#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

[MrMagoo]

this mirror being held up to those around us by those who are able to be heard and get away with it is so important. Unpicking and stepping around those incorrect understandings of quite what the illness is would be another one I would add to the list too.

I do think that this type of thing really is something that we could focus on more - being careful for it to strike the right tone obviously

There just needs to be some voices saying - “rest, honestly you really do need to” because it’s never explicit in the 10,000 versions of “how to pace” which get endlessly tinkered with.

 

[TiredSam]

Come the next Olympics, we will celebrate the medalists for their extraordinary performances. But let’s also create space to honour something much less visible, yet no less demanding, disciplined, or full of sacrifice: the work of rest for those with chronic illness.

Medals all round at S4ME I think

 

[Binkie4]

#There4ME @Oonagh Cousins

Deeply disappointing news in @thetimes confirming further delay to the Delivery Plan for ME. Once again #PwME go to the back of the queue.

Small ray of light to see @HelenMorganMP and the @LibDems standing up for #PwME

Quote in next post

 

[Binkie4]

#There for ME 1/7/25

Substack article, from an email:

Campaign Update #22: Seeds of hope​

We're chasing seeds of hope today despite some frustrating Delivery Plan news

# There for ME​

I’m going to be honest: I (Karen) have been feeling a little defeated lately. Caring responsibilities have been hard, work has been busy, I’ve been paying the price lately for overdoing it and the state of the world certainly doesn’t help. Just a quick look at the news right now (did someone say welfare reform?) is enough to make the world’s biggest optimist want to curl up in a ball and hide.

It’s been a tough time lately on the ME beat. Today we’re bringing you a frustrating update on the long awaited Delivery Plan for ME. But we also wanted to bring some seeds of hope to your inboxes. In case you hadn’t clocked it yet, #ThereForME is a campaign grounded in optimism. Not naive hope, but a belief that - given the right strategy and circumstances - change is possible.

We’ll always be honest with you about the challenges we face. It’s hard not to feel defeated right now but we’re doing our best. We’re breaking down the latest on the Delivery Plan below and sharing why we’re not giving up just yet.

Delay, delay, delay​

Yesterday The Times broke the news that the Delivery Plan for ME has been delayed for the third time since the Labour government came to office. Just one month ago health minister Ashley Dalton claimed that “it is a priority for the Department to publish the final ME/CFS delivery plan by the end of June 2025”. Yet, here we are on 1 July, with no plan, no new date for publication and a creeping sense that perhaps it wasn’t a priority after all.

The reason given for the delay was the publication of the government’s new 10 Year Health Plan. While it’s not surprising that the Department of Health would want to clear its communications schedule for the launch of its flagship health strategy, one would think that this clash in dates could have been foreseen.

When you put together this lack of thought, the relentless delays and a refusal to guarantee funding, it’s hard not to see people with ME lurking somewhere near the bottom of the government’s priority list. Yes, there’s a lot going on in the world right now (not least the threat of global warfare). But we’re talking up to as many as 1.3 million people with a limited future, no treatments and little hope that things will get better. As the government piles on delay after delay, we can’t help asking: are our lives really worth so little?

#ThereForME has been represented on the Task and Finish Group for the Delivery Plan, so all we can tell you is that we’ve seen a fairly advanced draft and yes there is a plan. It really does exist. But we’re certainly none the wiser as to when it’ll be seeing the light of day. We’ll keep you updated if and when we find out more.

Seeds of hope​

So what was that about seeds of hope? We were pleased and reassured to see that we’re not the only ones noticing the total lack of urgency signalled by this latest delay.

You may remember that in May all 72 Lib Dem MPs wrote to the Health Secretary to express their concerns about a lack of funding for the Delivery Plan. Last week #ThereForME Advent Calendar star and Lib Dem Chief Whip Wendy Chamberlain shared in a blog post that they had received a “deeply disappointing response” from the government. She explained:

“People with ME have waited decades for action. They deserve more than sympathy - they deserve real, funded change. The Liberal Democrats will keep fighting to make that happen.”

Photo

With this in mind, we were delighted to see the Lib Dems’ Health Spokesperson Helen Morgan quoted in The Times’ reporting on the Delivery Plan delay, making crystal clear where the Lib Dems stood on the issue:

“[People with ME] have faced inadequate care, scant research funding, no treatments and little hope of a better future […] Further delay to the Delivery Plan for ME is inexcusable. People with ME are right to feel that improving this situation is not a priority for this government. The government must think again, publish the plan without delay and allocate it the resources it needs to make a real difference.”

While the delay is undoubtedly a setback, we’re finding solace in the solidarity of a major UK political party firmly in our corner. It’s encouraging to see the Lib Dems holding the government to account and taking them to task for broken commitments.

We’re also taking a moment to note how much progress we’ve seen on this front since we started our campaign almost one year ago. To steal some wise words, the arc of history is long, but it bends towards justice - and we’re beyond pleased to see the Lib Dems joining this specific fight. Which party will be next?

To cap off the Lib Dem love-in, we’ll leave you with some final words of wisdom from #ThereForMP extraordinaire Tessa Munt:

“Thank you for all your encouragement as I’ve spoken out on ME. I do appreciate it.

The past few weeks have brought disappointments. The Health Department’s failure to publish the Delivery Plan after so many promises is unacceptable. And the 72 LibDem MPs who wrote about ME to Wes Streeting received a disappointing reply (which I will publish).

But these set-backs have galvanised our determination. Wendy Chamberlain’s recent post reaffirms her commitment. And last week I met with Helen Morgan MP, the LibDem Spokesperson on Health and Social Care, who confirmed that she now sees ME firmly as an issue that the LibDem parliamentary party will collectively speak on. To take from a quote that she supplied Sean O’Neill for his article in The Times, ‘We want people with ME, and their carers, to know that the Liberal Democrats are on their side.’

So, please be assured, your long, long struggles are noted, and I and my colleagues will do what we can to shake this government out of its complacency.

Thank you again,

Tessa.”

edit: Thanks to @Trish for helping getting it online.

 

[Jonathan Edwards]

But offset by very positive news on the only bit that was going to matter - research - in terms of the Edinburgh/AfME initiative with MRC.

 

[Utsikt]

I’m unable to see most of the text from @Binkie4 ‘s post in dark mode, so here’s the link to the substack article. I know the link is shared in the post above, but the text is black on black for me. Mod note - hopefully better now

Campaign Update #22: Seeds of hope

We're chasing seeds of hope today despite some frustrating Delivery Plan news

substack.com

 

[Trish]

The latest Substack article from #ThereForME is provided by Long Covid Advocacy:

The Tiger Who Came to Tea… and stayed​

The severity paradox in ME and Long Covid​

LONG COVID ADVOCACY
JUL 08, 2025

The experience of Severe or Very Severe ME, either personally or through family connection, changes one irrevocably.

Any degree of severity is profoundly life-altering. There’s nothing mild about ‘mild ME’, where you lose the ability to live an active life. If we take an analogy from ‘The Tiger Who Came to Tea’ by Judith Kerr, it feels as if the tiger came for tea and ate all the sandwiches and buns… until there was nothing left.

Yet, an inverse relationship occurs in ME. The greater the need, the fewer interventions one receives. The more the illness restricts your daily life, the less one is believed. We see a severity paradox, where injustice escalates fast.

More at link

 

[bobbler]

The latest Substack article from #ThereForME is provided by Long Covid Advocacy:

The Tiger Who Came to Tea… and stayed​

The severity paradox in ME and Long Covid​

spot on. I hope all those reading it who don't have severe/very severe ME can actually take all these points truly onboard. It is certainly light enough vs what they are having to try and encapsulate that there isn't an excuse in my mind.

There is a lot of further detail needed to add to bring it alive one day (and that's when we get the whinging and excuses or silencing just being instinctive from too many, including pwme being as bad as anyone else often because of that license thinking you've 'got the same' or suffer too gives, and the old cliche in this article of 'don't scare me in case I end up like you one day' etc) - I hope that they get there.

It's hard to describe what a relief in itself it would be just to have it well-described. When you've lived a life that is nothing like the being able to pace yourself away from it fatigue and little routine stuff that you've never had the privilege of working but that's what speaks 'for you' it is hard to describe how even if nothing changed and you are still stuck away from society just not being despised and talked about in certain ways, or having people frustrated when you dare to 'be present' because they don't realise it is them not articulating their issues with it being inconvenient for them, not you, it is a very different illness and life path with limited moments of safety in it.

 

[SNT Gatchaman]

Very well articulated.

 

[Binkie4]

Very well articulated.

I agree @SNT Gatchaman. I am very impressed at the 'There for ME' substack posts especially at the use of language and development of a language appropriate for ME. I haven't seen ' disease prestige' used before, although I have come across 'hierarchy of illness', not used here). We with ME certainly have the lowest prestige and are lowest in the hierarchy.

 

[SNT Gatchaman]

I haven't seen ' disease prestige' used before

Here's a thread from 2022 Exploring invisibility and epistemic injustice in Long Covid—A citizen science qualitative analysis of patient stories from an online Covid community (2022)

Andy had quoted in that thread —

Invisibility and epistemic injustice are not unique to any one illness yet can be linked with other diseases shown to have low ‘disease prestige’,28 which are characterized by not being organ-specific, do not have objective diagnostic signs and efficient therapeutic options are not always available.12 Other invisible illnesses include fibromyalgia, endometriosis, depression, chronic pain and depression yet the most commonly associated with Long Covid is the similarity in experience to ME/chronic fatigue syndrome (CFS).2, 24, 27

[28] is Stability and change in disease prestige: A comparative analysis of three surveys spanning a quarter of a century (2017) which is not open access, though is on SciHub, and might warrant a thread.

Also —

Referring to one condition as COVID-19-induced and another as medically unexplained contributes to what has been referred to as the “prestige” of diseases (here and here). Long COVID becomes somehow more worthy or valorous than say a “banal” chronic fatigue or medically unexplained symptom, historically at the bottom of a hierarchy of diagnoses.