Claire

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

241 followers1.3K following10 posts

Claire reposted

I realise I'm just a freak, but living in a multicultural city is the best thing of all time, it's just the best possible human experience and i can not understand why anyone on earth would be like "weve got to destroy this"

Claire reposted

Replying to @exceedhergrasp1.bsky.social

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✨

Claire reposted

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.

Claire reposted

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.

Claire reposted

1) Good to see an article by Retraction Watch on the problematic Cochrane review on exercise therapy for ME/CFS.

Claire reposted

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...

hbprojecttalk.wordpress.comIndependent Advisory Group Open Letter to CochraneToday, the Independent Advisory Group (IAG) sent the letter below to the Chair of the Cochrane Collaboration’s Governing Board, as well as members of the Governing Board, the Executive Leader…
Adam@abrokenbattery.bsky.social

New in-depth blog by Hilda Bastian, a Cochrane founder, on being severely let down by Cochrane. They 'exploded' the process for a new review on exercise for #MECFS and refused to remove an outdated, harmful one or add a note advising against its use. absolutelymaybe.plos.org/2025/01/24/w...

Claire reposted

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.

Claire reposted

Pretty much every other email I get from the Telegraph is about how to avoid tax more effectively.

martinbarrow.bsky.social@martinbarrow.bsky.social

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.

Claire reposted

Wisdom's still alive, she's back at her breeding grounds! This season she'll turn at least 74 years old. 🎉🎊💃

Johan Lind@johanlind.bsky.social

Oh, yes, at this time of the year we're all waiting for Wisdom to return to her breeding grounds, the Midway atoll. Fingers crossed. Two things. Last year, she returned early December. And, apparently, 73 year old Wisdom got a new boyfriend in 2023. friendsofmidway.org/wisdom-a-lay...

Claire reposted

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.

Claire reposted

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/

“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.”

alifehidden.comThe Trouble With Recovery StoriesRecovery 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…

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