Minutes are up from the latest meeting of the APPG on ME 👇

Want to understand the #GreatestMEdicalScandal in one sentence? "Most said they would be unsure about accessing a specialist service due to the risk of inappropriate care causing harm to their loved one" Read it in the latest @thereforme.bsky.social update --> www.thereforme.uk/p/commission...

Today's #ThereForME blog shares findings from a mini survey. We asked carers and clinicians with experience supporting people with v severe ME whether the Health Secretary should commission a service for v severe ME - and if so, what it should look like. Link in next post 👇

For any eagle eyed #ThereForME supporters looking out for our weekly blog, we just wanted to let you know that our posts will be a bit less regular this month! We’re slowly picking up again after our break. We’ll be back on a more regular basis as content and capacity allows 💙

📢 APPG on ME The APPG is opening an enquiry into Severe ME next Wednesday. 📆 Wed 10 Sept | ⏰ 4pm Template to ask your MP to attend 👇 appgme.co.uk/contact-your...

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

Our #ThereForMe blog is back! Our team took a month off in August but we’re back in action. Today we’re sharing three burning questions on our mind as we look to the months ahead. Link in next post 👇

They are BACK! 🙂💪 www.thereforme.uk/p/campaign-u...

Today’s #ThereForME blog is our last update before a short pause (we’ll be back in September 😎). We unpack the Delivery Plan, the media coverage and why it matters. Link in next post 👇

Great to be able to collaborate and support this important #patientsafety issue

(1/5) It has been great to collaborate with @thereforme.bsky.social this year on their campaign to create an NHS that's there for people with ME and Long Covid.

Since becoming a severe #pwME in early 2022 only a handful of things have made me feel some sense of dignity, belief in positive change & group belonging. At the top, is the work done by this association in just under 1 year. THANK YOU. @thereforme.bsky.social www.thereforme.uk/p/thereforme...

Today we’re celebrating a year to the day since @karenlhargrave.bsky.social & @emmagl.bsky.social launched #ThereForME! We had a busy day yesterday responding to the Delivery Plan release. It’s clear how much more our campaign has left to do - but today we’re reflecting on what we’ve done so far

A huge well done to @nickbenton.bsky.social, his dad & @binitakane.bsky.social for this powerful segment on @channel4news.bsky.social

Thank you Adam and huge thanks to @channel4news.bsky.social for covering this tonight, and to @nickbenton.bsky.social for bravely sharing his story.

“I honestly just did not realise that it was possible, in the UK in 2025, to be as sick as my husband is & for there to be basically no specialist NHS services to provide any kind of support” Our co-founder @karenlhargrave.bsky.social on Radio 4 WATO 👇 (Recording via @abrokenbattery.bsky.social)

Sadly, the long wait for the Final ME Delivery Plan has continued…The Times and campaign groups were able to publish details of the Plan at midnight, but it wasn’t available to the rest of us at midday. 🙏🏽 to Minister Ashley Dalton for coming to reiterate this isn’t how it should be. Fresh start?

👏👏👏👏

Advocate extraordinaire @tessamunt.bsky.social stands up in parliament just now demanding to know why the Delivery Plan has not been made public. Ashley Dalton seemingly unaware - clear this is not how it should be and says she will take up with officials.

Lots going on today with ME coverage! 📺 📻 Some coverage we’re expecting today (pending news schedules): - Our co-founder @karenlhargrave.bsky.social due to be featured on Radio 4 World at One between 1-2pm - #ThereForME Ambasador @binitakane.bsky.social due on Channel 4 News between 7-8pm

The Final Delivery Plan for ME/CFS has been released today. The full report was shared with some organisations and media outlets late yesterday. We’re (still) waiting for it to go online. A short 🧵with some thoughts… (1/)

After 3+ years of waiting the Final Delivery Plan for ME is being released today. Our comment 👇

Today we’ve got a visibility themed update, in honour of our @oonaghcousins.bsky.social new job. Read today’s #ThereForME update to find out how many times we can fit the word “visible” into a blog. Link in next post 👇

New letter from @libdems.org.uk health lead @helenmorganlibdem.bsky.social to Wes Streeting makes clear that the latest Delivery Plan delay is unacceptable. “People affected by ME have already suffered too much, for far too long. We owe it to them to recognise the urgency of the challenge” 🔥

Today’s #ThereForME guest blog is from our friends at @longcovidadvoc.com They write about the experience of severe ME, exclusion from research and healthcare, and how the sickest patients are putting their health at risk to help others. Link in next post 👇

New update from @thereforme.bsky.social on the permanent bittersweet existence that #pwME live in for the last couple of years. And yes "the arc of history is long, but it bends towards justice", but man, does it look long indeed... #GreatestMEdicalScandal www.thereforme.uk/p/campaign-u...

Today’s #ThereForME blog unpacks the latest frustrating news on the Delivery Plan for ME, and shares some seeds of hope. Ft. An exclusive message to the community from the one and only @tessamunt.bsky.social 👇 (Link in next post)

Thank you @tessamunt.bsky.social! 💪 👏👏👏👏

Hugely important blog from @patientsafetylearning.org team. Essential reading for any commissioners and healthcare professionals designing services for #pwME

We’ve been really pleased to collaborate with @patientsafetylearning.org on this series focusing on accessibility of healthcare for people with #ME and #LongCovid. Great new blog out today from Samantha Warne summarising experiences shared by the community 👇

Thank you @tessamunt.bsky.social for keeping up the pressure in parliament! With just 10 more days left in June, like Tessa we’re hoping that we’ll be seeing the final delivery plan out soon 🙏

Our @karenlhargrave.bsky.social spoke to BBC Radio 4’s Today programme this morning. Karen outlined the challenges people with ME face in healthcare and the very real patient safety risks the most severely affected face 👇 (Thanks to @abrokenbattery.bsky.social for the clip 🙏)

Minutes from the joint meeting last month between the APPGs on ME & Long Covid are now online. The meeting covered: ▶️ Welfare reform ▶️ Research Link in next post 👇

Today’s #ThereForME campaign update focuses our our new joint briefing on the planned reforms to PIP. A big thank you to everyone who took part in our survey 🙏 Today’s update shares the findings and how you can help. Link in next post 👇

1/3 ❌ PIP cuts will be devastating for people with #ME & #LongCovid. Our new briefing shows these reforms will push people further from work, deepen poverty & worsen health. We’re calling on MPs to oppose this - help us flood their inboxes. Briefing & how to act ⬇️

Thank you, Oonagh! This post is already helping me. My legs are on strike - I'm keeping the phrase 'aggressive rest' in my head & it's helping to keep the guilt at bay. (Even when I'm close to losing the ability to use my legs at all, internalised ableism has lots to say!) #MECFS #restisgood

A must read The importance of understanding rest by @oonaghcousins.bsky.social www.thereforme.uk/p/the-import... @thereforme.bsky.social #ME/CFS #LongCovid #PEM #StopRestPace

‚Previously, an ability to rest and do less had marked me as disciplined. Now, similar behaviour, such as staying home, conserving energy and prioritising recovery, was perceived as a lack of effort. (…) society praised the former and judged me for the latter.‘ #LongCovid #ME

"To rest in the context of chronic illness demands the endurance of immense grief"... Another brilliant and poignant update from @thereforme.bsky.social by @oonaghcousins.bsky.social www.thereforme.uk/p/the-import...

Today’s #ThereForME blog is from our very own @oonaghcousins.bsky.social! Oonagh explores the importance of understanding rest, comparing her experiences as an athlete to those as a patient. Link in next post 👇

Today’s #ThereForMe campaign update follows a thread of solidarity within and outside the ME and Long Covid communities. Link in next post 👇

This one is hard, wished everyone could read it. 3 years on and it still amazes me how similar - if not identical - some of our lives and struggles as #pwME are. And how much our lifes could change if patients and carers were visible, recognised and supported by public and doctors. #ThereForME

Personal & eloquent. The fear, grief,isolation,exhaustion & bewilderment from the lack of anyone in the medical profession DOING anything- that all comes with loving& caring for a person with Long Covid or M.E. Love shines through it all. Carers are our everything- thank you all. #MECFS #LongCovid

I'm so grateful for the support of the other carers I know. It means the world to be understood and to be able to be there for each other. I'm a little less lost with them in my life 🙏💙

Today’s #ThereForME blog is from our very own @emmagl.bsky.social 💙 Emma shares her memories of becoming a carer, with reflections from an A-Z she wrote in 2023. Link in next post 👇

Our latest #ThereForME blog gives an update from a busy few weeks. Ft. the @libdems.org.uk and @tessamunt.bsky.social! Link in next post 👇

For #WorldMEDay, what really matters is not just words - but action on the issues that are important to people with ME. The @libdems.org.uk have been leading the way on that! Thank you @tessamunt.bsky.social for raising this important issue in DWP questions yesterday 🙏

Thank you @helenmorganlibdem.bsky.social 👏👏👏

Today is #WorldMEDay. ME is a chronic, complex and often misunderstood condition that has a huge impact on patients. People with ME have been let down for decades - it's time for that to end. Our @libdems.org.uk letter to the Government 👇

We’re standing in solidarity with the community and asking the government to back the new ME Delivery Plan with the resources it deserves. Thanks to @thereforme.bsky.social for leading on this. #WorldMEDay