On Wednesday 25 November, Action for ME will launch The Cost of Neglect: Evidence from the 2026 Big Survey at an event in Parliament, sponsored by the All-Party Parliamentary Group on ME.
The report draws on responses from more than 5,000 people and provides important evidence about their experiences of healthcare, social care and the wider impact of ME.
We want as many MPs as possible to engage with these findings and understand the urgent need for change.
We've created a simple tool that makes it easy to generate a personalised letter. Just enter your details, and the form will identify your local MP and prepare a letter for you.
Once you've completed the form, you'll receive an email containing your personalised letter, your MP's contact details and instructions for sending it.
If you would prefer to write your own letter or edit what we have written, then you can download our template here and Find your MP to locate your MP’s name and contact details.
On Thursday 26 November, we'll be sharing the findings of the report in a public webinar.
We'll explore what the survey tells us about the experiences of people with ME, the challenges they face and why urgent action is needed.
The full report will also be available to read and download on 26 November.
Register for the Big Survey webinar
For too long, people with ME have faced inadequate support and insufficient investment in research.
By asking your MP to attend the parliamentary launch, you can help bring the experiences of people with ME directly to those responsible for making decisions.
The evidence is growing. Now we need action.
