Ministers must address "non-existent" care for peole with Severe ME, coroner's report theguardian.com/society/2024/o…

This is a stark final finding from the coroner in Maeve's inquest: "Provision of care for patients with Severe ME such as that which Maeve suffered from was and is nonexistent ... 🧵

The NHS and the government have been told to act to prevent future deaths from ME (Myalgic encephalomyelitis) according to a new report from the coroner's office. The coroner ruled in July that Maeve Boothby O'Neill died from malnutrition caused by severe ME.

This e-learning is being led by NHS England and not Action for ME but agree, Todd Davenport has huge expertise of value

Looking forward to joining James Coomarasamy BBC's World Tonight around 10.30pm to discuss #MyalgicEncephalomyelitis Action for ME

Sonya Chowdhury reports how 🔹 an urgent need for funding is required 🔹 the Delivery Plan needs to be published 🔹The lack of support in social care, benefits 🔹The issue of inappropriate child safeguarding in families with ME Karen Hargrave @karenlhargrave.🦋.social 🔹Discusses her and her husbands

Thanks for sharing. We will post on Action for ME website tomorrow too

It hasn't been launched and was in draft form. I don't know who else has been asked to provide feedback but my expectation is that there will be a further draft

My understanding is that the slides represent what will be on the e-learning module. The e-learning software will be interactive so the slides just represent the content only. It's a draft shared for feedback (which Action for ME has given along with others & not the final product

I am following this up urgently but it is a draft and my expectation is that feedback will be acted on

As posted, I am following this up. As it is a draft, i expect feedback to be acted on

As posted previously, I have acted on concerns raised, been in contact and expect feedback to be acted on - the version we received was a draft and not the final product

I have spoken with David Strain who confirmed he is liaising with NHSE regarding Action for ME feedback submitted yesterday (I've been off work & only just picked it up in time to respond) & proposed amendments from other stakeholders. As this was a draft, feedback will be acted on

Here we go again Sonya Chowdhury 🙄

We did not provide this figure and have written to the telegraph to highlight the figures we use on our website. Our press guidelines also have the updated figures in. We did not provide this figure and are doing all we can to steer away from it but we can't control what is used

A really powerful and evocative piece from @CGATist

“My daughter died of ME. I had to fight the NHS for answers.” On The Story today, how Maeve Boothby-O’Neill’s death from myalgic encephalomyelitis could change the NHS. With Sean O'Neill and Manveen Rana ⬇️ open.spotify.com/episode/02h2VI…

If you can, please listen to today’s episode of #thestory. It’s a tough listen, but it’s important. We’re immensely grateful to Sean Sean O'Neill for taking the time to tell Manveen Rana about the heartbreaking story of Maeve, his daughter. 🎧👇

Together, with over 60 organisations, we signed Turn2Us' open letter to the Chancellor ahead of the budget announcement today, calling for a more compassionate and just narrative around those receiving the social security that they are entitled to 👇 turn2us.org.uk/about-us/news-…

Having the most appalling experience in CrossCountry Trains and can’t speak to anyone to help get me home. Unacceptable at this time of night!