Hi, I’m Sally Callow, an M.E campaigner and advocate of more than a decade. I’ve lived with M.E since 2006. I’m the founder of two M.E-focused social enterprises: Stripy Lightbulb CIC and ME Foggy Dog.
My M.E was triggered by a simple bout of Labyrinthitis. The day of my undergraduate degree graduation was my last ever ‘well day’. During the 4 hour drive home from Plymouth to Portsmouth, I had to stop every 30 minutes vomit in the privacy of lay-bys or rest rooms en-route. That was the start of my M.E ‘journey’ with no end destination in sight.
As many people with M.E have, I had to fight to be taken seriously by a range of GPs including my ‘usual’, and every single healthcare professional or department I was referred to. My diagnosis of CFS took 2 and a half years to get, which I know is far less than some. After everything else was ruled out with tests and scans, I was diagnosed by a locum GP who had never met me before with the immortal words “You have Chronic Fatigue Syndrome. Think yourself lucky you don’t have M.E, that is so much worse”. To be clear, no doctor had ever looked at or mentioned the M.E diagnostic criteria and he didn’t mention/rule out PEM. I was lucky to see an M.E specialist privately 4 years ago and they confirmed I was highly suggestive of having M.E. It was something I already knew deep in my bones, but it was so validating to hear it confirmed by someone who knew what they were talking about!
I was ‘only’ mildly impacted for the first 15 years of my M.E journey. There are people with M.E significantly worse off than me. Now in 2026, I have worsened and now have moderate severity. My COVID-19 infections had a big impact on my severity level: unfortunately, this is not uncommon. My dealings with healthcare professionals – the dismissals, ignorance of the condition, and the long stretch from developing M.E to diagnosis – inspired my fundraising and campaigning.
In 2014, I set up a new charity ‘brand’: M.E Foggy Dog. Foggy is a soft toy mascot, and the spitting image of my own real life dog Patch. My ever-empathetic companion, Patch would always stay close during my periods of M.E payback. He has since passed away but lives on through my work with Foggy.
The Foggy character I created was a globetrotting adventurer. I asked complete strangers to ‘Foggy-sit’ around the globe. The challenge was to try and travel as many miles in one year as possible. The first challenge was to travel one million miles…I have since learned how small the planet is! Needless to say, that milestone was a little ambitious. Nevertheless, Foggy had global adventures for the next 4 years for the ME Association. In 2018, Foggy’s travels started raising funds directly for Cure ME. We have raised £13,142.65 on JustGiving through our various fundraising campaigns (including 4 global challenges) and events over the years. All of this money was specifically directed to ME research, at my request.
M.E Foggy Dog stopped Foggy’s globetrotting adventuring in 2021 as postage costs, holiday unaffordability, wars, ongoing pandemic, and a cost of living crisis all made it logistically impossible to travel the world. So, I am now looking for a plan B…work ongoing.
Through this social media driven advocacy, I had thousands of conversations with people living with this disease and their carers. I realised that a poor knowledge-base was making it much harder to live with our disease. So, I started to think about how I could tackle that. I did a teacher training course, went to ‘social enterprise school’ and crowdfunded the start up costs (within the M.E/CFS community) for Stripy Lightbulb CIC.
Stripy Lightbulb CIC launched in September 2017 and our training went live in March 2018. It’s an online training company that teaches professionals with a duty of care about what M.E/C.F.S is, and what it is not. Our target audiences are healthcare practitioners, employers, and education. As a social enterprise, our Articles of Association state that we will give 50% of any surplus (profit) to M.E research, Cure ME are our chosen official beneficiary. I hope to raise many thousands for M.E research, though getting people to participate in training, on a disease they may not believe exists, is a tough slog. We have since won awards, held an in-person training day in Cardiff (something we hope to replicate soon) and our training has received excellent feedback from learners.
We need significant change, tinkering around the edges hasn’t, and won’t ever, work in my opinion. My dad has a saying – ‘right or wrong, make it strong’ – and that has become my ethos over the years. I created BED for Severe M.E in 2024 after seeing too many in our community saying they felt Severe M.E was underrepresented in advocacy work across the community. I had previously worked on #MPDoYourJobForME with the Chronic Collaboration due to the awful ‘care’ people living with Severe ME were experiencing within the NHS. This campaign work opened my eyes as to the sheer depth of neglect people living with Severe ME were experiencing.
There are multiple elements of BED for Severe M.E (annually on 29th October), as I wanted to make it as accessible to as many people as possible, whilst also reaching outside our community into the business sector. There are 6 ways to get involved in the campaign. The first is to buy a BED badge to raise awareness (50/50 split of profits from sales go to Smile for ME and ME Research UK). Next there’s a ‘Wear your PJs to work’ element (and donate to be able to participate in the work place). People can also donate to support BED, participate in a BED party on social media (participants are entered into a draw to win a pair of PJs), and contribute to an ‘In loving memory board’. I chose Smile for ME as one of the beneficiaries of the BED proceeds (fundraising and Badge sales) because they are a wonderful charity that truly supports and cares for people living with Severe M.E. so far we have raised over £500 for each beneficiary charity and plan on making significantly more as the annual campaign day continues to grow year on year.
From creating an M.E Friendly Hospital Charter to embed M.E informed care and basic levels of respect for patients living with M.E in hospital settings, to running a determined campaign to get the NHS to develop a specific protocol for treating severe M.E patients, everything both organisations do, we do with a person-centred and patient-led approach. My work has spanned meetings with the Department for Work and Pensions (DWP), the NHS, collaborative working groups of like-minded organisations in the voluntary sector, local and national government meetings – all to represent patients like me – living with M.E – who these institutions have historically silenced and ignored, and rarely offer a seat at the table.