital being denied the care she needs after being told to seek psychiatric help instead. Please help - sign the petition. change.org/SaveSavannah @MEAssociation @MEActNet @WorldMEAlliance
Always find it interesting, when people are discussing a given person with ME or ME-style LC, who says they have ME and who says they have LC (and how this contrasts with what the person themselves would say they have).