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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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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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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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.
The post year has shown that shifting the government to provide a response proportionate to the needs of the 1.35m #pwME is a tough call, but I’m looking forward to working strategically with the group to bring the meaningful change that has been denied us all for too long.
Honoured to be elected as Chair of the APPG ME today. I’m grateful to have @JoPlatt.bsky.social continue to serve as an officer, facilitating continued coordination with the APPG Long COVID, and the support of @actionforme.bsky.social and @meassociation.org.uk through providing the Secretariat.
We had a small social media scheduling oops yesterday 🫣
So, better late than never - let’s show @binitakane.bsky.social some love! 💙
Thanks for being #ThereForME as a doc + patient advocate. We’re very proud to have you as an Ambassador, Binita! 👏👏
Thank you Ed Davey and the @libdems.org.uk for being #ThereForME this year!
Your support has meant the world to us at @thereforme.bsky.social and for people with ME across the UK ⭐️💛
I love this photo, Sally! Thanks for everything you do.
Advent Reflection for the ME Community Advent is a season of hope, peace, joy, and love - a time to prepare for the coming of the Saviour, Jesus Christ. Yet for those of us with ME, Advent and Christmas often bring other emotions too: sorrow, isolation, and the sharp reminder of all we cannot do. While others gather to celebrate, many of us remain in darkened rooms, unable to tolerate light, noise, or company. It is then that the loneliness of illness feels most acute and can feel overwhelming. And yet, Advent is precisely about light shining in darkness, and hope being born when all seems lost. (cont'd)
As a fifty-year veteran of ME, I have witnessed two parallel stories unfold. One is the steady progress of science, gradually uncovering some of the biological roots of this devastating disease during the last quarter of the 20th century. The other is a darker story - of denial, distortion, and stigma, as powerful voices from 1988 onwards sought to redefine ME as merely psychological, and bury the research and knowledge gained. This falsehood caused profound harm: patients were abandoned, disbelieved, and sometimes destroyed by the very systems meant to protect them, while parents endured false accusations of FII. (cont'd)
But now, the truth is coming to the fore again, and the knowledge, long buried, is being regained. A new generation of scientists is rediscovering the evidence; silenced voices are being heard. For the first time, there is genuine, evidence-based hope - of biomarkers, of understanding, of treatments to come. Though some still cling to the old dogma, the medical darkness is giving way to dawn. (cont'd)
This Christmas, as we await the coming of Christ - the Light of the World - we also wait for the healing of truth and compassion. The hope of Advent is not naïve; it is forged in endurance and kept alive by faith. Let us hold fast to that hope - that soon, light will shine fully into this darkest of medical chapters, and no one with ME or Long Covid will be left unseen, unheard, or disbelieved again. With love to all in the community, Jenny
Our #ThereForME Advent Calendar wonderful people who have been #ThereForME starts tomorrow! To start us off, we'd like to share this reflection kindly written for us by Jenny Wilson, who many know as a fierce advocate for the community working closely with Dr Weir.
Our latest @thereforme.bsky.social blog includes our reflections on the Final Delivery Plan for ME and a rundown of some of the media coverage.
We’re taking a short campaign break in August to give our team time to rest and regroup. We’ll be back on it in September!
We're still waiting for it go online...
After 3+ years of waiting the Final Delivery Plan for ME is being released today.
Our comment 👇
You were both excellent! Thank you 🙏
I'm so grateful for the support of the other carers I know. It means the world to be understood and to be able to be there for each other. I'm a little less lost with them in my life 🙏💙
It’s official: the @libdems.org.uk are #ThereForME ! 🧡
Incredible to see every single one of the Lib Dems’ 72 MPs signing this letter led by @tessamunt.bsky.social ahead of World ME Day.
They’ve joined our call to @rthonwesstreeting.bsky.social and @ashleydaltonmp.bsky.social to #FundThePlan
Was hoping to see my MP on this list.
EXC - 42 MPs have signed a letter to Keir Starmer saying the disability cuts are “impossible to support”
PM is facing biggest rebellion of the parliament over welfare vote
MPs call for pause and rethink until fuller impact assessments can be done in autumn and warn disabled people are frightened
If you're in England, Wales, or Northern Ireland, living (or caring for someone) with Long Covid or ME/CFS and receiving PIP, UC, or ESA, we want to hear from you.
👉 Take our 5-10 min survey: forms.gle/rrvNm7G1bDRn...
Text in graphic says: Survey: have your say on welfare benefits reform. Calling people with long COVID and ME/CFS At the bottom are 4 logos - long COVID support, action for ME, ME local groups network and #ThereForME
The UK government is proposing significant changes to welfare benefits. These reforms could profoundly impact individuals with Long Covid and ME/CFS.
We've launched a survey to gather your insight 👇
Great to hear our @oonagh_cousins and #ThereForME Ambassador @binitakane.bsky.social on @bbc5live.bsky.social this morning!
Clip here courtesy of @abrokenbattery.bsky.social👇
youtu.be/9Wh6lIEYZcg?...
Powerful story on @bbclooknorth.bsky.social about Dr Alexis Gilbert.
“"I've lived like this for two or three years and the thought of living like this for another two or three years is completely overwhelming, never mind a decade or longer,"
www.bbc.com/news/article...
📢 MEDIA OPPORTUNITY
Do we know anyone who has borrowed money, taken on debt or sacrificed basics to finance private care for ME or Long Covid - and who would be able to talk to media about it?
We can share more details by DM.
We’ve been so moved seeing the #FundThePlan videos over the past few weeks.
Now, we want to get our call to #FundThePlan out far and wide. Here’s a little something we’ve put together for the campaign.
We’d love your help making some noise with it 🙏
Today's #ThereForME blog post is from @nickbenton.bsky.social, who has experienced some improvement from Very Severe ME.
He shares his various experiences with health care and talks about the need to be #ThereForME for those too sick to advocate for themselves.
www.thereforme.uk/p/stuck-at-t...
![Script: Dear Wes & Ashley,
My name is [...] & I’m [...]. (Say why this matters to you.) In the coming months, the government is due to publish a new delivery plan for ME, aiming to boost research and strengthen care. But so far, no additional funding has been allocated to it. Public finances are tight - but in the world of government spending we are talking about modest sums. Just £20m a year behind the plan would make an enormous difference. People with ME are calling on the government to invest in their future and reverse generations of neglect. I’m standing with them to say please, fund the plan.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:wjbaponwuqichcsh2fiwono5/bafkreig2fltpxn3gkldyxtb34naof2t36s6tqmvsyxyjkc6qnko3qmlgri)
Script: Dear Wes & Ashley, My name is [...] & I’m [...]. (Say why this matters to you.) In the coming months, the government is due to publish a new delivery plan for ME, aiming to boost research and strengthen care. But so far, no additional funding has been allocated to it. Public finances are tight - but in the world of government spending we are talking about modest sums. Just £20m a year behind the plan would make an enormous difference. People with ME are calling on the government to invest in their future and reverse generations of neglect. I’m standing with them to say please, fund the plan.
We’d love your help asking allies in your life, and the wider world, to get involved and stand with people with ME as we ask the government to #FundThePlan.
We’ve even got a new template script for the occasion 👇
#FundThePlan ally edition. #ThereForMe
Get involved! Friends, relatives, allies please post a video of yourself asking Wes Streeting and Ashley Dalton to #FundThePlan. We have a template you can follow and example videos. Use the hashtag #FundThePlan. Tag Wes, Ashley, #ThereForMe
We’ve been amazed watching the incredibly powerful #FundThePlan videos being shared by people with ME and carers.
It’s clear PwME want change. Now we’re asking allies, whether friends, healthcare workers or public figures, to join us.
It’s time for #FundThePlan: Ally edition
Dear @wesstreeting.bsky.social and @ashleydaltonmp.bsky.social. My partner is missing from his life.
Please, #FundThePlan 💙
#MyalgicEncephalomyelitis
#LongCovid
#lyme
@thereforme.bsky.social
