ThereForME
@thereforme.bsky.social
Working to improve support, understanding & quality of life for people affected by ME & related conditions through evidence, awareness & advocacy. www.thereforme.uk
"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...
The mission hasn’t changed — but our advocacy must
Looking ahead to year three of #ThereForME
thereforme.uk
"The political landscape has changed, and if we want different outcomes, our advocacy has to evolve with it." In today's update our co-founder @KarenLHargrave shares her reflections going into year 3 of #ThereForME. Link in next post 👇
📣 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?...
#ThereForME | Karen Hargrave | Substack
#ThereForME is an initiative founded by Karen & Emma, two carers for partners with very severe ME. We work to improve support, understanding & quality of life for people affected by ME & related condi...
thereforme.uk
“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...
How many people in the UK are affected by ME?
We have a data problem
thereforme.uk
ThereForME@thereforme.bsky.social · 2w agoYou may have noticed there's a new PM in town! Today's post from our co-founder @GoreLloyd on our #ThereForME blog outlines a problem his government will inherit when it comes to ME. Houston, we have a data problem. Link in next post 👇
You may have noticed there's a new PM in town! Today's post from our co-founder @GoreLloyd on our #ThereForME blog outlines a problem his government will inherit when it comes to ME. Houston, we have a data problem. Link in next post 👇
Today's #ThereForME update unpacks the latest from Westminster. We share what’s been happening, why it matters for our community, and our pick of recent research news. Link in next post 👇
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.
Today's #ThereForME guest blog is from Jemma Bella, a content creator whose posts about living with Long Covid have resonated with hundreds of thousands of followers. Jemma reflects on how she began sharing her experience online & why her content resonated. Link in next post 👇
Thanks for very helpful roundup of #MEAwarenessMonth activities, announcements, and media appearances - great to see so many initiatives from #ME organisations. I’m very aware of continuing concerns re health & care provisions for severe and v severe ME, & need for substantive investment in research
ThereForME@thereforme.bsky.social · 2mo agoLink here 👇 www.thereforme.uk/p/thereforme...
We're back for our first #ThereForME Update in a while! Today we're sharing a roundup from ME Awareness Month (AKA May 📅) - from World ME Day events, to research announcements and ME in the media. Link in next post 👇
Description from @scienceforme.bsky.social weekly update: An interview with Carolyn Leary, the newly appointed chair of Forward ME by Karen Hargrave, #ThereForME. Carolyn Leary is carer for her daughter with ME/CFS. She describes making Forward ME more proactive and inclusive. #MEcfs #PwME
ThereForME@thereforme.bsky.social · 2mo ago🙌 Our #ThereForME blog is back from hiatus! In today's post, @karenlhargrave.bsky.social interviews Carolyn Leary, the new chair of Forward ME (a coordinating body for ME orgs). Carolyn explains how she got into ME advocacy, what you need to know about Forward ME and her future plans.
🙌 Our #ThereForME blog is back from hiatus! In today's post, @karenlhargrave.bsky.social interviews Carolyn Leary, the new chair of Forward ME (a coordinating body for ME orgs). Carolyn explains how she got into ME advocacy, what you need to know about Forward ME and her future plans.
“Very severe ME is quite a unique condition in that there is effectively no NHS specialist services that are available for someone in James’ position.” Our co-founder @karenlhargrave.bsky.social speaks to @theipaper.com about the financial cost of supporting a loved one with very severe ME.
I’m so aware that #WorldMEDay is painful for many, bringing home how tough it is to have #ME, and the seeming lack of progress. Please be reassured that many of us in Parliament do care, and are working at bringing about meaningful change. Change is inevitably slow, but I’m really encouraged.
Today is World #ME Day. My thoughts and solidarity are with everyone dealing with Myalgic Encephalomyelitis, aka ME or MECFS. Like millions of others with long COVID, I suffer from it. Update from @thereforme.bsky.social @emmagl.bsky.social @karenlhargrave.bsky.social 🤍 #MEcfs #MillionsMissing
World ME Day 2026
Standing with the ME community today and every day.
thereforme.uk
We aren't running a campaign this year for World ME Day - but people affected by ME, and the immense suffering faced every day, are on our mind today as much as ever. We’ll be looking at how we can make the most of opportunities when we're back from hiatus later this month 💙
This week is #MEAwarenessWeek. Featured on the hub, a briefing paper produced by @thereforme.bsky.social on delays to establishing NHS care for very severe ME. www.pslhub.org/learn/improv... #patientsafety
Delays to establishing NHS care for very severe ME (a briefing paper by #ThereForMe, March 2026)
It is estimated that around 1 in 4 people with Myalgic Encephalomyelitis (ME) are severely or very severely affected. In this briefing paper (attached), campaign group #ThereForMe explain that due to…
pslhub.org
The UK Department of Health and Social Care now expect that work will begin in April 2027 to start the process of commissioning a service for those with very severe ME/CFS ugc.production.linktr.ee/8dd80874-c0a... Screenshot from Science for ME update #MEcfs #PwME #SevereME @thereforme.bsky.social
This week we were informed by DHSC, alongside other organisations, that DHSC and NHS England have delayed discussions on commissioning a specialised service for very severe ME until April 2027. This means yet another year without NHS care for people with very severe ME. (1/3)
This week we’re celebrating the work of other advocates, researchers and organisations. Read this week's #ThereForME post to find out more about developments in research, Long Covid Awareness Day and a #ThereForME hiatus. 🔗 in next post 👇
#ThereForMe @thereforme.bsky.social Guest post from Tessa Munt MP @tessamunt.bsky.social www.thereforme.uk/p/the-case-f... Screenshot from Science for ME weekly update #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
It is heartening to know that we have an ally in this role who understands the decades of neglect faced by the #ME community. I sincerely hope you can meet with @tessamunt.bsky.social very soon and that we will see a step change in government actions on #ME and Long Covid. #ThereForME
💙🙌🏽 so needed. Humbled and proud to see this. #bethechangeyouwishtoseeintheworld #thereforME #fundtheplan #MyalgicEncephalomyelitis
We look forward to working with @sharonhodgsonmp.bsky.social in her new role! As a long-standing supporter of people with ME, we’re delighted to see Sharon taking on this important position 🙌
Sharon Hodgson MP@sharonhodgsonmp.bsky.social · 5mo agoI am honoured to have been appointed as the Minister for Public Health and Prevention in the Department of Health and Social Care. 🌹🩺
From @tessamunt.bsky.social, making the case for an almost extinct type of politician that would hear, believe and take action when faced with one of the biggest institutional injustices in 50y. Hard to believe for #pwME, but she is living proof they exist 👏 www.thereforme.uk/p/the-case-f...
The case for change for people with ME — and how to get involved
A guest post from Tessa Munt MP
thereforme.uk
We're delighted to share today's #ThereForME blog from friend of the campaign @tessamunt.bsky.social. In her blog, Tessa lays out the case for change and how to get involved. Link in next post 👇
Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe #LongCOVID and Myalgic Encephalomyelitis (#ME). 🧵 youtu.be/pk00btt7CVs?...
Episode 8: "Treating ME and Long Covid with Dr. Binita Kane" | HLTH Chat Podcast
YouTube video by HLTH Compliance
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