Claire
clairabelle.bsky.social
Claire
@clairabelle.bsky.social
Mostly a lurker as I have pretty severe cognitive dysfunction these days, please be nice if I do post. ME/CFS, disability and chronic illness. Used to be a bioscientist. PhD. She/They
Reposted by Claire
Thread 🧵:

Post Exertional Malaise (PEM) is:

👉Post - Can start a few hours after to up to a few days after and last anywhere from hours to months.
👉Exertional - Exertion can be physical, mental, or sensory.
👉Malaise - Intense exhaustion, body aches, inflammation, head pain, etc.
August 12, 2025 at 2:55 PM
Reposted by Claire
TL;DR

The genes found to be associated with #MECFS in the DecodeME study are associated with:

✨autoimmune conditions
✨innate immune response
✨response to viral infection
✨mitochondrial disorders
✨neurological disease
✨inborn errors of metabolism
✨pain/nocioception
✨cellular integrity/autophagy✨
August 7, 2025 at 3:49 PM
Reposted by Claire
Thank you to some amazing colleagues who took time and precious energy to craft this rapid response to the recent @bmj_latest piece. When people try to hijack #LongCOVID, #MECFS and other complex illness as psychosomatic it is important we strike back: www.bmj.com/content/389/... 1/
Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions.
www.bmj.com
May 21, 2025 at 11:07 AM
Reposted by Claire
Just because 99/100 scientists agree that it's bad to open a portal to the hell dimension doesn't mean we should immediately discount the opposing views of the scientist employed by Open A Portal To The Hell Dimension Inc.
April 28, 2025 at 3:53 PM
Reposted by Claire
To everyone in the LC/ME/CFS community in the UK, I want you to know that I realise how devastating today's Green Paper on welfare will have been for you. And I swear I will keep fighting for you, every single day.
March 18, 2025 at 8:47 PM
Reposted by Claire
1) Good to see an article by Retraction Watch on the problematic Cochrane review on exercise therapy for ME/CFS.
January 24, 2025 at 8:21 AM
Reposted by Claire
Hilda Bastian’s open letter to Cochrane, written on behalf of the Independent Advisory Group, highlights major concerns about Cochrane’s handling of #MECFS reviews. It’s the first step in a series of planned actions. hbprojecttalk.wordpress.com/2025/01/24/i...
January 24, 2025 at 7:10 AM
Reposted by Claire
I never thought a day would come when I would write a post this critical about the Cochrane Collaboration. But today was that day:

absolutelymaybe.plos.org/2025/01/24/w...

#mecfs
When Journal, Scientific Society, and Community Values Clash - Absolutely Maybe
A process I’ve been involved with at a journal recently exploded. It was meant to resolve a controversy about a publication, not…
absolutelymaybe.plos.org
January 24, 2025 at 5:17 AM
Reposted by Claire
Just in from mammoth interview session to two bits of news. One that a DV perp got locked up because of something I did and that a vulnerable constituent had a a massive wrongful debt written off after our intervention. This is why I came to politics, this is why I'll just keep cracking on.
January 7, 2025 at 7:17 PM
Reposted by Claire
Pretty much every other email I get from the Telegraph is about how to avoid tax more effectively.
We laud people like, say, Martin Lewis for helping us get what we are entitled to, but scorn the disabled and unwell for doing the same.
December 1, 2024 at 9:44 AM
Reposted by Claire
Picture this:

“The sound of traffic & a uniform sea of barley have been replaced by the most beautiful meadows, full of wildflowers, young saplings and the buzz of bees.”

In this successful #rewilding project, bumblebee populations were restored 116 times over!

www.scotsman.com/hays-way/bum...
Bumblebee population increases 116 times over in 'remarkable' Scotland project
‘The sound of traffic and a uniform sea of barley have been replaced by the most beautiful meadows, full of wildflowers, young saplings and the buzz of bees’
www.scotsman.com
November 29, 2024 at 3:29 PM
Reposted by Claire
Wisdom's still alive, she's back at her breeding grounds! This season she'll turn at least 74 years old. 🎉🎊💃
November 28, 2024 at 5:49 AM
Reposted by Claire
Visiting my parents and my mom asked me if I wanted to go see a rock garden. She said “this guy built stuff out of pebbles”
y’all I was not prepared
November 28, 2024 at 7:06 AM
Reposted by Claire
Orcas have started wearing dead salmon as hats again, just fyi
www.iflscience.com/wearing-a-sa...
Wearing A Salmon On Your Head Is Back In Fashion For Orcas, After A 37-Year Break
In 1987, there was a strange trend amongst killer whales. Recent sightings show it's back in fashion.
www.iflscience.com
November 27, 2024 at 3:50 PM
Reposted by Claire
A simple click to follow all the good people and organisations i recommend in my book
All now on @bluesky

Thanks @stefsimanowitz.bsky.social 💙💙💙
go.bsky.app/BKXnrpi
November 22, 2024 at 2:27 PM
Reposted by Claire
Fascinated by people who can't understand the basic concept of an ongoing pandemic.

I, like millions of other extremely high risk Americans around you, are extremely extremely high risk and medically vulnerable. MASK UP and stop drinking up right wing covid denialism.
November 22, 2024 at 8:18 AM
Reposted by Claire
Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane.
1/
November 20, 2024 at 11:27 AM
Reposted by Claire
The #SciComm starter pack is almost full. Make sure to revisit it as l’ve added lots of folk this week.

Do share it and flag up if you’d like added.

go.bsky.app/VJQzace
November 19, 2024 at 11:35 AM
“The silent story for most of us is that we “decided to get better” but couldn’t; started doing a little more each day but had a relapse; tried yet another treatment and found it wanting; and then, having lost everything, built the best life we could from the ruins.”
The Trouble With Recovery Stories
Recovery stories have been popular in the media lately.  Most prominent has been actress and comedian Miranda Hart (a past supporter of this blog), sharing her experience of living with ME and…
alifehidden.com
November 13, 2024 at 11:37 AM