Campaign Update #14: Community Campaigning Together
How you can join the campaign to #FundThePlan and get involved for Long Covid Awareness Day
It feels like it’s been a long time since our last campaign update! A lot has happened recently, including some disappointing news last week about funding for the Delivery Plan for ME, which we’ve covered in detail below.
If you’re feeling frustrated, angry or unheard - we hear you. But we’re also here in your inbox to share a ray of light. Despite challenges and setbacks, there’s no better time to take a look at campaigns taking off within the ME and Long Covid communities. So keep reading for a whistle-stop tour of the incredible efforts - including those from many of our readers.
The Delivery Plan for ME/CFS
As our subscribers will be aware, we’ve been closely following the progress of the long-awaited Delivery Plan for ME/CFS, which is due to be published next month. Last week, Ashley Dalton, the minister responsible for the plan (following Andrew Gwynne’s sacking) responded to a question in parliament about funding, putting on the record that “There are currently no plans to allocate additional funding towards the myalgic encephalomyelitis/chronic fatigue final delivery plan.” Dalton also failed to point to existing funding sources that would be mobilised to support the plan, leaving its future impact in question.
This was met with much disappointment by those suffering and hoping for a delivery plan with prospects of making a meaningful difference. The Times (nominated for a Press Award for highlighting the neglect of ME sufferers) published an article the next day about reactions to Dalton’s statement, including comments from our co-founder, Karen.
“This delivery plan is a once-in-a-generation opportunity to give people with ME and their carers vital hope for the future. It is difficult to see how the plan can meet its objectives without resources behind it. […] The delivery plan needs to be prioritised by ministers. It will fail unless backed by strategic funding to accelerate research and clear targets for transformed NHS care.”
Sonya Chowdhury of Action for ME also expressed concern:
“The delivery plan is an important step forwards for the ME community but without additional funding for much-needed and overdue research, its impact will be limited.”
And it was wonderful to see support from MPs across parliament, including Jo Platt, chair of both the APPG on Long Covid and the APPG on ME:
“People living with ME have waited far too long for real research funding and have been let down by the NHS for decades. We owe it to them to deliver a solid plan backed by strong leadership and the resources needed to make a real difference.”
Helen Morgan MP proved that support for ME is not just for Christmas by writing an op-ed piece for the Times on the same day. She pointed out that:
“A well-resourced plan should not be seen as a sunk cost, but an investment in 1.3 million patients and their carers.”
#FundThePlan
We believe there is still time to call on the government to change course, do the right thing and make sure the delivery plan is allocated meaningful resources. And so, a few days ago we set a new campaign in motion: #FundThePlan. Watch the video below to find out more:
Our #FundThePlan campaign is calling for £20 million of funding a year behind the delivery plan over a five-year time horizon. We think this would make a meaningful contribution towards implementing efforts to accelerate research, drive forwards improvements in NHS care and increase support to people with ME across society. We’d like to see even more allocated, but we think this is a reasonable ask in the current economic circumstances. This government has allocated £1.6 billion to fixing potholes. We think our collective futures are worth at least a small fraction of that sum.
We have been so moved to see so many of you posting your videos on social media, asking Wes and Ashley to invest in those with ME and #FundThePlan. We’ve collected a thread of videos on Twitter/X and are working on compiling some of the videos shared online into an easily shareable format. More on that soon!
If you’d like to get involved you can find all of the details on X/Twitter, Bluesky, Instagram and Facebook (as well as in the video above). And with the next meeting of the APPG on ME approaching on March 5th, and the delivery plan likely to be on their agenda, there’s no time like the present to encourage your MP to attend or let the APPG know that funding for the Delivery Plan matters to you.
Of course, it goes without saying that while securing resources for the Delivery Plan is critical, it also matters how they are spent. Both Karen and #ThereForME ambassador Dr Binita Kane were on the Task and Finish group for the Delivery Plan. Based on those discussions, we think there is potential for the plan to make a real difference, but it needs resources behind it to make a noticeable dent in the challenges facing people with ME. We’ve been at work behind the scenes looking at costings for activities based on our own recommendations for the Delivery Plan, those from our readers and other like-minded organisations.
Long Covid Awareness Day
Also coming up next month, on March 15th, is International Long Covid Awareness Day. On the fifth anniversary of the UK’s Covid lockdown and start of the pandemic, various groups are marking the day by raising awareness.
Billboards For LC/MECFS are running a Light Up Challenge, encouraging people to apply for local landmarks to be lit in teal, the #LongCovidAwareness colour. They have shared a list of locations worldwide, contact info and a template email.
Long Covid Advocacy are also getting in on the action and have in the last few days launched a #Postcards4LC campaign. They’re calling on people with Long Covid and allies to send postcards to key health leaders like Ashley Dalton MP, Sir Stephen Powis, and Prof. Lucy Chappell. There’s options to choose your postcard design and either write a personal message or use pre-written ones (you might even find the odd fantasy “voice of reason” in the mix) to advocate for crucial research into biomarkers, treatment, and the biological causes of Long Covid. Every postcard counts!
Long Covid Support are holding a Community Strategy Launch event with speaker Professor Danny Altmann at the Lyric Theatre in Hammersmith at 2pm. You can sign up here. Their community-made banner will be displayed at the event, and for those that can’t go to see it in person, a film will be released online.
While we face uphill struggles, we continue to be amazed at the determination of people within our communities, many of whom are very sick themselves, to fight for a better future. The road to change is long, but it sure is encouraging to see so many of us walking along it together. Onwards!
It's good to find a community for M.E. on Substack – I've been a member of communities on Facebook, but no longer like to use any social media sites.
I've had (non-severe) M.E. for decades, and making a living off subscriptions for my writing, and sometimes book sales, has kept me alive, as someone too ill to work a normal job, but considered not unwell enough for any benefits.
I think some kind of treatment or cure will likely arrive before any government understanding. Medical breakthroughs may bring understanding as well as solutions. But if people can't see an illness, it's hard for them to understand it.
Thanks for the update which is no surprise. I think that you are displaying a certain naivete about this government which is committed to neo Liberal economics which means a commitment to further austerity and spending cuts all in service of the super rich. Reeves insists on sticking by her ridiculous fiscal rules which are the excuse for billions of pounds worth of spending cuts this year. As Dr Ian Gibson used to say sadly you cannot divorce the terrible way people with ME have been treated for many decades from the reactionary politics of successive governments.
Sadly, so many people in the ME community cannot see this and continue to harbor illusions in a political system which is so badly compromised by vested interests which favour the rich and powerful.
Unless you are prepared to challenge the austerity economics of the government you are basically wasting your time.