Like many of you, my first ME/CFS crash was a doozy! I had been holidaying with friends in beautiful Noosa, on the eastern seaboard of Australia. I was in my early to mid-forties and was pretty fit and healthy. Like most mums, I was busy charging around after my kids, husband, and our business, but that wasn't any different from any of my girlfriends who were present for my first 'event'.
We'd set off for a walk around the Noosa national park. It's 8.5km, not especially challenging.
As we were nearing the end, I started to feel very unwell. The first thing to go was my vision and then my stability. I felt like I was sinking through the ground and could barely stand.
The shakes set in with the sheer exertion required to keep upright.
All I could think of was that I needed to eat.
We headed to the closest cafe, where I ordered full eggs bene and a large milky coffee. I gorged myself hoping I'd start to feel fine with all the carbs. Unfortunately, the exact opposite happened.
I felt as though I was collapsing whilst seated and I felt completely out of control. We managed to get to a local doctor who ran my vitals and told me I was going to live.
The boom-bust cycle continued for the rest of the holiday, and I continued to eat my way out of every episode, thinking this was the fix.
The next 18 months were horrendous. I continued to deteriorate developing classic ME/CFS symptoms, chills, severe joint pain, unexplained rashes around my torso, back, and lower limbs, insomnia, involuntary muscle spasms, brain fog, and a short but intense period where the smell of food gave me nausea.
I endured every medical workup available, and you guessed it - apart from an abnormal liver function test, all others returned normal results.
How can anyone feel this bad and yet be medically speaking fit as a fiddle? I remember telling a doctor that I felt broken at a cellular level. I now consider these words to have been quite prophetic.
Emerging research into ME/CFS appears to show evidence of mitochondrial dysfunction in ME/CFS patients as well as a suspicion that red blood cells could be altering shape due to oxidative stress.
Ian Lipkin’s Center for Solutions for ME/CFS has undertaken a study that showed disrupted peroxisome/mitochondrial connection which they think likely contributes to the fatigue and cognitive problems found in ME/CFS. In doing so, they also referenced the work of an Australian researcher, Paul Fisher, who recently came to a similar conclusion.
Additionally, Professor Davis, of Stanford University who leads the End ME/CFS Project with the Open Medicine Foundation, is developing a device to measure red blood cells to determine if their shape is being altered by oxidative stress in ME/CFS patients. According to Prof. Ron Davis, "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. We measure hundreds of cells from each patient, so, because of this, even though the number of patients is low, we get a very statistically significant distinction between patient and healthy cells’ deformability."
An exciting possibility is that this device may enable physicians to test red blood cells as a 'biomarker' or evidence of ME/CFS and may also confirm that something is in fact altered at a cellular level in ME/CFS patients.
I'm hopeful that we're on the brink of major breakthroughs in understanding and solving ME/CFS, which is why I'm so passionate about fundraising for medical research.
If you're looking for ways to help solve ME/CFS consider supporting coppered®, through buying your special piece and helping to share the word. All profits will be donated to ME/CFS research, so together we may find a cure.