I Care, Do You?

I do what I do because I care.

To be blunt, I do what I do because I give a **** about the millions of very sick people around the world with the disease called Myalgic Encephalomyelitis (M.E).

Lot of people don't 'get' what I do or why I do it. It's too hard, surrounded by stigma, and relentless so...why on earth would I put myself through that when I have the disease myself?

As I said, I give a ****.

Many people are very passionate about many different political, economic, or social issues happening right now around this beautiful planet of ours, and bringing about social change for the international M.E community is the path I have chosen to walk down. With M.E, political, economic, and social issues are all rolled into one big ****ing mess.

On the day, in May 2014, that I decided to fundraise for an M.E charity I had absolutely no idea what was coming. I'd personally had a Chronic Fatigue Syndrome diagnosis since 2008 and, because a locum GP had said to me 'you have CFS, think yourself lucky that you don't have M.E, that's so much worse', I thought I was fundraising for people with a much more severe disease than I had (which was true, in part).

I didn't know then that I meet the criteria for M.E and the GP didn't have a Scooby Doo what he was talking about. He clearly didn't know that M.E is a spectrum disease and I am very 'lucky' to have a mild form. He also clearly didn't know that in the UK, CFS was only ever created as a name for a research paper. It has no criteria and so a diagnosis of CFS (in the UK) actually means bugger all. Anyone who feels 'fatigued' is likely to get this diagnosis if they have a few additional pain, sleep, or brain related issues.

Since creating ME Foggy Dog (initially a fundraiser but now a UK social enterprise), my vocabulary has expanded ten-fold. Terms I had never heard before are now used daily. Terms like Post-Exertional Malaise, gaslighting, Postural Orthostatic Tachycardia Syndrome, Ganglionitis, and the PACE trial are frequent flyers in my life.

I get irritated when people tell me they know what M.E is, I get irritated because I too thought I had known what M.E was pre-2006 when my symptoms first started. I can't remember ever saying it but if I had ever said 'M.E is being fatigued' or M.E is being tired all the time' then I had absolutely no idea of the scale of **** coming out of my mouth.

2014 is a long time ago now, around ￡13,000 has been raised by 'Foggy' for biomedical research and I intend to raise much, much more (open to PAID opportunities!). I have also now founded a not for profit online training company that educates healthcare, and education professionals and employers about the disease. Something else that irritates? When professional people tell me that they don't need to learn about M.E because they adequately and appropriately support staff, students, or patients under their care, this is usually after telling me that M.E is being tired all of the time. So, you can see how I know that they don't really understand what M.E is and, that being the case, it is easy to see that patients under their duty of care are not supported, adequately or appropriately.

Tiredness can't kill, M.E can.

As our community of scientists, patients, advocates, and charities had been predicting since February 2020, COVID19 has triggered M.E around the world. Half of Long Covid cases meet M.E diagnostic criteria. No-one is counting Long Covid and as such no one is counting the new covid-related cases of M.E internationally. However, any time you see estimates for Long Covid, I would urge you to halve it to get the figure for new covid-related M.E cases. We had 17-30 million cases of M.E (and 'CFS') worldwide before the UK Government ever uttered the words 'exponentially' in a press conference in relation to rising COVID19 case numbers in March 2020.

I now urge you to start giving a ****.

As millions of people have discovered through this pandemic, it can happen to absolutely anyone. Your life as you know it can be over in a heartbeat. Add to that being gaslit and stigmatised, and it is a rollercoaster ride of absolute bull****.

I encourage anyone reading this article to read every blog I have ever written, sign up to Stripy Lightbulb CIC's training courses, and get engaged with active campaigning internationally. We need YOUR help, but while many of the general public think that M.E is 'just tiredness' that help is not forthcoming.

In the words of The Lorax, Dr Seuss -

Unless someone like you

cares an awful lot,

nothing is going to get better.

It's not.

I care an 'awful lot' about M.E and the associated issues, will you?

Sally Callow