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 🙌
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...
"Those with ME have experienced years of being treated unjustly. Sometimes, it feels endless and irreversible. But remember this: getting things done in parliament starts with having MPs on your side." Tessa Munt MP. New #ThereForME Substack post.
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?...
Can you spare one minute to support children with Long Covid today?
Use our template to write to your MP.
longcovidkids.eaction.org.uk/awarenessday
#LongCovidAwareness #ChildrensRights
@lcawarenessint.bsky.social @longcovidsupport.bsky.social @longcovidphysio.bsky.social @longcovidsos.bsky.social
UK #ThereForME “Six months since the publication of the Final Delivery Plan for ME” The UK government policy paper was published on 22 July 2025. In a blog post #ThereForME summarise developments since then: “What progress has been made? Are there signs the plan is making a difference? Today we’re taking a whistlestop tour of the latest developments in three priority areas.” Blog | Plan | Thread
(UK) “Six months since the publication of the Final Delivery Plan for ME” blog post by by #ThereForME @thereforme.bsky.social
Links:
www.thereforme.uk/p/campaign-u...
www.gov.uk/government/p...
Screenshot from latest Science for ME weekly update
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis
As one of Tom's constituents, I'm so pleased about this! 😊
He and his staff have always been responsive when I've contacted them about ME. He also quoted my @thereforme.bsky.social piece about having very severe ME in a parliamentary debate in November.
So grateful to him for taking us seriously!
✍️ A short survey from our friends at ME Local Network!
They are looking at the experience of people with chronic illness on using apps to manage or track symptoms.
forms.gle/jsXW5GjJBnxC...
ME/CFS Delivery Plan 6 months on
Empty words and no concrete action
Severe ME patients still being failed, Savannah’s case shows the human cost of inaction. Training uptake is feeble. Research is moving mainly through charities, not government.
www.thereforme.uk/p/campaign-u...
UK #ThereForME co-founder Karen Hargrave writes about applying for Continuing Healthcare funding “For over a year now I’ve been struggling to secure NHS Continuing Healthcare (CHC) funding for my husband James. It’s been a gruelling process, emblematic of the many challenges people with ME face accessing support and ultimately getting the condition taken seriously by the NHS. Today I’m sharing our story, and why I think this is an issue that deserves decision-makers’ attention.”
(UK)
@thereforme.bsky.social co-founder @karenlhargrave.bsky.social writes about applying for Continuing Healthcare funding
www.thereforme.uk/p/why-is-con...
Screenshot from latest Science for ME weekly update
#SevereME #SevereMECFS #VerySevereME
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis
Good write-up from #ThereForME on progress with the #MEDeliveryPlan
I agree. People with ME deserve so much better.
Campaign Update 30: 6 months on from the Final Delivery Plan. What progress has been made? We look at 3 priority areas: - Improving care for severe and very severe ME - Boosting education and training - Accelerating research New #ThereForME Substack post
Today's #ThereForME blog takes stock progress in key areas six months on from the publication of the Final Delivery Plan for ME.
We look at progress in terms of:
➡️ Improving care for severe and very severe ME
➡️ Boosting education and training
➡️ Accelerating research
Thanks to The Times for highlighting Savannah’s story and the critical issue that there is no specialist NHS service for very severe ME. Grateful to Ashley Dalton for our recent brief call but still waiting for progress report re ME Plan commitment to explore such a service, including treatments.
As Karen points out in her blog, the lack of (or extreme difficulty obtaining) CHC funding for people with very severe ME is another failure of the #MEDeliveryPlan.
The Plan simply does not mention it.
Astounding. 😖
A harrowing account of applying for care funding for severe ME
#LongCovid
#ME
'...in a context where the NHS is not equipped to provide James with any meaningful medical treatment, isn’t covering the costs of the care he needs to avoid further deterioration the very least they could do?'
So sorry to read this but so grateful to Karen for sharing it.
‘Let me blunt: everything about how the NHS handles ME is broken. From the perspective of a patient and carer, everything is on fire.’
![A picture of a young woman and man together smiling (Karen and James). Overlaid on the picture: "When I first came across CHC funding it felt like the perfect fit [...] Their initial assessment concluded he was eligible. Yet, one year on both our CHC application and subsequent appeal have been rejected." Karen Hargrave. New #ThereForME Substack post.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:wjbaponwuqichcsh2fiwono5/bafkreifod7x7n4p4nd4i7wresiukfpxc4sb3rewzva7r63te4vpqpioo2m)
A picture of a young woman and man together smiling (Karen and James). Overlaid on the picture: "When I first came across CHC funding it felt like the perfect fit [...] Their initial assessment concluded he was eligible. Yet, one year on both our CHC application and subsequent appeal have been rejected." Karen Hargrave. New #ThereForME Substack post.
In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding.
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇
Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation.
The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?
Panoramic image of the Houses of Parliament and Big Ben under a blue sky. Logos for Action for ME, the ME Association and the APPG on Myalgic Encephalomyelitis appear at the top. Text reads: “APPG on ME update: Annual General Meeting and 2026 schedule”.
The Chair, officers, and members of the APPG on ME stand alongside representatives from the joint-Secretariat, at the group's 2026 AGM.
1/4
📢 APPG on ME announcement
As many of you will already be aware, @tessamunt.bsky.social MP has officially been appointed Chair of the APPG on ME, following the group’s Annual General Meeting last week 🤝
#APPG #MyalgicEncephalomyelitis
⬇️
Yeeee :) new entry by @thereforme.bsky.social with updates from the politics front with the always urgent push for abandoned severe #pwME
Todays #ThereForME blog shares the latest updates from Westminster, as well as our favourite recent spots from the research world and wider community 👩🔬📝
Link in next post 👇
www.thereforme.uk/p/too-ill-to...
A bit about me & my journey living with Long Covid ME in Northern Ireland. @thereforme.bsky.social
Big congratulations to @tessamunt.bsky.social!
Tessa has been an incredible advocate for the community and we look forward to working with her in this new role 🙌
