“For many patients, the situation has deteriorated with the closure of long covid clinics and 51% of adults reporting they have been discharged from NHS services despite ongoing symptoms.” www.bmj.com/content/390/...

“My own experience of having a referral to a neuropsychologist declined and a neurologist tell me there was nothing they could do, despite profound cognitive dysfunction, underscores a systemic failure to tackle a mass-disabling event.” www.bmj.com/content/390/...

“…the way long covid, M.E., & other Infection-Associated Chronic Conditions (IACCs) are managed by health systems; patients with complex multi-system illnesses do not have a specialty that provides the holistic care they need and multi-disciplinary care does not exist.” www.bmj.com/content/390/...

“Investment in high-quality biomedical research is not optional; it is an economic and moral imperative, a point now belatedly acknowledged in the UK’s ME/CFS Delivery Plan” My Rapid response in the BMJ today www.bmj.com/content/390/...

Today is Severe ME day. Please take a moment to understand our reality. ❤️‍🩹

Healthcare not handcuffs: the NPCC must change guidance on pregnancy loss investigations to stop intrusive practices at times when people are at their most vulnerable and grieving. Agree? Join me and sign the petition now: you.38degrees.org.uk/petitions/ch...

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. - Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s

Scientists find link between genes and ME/chronic fatigue syndrome

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(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results: shorturl.at/pgsjk

Featuring helpful links and writing by @georgemonbiot.bsky.social @openmedf.bsky.social @batemanhornecenter.bsky.social @nicecomms.bsky.social @thereforme.bsky.social @actionforme.bsky.social and more

Update from Isla’s mother @swiftsandswallows.bsky.social , “We are very grateful for the overwhelming support from the ME community, it honestly means such a lot. For now though we need time to digest what's happened, to regroup and to catch up on sleep.”

What do these diseases have in common? Asthma Syphillis Multiple Sclerosis Myalgic Encephalomyelitis Ulcerative colitis High blood pressure Stomach ulcers Vaginal discharge Huntingtons chorea

Full 20 slide post here: www.instagram.com/p/DM2eVC9sYV...

Some helpful phrases to support your friend with chronic illness

What the ME delivery plan should have looked like - full post here: www.instagram.com/p/DMa8sjPMzd...

Yes yes yes - thank you @putrinolab.bsky.social @binitakane.bsky.social @sunny-rae1.bsky.social and all those who wrote, organised and signed this robust evidenced based response to the gaslighting outdated opinion piece in the @bmj.com www.bmj.com/content/389/...

NIH recently found 1 in 22 ppl who’d had Covid developed ME/CFS. The “mild” form of that disease, as @julialmv.bsky.social’s graph shows, means losing capacity to do 50% of your daily activities. What would you give up? Friends? Time w/your kids? Could you cut work hours in half w/o losing yr job?

@annadixonmp.bsky.social great to see you bluesky instead of X now - hope you can advocate for those in your constituency with ME and long covid this ME awareness week.

Anyone spot the obvious issue with this DWP form which is aimed at people who may have cognitive dysfunction amongst other things? Seriously, did no one read this before they put it out there for millions of people to use.

Taking care of yourself is productive and productivity is not the measure of success.

📣 It’s finally out out - initial guidance to address the spectrum of LC as a disease & reinforces the need for translational research & large-scale treatment trials for treatment protocols. 🌍 🫶🏼 🙏 to the 179 exerts who collaborated from 28 countries ann-clinmicrob.biomedcentral.com/articles/10....

An international study estimates that 1 in 20 of the human population has #LongCovid It's not Rare! And #COVIDisNotOver - So the numbers will grow... ann-clinmicrob.biomedcentral.com/articles/10....

In the Sunday mirror today in the UK. Thank you Jeremy for listening and telling my story in a sensitive way.

UK people, PLEASE add your name to this open letter asking the government not to cut disability payments action.versusarthritis.org/s/7956436/6b...

‘Dr Gilbert said he felt "ignored" by the last government and "abandoned" by the current one.’ #LongCovid #ME #Doctor @alexisme.bsky.social

Interview on bbc news today Full version with @binitakane.bsky.social is at 6.30pm on Look North BBC1 Yorkshire www.bbc.co.uk/programmes/b...

We need medical research funding for long covid and ME. We need NHS services that can manage symptoms and prescribe experimental medications. We need care, understanding and health professionals to be trained in ME. www.bbc.co.uk/news/article...

Hidden behind the small sentence of needing 4 points on PIP now means you could need assistance to be able to get in or out of a bath or shower and still not qualify as disabled enough for this gov to help you with the increased cost of being disabled.

Millions missing with long covid and ME

Daffodils

Nothing will kill more children than the ongoing decimation of CDC, NIH, and USAID work to lift vaccine uptake in the US and world. Child survival rose 75% in the last 50 years. Vaccines account for 40% of that. Measles vax alone was 60% of the benefit. www.thelancet.com/journals/lan...

This is a very important piece and I am very grateful to Ben and MEAction for the moral leadership here. Everyone in the IACC advocacy space should read this.

Really glad the @meassociation.bsky.social chair has stepped down after thousands called for his resignation. Shame no apology though. We need strong bold leadership in this space to transform ME care and research. Especially for those most severely affected and everyone with ME and long COVID.

@AshleyDalton_MP @wesstreeting I hope you can take a moment to read this. I was a Consultant in Pubic health leading the response to outbreaks to protect the public. Now I am bedbound with ME. Please pleas please can you devote just 0.06% of the NHS budget to ME to give me a chance of recovery.

@AshleyDalton_MP @wesstreeting I hope you can take a moment to read this. I was a Consultant in Pubic health leading the response to outbreaks to protect the public. Now I am bedbound with ME. Please pleas please can you devote just 0.06% of the NHS budget to ME to give me a chance of recovery.

Enough said. stoptrump.org.uk/petition-can...

Signed ❤️‍🩹

Please take action to support Line. (She also has a new book coming out very soon!)