Campaign Update #31: Research and advocacy watch

We’ve been a little low on capacity lately at #ThereForME HQ. Between busy day jobs, complex home lives and health challenges, you may have noticed that lately we’ve been a little less active than usual.

This week, we’re celebrating the amazing work that has been done in recent weeks by other researchers, advocates and organisations.

Research ramping up

We’ve had a feeling recently that research has been picking up. As we highlighted in our last update, this has been largely driven by charities and individual researchers, rather than ambitious government funding. Nonetheless, it’s exciting to feel a sense of momentum following the release of groundbreaking findings from DecodeME last summer.

In late February, Action for ME, the Schmidt Initiative for Long COVID, and the Complex Disorders Alliance (CODA) announced the launch of Sequence ME & Long Covid. The study will be the world’s largest long-read, whole-genome study of any disease, building on DecodeME and with $250,000 already secured for its first phase. Just days later, Solve M.E. announced their latest round of ME/CFS Catalyst Awards, funding two pioneering studies led respectively by Professor Carmen Scheibenbogen and Drs. Liisa Selin, Roshan Kumar and Ayano Kohlgruber. The studies aim to explore new treatment options, and uncover key biological drivers of ME and Long Covid.

It’s not us just noticing how research has picked up. BBC Radio 4’s Inside Health got in on the action, airing a programme which asked the seemingly eternal question: Is the tide turning on ME research? A couple of weeks later, BBC News also covered a symposium convened at Winchester Cathedral by the ME/CFS Alliance, bringing together leading scientists and researchers into the causes of ME/CFS, Long Covid and post infectious disease to discuss the way forward. #ThereForME volunteer Jonah Weisz was present, alongside our ambassador Dr Binita Kane.

Marking Long Covid awareness day

Over the weekend, we cheered on advocates and organisations getting stuck in for Long Covid Awareness Day. Ahead of the day itself, advocate (and #ThereForME Advent calendar star) Fran Haddock spoke to BBC Look North about how people are, in Fran’s hardhitting words ‘still getting sick long-term, like me - with no treatment or cure and not knowing what my future holds’.

Long Covid Kids were also active in the run-up to Long Covid Awareness Day, running a campaign through which over 1,000 people across the UK wrote to their elected representatives, calling for greater recognition of Long Covid in children and young people. Amplifying the campaign’s calls, last Friday a special ITV News report focused on the heartbreaking stories of families whose lives had been ‘flipped around’ by Long Covid.

Meanwhile, our friends at Long Covid Advocacy marked Long Covid Awareness day with two gifts for the community: a template medical binder and an interview with Long Covid leading light Professor David Putrino. Thank you, Long Covid Advocacy!

We’ll leave you with images from #LitForLongCovid, with images spreading across social media on Sunday of landmarks from around the world lit up in teal for Long Covid awareness. From Cardiff Castle to Whitby Town Hall, via Niagara Falls, the photos were a poignant reminder of the global long-term impact of the pandemic six years on, too often hidden from sight.

Cardiff Castle lit up in teal for Long Covid Awareness Day. Photo credit: Yanto Evans.

Posts on social media with photos of Niagara Falls and Whitby Town Hall lit up in teal for Long Covid Awareness Day. Photo credits: @CovidSaferSF and Town of Whitby.

#ThereForME is taking a break

With capacity limited - and, a long-awaited and much-needed HQ holiday on the cards - we’ll be taking a break from our Substack until late April. We’ll keep you posted when we’re back. And, importantly, we’re looking to you all to help us keep the pressure up while we’re on a short hiatus (in case you were looking for some tips, here’s #ThereForMP Tessa’s two cents on how to do so).

We’ll see you next time.