If you’re newly diagnosed with ME/CFS, read on

If you’re newly diagnosed with ME/CFS, read on

Being newly diagnosed with ME/CFS

The other day I was helping in my sister’s store when a woman shared that was newly diagnosed with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) . I could tell she didn't know what to do next.   She couldn't believe she'd found someone with lived experience of ME/CFS. I hugged her because I clearly remember what it was like to be newly diagnosed.  

Myalgic Encephalomyelitis, Chronic Fatigue Syndrome ME/CFS is a chronic, multisystem, complex illness that affects over 20 Million people worldwide.  Patients experience a range of symptoms that can vary in severity and type.  Unfortunately, there are currently no diagnostic tests, no proven treatments and certainly no cure. 

My reaction when I was first diagnosed with ME/CFS

When I was first diagnosed with ME/CFS I had no idea what it meant and I certainly couldn't  spell it.  I  recollected a story from my mother, about a friend who had M.E., but I really didn't know much at all.   My doctor advised me that I was likely to have periods of remission, where I would feel really well, and times when my symptoms would flare.  He knew this, because his daughter has ME/CFS.  He went on to confirm that there isn't a cure or an understanding of the disease mechanism.

So, I had just been told that I had something that may never go away, was a mystery and couldn't be cured.

The Dr. Google phase

Given this, it was inevitable that I began searching for information on the interweb.   I didn't know where to begin looking or what to believe.  Because I'm from a medical/science family, I wanted credible advice and defendable evidence. The search was exhausting, alarming and confusing. There's so much to read, many rabbit holes and I had so little energy to do it.  Fortunately, I stumbed across some brilliant organisations early on, that have since become my sources of truth.

My sources of truth for Myalgic Encephalomyelitis

Open Medicine Foundation  

Visiting Open Medicine Foundation OMF, is like getting a virtual hug from across the world.  Their website is filled with hope and evidenced based statistics.  Their strap line “what kind of life will you live when there’s finally a cure”, talks directly to a vision that ME/CFS will be cured.  You'll also find the latest research findings and guidance for ME/CFS and Long Covid.    

OMF support a collaborative network of over 200 of the best ME/CFS researchers working in worldclass organisations and have funded 59 research studies since 2012. Their leader and CEO Linda Tannenbaum, is an inspirational woman who understands ME/CFS first-hand as her daughter suffers from it. 

Cort Johnson Health Rising

I love Cort’s work. He’s the master of taking the complex and making it sound simple.
Cort began his ME/CFS and Fibromyalgia blog in 2012 with the aim of providing clear and understandable reviews of the latest research and treatment possibilities.

He also provides a place for patients to share their recovery stories and discuss their treatment success and or failures, so that we can all learn.  Cort contracted ME/CFS in the 1980’s while studying at the University of California.  He’s published over 1000 blogs is recognised for his advocacy and services to the ME/CFS and FM world. 

Solve M.E. 

Solve M.E. is a research and advocacy organisation focused on solving ME/CFS, Long Covid and other long-haul diseases. They fund world class research and advocate for research funding. They also believe in establishing collaborative partnerships.  Recently they started an interesting initiative where patients can log and track their disease symptoms and connect smart devices via an APP. This is an exciting new patient-led approach to research.

Coppered® ME/CFS Signature Jewellery

My belief is if we want to see ME/CFS understanding advanced faster, we need to invest in more medical research.   Governments have been slow to react with little acknowledgement of how burdensome our illness is.  OMF says the annual economic burden of ME/CFS is between 36 and 51 Billion in the US alone. 

This lack for research funding, is forcing patient-led organisations to fundraise for themselves.  I've developed a new iniatitive Coppered®ME/CFS signature jewellery, to add to this effort. I chose jewellery as my fundraising mechanism, because I like the thought of our community being united through something we wear daily.  My commitment is to donate 100% of company profits to organisations like those listed above. They've already established collaborative research networks and have projects ready to fund.

If you'd like to support this new intiative, you can learn more here.   And, if you like my idea, please share it with your networks.  With your support, we might just fund a cure.

Sally Cox
Founder  |  Coppered Company