Campaign Update #15: Allyship matters

Having ME or Long Covid, or caring for someone who does, can be a lonely experience. People with ME and Long Covid are all too familiar with the lack of understanding and recognition of these conditions across society, as well as the stigma that comes with them. That’s why allies matter.

One of our goals at #ThereForME is to build a coalition of allies calling for change. People with ME and Long Covid, and their carers, are at the heart of our campaign. But we need an army of allies standing beside us.

This week we’re celebrating some of the work done lately by our allies, all the way from clinicians to parliamentarians.

#FundThePlan: Ally Edition

We’ve been extremely moved by the number of people who have shared videos on social media for our #FundThePlan campaign since we launched it a few weeks ago. For anyone catching up, people with ME across the UK (and in some cases, their carers) have been calling on Wes Streeting and Ashley Dalton to commit funding to the new Delivery Plan for ME. We’ve collected a thread of some of the videos we’ve spotted over on Twitter/X.

Our friends at Physios for ME joining the #FundThePlan campaign.

Since our last update, we launched a #FundThePlan Ally Edition, which prompted a new wave of videos from allies including Lib Dem MP Tessa Munt, #ThereForME Ambassador Dr Binita Kane, Consultant Cardiologist Dr Rae Duncan and our friends at Long Covid Advocacy, Action for ME and Physios for ME. A huge thank you to all of the allies who have participated so far! And for those who haven’t yet had the time to share a video - the campaign continues and there’s no time like the present to get involved.

The next stage of #FundThePlan & how you can help

A special shoutout to ally of the week Pete Chinn, who gave us a hand with some pro bono video editing. Thanks to Pete’s help, we’re very excited to be launching a new official #FundThePlan video, which you can watch below. The video brings together some of the snippets shared on social media to tell a powerful story about the need for change.

We’d love to get our new video out to a wider audience, so please help us in sharing it far and wide! Whether it’s your MP, family and friends, or local media, you can help us get the message out to a whole new audience of potential allies.

We’ll be doing what we can to generate some media interest in the campaign with our new video. If you’ve made a #FundThePlan video and would be interested in talking to the media about it you can register your interest here.

Allies in parliament

We’ve also been pleased to see our allies in parliament working hard to scrutinise government approaches. In the past two weeks we’ve counted nine written questions raised in parliament on ME and Long Covid, with many focused on the Delivery Plan for ME. These questions have covered everything from whether the Delivery Plan will be applied by devolved governments, to whether the government is considering steps to improve care for infection-associated conditions as part of plans to bolster pandemic preparedness.

While plenty of stock government lines have been repeated across their responses, we’ve been doing what we can to read between the lines. Here’s five things we’ve learned:

• Publication of the Delivery Plan for ME is now slated for “the coming months” rather than a strict end of March deadline. While this will disappoint many, we hope that a short delay could help to facilitate a stronger plan backed by the right resources.

• There is some recognition of failures in care for people with ME but these are not yet understood as systemic. In response to a question asking if the government would apologise to people with ME for their historic treatment, new health minister Ashley Dalton responded that she recognised that “care for people with ME/CFS has varied widely, and in the worst cases has left some people feeling that their illness is not recognised by the health and care system”.

• The government has some understanding of what is needed but has not yet committing to funding it. In the same response Ashley Dalton explained that “we know that more research, better services and a better understanding of the condition all have the potential to make a huge difference to the quality of life of people with ME/CFS”. A good reason to #FundThePlan then.

• The Delivery Plan for ME will cover England only. Wendy Chamberlain posed a question on whether the Delivery Plan for ME will establish a common UK-wide approach. The response clarified that the Delivery Plan will cover England only, but that DHSC is working with devolved administrations to share “policy development and learning”.

• NHS England has completed a stocktake of ME and Long Covid services - but this won’t be published. Questions from Jo Platt and Will Forster revealed that NHS England’s recent stocktake of Long Covid and ME services has been presented to executive NHS England board members, but that it is considered an internal exercise that won’t be published.

Jo Platt, chair of the APPGs on ME and Long Covid, also used recent International Women’s Day as an opportunity to highlight significant gender disparities in the impact of these chronic illnesses, calling for a debate on the topic. While the request wasn’t taken up in the immediate term, Leader of the House of Commons Lucy Powell expressed that this would make a “very popular debate in future”. Last week, Jo also chaired the latest meeting of the APPG on ME, where members discussed the new Delivery Plan with DHSC officials (minutes here).

So - across the board our allies have been keeping busy. A big #ThereForME thank you to everyone who has been getting involved to support a better future for people with ME and Long Covid. It means a lot to see allies out there fighting our corner. Here’s to many more joining the campaign in future!

We’ll see you next week.