youtube.com/shorts/WbIjg... Love this guy he should've been recruited by labour as an advisor. He has already said in the past he doesn't want to go into politics sadly, he would be an amazing prime minister let alone a chancellor. I'm sure that Zack would have him advise the green party.

‘A deficit of scientific understanding at government level for which expert advice could not make up’. I enjoy this description on what went wrong during COVID in today’s guardian editorial (although not the implications, obviously). www.theguardian.com/commentisfre...

www.meresearch.org.uk/german-500-m... #pwME #MEcfs

www.meresearch.org.uk/new-call-for... #pwME #MEcfs

www.youtube.com/live/5BP5Fi9... 1st Day of the 2 is live now & you can rewind it. Unsure if the live is available to all while live, I preregistered.

The conference aims to raise awareness and understanding among healthcare professionals, researchers, policy makers, patients and advocates about ME/CFS, long Covid and other post-viral illnesses. 📆 When? 12-13 November 2025 📍 Where? Online

📢 The International Conference on Clinical and Scientific Advances on ME and Long Covid is taking place in Porto, Portugal next week and you can register to attend online for free!

Would you like to send or receive a card from another person with ME this Christmas? 🎄 Or do you know someone severely affected by ME who would appreciate a card? Join our Christmas Angels project! 😇

Momentum is growing for our Making the invisible visible campaign on 8th November 2025, to mark World Ventil8 Day - why not join us? Visit the campaign website to learn more and register 👉 bit.ly/mtiv25 #MTIV25 #MTIV #SaferAirProject #IndoorAirQuality #MTIVNews

Tag your friends to help get the message out! @greensagainstcovid.bsky.social 💚 ✅ We demand #CleanAir to stop the spread of airborne infectious diseases & protect schoolkids, workers & vulnerable friends & family from #Covid & #LongCovid

We are delighted to welcome @catsmithmp.bsky.social as our newest Parliamentary Champion! We would like to thank Cat and we look forward to working with her. Read more here: www.actionforme.org.uk/cat-smith-mp...

2/2 We are currently working to rearrange the session to ensure that the evidence session still goes ahead and will share further news on this once a new date has been secured. An update from the APPG's Chair, @joplatt.bsky.social MP, is attached. #MyalgicE #MyalgicEncephalomyelitis

More on DecodeME and our partnership with the University of Edinburgh 👇 www.actionforme.org.uk/research-cam... #MyalgicE #MyalgicEncephalomyelitis #MEAwareness

People with disabilities have been victimised by successive governments for a long time. Reform has threatened more cuts for this. How do you propose to support people with disabilities?What can you say to encourage them to support the Green Party?

Labour cancelled 13 million covid vaccines to clinically vulnerable. This week 188 people have died from COVID. I feel nothing has been learnt. It’s made a mockery out of the COVID inquiry. We now need another inquiry to investigate this governments mishandling.

🎉 I’ll be appearing live on #TheLastLeg tomorrow night. 10pm on Channel 4. 🎤 Reply below or text The Last Leg on 07956 175 908 with any questions you’d like me to answer on the show!

The internet cut out ending the Space early — new Space link is here! Ella Eastin and Isabel Burnett are sharing their stories as dysautonomia patients and how that spurred their professional medical paths x.com/renegaderes/...

💜 It’s #PoTSAwarenessDay 2025 #Covid uncovered what many already knew — #PoTS changes everything. Many with #LongCovid are now being diagnosed with #PoTS — causing dizziness, brain fog, racing heart, fatigue + more. 💬 Have you been diagnosed after Long Covid?

On NBA star Kristaps Porziņģis who has been diagnosed with #POTS #MEcfs #LongCovid mas.to/@brianvastag...

Francie Fitzgerald speaks on the experience of living with #hypermobileEhlersDanlossyndrome (hEDS) and #POTS for the past 13 years; highlighting the diagnostic odyssey and the arduous process of finding effective treatments. youtu.be/Qa-dfd2Nl2k?...

Today is POTS Awareness Day. We’re raising visibility for POTS and orthostatic intolerance (OI), common in ME/CFS and Long COVID. Look back at this month’s posts & next week for more. #POTSAwarenessDay #POTS #MECFS #LongCOVID #OI

A - I agree with the chronology you set out. "by the beginning of February we are more aware of, a potential impact of, Long Covid on children" Technical Advisory Report February 2021 #Wales #LongCovidKids #LongCovid

The regime wants you to focus on their accounts & narrative, by engaging directly with them you are following their lead. They need the attention you give their trolling / posts to distract you from their actions. Block them and double down on their actions, the Epstein files, and crimes. #3E

From the OMF-Supported Medical Education Resource Center (MERC) at Bateman Horne Center: Orthostatic intolerance & #POTS are common in #MECFS & #LongCOVID. Learn signs + management tips: ow.ly/iz3b50Xb2QJ #POTSAwarenessMonth #UnitedForME @batemanhornecenter.bsky.social

“Had the UK followed the same strategy and achieved the same excess cumulative death rate by March 2024 as South Korea, 69 instead of 344 deaths per 100,000, it might have prevented up to 180,000 UK deaths.” bmjgroup.com/failure-to-f...

I did it. I added some Keystone Cops music to this:

Luv to #MEcfs peeps in USA youtube.com/shorts/Y0qVG...

Nigel Farage has got to go.

I told you so. www.theguardian.com/world/2025/a...

6) The link to the Solve ME/CFS webinar from 2019 and more info about the project can be found here: solvecfs.org/researc... www.youtube.com/watc...

1) Regarding genetics and ME/CFS: there is another team that uses a complementary but different approach to DecodeME. The group of Dr. Elizabeth Worthey uses whole genome sequencing to detect rare DNA variants in patients with ME/CFS.

The #DecodeME study is terrific - a milestone in biomedical science. But headlines like “ME is real” are not good journalism. ME was already scientifically established by the mid-1990s. And clinical evidence has supported its reality since the 1950s. So why do we get these headlines? #pwME 1/3

Sean forgets not one medic supported the allegation. Social workers do have the answers. They are the Care Act (2014); the Equality Act (2010); the Mental Capacity Act (2005) and the Human Rights Act (1998). These provide the legislative framework for the protection of adult #pwME. #JusticeForME

This is really good

Yes&until then we muddle through life while scientists do more work like @jackamatica.bsky.social & @putrinolab.bsky.social @batemanhornecenter.bsky.social @openmedf.bsky.social &advocates like @mefoggydog.bsky.social question and report DWP & DHSC I will live as long as possible to see JUSTICE

The complicity of those involved in a sick system designed to blame not only patients but their parents too. When will it end? Much L💙Ve to Sarah & we say her name: Maeve Boothby O’Neill 🪔🕯️💙✨💙 #SevereME #Blame #Justice #SystemicFailure #MyalgicEncephalomyelitis

it will end when 1) the govt admits fault & apologises 2) the PACE trial gets retracted 3) BACME & SMC dissolve 4) Wessely & co get fired and then prosecuted 5) There's actual investments into research & care commensurate with disease burden 6) MANDATORY re-education of health and care professionals

4/ DecodeME genome study preprint has now (August 8) been posted to a preprint server where anyone can add comments: www.medrxiv.org/content/10.1... #MEcfs #CFS #PwME

I have the best labmates; they come to work wearing my microscopy image! 😁 We are pro-mask, anti-brain damage, and airborne educated! If you like it, you can get the same t-shirt here: www.bonfire.com/pandemic-isnt-over/ Proceeds go to longcovidfamilies.org #LongCovid #covidisnotover

Donation links to support the researchers behind #DecodeME Links: www.actionforme.org.uk/research-cam... www.actionforme.org.uk/sequenceme-f... www.actionforme.org.uk/research-cam... donate.ed.ac.uk/support/ME-C... Screenshot from latest Science for ME weekly update #PwME #MEcfs #CFS

"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.” - Prof Chris Ponting (DecodeME Investigator). We encourage researchers to explore and build on our findings. Apply for access to our rich dataset now shorturl.at/F8aOM

🧸 A drug for celiac disease was found safe and effective in treating a post-COVID syndrome in children 💊 Researchers found that SARS-CoV-2 and influenza can awaken metastatic breast cancer cells in lungs 🏡 An at-home clinical trial program This week's #LongCOVID research: bit.ly/46I9xVz

Be careful out there folks! We've had a chill spring and early summer relatively speaking, but there is a COVID spike in the US now. 🧪 www.theguardian.com/world/2025/a...

yep! IEMs are particularly KNOWN for being 'activated' by viral infection, something I neglected to mention.

Very useful thread with some initial ideas on the range of things that the genes the @decodemestudy.bsky.social study identified can be responsible for. #MEcfs

EBV is a very common trigger for #MECFS but the association here may be just that-- likely many viral infections kick off OLMF4 expression. Just interesting, especially given that the Decode ME study found that the effect size in this gene was larger for ME/CFS folks who reported infectious onset.

✨OLFM4 (cnt'd)✨ One study showed a complex relationship between EBV infection, OLFM4 & gastric cancer. OLFM4 was induced by EBV infection! OLFM4 is a target gene of the cGAS-STING pathway, and EBV infection activates that pathway, increasing OLFM4 expression. 🧪 🧵 www.nature.com/articles/s41...