‘Lockdown is Basically What Having M.E/C.F.S is Like’: An Interview with Sally Callow, Pt 1

Covid-19 Community Reporter Paris Ali-Pilling talks to Sally Callow in a two part series. In part one, Sally explains about the impact of the pandemic on her social enterprise. Sally is the founder of Stripy Lightbulb CIC and ME Foggy Dog, which offer training and aim to raise awareness about M.E/C.F.S. Interview transcribed by Peta Sampson.

Paris Ali-Pilling: Can you tell me briefly what your organisation is and what it does in the local community?

Sally Callow: Stripy Lightbulb is a Community Interest Company, registered in September 2018. We work for the Myalgic Encephalomyelitis (M.E) community, M.E is otherwise known as chronic fatigue syndrome (M.E/C.F.S.). Portsmouth is where I’m based and there are, from our figures, over 450 M.E/CFS patients in Portsmouth so although my company benefits patients and learners worldwide, people in Portsmouth also benefit.

It’s an online training company that is CPD accredited, and it’s the only one of its kind worldwide. M.E/C.F.S. is a massively misunderstood illness and the only way to tackle it, as there is a huge amount of stigma and misunderstanding around it, is by educating the people that look after patients like myself.

What financial impact has the pandemic had on your organisation?

To be honest, it hasn’t had any, which is absolutely fantastic. Our business model is entirely created with my health in mind, everything is fully automated. We are relatively new, so I am the only person that does the day-to-day management of it.

I’ve lost my volunteers, but they were doing additional work that wasn’t essential to the day-to-day running; volunteers were helping to grow the business, so in terms of the financial impact, no, it hasn’t affected us.

Covid-19 is highly likely to trigger M.E/C.F.S. or an M.E/C.F.S. – like illness in a percentage of patients and that is becoming more apparent as time goes on. Some Covid-19 patients are being diagnosed with post viral fatigue syndrome, which is the first step towards getting M.E/C.F.S. Due to the pandemic, more people are doing our training, so it’s had a positive impact. There is now a greater need for our training.

How has Covid-19 and the lockdown affected the services you deliver?

As everything is automated, lockdown hasn’t affected our service delivery. I’ve had Covid-19 since day one of lockdown so it’s been difficult, but lockdown hasn’t had an impact at all. Despite the fact that I’ve been extra incapacitated because I’ve not been able to leave my bed much during lockdown, the business has been able to tick over irrespective of what’s going on in the wider world.

Can you tell me more about how the pandemic affected your volunteers?

I lost three volunteers, they were University of Portsmouth volunteers and their studying on campus came to an abrupt end. They were sent home and although they were doing virtual work for me, they didn’t feel they’d be able to continue volunteering while their courses were all up in the air, so that came to an end.

I’ve had quite a few new volunteers come forward and say they want to help, but I’ve had to make it very clear that it would be remote working. I wouldn’t be able to meet up with them because I’m not taking the risk with my own health at the moment. I’m not really leaving my house and so in terms of staffing changes, it was purely down to the pandemic but that was logistics rather than the health side of things.

Personally, Covid-19 has definitely impacted my mental health. I’ve got a Board of Directors, but they don’t do the day-to-day running of the business, it’s just me and I’ve noticed that my physical health has deteriorated, as you would expect with any kind of virus, when you’ve also got M.E, it severely impacts your health. I’ve been struggling cognitively due to the virus too but mental health wise, the pandemic has definitely affected me.

When lockdown first started everyone was saying, ‘Oh my God, how can I cope. I need to be able to leave my house, how dare the Government tell me not to leave my house’. All the negativity surrounding the civil liberties, ‘That’s against my human rights, how am I going to cope?’ Lockdown is basically what having M.E/C.F.S. is like. I think I leave my house maybe once a week, that’s with difficulty. When you read lots of people saying how much they are struggling after not leaving their house for maybe one month and how they were struggling with their mental health, that’s my life permanently.

They were able to go out to the supermarket and they were allowed out to exercise. I can’t exercise with my M.E/C.F.S. My mental health took a hit and that made me realise just how limited my life is, because other people were saying how bad their life was when they had the same experience but for a fraction of the time. My social enterprise is based on my own health condition, I wouldn’t have set up a social enterprise for M.E patients if I didn’t have M.E/C.F.S. myself, my lived experience means I know how negatively lives are affected by the condition.

Find out more.

ME Foggy Dog is a social enterprise that aims to raise awareness about M.E/C.F.S and raises funds for M.E./C.F.S. research. Follow Foggy on Facebook and Twitter.

Stripy Lightbulb CIC is a social enterprise that offers e-learning about M.E./C.F.S. to professionals (healthcare, education, business) who have a duty of care over M.E./C.F.S. patients.

S&C has been awarded funding from the European Journalism Centre Covid-19 Support Fund to explore the social impact of Covid-19 on diverse communities and sectors in Portsmouth:

  • voluntary sector, including charities, community groups and social enterprises
  • small businesses and self-employed people
  • BAME communities
  • people with disabilities

We have also been awarded funding from the Public Interest News Foundation Emergency Fund to explore the social impact of Covid-19 on migrants, and asylum seekers and refugees.

If you are interested in sharing your experiences in any of these areas, get in touch with us over on Facebook and Twitter, or email us at submissions@starandcrescent.org.uk 

Image by Sally Callow.

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