I’ve been living with ME/CFS now for over 9 years. There are times when I operate at what appears to be nearly normal levels, but there are also periods when I crash and have to withdraw from all the things I want to do. I'm increasingly frustrated by the lack of dedicated funding to ME/CFS research, particularly given the millions of people who suffer from it worldwide.
In one of Cort Johnson's brilliant Health Rising research summaries, the disease burden ME/CFS imposes is double that of multiple sclerosis and much higher than HIV/AIDS. And yet comparing NIH funding with the burden produced by ME/CFS, it has one of the lowest levels of funding. Go figure!
Although I’d like this situation to be different, simply hoping that the amount committed to ME/CFS research funding isn’t enough. I feel that it's time to take matters into our own hands.
Life in 10 year chunks
Someone once told me to consider my life in 10-year chunks and to make plans for each block. I’m about to click into my 10th year of living with ME/CFS and I’m still waiting for a cure. I'm prepared to commit a portion of the next ten years to helping solve ME/CFS.
We should allow the scientists to focus on finding a cure, instead of the money to do so.
Unfortunately, I'm no scientist so I can't actually find the cure for MECFS, but I know a thing or two about fundraising so I've developed a plan. This will allow our scientists to focus on finding a cure for MECFS, instead of the money to do so.
The challenge ahead
Every good plan should start with the end in mind. What's sort of funding is required to make a material difference to ME/CFS research?
According to Jarred Younger, a Neuroscientist, at the University of Alabama, it takes about USD50,000 to fund a medical pilot study which is a necessary precursor to a fully-fledged clinical trial. A full clinical trial comes in at about USD2M.
Sizeable numbers, so how can we deliver?
Like all business ventures, the key to success is standing out by offering something unique, valued and best of all purposeful.
Introducing coppered®. Signature MECFS jewellery, for those impacted by ME/CFS with 100% of company profits DONATED to ME/CFS research.
Given that 100% of profits will be donated to research, 1650 sales will fund a pilot study, 16,500 sales buys ten, and around 66,000 units will fund a full clinical trial!
My hope is that the greater ME/CFS community, being parents, partners, siblings, friends and those living with ME/CFS will join forces by supporting coppered so that together we may fund a cure.
Money raised will be DONATED to organsations such as Open Medicine Foundation which are foucsed on solving MECFS.
Help fund a cure for MECFS by visiting www.coppered.nz by buying your MECFS signature jewllery today.
Photo by Markus Winkler on Unsplash
