9 years ago I was struck by what I now know to be Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS).
I was fit, healthy, happy, and self-employed in a successful New Zealand company my husband and I built.
ME/CFS completely smashed me! I became a shell of my former self, unable to do the simple things in life like wash my hair, type, and email, or walk the block. I was functioning at about 20% of my former self, shuffling around our house, wracked with pain, and overwhelmingly exhausted.
I went through a ‘typical ME/CFS’ diagnosis journey, where I was hit with a barrage of laboratory tests, (most returning normal results), and referrals to various specialists. This severe period lasted for about 18 months when for reasons unknown to me, I started to turn a corner and regain some of my previous strength and energy.
What frustrated me the most during this time was not understanding what was happening to me, why it was happening and most confronting of all, realising that some medical practitioners suspected my condition was all in my head!
I couldn’t reconcile the debilitating pain in my hips when I rolled over in bed at night, the skin rashes that would randomly erupt on my back, torso, and shins, or the bruising in my ankles when I tried to shuffle around the block, with a psychological issue. I could see and feel physical manifestations.
I follow a blogger Cort Johnson, healthrising.org www.healthrising.org. On April 3, 2021, he released a blog about ME/CFS being the most neglected disease relative to its needs. https://www.healthrising.org/blog/2021/04/03/chronic-fatigue-syndrome-most-neglected-disease-nih-national-institutes-health/
Here are some of the key statistics he quotes:
- 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.
In a paper released in 2020, Mirin-Dimmock-Jason's 2020 update, “Research update: The relation between ME/CFS disease burden and research funding in the USA, the authors do a clever thing where they compared the NIH funding for various diseases against their ‘burden’.
The statistics used included years of healthy life lost by being in poor health. Cort Johnson notes that diseases which strike earlier, such as ME/CFS, will have higher disease burdens because more “years of healthy life” will be lost. The study found that the disease burdens ME/CFS imposed were over double that of multiple sclerosis and much higher than HIV/AIDS. Next – comparing NIH funding with the burden produced by ME/CFS indicated that ME/CFS had one of the higher levels of disease burden – and one of the lowest levels of funding (A). Using the NIH’s own plot, the authors estimated that NIH funding would have to increase 14x to well over a hundred million dollars to be commensurate with the burden ME/CFS wreaks on people in the U.S.
So what’s the takeaway from all this?
If we are going to find a cure for ME/CFS soon, then the funding available for ME/CFS research must increase. The cynic in me suspects that despite the evidence above, governments will be slow to act. As someone living with ME/CFS and a background in business, I wondered if there was a material way that I could contribute to finding a cure.
In 2021, my husband and I semi-retired when we sold our business of 25 years. This meant that I had time on my hands, which I could put to good use.
Coppered® is my way of creating a mechanism to raise money for much-needed ME/CFS research as well as acknowledging those of us who are affected by the condition either directly or indirectly.
I’ve been following the Open Medicine Foundation and have decided to donate 100% of the profits from coppered to help fund their research. What I love about their organisation is that they are a collaborative network of world-class research centers, including Stanford, Harvard, Uppsala, Montreal, and Melbourne universities and their current focus is working to solve ME/CFS.
If you’d like to see ME/CFS solved soon I hope you’ll support me on my mission by buying a piece of coppered® jewellery for yourself or for someone you may know who lives with this illness. And if you believe in my mission, please help me to get it seen by sharing coppered® with your networks.
Sally Cox | Founder, Coppered Company