Incredibly powerful watch about the government plan on ME from @binitakane.bsky.social and Sarah, whose daughter Maeve died from ME. NHS urgently needs to commission specialist services for the 100,000s people living with this debilitating condition. watch here youtu.be/GZbSrdtiA9k?...

An interview with Katharine Cheston: exploring stigma, shame and illness #MECFS #ChronicIllness #RecoveryStories chroniclivingtherapy.com/katharine-ch...

8-minute interview on Irish national radio www.rte.ie/radio/radio1... While ME is discussed a bit, the focus is more on the issue of living in a care/nursing home #MyalgicEncephalomyelitis #chronicillness #PwME #SevereME

Quite disheartening to return from 10 days working with some of the most important and relevant #MECFS and #LongCOVID researchers in the world and to read this drivel being allowed through from @bmj_latest. Let's be unambiguous about this: BMJ has www.bmj.com/content/389/... 1/

Oh wow. Never seen this clip before. Thank you, Dorothy Zbornak & #GoldenGirls episode writers. #MECFS youtu.be/kdXNNfLWkUI...

NEW: There are 400,000 people diagnosed with ME/CFS in the UK, at least there would be if access to diagnosis was equal. ME/CFS diagnosis however is a postcode lottery. It's much rarer in non-White communities and socioeconomically deprived areas, much worse than for other diseases rdcu.be/eiEeu

Paul Garner is featured, alongside the Norwegian snake-oil sellers, as usual. If the media wants a professor who has recovered from Long Covid, I would be very happy to volunteer my story of an unambiguously-biomedical illness.

Often when reading about long covid I feel the info is all the same and is aimed as an intro to those new to long covid. This actually gave some nuance and science to pacing and I have learnt a lot. Includes a practical advice.

Thank you @francesryan.bsky.social I just don't understand why those in power @rthonwesstreeting.bsky.social are seemingly not able to join up the dots on Long Covid, from increases in numbers no longer able to work to children missing from school. www.theguardian.com/commentisfre...

@iandunt.bsky.social it would mean the world if you might follow up on your piece to mention the hideous problem of Long Covid—tomorrow (15 Mar) is Long Covid awareness day www.longcovidawareness.life

Where I don’t have agency even “post” pandemic is the long covid I got from an infection at work as a doctor Omitting the long term impact the pandemic has had on so many, is a flaw in any of the recent posts

Dear @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social We are Physios for ME and we urge you to #FundThePlan Our video is just too long for BlueSky so you can see it here or read what we have to say in the thread below www.facebook.com/watch/?v=166... @thereforme.bsky.social

People with ME so want to be better and contribute to society. An ambitious and well-resourced Delivery Plan could make such a difference at relatively small cost. Thank you for asking me to join you in the call to #FundThePlan!

Very moving video #FundThePlan

Excellent long read about Long Covid. Still having devastating effects on large numbers of people. www.theguardian.com/society/2025...

Refreshing article. Her experience of living with #ME simply interwoven with a general discussion of her life and her huge achievements. "When she’s well enough, she and [her husband] go on outings to local pubs and coffee shops." Very relatable #pwME www.nytimes.com/2024/10/25/b...

I've had #ME for 38 years, nothing has changed in that time, no care, treatments or funding for biomedical research It's an appalling record for everyone who's had a responsibly to implement change for #pwME over decades #FundThePlan @ashleydaltonmp.bsky.social & @rthonwesstreeting.bsky.social

30 yrs have been wasted on a psychological approach to #MECFS that led to stigma, abuse, and serious harm. It was abandoned by NICE due to bad science. Wes Streeting & @ashleydaltonmp.bsky.social The Delivery Plan is an opportunity to undo the damage and research treatments #FundThePlan

A few days ago we heard the UK’s government delivery plan for ME will contain NO additional funding. How will this make a meaningful difference to #pwME? So @wesstreeting.bsky.social and @ashleydaltonmp.bsky.social , please listen our lived experiences, and #FundThePlan @thereforme.bsky.social

Dear @wesstreeting.bsky.social & @ashleydaltonmp.bsky.social I’m a carer to my husband James who has very severe ME. He used to be a civil servant. Now he can’t get out of bed or have a conversation. The Delivery Plan for ME is an opportunity to invest in our future. #FundThePlan

@thetimes.com - Plan to help ME sufferers will not include extra funding Quotes from our Chief Executive, Sonya, @karenlhargrave.bsky.social & her husband, James, @joplatt.bsky.social & @helenmorganlibdem.bsky.social #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis

@georgemonbiot.bsky.social #pwME really do need our allies to speak out about the government's announcement that the DHSC's Plan for ME will not included extra funding for research or care. "Plan to help ME sufferers will not include extra funding" archive.ph/Knjyl

Cure ME/CFS caps getting out there to help spread awareness + spark conversation 🔥 If you wanna, you can get yours here 👇 yewjk2-s6.myshopify.com #MECFS #LongCovid

It’s been a big Long Covid and Me advocacy week for me. Just a word to those suffering - there are some very promising conversations going on at high level through the FDP T&F group and beyond. I’m cautiously optimistic. It’ll be slow and difficult but I do feel tide is shifting in right direction 🤞🏽

After 15 years with #MyalgicEncephalomyelitis, I‘ve had complex relationship with hope. I wrestle with it this month in a piece written for @smileformecharity.bsky.social Would love to hear if this resonates #ChronicIllness #MECFS #pwME

Brighten up your day with Josie George's beautiful @theguardian.com country diary and a robin 'wide, wide awake, warm fire on his breast, sunshine in his voice.' #countrydiary #naturewriting

Latest episode of Post-Exertional Mayonnaise podcast out now! @litsadremousis.bsky.social, @dovsz.bsky.social and I talk about living with ME in a world of change youtu.be/Sc9GRzktRws?...

Just finished this book. Some musings. First to emphasise we all have different experiences with ME/CFS, these are mine and they don’t invalidate any one else’s. What an incredible woman. She ended up in many ways where I am. Acceptance for me is the key to happiness. Control what you can. /1

I'd been wondering what had happened to the DHSC delivery plan for ME/CFS. They published the outcome of the consultation process in December and the final version will be publshed by the end of March. meassociation.org.uk/2024/12/the-... This gives me so much hope!

So happy to see this! Am going to notify my GP practice

I am #antifa , #socialist , artist, bedbound with chronic illnes #MECFS , obsessed with cats I want to connect

The Guardian video about my life living with #LongCovid is also on YouTube. Please watch to learn how debilitating this disease is. We urgently need government action to find treatments. youtu.be/3mzG8j16FlQ?...

Want to see more of your old favorite accounts? This is how I created a feed of just my favorite accounts using a list. I don’t get alerts but it’s easy to swipe over and see the new key posts. I use it so I don’t miss out on #MECFS #LongCovid and #disability friends.

I'm a chemist w/ ME/CFS. Out of desperation, I tested thousands of L-glutamate (the most abundant neurotransmitter) competitive analogs on myself. Made countless variations of those that seemed to help. Found one that helps far beyond placebo effect! SEEKING ADVICE: How can I be taken seriously???

Eek. Nearly missed this! Feels like it has come round quickly again.

I'm literally not finding anyone so have had to go back on X. Any starter pack suggestions?

Tonight's telly. With a high degree of skepticism, I watched The Fear Clinic on Channel 4. Actually, it was very interesting, and for once, the treatment seemed to make a lot of sense (I had feared it would just be bog-standard exposure therapy, but it wasn't). www.theguardian.com/tv-and-radio...

Can't believe I have only just discovered this book. Must share! Came across it via a book recommendation by Ann Patchett. She says she recommends it in real life all the time. "The medical system does not work equally for all people and this book is the truth." /1

Some thoughts on #MECFS and music, silver linings and loss. 🧵/8 For me, Christmas is all about the music. When I was younger and didn’t understand pacing and #PEM as well, I pushed myself through orchestras, community choirs, solos, small ensembles, flute, voice, conducting. Joy followed by crash.

Grateful to @gwynnemp.bsky.social for a really productive discussion today. It’s filled me with hope that there are people at the top genuinely fighting for change in the care of #LongCovid and #ME. Hoping to be part of that change, will keep you all posted 🙏🏽

I want to/need to do more than I can. I know that's the default for those with ME but Christmas adds extra pressures One of the hardest things to deal with with this illness is letting others down Long list of things. Will prioritise and do what I can and try to forgive myself for the rest. Ugh

Brief video on #PEM the core sumptom clompex of #MECFS by the Norwegian ME Association narrated in English, but w/ subtitles in several languages: youtube.com/watch?v=lp3Y...

This is so good

Anyone here on bsky who are in their 20s and have moderate/severe #MECFS? Homebound and somewhat bedbound? I’m feeling so alone in this illness. I’m so grateful to have others in the chronic illness community to lean on, but I still struggle with feeling like nobody really gets it.

Hello blue sky people! I have 16,000 Twitter followers to whom I am dedicated to helping with MECFS. How will I ever reach that over here? Do I need to post on both places? ❤️

Yes unfortunately the Wikipedia entry used to contribute to the psychologizing of the disease. I feel very grateful to the editor who spent many months revising it on the basis of better sources. Very grateful to all you do as well. I am so, so sorry for your loss. 1/