@blanketfort Nice to see another video about MECFS with alot of views. I've probably watched enough of them now to not watch this one but I will give it a like and comment to help with the youtube algorithm!
@Andie So true. Another condition that we are so bad at understanding, recognising and treating. It is awful how many people slip through the cracks. I am so glad you finally got there, and getting information like this out can help others.
A number of interesting things in the comments but I particularly want to highlight that this study only uses Fukuda criteria. I am inclined to entirely disregard any studies that do not require all participants to meet ICC criteria, at least in relation to myself, as I meet ICC criteria.
Great article, thank for sharing @dot . I am already overwhelmed by it all. It took nearly a year for my old gp to just fill out her section of the form and it wasn’t very comprehensively done. I’m fully expecting it to be rejected once I submit it. The whole process is just monumentally difficult it seems, which is ironic considering it’s supposed to help people with disabilities.
@lau_ea_aus these are great, thanks so much for setting them up. I’m torn between two groups (regional and MEEPs) and don’t think I can manage both, so joined regional. Hopefully I can be a part of the MEEPs group next time around 🙂
I couldn't believe the nerve of them to say that they didn't know if it was real when how many people GLOBALLY and so visibly are suffering from long covid???!
it's as though if 'science' can't 'solve' it, well it somehow does not exist?! FFS
seriously, I thought the drs and scientists in the world were supposed to be some of the smartest folks in society? Or at least we're being led to glorify science and medicine as though it is a god these day.
Thanks for sharing. Arghhhh this frustrates me so much. Because 99% of what he's saying is very reasonable... If applied to literally any illness other than ME/CFS.
Take the quote below.
Physiotherapists encourage people experiencing relentless post-viral fatigue to gently push at the limits of what they can do in terms of physical effort. They’ve found that if those limits are not tested, then the realm of the possible begins to shrink – horizons contract, muscles weaken and sufferers can become trapped in a cycle of effort followed by collapse. The effort required to provoke each collapse begins to dwindle.
"if those limits are not tested, then the realm of the possible begins to shrink" - this is the COMPLETE opposite of what happens in ME/CFS. But then the sentence that follows - "The effort required to provoke each collapse begins to dwindle" - is perfectly describing what happens if we test our limits.
Then there is this sentence: "the body does all it can to retain its energies, even going so far as to manipulate our sense of effort so that to take a short walk, or to climb a flight of stairs, is to risk exhaustion". Implying that the energy limit is perceived rather than actual.
People are going to read this and come to the conclusion that the only reason a sick person would refuse to "test their limits" is due to some kind of psychological block. This is so, so harmful.