Final Delivery Plan for ME/CFS out today
#ThereForME's response to the Delivery Plan's publication
We’ve got a short update for you today to let you know that the long awaited Delivery Plan for ME/CFS has just been published. Tomorrow we’re celebrating #ThereForME’s first birthday, so a big thanks to the Department of Health and Social Care for the early birthday present.
We’ll be back in your inboxes tomorrow with a very special one year anniversary post. For now, you can read on for our response to the plan’s publication.
After years of waiting we’re pleased to see that the Final Delivery Plan for ME/CFS has at last been released. The Plan includes some positive first steps in the right direction, which could lead to improvements over time. Yet we would have liked to see it go much further and remain disappointed that targeted funding has not been announced alongside it.
This is about more than words on paper: it is about the people lying bedbound in darkened rooms across this country, who desperately need safe NHS care and research to accelerate treatments. People with ME, and those who care for them, have waited too long and deserve a clear, properly resourced roadmap towards a better future. While the Delivery Plan offers a first step, we hope to see greater prioritisation and proper resourcing as we move into its implementation.
#ThereForME
#MECFS delivery plan:
- fails to fund a blood screen for ME/CFS, which has been blood-banned since 2010
- fails to fund a biomarker program to accelerate a diagnostic blood test for ME/CFS
- Fails to fund a clinical trials network to accelerate biomarker-driven treatment research
It was planned to fail.
If we don't focus on what needs to be done to change things on the ground, nothing changes on the ground.
The only thing that is going to help severe ME/CFS patients is giving doctors a blood test they can run. So they can see with their own eyes that there's something that can be measured.
Until we demand a ME/CFS blood test every day, in every way, nothing will change.
I’m grateful for the effort that ThereForME and others have put into this plan — it means a lot to see our realities acknowledged. But I can’t help feeling sad, because without committed funding, it risks becoming another well-intentioned gesture that recognises the problem without truly addressing it.
I’m sorry if my comments seem pessimistic, but I’ve watched NICE revise its guidelines dramatically… and still, nothing has changed on the ground. The language may have shifted, yet the underlying push for graded exercise remains — repackaged but still out of step with our reality.
What other disease, classified as neurological by the WHO in 1969, has spent over half a century fighting just to be seen, treated, and researched properly? It’s appalling that so many doctors still view ME through a psychological lens. And it’s heartbreaking that for some, the only perceived way out of this torment has been through suicide — something I have personally faced.
We either act now, or we continue to let ME lead to cardiac complications, malnutrition, and systemic failure — because our bodies can’t survive indefinite neglect.
Thank you again for everything you’re doing. I truly hope we’ll live to see the day they finally #FundThePlan.