ThereForME

We're excited to share something we've been working on for a while. ThereForME is now a registered charity! 🥳 1/4

📣Virtual demo for #cleanair and medical care for #PAIS + #ME/CFS! Beth Dobbin recently gave a very powerful interview. We support her demands. Write to Andy Burnham and your local representative! Despite many promises, ME care remains inadequate! 📣 #CallForPublicHealthAction

We’re really pleased that our MP email template has been supported by wider ME organisations via Forward ME 🫶 If you have the energy, you can help support @bethdobbin.bsky.social in her call for ME research funding by writing to your MP. More here 👇

Thank you so much @thereforme.bsky.social ànd @actionforme.bsky.social for producing this useful briefing so quickly - it’s very helpful to have this analysis. And Beth - thank you for promoting all this activity - we can see that you haven’t lost your sprinter’s instincts!

If you have the spare energy/5 mins of time, here is a template to write to your local MP following Beth Dobbin’s letter to Andy Burnham. Let’s try and keep this momentum going!💙 #thereforME #ME #chronicillness #advocacy

Beth Dobbin has written to Andy Burnham to ask for increased funding for ME research. We are working with her to amplify her message, and you can help (if capacity allows). Write to your MP to back her call - to make things easier, we have a template for you. docs.google.com/document/d/1...

We need more research. Might you be able to post about our mini ME research conference taking place in Oxford on 7th November and available on Teams? www.eventbrite.co.uk/e/latest-me-...

Thanks @thereforme.bsky.social! There must be serious review of the government’s inadequate response to #ME, with its cost to us all. Still considering best options to call for including @georgemonbiot.bsky.social proposed public inquiry, Select Committee Inquiry, a Czar or even referral to HSSIB.

The Guardian has published our letter responding to George Monbiot's article about how people with ME are abandoned, dismissed and gaslighted. We point out the inadequate political attention, and call for action from the Health & Social Care Select Committee. www.theguardian.com/society/2026...

Are you keen to share your experiences of adult social care? If you’d be interested to write for us (500 words max), let us know 👇

After two years of amazing work, we’re only just getting started!! Please reshare and donate if you can (link in thread)

Last weekend, alongside representatives from @thereforme.bsky.social, @actionforme.bsky.social and the ME Association, our trustee Jo Dainow had the opportunity to visit the Royal Opera House and experience The Mirrorbox on behalf of Long Covid UK.

In today's update, we share a round-up of what was published to mark Severe ME Day, some of the creative ways people are keeping ME and Long Covid visible year round, and, as ever, a few rays of light. www.thereforme.uk/p/thereforme...

"What does the future hold for people with ME — and crucially, where must ME advocacy go next? The political landscape has changed, and if we want different outcomes, our advocacy has to evolve with it." - Karen Hargrave @thereforme.bsky.social www.thereforme.uk/p/the-missio...

📣 We’re looking for someone with ME/a carer to a PwME who would be interested to write a short piece (500 words) for our @thereforme.bsky.social blog about their experiences of/challenges with social care. Ideally looking for someone in Wales or NI - but can be flexible!

Karen is a founding member of the #ThereForME initiative @thereforme.bsky.social www.thereforme.uk Full video (10 mins) youtu.be/10hCNt6ajSE?...

“He has difficulty with chewing and swallowing… it’s a struggle to make sure that we’re getting the right nutrition, the right hydration into him… basically to be keeping him alive.” @karenlhargrave.bsky.social on caring for her husband James, who developed very severe ME following COVID. #MECFS

Good blog post from Emma Gore-Lloyd of @thereforme.bsky.social Disease prevalence is important, but it's also very difficult to nail down. Designing effective health services requires accurate data. #MECFS #LongCovid #MEDeliveryPlan www.thereforme.uk/p/how-many-p...

‘We have a data problem’ - how many are there of us? #LongCovid #ME FYI @yvettecooper-mp.bsky.social

The NHS Modernisation Bill going through Parliament will set the stall for the NHS for coming years. By tabling amendments I’m looking to address specific issues for #pwME and similar conditions. First target… the Single Patient Record (SPR)… 🙏🏽 @actionforME.bsky.social for sharing its thinking.