UK DHSC delays commissioning of services for the most severely affected The 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. This is said to be due to wider organisational changes within the NHS. #ThereForME have produced a PDF briefing on the topic. PDF | Thread

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

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Screenshot from Science for ME update

#MEcfs #PwME #SevereME @thereforme.bsky.social

Hi Carole - the info we received stated that the decision was made due to the impact of changes to ICBs, abolishing NHSE. As we mention in the briefing, the previous minister did commit in parliament that NHSE being dismantled wouldn’t impact this work. We’ve relayed our concern about this to DHSC.

ETA: We've now got a briefing up here - for people reaching out to MPs 👇

We're calling on DHSC to put in place robust interim measures to make sure that specialised support and, crucially, patient safety, don't need to wait until April 2027 and beyond.

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The patients who will suffer are some of the most vulnerable in society, They are facing yet another year without NHS care.

We're committed to advocating on their behalf - and we are very clear that this is not good enough.

cc @rthonwesstreeting.bsky.social @sharonhodgsonmp.bsky.social

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This is despite a ministerial recognition in the Delivery Plan of "tragically avoidable" deaths of people with ME in England and a commitment to make these "never events".

Like many patients and carers, we're asking: where on earth is the urgency?

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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.

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#ThereForME #ThereForME is a campaign founded by Karen and Emma, two carers for partners with very severe ME/Long Covid. #ThereForME is calling for an NHS that's there for people with ME and Long Covid. Follow ou...

www.thereforme.uk/p/7ee44d78-5...

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 👇

UK #ThereForMe Guest post from Tessa Munt MP The Liberal Democrat MP for Wells and Mendip Hills in Somerset and current chair of the APPG on ME covers the case for change for people with ME/CFS, the need for government action, and how people can get involved.

#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 🙌

The case for change for people with ME — and how to get involved A guest post from Tessa Munt MP

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

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 👇

Episode 8: "Treating ME and Long Covid with Dr. Binita Kane" | HLTH Chat Podcast YouTube video by HLTH Compliance

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?...

Email your MP about Long Covid Awareness Day

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!

App Usage Questionnaire - Sheffield ME & Fibromyalgia Group and ME Local Network This short questionnaire gathers experiences of people with chronic illness, using apps to help manage or track symptoms. We will produce a report about patient experience of using apps in order to pr...

✍️ 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: Six months since the publication of the Final Delivery Plan for ME January 22nd marked six months since the publication of the government’s new Final Delivery Plan for ME.

Read more here 👇

www.thereforme.uk/p/campaign-u...

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.’