#ME #PEM @meassociation.org.uk @longcovidsupport.bsky.social #Justice4ME @ashleydaltonmp.bsky.social @decodemestudy.bsky.social @thelancet.com @nhsengland.bsky.social @georgemonbiot.bsky.social @profstevegriffin.bsky.social @davidjoffe64.bsky.social

Here's my plea to the government, media and everyone else to stop treating NHS administrators as a problem to be eliminated, rather than the glue which holds the whole organisation together.

Q&A on the Photography & Collaboration Arts Collective (PCAC) blog with photographer Jeremy Jeffs @jeremy-jeffs.bsky.social, diagnosed with ME in 1987, discussing his powerful project photographing people living with the illness. www.pcac.ngo/blog/jeremy-...

Here's my argument with Sir Bernard Jenkin MP about the report showing how the racist intimidation of Black and Brown NHS workers on home visits has been exacerbated by the far right's wall of flags.

From Daniel Missailidis, PhD @danielmissailidis.bsky.social (Victoria, Australia) People with ME/CFS, Long Covid, and healthy volunteers sought drive.google.com/drive/folder... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid

ME Research UK is delighted to announce that we have awarded funding to Prof. Bhupesh Prusty at Riga Stradins University in Latvia for a project investigating the role of autoimmunity in ME/CFS. bit.ly/prusty070 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

📢 Exciting news! Today, we are proud to launch the Overlapping Illness Alliance, a coalition of charities working to improve recognition, care and support for those living with complex, overlapping conditions.

#ME #PEM #FanningTheFlames @meassociation.org.uk @longcovidsupport.bsky.social #Justice4ME #Plan4ME @ashleydaltonmp.bsky.social @decodemestudy.bsky.social @thelancet.com @georgemonbiot.bsky.social @profstevegriffin.bsky.social @davidjoffe64.bsky.social @drjoepajak.bsky.social

This accidentally turned into a short thread. Bit of a rage-thread I'm afraid. Please read to the end if you can. Thanks

#ME #PEM #FanningTheFlames @meassociation.org.uk @longcovidsupport.bsky.social #Justice4ME #Plan4ME @ashleydaltonmp.bsky.social @decodemestudy.bsky.social @thelancet.com @georgemonbiot.bsky.social @profstevegriffin.bsky.social @davidjoffe64.bsky.social @drjoepajak.bsky.social

. @actionforme.bsky.social Webinar: Final findings from the LOCOME Research Project on Monday 24 November at 3pm (UK time) www.actionforme.org.uk/webinar-fina... us02web.zoom.us/webinar/regi... Screenshot from Science for ME weekly update #LongCovid #MEcfs #CFS #PwME @precisionlife.bsky.social

Also it’s not FDA approved and therefore many doctors aren’t aware of it.

This is a scorching article on the absolute state of The New York Times, and much of the rest of the media. Not just the billionaire media, note, but also the billionaire-*compliant* media, which both-sides every issue with purchased junktank talking points. lithub.com/maybe-dont-t...

What’s worse than fascist henchmen roaming the streets? Fascist henchmen with tech roaming the streets.

The recently launched Overlapping Illness Alliance is heading to Parliament! On Tuesday 25 November, we’re hosting our first-ever drop-in session at the Houses of Parliament to talk with MPs about overlapping illnesses and how they can better support their constituents.

Podcast: "Improving quality of life - managing P.E.M. and moving towards stability with O.T. Amy Mooney" madevisible.podbean.com/e/23-activit... I haven't listened myself so far but have been impressed by previous comments by Amy. #MEcfs #LongCovid #PostExertionalMalaise

Relatively detailed article on new art exhibition on long Covid. www.westword.com/arts-culture... Includes some examples from the exhibition #LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome

Thanks for flagging it @drfionac.bsky.social. For those interested, Berkeley's crowdfunding campaign for Trial By Error has reached 98% of the goal, with 500+ donations and one day remaining. crowdfund.berkeley.edu/project/47768

Berkeley's crowdfunding campaign for Trial By Error, which investigates problematic psycho-behavioral research involving ME, ME/CFS, Long COVID, etc., has reached 98% of the goal, with one day remaining: crowdfund.berkeley.edu/project/47768

Interested in ME/CFS research? Want to do a PhD with @aryback.bsky.social, @avakhamseh.bsky.social, @sjoerdvbeentjes.bsky.social & @cgatist.bsky.social? Then apply for a *funded* Future Medicine PhD Fellowship. See: www.findaphd.com/phds/project... Please contact us to discuss before applying.

Thanks Rachael, glad to hear it’s useful. Sorry to hear you’re ill as well.

Thanks for the reminder Adam, just donated. Also, thanks for all of your hard work on your YT channel, it's been really helpful since being diagnosed.

🧠 Daily Feed of Brain Damage 🧠 Your anxiety isn't psychosomatic🤬 @atranscendedman.bsky.social 🙏🏻 www.sciencedirect.com/science/arti...

Had to look twice to realise it’s the Onion. If this was real it wouldn’t actually be a surprise

They’ve only included the costs of hospitalisation and deaths. They’ve done no modelling of long term effects, JCVI is blind to Long Covid or other sequelae. So it’s tuned to cost benefit ratio but only if you don’t include all of the actual costs

Sorry, it’s in the other reply. I should’ve put them in the same post.

This clip from 2018 perfectly captures just how passionate @davetuller1.bsky.social is and how shocked he was by the way the PACE trial was defended. His crowd funding has just 1 day to go and he’s ~$10k from his target. I’ve just donated again so he can carry on doing his important work

Link to David’s Crowd funding campaign crowdfund.berkeley.edu/project/47768

A collaboration for progress makes me so happy! One voice sharing overlapping challenges to improve lives - what's not to love! #OIA #OverlappingIllnesses #JoinedUpAction

Making sense of Sensemaking... The new edition of The Visual Thinker is out - for those that like to make sense of things... bryanmmathers.com?mailpoet_rou...

If you're a member of the National Trust remember to vote for council members by midnight tonight. Use the Quick Vote option. Entryist pressure group Reform Trust is trying to seize control. Stop them Voting is quick and easy if your membership card is at hand secure.cesvotes.com/V3-3-0/nt25/...

‘Guidance from the NHS emphasises that your symptoms could worsen if you've been under stress or if you're more physically active. It adds that people battling long-Covid should "not start exercising again before talking to a GP or specialist"’ www.dailyrecord.co.uk/lifestyle/he...

🫂 #pwME become supremely patient - at everything.

One week to go. Apart from Aine and myself and the 15 people who have marked themselves interested in the Facebook event, two people have contacted me directly to say they hope to attend. #PwME #MEcfs #CFS

It’s still there apparently. Honestly #Citroen it’s not that difficult to locate an EV. I’d just like to know mine isNT being used for joyriding by the Heathrow Meet &Greet team that I paid a fortune to. Any ideas where it ACTUALLY IS?

#Disability #Wheechair #Motability #DisabledTravel #Citroen #CrapApp #NotFunny #EnoughIsEnough #DontBuyBerlingoEV #NotFitForPurpose

Nice to get a mention alongside David Tuller @davetuller1.bsky.social in the latest Chronic Living Therapy @chronicliving123.bsky.social e-newsletter chroniclivingtherapy.com/5-elsewhere-... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @lammasleaves.bsky.social

#Disability #Wheechair #Motability #DisabledTravel #Citroen #CrapApp #NotFunny #EnoughIsEnough #DontBuyBerlingoEV #NotFitForPurpose

If you thought the perils of travelling whilst disabled was just staircases+ignorant gits, welcome to the #Citroen Berlingo EV experience - where they appear to have achieved light-speed travel and dumped my car in the sea. Just the latest in a l-o-n-g series of dire events caused by their #CrapApp

And look, I get that rushing this is far from ideal. But being completely unprotected from the rise of authoritarianism? That's even less ideal.

Thank you Ireland 🇮🇪

Additional information: Repeated COVID infections and Long C-19 are associated with significant tooth loss. Oral dysbiosis increases multiple comorbidities.... Go QLD 🦷❌🦷❌

Farage: epic grifter

Government: oh no the NHS winter pressures Also the government: let's not bother protecting healthcare staff from #COVID or #longCOVID Government: oh no, worse winter pressures due to staff sickness and increased transmission to patients in care settings 🤷‍♀️

Current NHS England policy restricts free COVID-19 vaccination to certain age groups and risk categories. Yet age alone should not determine access to protection. Anyone whose health professionals recommend vaccination should surely be eligible? open.substack.com/pub/joepajak...

This is madness - how can they justify yearly flu vaccination for all staff (and seriously encourage staff to have it with various deals) but then ignore the other infection that is hitting staff on regular basis? I hoped this madness would change with new government - sadly it has not.