‘People Are Starting to Talk About M.E/C.F.S More’: An Interview with Sally Callow, Pt 2

Covid-19 Community Reporter Paris Ali-Pilling talks to Sally Callow in a two part series. In part two, Sally talks about the impact of the pandemic on her social enterprise, and how she is trying to grow her social enterprise as a result of Covid-19. 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. Transcribed by Peta Sampson. Read Part I here.

Paris Ali-Pilling: How confident do you feel about your organization’s future through and after the pandemic? What is the biggest challenge you’re facing?

Sally Callow: The biggest challenge is my own health now I’ve got two chronic illnesses. I’ve now got long Covid, I’ve had it for over 5 months. I’ve now got asthma, heart problems and a range of other stuff on top of my M.E/C.F.S. Every time we have a Board meeting, I’m like, ‘I really want to do this, I really want to do that’, and my directors have to say, ‘Sally, really? You are just about managing to keep things ticking over, you have to rein it in a bit’.

In terms of how the business is going to be after the pandemic, I think we are going to get a lot bigger because M.E/C.F.S is being mentioned in the press a lot more in relation to long Covid. Because of that, people are starting to talk about M.E/C.F.S. more and they’re realising, ‘Do we know what M.E/C.F.S is? No we don’t, we’d better learn’. We’ve had a spike in sales that we are hoping will continue. Stripy Lightbulb’s Directors are hoping to offer different types of training in future, that may include face-to-face conferences once the pandemic is over.

Hopefully we’ll be able to hire trainers to deliver that face-to-face training. As we grow, the way we deliver training will diversify as the need for training will be greater. There are already 250,000 M.E/C.F.S patients in the UK, up to 17 million worldwide, .

So even though the pandemic is negative you’ve found that it’s actually, from a business point of view, had a positive impact for you? Potentially growing and spreading that message, through information and training?

Yes, we’ve got a social purpose; not only to educate but also to raise M.E/C.F.S research funding so any surplus that we make with our social enterprise will go into M.E/C.F.S research, which will also benefit the Long Covid patients who are struggling because of the pandemic. So, it’s all a massive, positive business outcome for us.

It’s very odd. When Covid first came out I wrote an article for Star & Crescent Saying how we were fully expecting Covid-19 to trigger M.E/C.F.S. in some Covid patients. More and more are now being referred to various M.E/C.F.S services around the country. To see something that I predicted months ago, way back in February/March coming to fruition…I don’t want people to get chronically sick but I’m very happy that my business is going to help those people in the long run, both by educating the people who have a duty of care over them and also by raising research funding.

Have you been able to access Government support through the pandemic? What funding from trusts or other grant funders, if at all, have you been able to access?

We haven’t been eligible for Government funding, but what we have applied for is a National Lottery grant because although we haven’t been negatively impacted by the pandemic financially, the need for our training is greater and more urgent due to the pandemic, and because we are a relatively new social enterprise, we haven’t got loads of cash in the bank. We need additional funding to train more people quickly.

We haven’t heard if we were successful yet, we’ve got maybe another month to wait, if not longer. If we are successful, we will be delivering face-to-face conference type training next year and we’ll be able to offer professional webinar training with trainers while the pandemic is going on. Although you can do a certain amount of stuff free-of-charge and relatively cheaply, we want to be able to provide proper training printed materials, so that’s in the pipeline.

If you could send a message to local Councillors and MPs to help them understand how to best support the voluntary sector right now, what would it be?

As someone who lives in Portsmouth and has been locked away from everything, I don’t know what is still running, what places have gone under. I had to drive to my doctor’s surgery the other day and I noticed that there were a few businesses shut and I’m wondering if, as a way to support the third sector, maybe that they could have some kind of platform so they can say if you’re having a problem with X,Y,Z, did you know that this charity is available?

Just offer a whole new platform, something that they maybe haven’t done before and just recognise the fact that they do offer very valuable services that often are undervalued. During a pandemic a lot of people have had to turn to charities for help. Local government definitely needs to make people aware that if there aren’t mainstream support services available there probably will be a charitable, social enterprise organisation that’s there to help. They need to know it’s there.

One thing the pandemic has shown is that there are massive gaps in areas of support and by that I’m specifically talking about Long Covid patients. They are having to turn to M.E/C.F.S charities because they are not getting any support from anywhere else. Even I’ve had emails, saying ‘I know that you are not a support service, but I see that you deal with M.E/C.F.S.’, because I created and manage ME Foggy Dog and Stripy Lightbulb CIC and they’re emailing me. They just want signposting. They are not getting it from their GP, they’re not getting it from their local hospital, they are just floating around wondering who can help them. So maybe a directory might help point them in the right direction.

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 

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