World ME Day 2026
Standing with the ME community today and every day.
Today is World ME Day. Last year, we marked the day by sharing a joint statement from 29 organisations and initiatives asking the government to take action by appropriately resourcing the Final Delivery Plan.
This year, while we’re sorry to say we’re not marking the day with a specific campaign (in part due to changes to parliamentary recess), people affected by ME, and the immense suffering you face every day, are on our mind as much as ever. This week the community is grieving the loss of James Strazza - a talented musician and poet, a beloved son to Galen Warden and friend to many. Rest in power, James.
The lack of NHS healthcare for ME is an urgent issue; for us every day is an opportunity to grow awareness and push for change. We made the decision to stand down for today because we’re conscious that even just calling on you to share content requires you to use up precious energy, and we don’t want to ask unless it can make a difference.
We’ll be looking at how we can make the most of opportunities when parliament is back in action and we have a little more time on our hands (Karen is currently busy juggling contracts and an ongoing battle to fund for her partner’s care, whilst Emma is focusing on applying for jobs).
Please be reassured we’re working on some long-term plans behind the scenes and hope to be back from our Substack hiatus later this month. We’re currently concentrating our limited resources on long term strategies to maximise our impact. More on this soon.
In the meantime, here’s an update on how our friends and allies are marking today:
25% ME Group are sharing a guide for supporting those with severe and very severe ME.
The Blue Sunday Tea Party for ME will be taking place on 17th May.
The Red Tree and ME shared the Blue Sunday online concert for ME, organised by Isaac Greer. Isaac’s sister Eli has very severe ME and he is raising money for research at the University of Edinburgh led by Professor Chris Ponting.
Long Covid Advocacy is sharing an open letter to the Royal College of Psychiatrists requesting that they ensure the sessions on ME and Long Covid at their International Congress event reflect current biomedical evidence and clinical guidance.
#ME Action is asking people to lobby their MPs on the delay to commissioning a specialised NHS service for very severe ME.
ME Local Network (MELN) is opening an online space on Friday 15th for people to socialise, as well as to recap the ME news from the last year. Register here.
Sheffield ME Group are holding an event in-person and on Zoom, where Pippa Stacey will be giving a presentation. Here is the link to register: https://bit.ly/PippaStacey.
Our thoughts and solidarity are with everyone dealing with ME, as always.
We’ll be back soon!
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