Dear readers, we’re happy to let you know that #ThereForME is back in action!
Yesterday, after a much needed break throughout August, we booted the campaign back up again to continue our work. As we look to the months ahead, here are three questions we’re asking.
Will MPs keep up the pressure for safe NHS care and research funding?
The long-awaited Delivery Plan for ME/CFS was finally published in July, on the very last day before parliament broke up for recess. As parliament gets started again this week, we’re looking out for whether MPs will pick up where the plan left off and hold the government to account on the need for urgent action.
You may remember that, at least in our view, the Delivery Plan raised more questions than it answered. Will the Health Secretary do the right thing and commission an NHS service for Very Severe ME? Will we see any major investments from the UK government in biomedical research in the months and years ahead? These are some of the questions we’re hoping MPs will be raising this autumn.
Will DecodeME be the catalyst we’ve all been waiting for?
We’re also hoping to see parliamentarians, and changemakers across the country, picking up on the recent landmark findings from Decode ME. Unless you’ve been living under a rock — or, like Karen’s and Emma’s partners, in a dark room away from social media — you’ll have seen the ME community celebrating the University of Edinburgh’s recent findings.
The genetic research identified eight gene regions, several of which were linked to the nervous and immune systems, where variations are more common in those with ME than those without. The findings, which have been described as a “breakthrough”, don’t directly lead to new treatments. However, they lay the groundwork for future research — and hopefully, much more of it. You can hear more about the findings on the Guardian’s Science Weekly podcast, featuring #ThereForME volunteer extraordinaire Nicky Proctor.
On the release of the findings, lead scientist (and #ThereForME advent calendar star) Professor Chris Ponting called for “researchers whose expertise is directly relevant to these eight genetic signals - especially those who've never worked on ME/CFS before - to come forward and help us explain more precisely what DecodeME's signals mean.” The research could position the UK at the forefront of a global race to find a cure. Unfortunately, however, it doesn’t feel like the starting gun has yet been fired. We’re looking at you, Wes Streeting and Ashley Dalton.
Interestingly, however, we’re seeing international researchers and clinicians increasingly on the same page about the work that needs to be done. Over in Berlin, the International ME/CFS Conference 2025 culminated in a declaration, which invoked a “moral, medical, economic and scientific imperative to invest robustly in international and collaborative research into the pathophysiology of ME/CFS and Long COVID, with special focus on immune, autonomic, neurological, and metabolic dysfunction.” To date, the declaration has been signed by 65 leading scientists and medical experts.
What’s happening with the PIP review?
We’re also looking out to see what comes next with the government’s controversial plans for welfare reforms. You’ll likely remember that back in June the government made a U-turn on its plans to tighten PIP eligibility after facing a major threat of rebellion from Labour MPs. This pressure was driven by the tireless campaigning of disability organisations.
Disability minister Sir Stephen Timms has confirmed that the upcoming review will be co-produced with disabled people and organisations. It will be structured around a smaller steering group to guide the work, alongside a larger advisory group to gather wider input. The review is due to conclude in Autumn 2026, but for now we’re waiting for further updates.
So there you have it: three questions that are on our minds as we contemplate our next moves. If you have questions of your own, here’s our regular reminder that our suggestions box is always open. We’ll see you next time.
Good to have you back after the break.
Thanks as always for your work! 👏👏