Campaign Update #2

A very, very long open letter...

A big hello to our #ThereForME Substack subscribers old and new. We’ll be back next week with a proper post but we thought we’d take this moment to send around a campaign update.

Two weeks in and our small campaign is (we think) making big waves.

#ThereForME open letter

We closed our open letter to Wes Streeting last Friday with an incredible 2,624 signatures from patients and carers across the UK.

A huge thank you to every single one of you who took the time to sign it. The 75-page letter was printed by Emma and posted off yesterday to the Department of Health and Social Care (along with a hard copy of our report).

We’ll be chasing up a response and continuing to raise the voices of the 2,624 people who signed our letter at every opportunity we get. Here’s a happy Emma doing her #ThereForME duties at the Post Office yesterday.

‘Years of well funded research’ - we think not!

We were delighted to make it to the top of the Observer letters page at the weekend, responding to a piece by Alastair Miller about the inquest into the death of Maeve Boothby-O’Neill. There was much in his piece we disagreed with but we couldn’t let a reference to ‘years of well funded research’ for ME go unquestioned.

We were happy to provide some cold hard facts and flag our #ThereForME call for at least £100m annual funding for ME and Long Covid biomedical research. Most importantly, we wanted to amplify Maeve’s own words on the matter:

‘My only hope lies in biomedical research, and adequate funding for this requires the medical establishment to set aside the inaccurate idea that behavioural treatments can cure ME.’

We hope to share more perspectives on the inquest in the coming weeks. What is most incredible is that there are already signs that it is having a positive impact on care for people with Very Severe ME. Here’s hoping that soon a ripple becomes a tide.

JohnVsJonVsME

At the weekend #ThereForME team member Oonagh Cousins kicked off #JohnVsJonVsME Olympics Edition from Paris. The social media campaign is using clever Olympics-themed memes to get the attention of John Oliver and Jon Stewart - challenging them to be the first John/Jon to cover ME. They’re aiming for an Olympian social media relay across timezones.

We’ll leave you with a good ‘un. Until next week!