What does the future hold for Forward ME?

An interview with Carolyn Leary, the newly appointed chair of Forward ME

We’re officially back from our Substack hiatus! Last week our co-founder Karen caught up with Carolyn Leary, the newly appointed chair of Forward ME — a coordinating body for ME organisations — to talk about her new role. You can read their conversation here, edited for length and clarity.

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Karen: Let’s start with a little bit about you. How did you first get involved in ME organisations?

Carolyn: My most significant first contact with ME was around 1990, when two friends of mine were poorly [with ME]. I was involved in friendship rotas to cook for them, doing practical keeping-the-show-on-the-road sort of stuff, because they were clearly struggling a lot.

Then, when I was pregnant with my first child, one of the severely ill friends needed significant care. I thought, “Well, if I’m going to be at home with a baby, then I can squeeze another one in.” So she came to live with us for three months and stayed for five years. Even my little children were involved in carrying trays of things upstairs. She tried really, really hard to move on and live with carers, but finally just could not see a way out. She sadly took her own life.

My daughter developed a post-viral illness when she was 16 after surgery and tonsillitis. She got ill for six months. She then made a really rapid recovery. She had a brilliant few years in remission, and then she was hit by two viruses. She’s been ill now for 13 years and is back living with me. We managed through her severe years — she had a couple of years not leaving the house at all. Her journey has improved considerably.

In 2018 I watched Unrest and realised that there’s a massive community out there of people who are mutually supporting each other and also campaigning. We had been advised by our clinic not to contact other groups of sufferers. So, I walked along to the local Sheffield group. They were struggling with not having the energy to do stuff. I offered to help and be vice-chair and within about two months I was chair. I did about seven years. We managed to get funding from 2019 and now have six part-time staff.

The Gloucester group initiated a new network of local ME groups, which was established with the support of the Sheffield group. Through that I got involved with Forward ME. It seemed to be no longer as effective as it used to be. It was set up by the Countess of Marr and others and had been active behind the scenes around the NICE guideline, but when I got involved, it felt like it had lost some of its support from the ME community. People didn’t know what it did: the website hadn’t been updated, and there was no reporting back out to members.

With support from Julie Upton, who’s also from the ME Local Network, and some others, we thought we’d try and do a bit of a refresh. We got the website redone, wrote a constitution, got that adopted, and paid for some admin support. We just started getting some processes in order so that it has some accountability.

The landscape has changed a bit because there are these new kids on the block, including #ThereForME and the ME Local Network. There’s more going on than there was. Forward ME needed to change to embrace the new world. I’m interested in looking to find consensus amongst the ME community. I want to make sure that the campaigning organisations and charities who want to work together are given the opportunity to do that. In the future we hope to reach out to Long Covid advocacy groups as well.

Carolyn Leary, chair of Forward ME

Karen: Some people in the ME community might not know anything about Forward ME. How would you describe its role, its purpose, how it’s working, who the members are?

Carolyn: With other illnesses you’ve got one big charity: one big voice and also one big way of getting funding. We’ve got a slightly more fragmented landscape, but there is a lot of common ground. Forward ME is about trying to find that and supporting it.

We’ve got phenomenal expertise. There are the big charities and organisations, as well as small local groups. There are people like the 25% Group that have been around a long time. There’s #MEAction Scotland, there’s WAMES in Wales, there’s Hope in Northern Ireland [a full list of members is available here]. It’s a really rich community. And, therefore people have lots of knowledge between them, but also lots of different skills and strengths. I’m interested in navigating some way of harnessing all that.

Karen: Looking ahead, what would you like to achieve in your first year as chair?

Carolyn: One thing is engagement with people. We’ve taken the main Forward ME meetings to every two months and in the intervening month, we’ve got a subgroup system. Rather than use a monthly meeting to talk about absolutely everything in a lot of detail, a lot more work will happen through subgroups, which are open to people who are not core members. It’s an opportunity to bring on board some of the phenomenal medical professionals working in this field and also to reach out to other amazing individuals who put a lot of time into understanding what’s going on and suggesting ways forward. We need a really robust group on children and young people to make sure those voices are heard and that the expertise that we have is really well shared.

My personal track for this year is that Forward ME must hold the government to account on the final delivery plan. We must do everything we can to keep challenging them on progress and process. One way of doing that is writing parts of their proposed template for the integrated care boards to use and their Language Matters document.

We are obviously hugely concerned about services for people who are very severely ill. When they said that they were not going to be able to progress any work on setting up a specialised service [for people with very severe ME] until at least April 2027, I happened to be in London. I managed to get time with the civil servants and said, “This is no good. We can’t sit back and watch more people die. If running down a specialised route isn’t the way to do it because NHSE have just knocked us back, we’re going to send you an alternative way of doing it and we want you to listen.” That’s currently being finalised and we’ve got a sense of some commonality between the main organisations.

Karen: We’ve been really pleased to see Forward ME taking such a strong approach on this. Are there things that you’d like Forward ME to do more of over time? And are there things that you think Forward ME should be doing less of, or where Forward ME’s attention isn’t best focused?

Carolyn: We’ve started posting updates on the website. I’d want to keep that going. I feel that the ME community has very much been in opposition to the government and NHS England for absolutely the right reasons, but I want us to be more articulate about what works and what we want and need.

Karen: A solutions focus?

Carolyn: Much more solutions-focused. If we’re going to move forward, we have to say, “This is what it should be. This is what it should look like. This is what good is.” It’s right that people find all the things that are wrong — that’s really important as well — but let’s take control of the agenda and be more assertive about what would make a real difference.

Karen: As chair of Forward ME, do you have a message for people with ME or carers?

Carolyn: There’s a couple of things. Firstly, your voice is really, really important. We will never get this right unless we respond to people’s lived experience. So, if you’re a person living with ME, or a carer or an ally, or have a family member affected, or whatever, if you feel you’ve got skills and energy that you could put into helping us really construct our future, it would be great to hear from you. We need people who’ve got clear ideas, suggestions, and who can help write or use social media.

And if you haven’t got that energy at the moment, please know that there are a lot of people who have a sense of the challenges that you face, who are batting on your behalf. At some point you might want to join them, but if you can’t join them at the moment, that’s okay.

Karen: That’s a really important message — it shouldn’t be on the patients to do this. If people would like to know more, how can they follow Forward ME’s progress?

Carolyn: We’ve just launched a newly updated website and I am trying to put up regular updates. If you’ve got feedback on how those land, please get in touch. We would love those updates to be spread more widely across other people’s platforms. And I really welcome feedback on what Forward ME should be doing.

A big thanks to Carolyn for joining us for this conversation! You can find out more about Forward ME on its revamped website, and you can get in touch by emailing info@forward-me.co.uk. We’ll see you next time.