It's not about me, it's about M.E.

What's Myalgic Encephalomyelitis?

Myalgic Encephalomyelitis M.E. otherwise known as Chronic Fatigue Syndrome ME/CFS, #wayeasiertosay, hit me over 10 years ago. It's a chronic, multisystem complex illness that affects over 20 million people worldwide.  With the arrival of Covid-19, Open Medicine Foundation estimates that there are now more than 85 million people living with multisystem illnesses like ME/CFS.

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 living with this condition, and those who are trying to assist, is that there is no current laboratory test to confirm a diagnosis. Because of this, some patients are dismissed as hypochondriacs.

Disease Impacts and Research Funding

Despite the disease impacts of ME/CFS, it's often the forgotten cousin in terms of  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

The OMF estimates the economic burden of ME/CFS, to be between 36 - 51 Billion per annum in the US alone.

One of the key signatures of ME/CFS is chronic fatigue, which is why it is referenced it's name.
The fatigue relates to is post exertional malaise, which is a worsening of symptoms after any form of activity.  The name Chronic Fatigue Syndrome probably diminishes the seriousness of this illness, because for the uninformed it suggests that someone is just tired. But there is so much more to ME/CFS.

ME/CFS symptoms that afflicted me

For me ME/CFS presented with severe muscular pain that affected every muscle in my body. This was accompanied with tender and swollen lymph nodes, rashes and a sore throat.  Everything hurt more than it should and I was completely exhausted even after minimal activity.  At the beginning, I couldn't find enough energy to even type an email. 

And that's not where the symptoms ended. Sleep was unrefreshing and difficult to achieve.  I endured three solid days and nights without sleep, not even a cat nap. Lack of sleep was like a form of torture.  Weird physiological things occurred, including involuntary muscle spasms and bruising around my ankles when I tried to walk the block.  My skin on my back was sore to touch and I had trouble staying warm.  I also suffered from fainting episodes even while sitting, and I found it difficult to think or concentrate.

Coppered® isn't about me, it's about fundraising for M.E.

My first-hand experience of ME/CFS triggered a need in me to try and help solve it. It's such a horrendous illness that can affect some so badly that they become bedbound. I find it confronting to think that while I have recovered mostly, others are left to flounder. To date we have been unable to fully understand the mechanisms of ME/CFS. Without this a cure seems a long way off.

Given this, I've turned my attention to developing an initiative to fundraise to support further research. There's something cathartic about being proactive rather than sitting on the sidelines waiting for breakthrough.

I've launched a social enterprise called Coppered® ME/CFS siganture jewellery. It's purpose is fundraise for research.  This venture is not about me, it's about M.E. My commitment is to donate 100% of profits earned to ME/CFS research.

If you know anyone who’s living with ME/CFS, Long Covid or a similar chronic illness, I ask that you help them by supporting Coppered®. You can learn more about this new fundraising initiative here.