Trust me, I’m like you living with ME/CFS

Trust me, I’m like you living with ME/CFS

Living with ME/CFS

It's bold to ask for your trust, especially given you've never met me.  However, I hope you'll trust me to do the right thing by you, through my new fundraising venture.  Because like you I'm living with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), and I'm trying to find a way out of it.

ME/CFS is a complex multisystem disease with many symptoms that may change over time and differ from patient to patient.  The most common symptoms are Post Exertional Malaise (PEM), or a worsening of symptoms after any activity, unfreshing sleep, cognitive impairment, orthostatic intolerance and pain.

I developed ME/CFS about 10 years ago, but consider myself to be one of the lucky ones.  Because apart from the first 18 months of living with ME/CFS, I have long periods of remission.  In fact if you met me today, you might think I'm completely healthy.   In reality I have peaks and troughs, and I'm good at hiding the troughs.

I've read enough, to know that our illness is complex and mystifying.  One of the most challenging things about this illness is not knowing if you'll recover. There are no proven treatments, so there's not much patients can do but wait for clinical breakthroughs.  We need more research studies to increase our understanding of ME/CFS's disease mechanism and more trials to test possible treatments.

ME/CFS research funding 

When you compare the disease burden of ME/CFS to research funding streams, it's easy to see that it receives a fraction of the funding provided for other illnesses.  The 2016 ÜberResearch Report into UK research spending found that ME/CFS central research spend  between 2006 and 2015, was just £40 per patient compared with £320 for those with rheumatoid arthritis, and £800 for those with multiple sclerosis.  Open Medicine Foundation OMF estimates that there are over 20 million people in the U.S. alone living with ME/CFS. It's difficult to understand why there is so little research funding given these numbers. 

Fundraising through Coppered® ME/CFS Signature Jewellery 

As I see it there isn't a lack of desire to solve ME/CFS, there's just a lack of funding to do it.  Solving a complex illness like ME/CFS will take a lot cash because there's so much to be tested.  I'm not one to sit about and wait, so about two years ago I began developing a fundraising idea to help raise the money we need.

Coppered® is ME/CFS signature jewellery designed for those of us who suffer from ME/CFS or who care for someone who does. My commitment through Coppered®, is to donate 100% of company profits to ME/CFS research through organisations such as Open Medicine Foundation.  OMF are hopeful that one day we can diagnose, treat and prevent chronic and complex illnesses like ME/CFS. They are funding some of the world's leading researchers in worldclass research organisations.

How much funding do we need?

Research doesn't come cheap. According to Jarred Younger, Neuroscientist at University of Alabama, it costs about USD 50,000 to conduct a Pilot Research Study and over USD 2M to undertake a full clinical trial.  We're going to need many pilot studies and many clinical trials to help those living with ME/CFS.

With your support, I believe Coppered® can help in a material way.  Here are the back of the envelope numbers to show you what we could achieve together.

* 4,000 sales will fund 1 pilot research study
* 40,000 sales will fund 10 pilot research studies
* 160,000 sales will fund a FULL CLINICAL TRIAL

If you haven’t already done so, please consider buying a piece of Coppered® ME/CFS Signature Jewellery here. With your trust and support, we might just be able to help find a  way out of this illness.

Sally Cox | Founder, Coppered Company (and hopefully your new trusted friend)

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