@paulaknight.bsky.social is completely bed bound. Slowly, she creates digital images that she sells as cards, stickers, clothing & phone cases on her Redbubble shop. Take a look & support a disabled artist this winter. #Christmasgifts #disability #art #me/cfs #chronicillness #mecfs #digitalart

Alison Hume MP shares an account of severe #MECFS and warns that many healthcare professionals lack understanding of severe ME — especially its hallmark symptom, post, exertional malaise PEM — and that patients are too often pushed into pathways that simply aren’t appropriate.

🚨Reminder🚨 Westminster Hall debate on Government support for people with ME is TODAY (19 Nov) at 4.30pm

A huge thanks to the patients with severe ME who gave me permission to share their stories with @tessamunt.bsky.social and @joplatt.bsky.social this morning. Listen from around 8mins for section on severe ME. And of course thanks to @karenhargraveuk.bsky.social for making the meeting happen 🙏🏽

I was working on this cartoon over the weekend, and then ths BACME group doc popped into my feed today with their implied ‘Exercise is Medicine’ model. Dear oh dear. #ME #POTS #PEM #MCAS #LongCovid bacme.info/wp-content/u...

It was either at a Gibson Inquiry meeting or an APPG nearly twenty years ago that I attended where an MP was asked why (then) Canadian guidelines weren't being adopted in the UK. The answer was 'because they're not British'.

#pwME Glad I attended the debate in person yesterday. None of the speakers captured the reality of DHSC/NHS 'care' for anyone with #ME in England @tessamunt.bsky.social. Getting the FDP into shape is the latest version of DIY for ME & #LongCovid ie deliberate hot air from the Minister. Justice4ME.uk

I heard a lot of this debate w tears of relief, but I’M SO SICK & TIRED of this polite term ’the stigma’ The BPSM was a pervasive horror show that KILLED some people, and continues to threaten us all We’ve lived through psychiatric persecution - weasel words are not enough. #ClassActionLawsuitNow

New 'Resist' design available on Redbubble. Resist with the tenacity of bindweed! Available on most merch including wall art, stickers and t-shirts. Sale on at the moment! www.redbubble.com/i/t-shirt/Re... #DisabledArtist #GiftIdeas #Illustration #Resist #Wildflowers

I've made a brief summary of the content of restricted (nhs/academic email holders) 3rd module "Managing Severe ME/ CFS" e-learning. It's rough and ready, I did it for a friend who needed the info to be confident to ask her CHC provider to do it. DM me on X or FB, or comment if it would be useful.

DWP’s plans ‘in tatters’ as McFadden scraps white paper on further disability cuts #DWP @gmcdp.bsky.social @inclusionlondon.bsky.social @disrightsuk.bsky.social @dis-ppl-protest.bsky.social www.disabilitynewsservice.com/dwps-plans-i...

How do we love what we can't save — a planet, or a body? I wrote about the connections between severe ME and the climate crisis, and the discipline of continuing. jrehmeyer.substack.com/p/two-system... #MyalgicE #mecfs #ClimateAction #climatecrisis

Reading between the #UKCovidInquiry lines, is Whitty saying that although *he* thinks Long Covid is a problem, "scientific consensus" does not, so he is not allowed to offer his "personal view" to the public? Or has he changed his mind since he wrote that "short note"? 🤔🤔🤔

To pwME- has anyone made a summary of the key good points made in the severe e-learning module? I have a copy of it, just don’t want to duplicate work already done. Thanks.

UK: "Over 14,000 people in England & Wales died with COVID after catching the virus in hospital" Published: 6 Mar 2023 FOI data from the NHS (Mar 2020 – Aug 2022) shows: 14,047 patients died after catching COVID inside hospitals in England & Wales — and 69,337 more were infected after admission.

1/ This data covers the period March 2020 – August 2022. In 2025, #NosocomialInfections of #COVID should not still be a concern for patients. But, shamefully, they still are -

I still want to know this. @georgemonbiot.bsky.social or does anyone else know? I feel like it would be useful to know.

Dr Nigel Speight writes that ME families are still encountering charges of FII (Fabricated and Induced Illness) formerly called Munchhausen Syndrome by Proxy. In the UK he believes the current paediatric guidelines regarding FII need to be changed. tinyurl.com/44c4zykd

#neisvoid #me/cfs #longcovid folks, can anyone point to research on exercise post covid? I know 'six weeks rest' is the anecdotal suggestion, but are there any actual papers on this?

Yup.

ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long. There's a huge BUT coming ...🧵 www.theguardian.com/society/2025...

A few days out from #UNGA80, I wanted to reflect on the session we took part in and the media responses since. Mount Sinai was one of the 150 organizations that signed the global pledge to advocate for healthy indoor air. The event itself featured four panels of speakers who 1/

We are pleased to confirm that @sammiemc.bsky.social Founder & CEO, LCK, will give evidence to the UK COVID Inquiry on the morning of Wednesday 1st October. covid19.public-inquiry.uk/hearings/chi...

A legal challenge to force the UK government to fund specialist health services for ME/CFS has 20 hours to go. This seems like a good thing to support, for those who can afford to. www.crowdjustice.com/case/justice...

🧵 (long!) justice4me.uk update: sent to donors yesterday: "Having taken legal advice, thanks to your donations, we have instructed our lawyers to proceed with a letter before claim to the Department of Health and Social Care (DHSC). This does not mean there will be a claim (an application to 1/10

And there lies the root of it. The attraction of Reform, telling people bigger problems like COVID and climate change don’t exist. They do and it will just further sink us.

“We are told by leaders that we are the future. But when it comes to the ongoing pandemic, our present is being stolen right in front of our eyes.” Incredible speech by Violet Affleck who warned about the ongoing dangers of COVID & Long Covid, & advocated for masks and clean air at the UN today!

Maddened by such callous regard to family life but otherwise never better. #Justice4ME You? Justice4me.uk

Our article examining the extent to which people with #hypermobility are at risk of Long COVID was just published in BMJ Public Health, an open access journal. bmjpublichealth.bmj.com/content/3/2/...

🙏Thank you to Chronic Living Therapy for writing this important open letter to BACP about their article about gaslighting that included controversial: 👉 mind-body therapies 👉 trauma based theory 👉 neuroplasticity LCA have co-signed 📃👇 chroniclivingtherapy.com/open-letter-...

www.thecanary.co/global/world... Wow, Doreen Lawrence is still fighting for justice. May this time be successful. @thecanaryuk.bsky.social

BBC article today featuring @jeremy-jeffs.bsky.social story and exhibition about chronic illness’ especially #pwME. Shame about the “Chronic Fatigue” headline (could it even be a policy to do this every time?), but otherwise very good 👍 www.bbc.co.uk/news/article...

🚨NEW REPORT🚨 Huge increase in UK sickness absence. The Health & Wellbeing Report 2025 found we now have record levels of sickness. Now 9.4 days per employee. What happened in 2020? A 35 page long report: guess what it doesn't mention as an ongoing cause of employee sickness?

It wouldn’t have changed if Covid wasn’t airborne. Yet hospitals and schools are still telling children to wash hands for a predominantly airborne virus. Huge disparity here. Please will journalists pick up this story! www.bohs.org/app/uploads/...

Good description of PEM. I struggled so much to describe this constellation of suck to my doctors in the first few years of long COVID. All I ended up with was one Dx of exercise intolerance, another of anxiety, and my neuro saying long Covid resolves in a few weeks to months. That was in 2022.

I called @lbc.co.uk to ask Children's Commissioner Rachel De Souza if she has listened to @longcovidkids.bsky.social Does she have have any idea how traumatising it is for a child to be forced into classrooms with ppl who HAVE Covid, when Covid already ruined their childhood? She is NOT listening.

@ashleydaltonmp.bsky.social @rthonwesstreeting.bsky.social This is institutionalised TORTURE on your watch. Your 'final' plan isn't fit for purpose. Stop trying to pass the buck to health boards, only you are in a position to make meaningful change. How many more of us have to suffer and DIE?

1️⃣ We need all hands on deck for Nevra! NB: Nevra and Michelle worked on this video before Nevra's deterioration due to being forced to fundraise because of certain circumstances. This is truly life or death. Please don't let Nevra's voice be silenced. #pwME www.gofundme.com/f/save-nevra

It's terrifying to think no HCP understands PEM or the catastrophic risks involved. It took 3 months to recover from NOT being admitted (i.e. a morning with paramedics, talking through options)! I think my life as I know it would have been over had I gone in. No HCP would have cared/known/helped.2/2

#MedSky Prevention. Wear a #Respie

Going through old screenshots and wishing anything had changed in the past two years to make this less applicable.

petition.parliament.uk/petitions/73... Please save lives by signing and reposting thank you.

It’s important that dental health treatment addresses the roof of the mouth as well as gums and teeth, with more resources targeted at West London. Which is why I’m proud to #SupportPalateTimeActon

The third NHS ME/cfs e-Learning module was published last week, shortly after #Justice4ME launched. Written by Dr David Strain, only those with a government, NHS or academic work email address have access. Why? Who did Strain consult with? learninghub.nhs.uk/Resource/712...

Safeguarding records for the final year of Maeve’s life show social workers, nurses and a mental health assessor, instead of focusing on managing Maeve’s ME, were investigating concerns about Boothby. (£) www.thetimes.com/uk/healthcar... #MEcfs #LongCovid

ThereForME campaign update #pwME #pwLC @thereforme.bsky.social open.substack.com/pub/therefor...

1) On May 12 2025, a group of researchers signed an International Declaration stating that "there is a moral, medical, economic and scientific imperative to invest robustly in international and collaborative research into the pathophysiology of ME/CFS and Long COVID."

Seeking a Project Manager for the PRIME project: "Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs elxw.fa.em3.oraclecloud.com/hcmUI/Candid...

🚨Older adults (65-75) at risk🚨 Please use our image to share the petition. petition.parliament.uk/petitions/73... #KeepCovidBoosters