Hell, it turns out, is your car driving itself with both the accelerator and the brake pressed to the floor, and the world blaming you for the burnout.
It is a strange state of existence when you are exhausted and wired at the same time. But that’s often the standard state of things with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). The name ME means literally muscle pain, relating to the brain, relating to the spinal cord, inflammation. It affects bloody everything. May 12 is MECFS Awareness Day.
Today, I’m in a better state than I was when my partner said I should be in a nursing home. But I’m not in as good a state as when my symptoms were in their remitted years and I thought I was cured. I’m able today to edit this post that I wrote a few days ago. I’m able to lie around and think complex thoughts, except when I can’t. And what I really want to do today is go out for lunch for my friend’s birthday but I’m not confident I’ve got the petrol tickets to drive there and back and socialise without spacing out cos I couldn’t get to sleep till 3.30.
I’m stuck in my own body.
There are an estimated 17 million people living with MECFS in the world according to MECFS Australia (SA) and many of us are invisible because we are at home. Some of us are in bed for months and even years. Some, for decades.
When some of us get out and about and are actually visible in the world, it may be tempting to say, “But you look so well!” I’ve heard that many times. Unfortunately, our bodies’ internal misclunkings are invisible.
So, often, is the flipside of having been out and about in the first place. You see us out and about in the topside world. Then the underworld calls. It’s called post-exertional malaise and it’s what hits to varying degrees when we over-exert ourselves. That over-exertion can mean anything from working a full day, to spending a few hours at a cafe, and it can last for days. For those who are bedbound, over-exertion can mean having a shower. Or walking from one room to the other, FFS.
We have been ignored by the medical community for a long time. First it was the reaction that comes from ignorance and maybe even fear at seeing a new thing causing another’s suffering that you don’t know how to alleviate – we were psychiatric. Putting it on. Malingering with the yuppie flu.
It’s hard to turn around that idea when it becomes prevalent. A ridiculously flawed study from 2011 found that MECFS people can get better doing CBT (cognitive behavioural therapy) and GET (graded exercise therapy). Many news outlets reported on this study’s findings. And so the stigma stayed. For quite some time the only people complaining about the PACE trial were patients. And who listens to us? Then David Tuller got on board and brought it to a wider audience’s attention. Now there’s all kinds of shit hitting the fan with widening calls for the data to be released.
Finally, though, the tide has begun turning when it comes to research. MECFS is a most complex illness and it affects those who suffer from it right down through their malfunctioning guts and their wonky nervous systems and their super-reactive immune systems, right down to the cells, and within them to the mitochondria, the furnace that fuels the cell. There are many doctors througnout the world who have been slogging away for decades trying to discover what might be causing it. Such a complex disease that has so many reactions and symptoms has meant this has been arduously slow-going. The lack of funding has not helped. MECFS has traditionally had less funding allocated to it than hayfever and male pattern baldness. Those two conditions cause suffering, sure. But I don’t think they’ve caused anyone to take their own life. For many MECFS sufferers, that has felt like their only option.
Now, though, the research is beginning to bear some fruit. Griffith Uni has found a biomarker. The NIH is about to conduct the most comprehensive study ever. Dr Ian Lipkin, world-renowned epidemiologist, believes he can crack the ME code in 3 to 5 years. There is cause for a (rather cautious) optimism.
You don’t realise how important validation is until you’re suffering in a hardcore fashion and the inference that you’re indulging in some ruse to get out of the difficulties is so replete through the culture that it’s unspoken, an invisible bias.
Finally we are getting some research love. It can’t come too soon. Validation is sweet, a cure almost unfathomable. For a long time science wouldn’t even look at MECFS at the party. Now it’s finally tongue pashing her in the corner, even though her breath is really gross from dry mouth.
Things are on the move for us. Too slow for our liking, sure. I often feel like I can’t wait another day. But I’m so grateful that we are finally being taken seriously.