The BBC has covered our study on medical power and #LongCovid. It’s a shame they didn’t name me and got my university name wrong, but nonetheless, good to see some MSM attention
www.bbc.com/news/article...
Substack post: How common is Ehlers Danlos syndrome? It's surprisingly hard to find out.
mecfs.substack.com/p/how-common...
New substack: 'How medical training promotes medical gaslighting'.
mecfs.substack.com/p/how-medica...
A confident doctor Headline: Doctor Very Confident He Is Right About You Story by Miles Tugo and Terry Dacktill Photo from Adobe
Doctor Very Confident He Is Right About You
Oh, I hadn't realized! Thanks for the link.
I ended up going with Harpal Clinic, they were nice but pricey. I live in Canada now, but if people ask me how to get LDN in the UK I don't want to point them to the more expensive option.
Does anyone in the UK know how to get LDN from Dickson Chemist's? I tried to figure this out years ago but I couldn't work it out. They're a chemist's, right? So you need to already have a prescription from a doctor, but there aren't any doctors who will give the prescription, so...? #pwME
New substack post: "This is endometriosis" is a stunning, award winning short documentary with resonances for people with ME.
mecfs.substack.com/p/this-is-en...
The documentary is here:
www.youtube.com/watch?v=1q-u...
"We measured tryptase once and it was normal, therefore no MCAS."
New substack post: "Freud's Hysteria, Part of the history of psychologizing physical illness".
mecfs.substack.com/p/freuds-hys...
Reminds me of that time in the 1980s the Canadian government tried to ban Jamaican patties because a 'patty' had to be made of beef!
Yup! Also how much money you have, and how much help and support.
Please share this around #MedSky. Far too many clinicians are still practicing like it's 2019.
#SciSky #StandUpForScience
I do assume that. The problem is, the people misdiagnosed with FND by doctors who used it as a wastebasket diagnosis also know what they're talking about. Both groups are right because FND has separate and conflicting meanings. Thanks for sharing the article, I'll have a look.
It was pointed out in the comments that it sounds like I'm saying to people with an FND diagnosis that their illness isn't real - that's not what I was aiming for, and I'm still thinking about what is the best way to talk about FND.
New post: Some people feel validated by an FND diagnosis; we should treat these people with respect, understanding and compassion (even if we think they're wrong)
mecfs.substack.com/p/some-peopl...
Thinking that *chronic fatigue syndrome* is *chronic fatigue* is like thinking that jelly fish are fish, or that wine gums contain wine, or that a cat burglar is a person who steals cats.
Clip 2 from Austrian TV report about Samuel
ME/CFS was largely ignored in Austria until Covid.
The hallmark symptom is that exertion can make the illness worse. Many doctors are completely unaware, even though patients have been saying this for decades.
#MECFS #LongCovid
A megaphone announcing "Coming Soon 2025–2026 UCSD ME/CFS Essay Contest Winners" Help Us Amplify These Student Voices. We are seeking Media Coverage. Please message or email (info@mecfsSanDiego.com) with any contacts.
Coming Soon: 2025–2026 UCSD ME/CFS Essay Contest Winners!
Help us amplify these student voices advancing care for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
We’re actively seeking media coverage.
Please DM us or email info@mecfssandiego.com
with any contacts.
Update on Savannah: They are now urgently seeking any UK doctors or hospitals willing to provide TPN and restart cyclizine. If no safe option is found, they are even considering treatment abroad.
If you have suggestions, please fill in the form
tally.so/r/81KxGO
New post exploring how sexism, bad science, and an inability to acknowledge uncertainty, can lead doctors to treat everything they don't understand (or prefer to ignore) as psychosomatic. Specifically: somatic symptom disorder (SSD).
mecfs.substack.com/p/somatic-sy...
@tessamunt.bsky.social did you speak to @ashleydaltonmp.bsky.social on this?
Savannah cannot wait for a new service. She has been without nutrition for 8 WEEKS in constant agony and is literally dying.
You MUST force the hospital to listen to her expert & restore pain meds and nutrition.
#mecfs
we need to talk about that Ring Super Bowl ad
"Ultimately, all disabled people risk confrontation because nobody can live up to the impossible stereotype required for being truly ‘deserving’."
Although I haven't read the whole thing and maybe there's something terrible hidden in this thing as well!
I feel like the vagus nerve inflammation thing is just a theory, whereas there are proven things like immune dysfunction, mitochondial dysfunction, HPA axis changes, which prove it's a serious disease even if we don't have the whole picture. Maybe this one pmc.ncbi.nlm.nih.gov/articles/PMC...
Had to check this wasn't one of those satirical newspapers, but apparently not!
I watched Jennifer Brea’s excellent documentary Unrest today and I highly recommend it for anyone interested in learning more about ME/CFS and the medical dismissal and gaslighting ME patients face
youtu.be/RLQNfsTih10
BREAKING: Another rapid response action! Indivisible Vancouver is leading a protest rally THIS FRIDAY January 30 against Jim Pattison, who is planning to sell one of his warehouses in Virginia to DHS/ICE to become a human processing facility. #boycottpattison #ice #iceraids #protest
I'm setting up a new account, @lighterkatiej.bsky.social, for the non-ME/CFS aspects of my life, mainly books & films I love and some politics. I'm unfollowing a bunch of people here but rest assured, I'm going to follow you on the new account!
