#ThereForME Update 34: The mission hasn’t changed — but our advocacy must
Looking ahead to year three of #ThereForME
We’ve had plenty of reasons to reflect lately — in our #ThereForME team and the wider world: we have a new Prime Minister and Health Secretary, a couple of weeks ago it was the first anniversary of the Final Delivery Plan (an anniversary that passed largely unnoticed), and our #ThereForME team celebrated our second birthday.
There have been notable changes in the two years since we founded #ThereForME: we’ve seen growing cross-party recognition that things need to change for people with ME; studies like DecodeME have blazed a trail that has begun to reshape ME research; and we’ve seen noticeable shifts in how the media has covered ME.
But in other ways, far too little has changed. The central issues that inspired our work remain stubbornly persistent: NHS care for people with very severe ME remains at best absent, at worst unsafe; research remains underfunded; treatments remain out of reach.
What does the future hold for people with ME — and crucially, where must ME advocacy go next? The political landscape has changed, and if we want different outcomes, our advocacy has to evolve with it.
It’s the economy, stupid
A golden rule for advocacy is that, if you’re not getting the outcome you want, you’re not going to get far complaining that decision-makers aren’t getting the message. Not getting what you want doesn’t necessarily mean you’ve been getting it wrong, but it should always prompt recalibration. Why isn’t the message landing? How do we need to pivot?
There are many reasons why change for people with ME remains so elusive — many of them structural. But there’s one unavoidable fact that sits across it all: many of the changes we want — research funding, medical education, improvements to NHS services — cost money. And right now Britain is short of cash.
Looking ahead, the new government is facing a tough budget and, most likely, an upcoming spending review where it will be looking to make savings across the board. How do we as advocates make progress in a tough economic context, which looks unlikely to improve in the immediate future?
We can’t ignore this context or wish it away. We need advocacy that is economically literate. Our advocacy needs to speak the language of the Treasury, not just the Department of Health. Where there are gaps in the evidence base, we need to fill them. Where there are gaps in our understanding, we need to bring in experts. When our most recent assessment of the economic impact of ME is over a decade old, and pre-dates the pandemic, are we really so surprised that our messaging isn’t breaking through?
Crucially, however, the strongest case for investing in ME isn’t only the economic cost of ignoring the issue. It’s making the case that investing in ME research, treatments and care will help the government solve problems it is already trying to solve.
From social care to welfare reforms, we need to think creatively about the government’s priorities. We need to make the case that investing in tackling ME can be part of the answer. Our new government has spoken about preventing societal challenges by intervening earlier. If that’s where the government is focused, that’s where our advocacy needs to be too.
Setting the agenda
We thought about publishing a one-year retrospective of the Final Delivery Plan, but frankly there was little to say that hasn’t already been said (and indeed, that we didn’t say six months ago).
There has been some slow, steady progress: a new NHS template service specification is in the works and the government announced a £4.75 million investment in the Sequence ME study. Some key areas — exploration of a specialised service for very severe ME and a long-promised public awareness campaign — remain delayed or have yet to get off the ground. Does any of this really look like transformative change? Whisper it, but maybe the Final Delivery Plan isn’t the answer.
In year three of #ThereForME we will continue to feed into government policy processes where we have the opportunity. Whitehall processes matter, and over time slow, incremental changes can stack up. But as we look ahead, we want to always remember: success is not a seat at the table, but making that seat count.
Some of the best opportunities can come in the margins of government processes, not within them. As we move forward, our ambition is to shape the conversation, to be changemakers, not stakeholders. We want to use government processes like the Final Delivery Plan as a launchpad, not the ceiling for our ambitions. Every hour spent responding to government processes and decisions is an hour not spent setting the agenda. We need to make every minute of our time count.
Building a movement
Finally, we want to do more to lay the foundations for a people-powered movement. From Hillsborough to the infected blood scandal, recent history shows that people-powered campaigns can win justice, even after decades of being ignored. It’s a lesson our new Prime Minister knows firsthand, having campaigned alongside those families himself.
The lesson for us is clear: people can be the engine of change, with persistence and the right support. Our small #ThereForME HQ team aspires to act as a catalyst. We need many more hands to make change work.
Over the past year, we’ve begun investing in the infrastructure to empower others to raise awareness and communicate effectively. We’ve prioritised projects with other ME and Long Covid organisations and advocates, aiming to strengthen our collective capacity to drive change. We’ve offered free media training and convened learning sessions, covering topics from writing op-eds to influencing change in the NHS. Our aim is to help a ripple become a tide.
Most important of all is getting our message out of the bubble. The future of ME policy won’t be decided by people who already agree with us. Over the coming year, we want to do more work to connect with the people around us who don’t yet understand ME, and who aren’t yet allies. We want to step up our efforts to meet them where they are, raise awareness and tell a compelling story. We want to build a new network of people who are #ThereForME.
As we enter our third year, with a new government in place, we think this is as good a time as any to hit refresh. The mission hasn’t changed. But the context has — and so must our advocacy. The next chapter for #ThereForME starts here.
There’ll be more soon on what’s coming next for #ThereForME. Until then, it’s time to get back to work.
Sorry but saying "britain is short of cash" is just buying into the government gaslighting. There's plenty of cash, they just don't want to spend it on the likes of us.
Plenty of cash to fund more warfare. Plenty of cash to bail out corporations.
And the poor and vulnerable are expected to pay for it by giving up even more funding and (dis)services, despite the UN stating britain is in breach of international human rights laws on poverty almost a decade ago.
I think the fundamental thing that needs to change is to stop acting as if our government is acting in good faith - they aren't. DHSC is rotten to its core and not fit for purpose. Health ministers have no clue and just repeat what they are briefed. Which is why all our parliamentary answers sound like carbon copies.
We have to stop politely asking ebeneezer scrooge for some fucking funding and instead scare the life out of him.
We need our charities to grow a pair of ovaries and stop pretending that the crumbs the govt gives them to keep them quiet are progress. We need them to stop acting supposedly on our behalf in secret. All the charities that are working with the govt on their precious plan are under NDA so they can't even tell us what's been happening without the govt ok'ing it. See MEA's latest "update" on the non-delivery plan.
And maybe stop referring to their BS as the "final delivery plan". How can it be final when it lacks so much, not least anything for the severe. Call it their "bad attempt at plastering over the ruin of their own failures." Don't "whisper" that it might not be the answer when just about every single pwME said it was inadequate right from the get go. It never was the answer. It was just another attempt at a cheap way to shut us up.
And you think the "NHS template service specification" is progress? Does it involve services that are led by medical doctors, not OT's or psychs? Does it involve off label prescriptions of a bunch of stuff we know can help? Does it involve ANY of the latest science? Provisions for 2-day cpet's or similar? Probably not - but we don't know, because the people doing the negotiations supposedly on our behalf are under fucking NDA. Is it largely designed by fucking bacme? I would not be surprised if it was given they have their fingers in all the fucking pies, poisoning all the wells.
More importantly, is it enforcable? The NICE guidelines clearly aren't and so their impact is hugely minimised because the zealots just shrug and ignore them. The same for their shitty e-learning courses. That's not progress. That's GASLIGHTING.
And maybe some of AfME's "parliamentary champions" can ask the govt why they keep gaslighting us, not just merely asking the same questions and getting the same carbon copy answers, that are quite obviously lies, half truths and PR speak. Maybe use the next parliamentary q to call out these BS answers instead of proudly parading them for our community as if the same empty words, yet again, are some kind of trophy.
And putting all our hopes on the "exploration of a potential service for the (very) severe" is foolish if you ask me. All they have committed to is LOOK at it. I think we all kinda know what their conclusions will be, don't you?
We can't keep positioning this as progress. Meaningful change for us will not happen behind closed doors, in secret, under NDA, working with our abusers.
If we keep repeating the words of our abusers we'll only be locked in deeper in the abuse.
We have to break free, and fucking embarrass or litigate them into meaningful change.
We have to take a leaf out of the norwegian ME association's book, and BUILD a safe ward for the severe ourselves. ME Charities have been funding significantly more research than the UK governemnt. Why aren't we doing the same for care? It is blatantly clear our government and civil service will not deliver any adequate care improvements, as this would require a centre of expertise, and they shut every attempt at one down (or just plain ignore it).
Our charities should stop using OUR donations to fund more bacme "research". More gaslighty apps. Sure, if the govt won't pay for appropriate care, we'll have to fund it ourselves. But at last we could do it in such a way that doesn't give the govt any control on what the money will be spend (wasted!) on.
And yes, we have to get out of our bubble. Have you given any thought to linking up with trans and neurodivergent rights groups? Given that all of us are being targeted by the same hateful folks and their minions on govt and "civil" service?
Thank you, Karen, I'm restacking and hope this is widely read.