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

🙌 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

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

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 🙌

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...

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) “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.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.

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.’

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?

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 🙌

Excellent blog on the 2025 Big Survey by @kacheston.bsky.social which explains how the info shared by #pwME will be used & how it helps all pwME The survey is a great opportunity to share your experience & recommendations & generally rant if you need to 🔗📋👇 www.actionforme.org.uk/research-cam...

Fantastic to see this post from our v. own @kacheston.bsky.social on the @thereforme.bsky.social Substack. If you live with ME or Long Covid with ME symptoms, there is still time to take part in the @actionforme.bsky.social Big Survey (closes 27 Jan) Take part here: tinyurl.com/2025-Big-Sur...

Thank you so much @thereforme.bsky.social for publishing this post about @actionforme.bsky.social's Big Survey! The Big Survey is open until 27 January. If you're yet to fill it out, we would love to hear from you! www.actionforme.org.uk/research-cam...

Our #ThereForME blog is back! Today, Dr Katharine Cheston writes about her collaboration with @actionforme.bsky.social on the 2025 Big Survey. Katharine explains why large-scale charity surveys are so important for ME research and treatment, and how you can get involved. Link in next post 👇

December 24th. Thank you for being #ThereForME, Rosie Barrett! Rosie is a carer to her sister Alice and was featured this year by BBC Spotlight championing our #FundThePlan campaign. Nominated by Lauren. ✨

Bonus points if you noticed our post for Dec 21 was missing! Here it is now: Thank you for being #ThereForME, Dr @binitakane.bsky.social ! Binita is a private consultant w a special interest in ME & Long Covid, a #ThereForME Ambassador + fierce advocate for pwME. Nom'ed by @alexisme.bsky.social#ThereForME#ThereForME✨

December 23rd. Thank you for being #ThereForME, Jenny Wilson! Jenny is a long-standing advocate for people with ME and plays a pivotal role organising Dr Weir’s ME clinic. Nominated by Phoebe. ✨

The decades long neglect of #pwME is a great injustice and we are all poorer for it. I’m proud to be one of the 72 LibDem MPs who have fought to address this. And I know that I’m not alone in committing to continuing the fight to see real change in 2026.

I nominated Sir Ed because the support ME and Long Covid communities have received from the Lib Dems has been exemplary. This ‘eMEy’ award is a testament to the culture of the party and its parliamentarians

When coming down with #ME 4y ago I felt betrayed and dissapointed by all parties in the UK like never before in my life. I have never been a 'one-issue' voter but the treatment of #pwME/LC is so scandalous and criminal, so disabling, that everything, including politics, reduced to that... 1/3

December 22nd. Thank you for being #ThereForME, Sir Ed Davey & the Lib Dems @libdems.org.uk! This year the LibDems have been key players championing the need for improved support for people with ME in parliament. Nominated by Jonah Weisz @weiszguy.bsky.social#ThereForME✨

December 20th. Thank you for being #ThereForME, Dr Jo Greer! Jo is the founder of the Red Leaf Creative Collaborative, a group of creatives that shares artistic expressions of hope for #PwME. Nominated by Shirley (and everyone at The Red Leaf Creative Collaborative). ✨

December 19th. Thank you for being #ThereForME, Joan McParland MBE! Joan is the founder and coordinator of Hope 4 ME & Fibro Northern Ireland. Nominated by Rebecca. ✨