Myalgic encephalomyelitis M.E. otherwise known as Chronic Fatigue Syndrome - way easier to say, 'got me' 9 years ago. ME/CFS is an illness that affects millions and has been around for some time. The CDC estimates that one million people in the US and as many as 17-24 million people worldwide have ME/CFS and those figures are likely underestimated. Now there's long covid to add to the burden which to my mind, looks remarkably like ME/CFS but with the key difference that there's a known viral trigger.
Unfortunately, ME/CFS has gone largely unrecognised and is a forgotten cousin when it comes to medical research funding. Art Mirin, Mary Dimmock, and Leonard Jason share their alarming stats in their 2020 paper, “Research update: The relation between ME/CFS disease burden and research funding in the USA”.
- Chronic fatigue syndrome is more debilitating than many chronic diseases including multiple sclerosis, chronic renal failure, congestive heart failure, lung cancer, stroke, and type-2 diabetes.
- As many as 75% of patients are unable to work.
- An estimated 25–29% are homebound or bedbound.
- ME/FS costs the U.S. $18–24 billion in lost productivity and medical costs a year.
- Recovery rates are at about 5%.
- There are fewer than 2 dozen nationally recognized experts in the U.S.
Patients with myalgic encephalomyelitis, present to their doctor with a raft of symptoms that seem to affect multiple systems and range in severity. The frustrating thing for those who live with this condition and even those who are trying to help is that there is no current laboratory test to confirm a diagnosis. Sometimes this results in patients being dismissed as hypochondriacs.
One of the key symptoms of ME/CFS is chronic fatigue, which is why it is referenced in the illness name. Chronic fatigue isn’t about simply being tired it’s fatigue that is overwhelming and extraordinary.
For me, fatigue presents as pain similar to lactic acid buildup, affecting every muscle in my body after any form of physical exercise. Everything hurts way more than it should. You're tired way beyond normal and achieving the basics feels like climbing Mt Everest. When I was crook, I couldn’t type an email. The effort required to strike the keys was simply too much. Washing my hair while standing in the shower was near impossible.
And that's not where the symptoms end. Sleep is unrefreshing and often hard to achieve. Early on, I went for three solid days and nights without achieving any sleep, not even a cat nap. It was like a form of torture.
Weird physiological things occurred, including involuntary muscle spasms whilst doing something as simple as standing at the kitchen bench. My ankles bled and bruised internally when I tried to walk the block and rashes erupted all over my body. My skin felt like it had an acid burn and joint pain was so bad that I wondered if I had bone cancer. I resorted to wearing compression garments under my clothing to support my muscles and to try and control my temperature as I couldn't stay warm. I also suffered from waves of feeling like I was fainting even when sitting down and a heap of brain fog. So all in all I was a bit of a mess.
My severe onset lasted for 18 long and grueling months, however, I’m one of the lucky ones as with time, I've recovered to about 80% of my former self, only encountering flare-ups now and then.
Given my background in business and knowing that there are so many who remain forgotten. I've turned my attention to raising funds for much-needed medical research to help try and solve this illness. There's something cathartic about being proactive rather than sitting on the sidelines waiting for a medical breakthrough.
Last week I launched a social enterprise called coppered® which is all about raising money to help find a cure for M.E. This venture is not about me, it's about M.E. as 100% of profits will be donated to research.
If you know anyone who’s living with ME/CFS or now long covid, I ask that you help them by a) acknowledging that it's a ‘real thing’ and b) considering supporting coppered® by purchasing your special piece of www.coppered.nz and sharing this initiative with your networks and friends.