ME/CFS Makes Me Feel Broken at a Cellular Level
The first signs of ME/CFS
My first encounter with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome ME/CFS was a real doozey! ME/CFS is a life-altering, multi-system, long-term and complex disease. When it hit me, I had been holidaying with friends in Noosa, on the eastern seaboard of Australia. I was in my mid-forties and pretty fit and healthy. Like most mums, I was busy charging around after my kids, husband, and our business. I was no different to the girlfriends I was holiday with.
We set off for a walk around the Noosa national park; a 8.5km easy jaunt. As we neared the end, I began feeling very unwell. My vision became blurry and I started to shake with the sheer exertion of trying to remain upright. All I could think of was, let's go eat!
Upon entering a nearby cafe I ordered a large breakfast and a milky coffee. I gorged myself hoping the carbs would sort me out, however instead I deteriorated and felt like I was going to faint. We managed find a local doctor who ran my vitals who determined that I'd live. In hindsight, what I'd experienced were the first signs of ME/CFS.
The Next Few Months
It would be fair to say that the next 18 months were horrendous. I continued to deteriorate as new and bewildering symptoms emerged, including chills, severe joint pain, unexplained rashes, insomnia, involuntary muscle spasms and brain fog. There was also an intense period where the smell of food made me feel sick and this was accompanied with three days of insomnia. I also experienced more frequent fainiting episodes and overwhelming fatigue after absolutely any activity.
The varied and intense nature of these symptoms resulted in a me having many assessments and laboratory tests. Everything came back normal apart from my liver function test. I didn't understand how anyone could feel this bad, yet be medically assessed as fit as a fiddle? During one of the many appointments I told the doctor I felt broken at a cellular level. With the new understanding I have, I find these words prophetic.
ME/CFS research
At the time of writing, research seems to show evidence of mitochondrial dysfunction, as well as multisystem distress. A disrupted peroxisome/mitochondrial connection was identified in a study undertaken by Ian Lipkin’s Center for Solutions for ME/CFS. They think this could contribute to fatigue and cognitive problems. In this study, they referenced the work of an Australian researcher, Paul Fisher, who recently came to a similar conclusion.
Additionally Professor Ron Davis, of Stanford University who leads the End ME/CFS Project with Open Medicine Foundation, OMF is developing a device to measure red blood cells to determine if their shape is being altered by oxidative stress in ME/CFS patients. He says, "The device will measure the ability of red blood cells to deform while squeezing into a capillary, something that blood cells must do for healthy flow." An exciting possibility, is that this device may enable physicians to test red blood cells as a biomarker of ME/CFS. Furthermore this research may prove that things are indeed altered at a cellular level for patients with ME/CFS.
More research is needed
Although there has been more research for ME/CFS in recent years, particularly post Covid-19, we still don't have a comprehensive understanding of the disease mechanism. We need more research to validate thinking and to prevent future illness, and to uncover a cure.
Unfortunately ME/CFS has received a disproportionately small share of research funding versus that provided to other chronic illnesses. It's difficult to understand why this is the case, given the economic and societal costs of so many millions who remain missing. According to OMF there are over 20 Million people worldwide with ME/CFS and an annual economic burden of between 36-51 billion dollars in the US alone.
A new fundraising initiative for ME/CFS research
About 2 years ago, I decided if wanted to see ME/CFS solved, I fundraise for research, so developed a new initiative called Coppered®. You can read the full story here, but in short my commitment is to donate 100% of profits earned to ME/CFS research.
Furthermore, I'm collaborating with Open Medicine Foundation to ensure any proceeds available are donated to credible research. If you've been wondering how you too can help solve ME/CFS please visit Coppered®. And if you like my idea and mission, please share it with your networks to so we can help get it seen.
If we work together, we might help find a cure.
Sally Cox | Founder Coppered Co.
