Author
Vlad Tudorie
When it comes to meaningful change, some people talk—and others build. Sally Callow MSc is a builder. With Stripy Lightbulb CIC, she’s created a digital training platform that equips professionals with essential knowledge about ME/CFS, a condition affecting well over 250,000 people in the UK. But her work doesn’t stop at education. From digital automation to national advocacy, Sally’s approach is both strategic and deeply personal. What started as a grassroots fundraising campaign has grown into a multi-layered effort to challenge outdated policies, close systemic gaps, and make life better for those too often left behind.
When I sat down (virtually) with Sally from Stripy Lightbulb CIC, I expected a conversation about social enterprise and digital training. What I got was a lesson in resilience, vision, and how necessity drives innovation.
Sally has lived with ME (Myalgic Encephalomyelitis) for 19 years. She doesn’t just advocate for awareness—she builds systems that fill massive gaps left by the institutions meant to protect vulnerable people. Her two initiatives, ME Foggy Dog and Stripy Lightbulb CIC, operate at the crossroads of chronic illness, education, and systemic change.
Building from lived experience
Stripy Lightbulb CIC officially launched in 2019 as an online training platform designed to educate healthcare professionals, teachers, and employers about ME/CFS. It was born out of a clear need Sally had seen for years through her first project, ME Foggy Dog.
“ME Foggy Dog was launched simply as a fundraiser back in 2014… it kind of grew a bit bigger than just a fundraiser, it became a brand,” she told me. But when it came time to formalise education efforts, business advisors pointed out the disconnect between a whimsical name and a serious training platform. Thus, Stripy Lightbulb was born—a name with deep metaphorical meaning. A lightbulb is a metaphor for education and living with M.E is like living in a cage. Imagine looking at that lightbulb from within the cage-It would be stripy – Stripy Lightbulb.
The two identities now coexist, but not without friction. “Sometimes I have to literally flick a switch in my head and just go from one to the other,” she admitted, describing the cognitive shift required to manage both voices—one informal and community-facing, the other formal and policy-driven.
Automating to survive, not scale
From the start, Sally knew she couldn’t run a traditional business. Her illness limits her energy severely. So she turned to automation not as a trendy business move, but as a necessity.
“The actual online learning platform that we use is the best decision I ever made,” she said. She uses LearnDash with WordPress, chosen for its simplicity and flexibility. And while she occasionally uses AI tools like Otter.ai and ChatGPT, most of her campaigns and communications still require her hands-on involvement—especially the sensitive advocacy work.
AI also plays a crucial supporting role when Sally faces cognitive dysfunction-a symptom affecting ME/CFS patients to varying degrees. “With ME, I’ve got cognitive dysfunction… so if I give AI an idea and say write a blog about this, it gives me the nudge in the right direction,” she said. It’s not about outsourcing thinking, but about enabling it. This is a detail that’s often misunderstood by detractors of generative AI that argue one should be writing everything themselves.
That work, by the way, is far-reaching. From campaigning for safer ME treatment standards to lobbying for harm reporting systems equivalent to the MHRA’s Yellow Card scheme, Sally’s advocacy bridges the gap between patient experience and institutional reform.
Taking on systemic neglect
When we talked about public health policy, things got heavy. ME treatment in the UK has been plagued by controversy, especially around the now-rejected recommendations of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) – approaches discredited by NICE guidelines in 2021. Sally has been leading the charge against this, pushing for legal recognition of the harm caused by the previous guideline, which was pushed through despite not being supported by the wider available research.
“Since November 2021, I’ve been campaigning for kind of an equivalent to the yellow card system… I personally believe that the lack of a reporting system to report harm from non-pharmaceutical treatments is just disgusting.”
Despite gathering nearly 10,000 petition signatures and support from several MPs, her campaign has hit walls of silence at the top. “The government’s not making informed decisions about the treatments that they’re offering because they don’t have any data.”
She also touched on the discredited PACE trial, calling it one of the biggest medical scandals of the 21st century. The trial, co-funded by government and private insurers, influenced decades of harmful policy. And while journalists like George Monbiot have tried to expose it, resistance at the institutional level remains high.
Interestingly, Sally has had some success in Wales, where local ministers were open to conversation and collaboration. “They’ve helped us with all sorts of campaign work and signposted us to other departments,” she said. But the same hasn’t been true in England, Scotland, or Northern Ireland, highlighting the unevenness of progress.
She even explored legal avenues by launching a patient legal fund, but fundraising was too difficult. “If this is a class action, it’s going to be huge and it’s going to take months and months and months… but we cannot afford to raise a lot of money.”
Making systems work when energy doesn’t
I asked Sally what she would automate next if she could. Her answer revealed the real cost of being a founder with chronic illness.
“If I’m not well enough to do it, it doesn’t get done… It’s not because I’m a control freak or anything, it’s just that training volunteers is just as draining as doing the job myself.”
She has no shortage of ideas—from omni-channel CRMs to interactive educational content—but needs help translating those into action. We discussed how AI and automation can reduce the load, letting her focus her energy where it matters most.
Even now, she has to make hard choices. “I had to drop out of three [collaborative groups] because I just thought I’m gonna make myself more unwell… and then no work will get done.” Every project, every decision, is filtered through a lens of energy economics.
Conclusion: Automation as empathy
My conversation with Sally reminded me that automation isn’t always about scale or efficiency. Sometimes, it’s about survival. Sometimes, it’s about making sure the right message still gets out, even on the days when the messenger can barely sit up.
In a world full of flashy campaigns and well-funded charities, Sally is building something different. Something durable. Something deeply personal.
As she told me before we signed off, “I definitely need to look into more ways to automate my work… onwards and upwards.”
We’ll be following up with her soon. If you care about chronic illness, inclusive training, or tech-for-good, you should too.
Let’s keep the momentum going
Sally’s story is a powerful reminder that innovation doesn’t always come from boardrooms—it often comes from bedrooms, from people who build because they have to. If you’re also juggling too many hats, too little energy, and a big vision, maybe it’s time we talk.
