Campaign Update #20: A thread of solidarity

Solidarity can sometimes feel in short supply for people living with ME and Long Covid, but recently we’ve seen hopeful signs - both in the wider disability community and specifically in support of those affected by these conditions.

We are not alone. Clear, actionable messaging - like #FundThePlan - lays the foundation for effective advocacy. But it's the support of allies beyond our immediate community that helps carry it further. We need voices from outside the bubble who share our goals and amplify the call for an NHS that is there for people with ME and Long Covid. These allies are essential in broadening our reach, strengthening our case, and building the momentum for change.

MPs and celebrities stand up for the disabled

The government’s proposal to cut disability welfare is deeply concerning, but we’re pleased and relieved to see so many Labour MPs (including government ministers) opposing the reforms. It’s great to know these MPs are listening to their constituents and standing up for disabled people’s rights

Celebrities have also been taking a stand with more than 100 disabled celebrities signing a letter criticising the changes. They have launched the campaign #TakingThePIP, aiming to show the government how the reforms will affect the disabled, the deaf, and the neurodivergent. We are stronger together! The website has a letter generator for writing to your MP as well as some social media templates. Don’t forget to add the hashtag #FundThePlan!

And of course we’re grateful to the papers for reporting on it.

Times campaign rewarded

Speaking of the media, we were so pleased to see the recognition and praise rightly given to The Times recently for raising awareness of ME and the need for reform. The Times won Campaign of the Year for their work at the The Press Awards 2025. The work that Sean O’Neill, Eleanor Hayward and Fiona Hamilton have done to highlight the lack of appropriate healthcare for people with ME is invaluable.

Image credit: The Press Awards

Researchers and physicians are #ThereForME

There have also been a number of strong and well-evidenced responses to a recent, deeply flawed BMJ opinion piece which disputes the 2021 NICE Guideline for ME and endorses Graded Exercise Therapy and CBT. The responses included three from individual physicians, two from researchers, one from a psychologist, and one from a group of over 80 doctors and researchers including David Putrino, Danny Altmann and Dr Binita Kane. It was disappointing to see unfounded opinions being given prominence in the BMJ initially, but very reassuring to see such a clear response standing up for good science.

Here are some of our favourite quotes from the rapid responses:

“They ignore that CBT and graded exercise therapy studies have proven that ME/CFS is a physical disease. They also ignore that those studies have shown that changing your mindset, which is what CBT for ME is all about, does not lead to objective improvement and it has a negative effect on work and disability status.” Mark Vink, Family and insurance physician & Friso Vink-Niese (Independent Researcher, Germany), The Netherlands

“Hope for patients with severe ME would be better inspired by appropriate funding allocated to research and treatment.” Rachel A Reaveley, former rehabilitation consultant. Retired due to ill health, North East, UK

“We do agree with Miller et al on one point: people living with severe ME/CFS deserve to have hope. But hope will come from effective therapies backed by robust clinical research, not opinions.” Letter from over 80 doctors and researchers

Inspiring solidarity through art

As we’ve discussed before on our Substack, art can be a powerful way to make the invisible visible, expressing the realities of life with ME and Long Covid in ways words often can’t. Alison Larkman’s I Would Be Here If I Could project was co-created with people with ME and Long Covid, connecting them to places they used to visit and love, making the invisible visible. Those able to travel can hear and respond to their messages by visiting the Mirrorbox on its journey around the UK. Hear more about it on BBC Radio Bristol:

You can also see updates on the Mirrorbox’s journey and listen to messages on the website, starting with Lizzy Horn’s message about Troopers Hill in Bristol.

Elsewhere in the art world, last week Karen attended the University of Brighton Graduate Show for 3D Design and Craft to see her friend Clare Scoltock’s art installation. Inspired by Karen and her husband James’ experiences with ME, Clare’s piece ‘Rejected Bodies’ uses craft to re-centre people with ME, who have long been excluded from the cultural narrative. Clare used woodwork to create bowls representing ME symptoms and designed a wall hanging inspired by our work at #ThereForME (alongside others working to raise awareness and campaign for improved care). It was incredibly moving to see so many people engaging with the installation - and taking home our #ThereForME reports and tote bags!

Image credit: Karen Hargrave

The ties that bind us together

Finally, Alice Barrett has kindly agreed to share this poem she composed and managed to share with her family by whisper, at heavy cost to her from the exertion involved. You can see Alice’s sister Rosie’s moving #FundThePlan video in Campaign Update #18. We’re deeply moved by Alice’s words, and especially by the image of a silk thread connecting us all - a reminder that we are stronger together.

The Silk Thread

I lie alone enveloped in darkness.

My pain has no corners, my suffering has no bounds.

“Hang on in there” a loved one whispers, as I am turned by gentle hands.

So, floundering in my cold sweat, I reach for the silk thread that enters my room through the blacked-out window and watch it weave its way back outside again,

The thread unfurls across towns, through cities, finding its way over oceans and around mountain passes.

The silk thread stops at each darkened room, reaching inside for every soul silently suffering, battling nightmares that don’t end when woken

These souls cling to the thread as well

And now I, back in my corner of the world, back in the corner of the room, of the bed, can feel it

The thread pulses with strength, is warm with love, and gently sparks with hope

Because when I hang onto that silk thread, I am not alone.

Alice Barrett, 11 May 2025

The solidarity we've seen in recent weeks - from MPs, celebrities, researchers, clinicians, journalists, and artists - is a reminder that this movement is growing, and that people are paying attention. When voices come together from inside and outside our community, they strengthen the push for change.

But solidarity only matters if it leads somewhere. We need action: proper funding, evidence-based care, and an NHS that is there for people with ME and Long Covid.

Alice’s poem speaks of a silk thread connecting us all - and we couldn’t agree more. That thread is built through solidarity, action, and persistence. Keep speaking up.

We’ll see you next week.