Today we've got a blog from Yanto Evans, focused on Long Covid in Wales and why the Welsh government should prioritise the unfolding health crisis. His guest blog is also available in Welsh translation. Link in next post 👇

UK: Debate on Government support for ME/CFS in Westminster Hall on 19 November 2025 Links: www.thereforme.uk/p/westminste... www.parliament.uk/about/how/bu... Screenshot from latest Science for ME update #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @thereforme.bsky.social

(2/2) Please write to your MP and ask them to attend! You can find your local MP here: members.parliament.uk/FindYourMP  @thereforme.bsky.social have produced a template letter to help: www.thereforme.uk/p/westminste... 🔗https://whatson.parliament.uk/event/cal53589

(1/2) 📢 Westminster Hall debate on government support for ME Tessa Munt MP has tabled a debate on government support for people with ME next week in Westminster. This is an important opportunity to make sure the voices of people with ME are heard in Parliament.

Delighted that I’ve secured a debate in Parliament on ‘Government support for ME’ next Wednesday 19 November. This provides a valuable opportunity for MPs to share views - the first in years. I hope that many MPs will join me. Do encourage yours! #pwME

Done. Please do take a few moments to help #pwME.

🚨 NEXT WEDNESDAY 19 NOVEMBER We’ve been made aware of an upcoming Westminster Hall debate, tabled by @tessamunt.bsky.social, focused on government support for people with ME. If you have the energy - an email to your MP asking them to attend can go a long way 🙏 Template in next post👇

1️⃣ 🧵 NEW: The government’s Keep Britain Working report claims to tackle the UK’s crisis of ill health & economic inactivity. But it never mentions Long Covid. Not once. Not the pandemic either. That’s not a small oversight — it’s a fundamental flaw. Let’s unpack why 👇 🔗 www.gov.uk/government/p...

For too long, ME has been underfunded, under-researched, and poorly understood. Patients deserve better. You can read more in my guest blog for @thereforme.bsky.social below:

Great piece explaining so clearly the situation faced by people affected by ME in her constituency from my @libdems.org.uk colleague @wendychambld.bsky.social. 🙏🏽

👍 @wendychambld.bsky.social without muddling the issue: "there are currently no specialist doctors and nurses [for ME] across the whole of Scotland". Applies to basically worldwide... despite millions more since 2020. www.thereforme.uk/p/scotland-m...

We’re absolutely delighted that today’s #ThereForME blog is a guest piece from @wendychambld.bsky.social! Wendy writes about the situation facing her constituents in North East Fife, calling for the Scottish government to step up. Link in next post 👇

Update from the APPG on ME 👇

In today's Substack post we share news about what steps are currently being taken to support those with ME and Long Covid. Link in next post 👇

Latest campaign update from @thereforme.bsky.social ⤵️ To follow closely: six conferences coming up on ME/LC in nov 💪 Though, as always, what "really matters is not the meetings, talk and words - but whether they lead to action" www.thereforme.uk/p/campaign-u...

It’s your last chance to get your nominations in for the #ThereForME 2025 advent calendar! ⏱️ Today is the last day before nominations close You can add your nomination here: docs.google.com/forms/d/e/1F...

This is happening everyday, everywhere. Read the story of Rosie and Alice. Everyone who has been hospitalised with ME, knows it. "Hospitals should be places of healing – but for people with severe ME, they are often sources of harm". #GreatestMEdicalScandal www.thereforme.uk/p/sensory-he...

Today's guest blog is from Rosie Barrett, who writes about her sister Alice's experiences. Rosie outlines the challenges people with v. severe ME face navigating sensory sensitivities, at home and in hospital - and the creativity & flexibility needed to provide safe care.

It would be lovely to celebrate some of the journalists in print and broadcast media who have told our stories and raised awareness.

Which researchers do you think deserve to feature in the #ThereForME advent calendar this year?

We'd love to be able to thank some MPs for being #ThereForME!

🥼🙏?

Keep ‘em coming!

Clip from yesterday’s Westminster debate on PoTS, Tessa Munt MP @tessamunt.bsky.social raised the case of a constituent’s daughter with #MECFS who believes she also has PoTS. After finally seeing a consultant in Bristol, she was told PoTS was “a TikTok fashion” and refused any testing.

We've already had some lovely nominations! Keep 'em coming!

We know that support for people with ME isn't anywhere near as good as it should be - & we're working hard to change that. But this Christmas we wanted to take a moment to celebrate those in the UK who are in our corner. Can you help us find our #ThereForME advent calendar stars?

From Lib Dem conference to Washington DC - today's #ThereForME campaign update shares an update from advocacy in the UK and overseas. Read on to find out more 👇 (Link in next post)

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 👇