I was diagnosed with Chronic Fatigue Syndrome (CFS/ME) in September 2016 after more than a year of symptoms. (You can read my diagnosis story here.) My doctor didn’t use the term M.E. (myalgic encephalomyelitis), I assume because she felt it would lend too much authority or seriousness to the condition. She, like the majority of medical professionals in the UK, believes it’s a psychosomatic condition that can be cured through counselling (CBT to challenge “unhelpful” attitudes) and Graded Exercise Therapy (pushing oneself to do more exercise).
Times are a’ changing at the moment though, or they certainly seem to be. Biomedical research is starting to identify common disruptions in the cells and immune system (which tally with my own private blood test results, which my doctor straight up dismissed).
The (self-distributed) documentary Unrest, chronicling the systematic dismissal of CFS/ME patients worldwide and the struggle to be taken seriously, has recently been nominated for an Oscar and is currently available to view on Netflix.
Despite this, there remains a huge amount of misinformation about this condition. “Chronic Fatigue Syndrome” doesn’t sound too life-changing. We all get tired, right?
What is CFS/ME?
Taken from the Unrest film website, this is an accurate summary of the condition:
“Myalgic Encephalomyelitis (ME) is a systemic neuroimmune condition characterized by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion). It causes dysregulation of the immune, nervous, and energy metabolism systems. The effects of ME are devastating enough to leave 25% of patients housebound or bed bound.” [Read more]
I want to explore a few of the lesser known symptoms here; I suffer from all of these, pretty badly at times. I’m lucky that I don’t experience very bad pain beyond muscular aches and throbbing, but the cognitive effects impact my life a lot. The path to understanding one’s symptoms and -ideally- getting help, usually begins with a blood-tested diagnosis and referral. I didn’t get either of those, and bumbled along for quite a while getting life tips and hacks from Pinterest and websites aimed at folks with other neurodiversities.
If you want to explore my pretty thorough guide to studying with CFS/ME (lots and lots and lots of resources) you can catch it over here at my study blog. I actually began my part-time Master’s degree in September 2014 and fell ill towards the end of the first year of study. I therefore promptly took two years out, and returned in September 2017 with a very different brain. It’s this before and after experience that has really helped me quantify and define some of the changes to my body and mind that have taken place. My doctor continues to insist that I am victim to some new and insidious mental health symptoms and that I will recover. I have been treated, for the most part successfully, for my mental health diagnoses for more than 20 years, and I believe that she is wrong.
My situation is not unique, and because of this common dismissal of CFS/ME patients, research into the cognitive impairments typical of the condition is sparse (but does exist).
This is simply my own experience of these symptoms, and they may be different for everyone. If you experience unique cognitive or neuro- symptoms not covered here, please feel to leave a comment and let me know!
Difficulty in processing information
I studied for my undergraduate degree in the mid-2000s. I was 23 when I began, and as well as studying full time, I worked around 20-30 hours per week in an art house cinema/venue. I met every deadline, spent a lot of time with friends (and playing The Sims), dealt with ongoing mental health difficulties, and managed to graduate with a pretty respectable 2:1. I remember being extraordinarily proud, particularly as I’d dropped out of Uni on the first attempt when I was 18. Despite the various challenges that life threw at me during those three years, I was always able to spend hours and hours with my nose in a book, staying up ’til the wee small hours reading in advance of tutorials, and making a 9am lecture the next day, tired, but lucid and functional.
I even read for fun back then. For one year of the degree, I lived with a friend who I’d met at my part-time job. She was studying a Master’s in Creative Writing and powered through a novel every single week. Every 2 or 3 weeks she’d persuade me to read a particularly good one, and I got through quite a few during that time.
It’s difficult to explain the way in which I struggle to process information now. Imagine you’re reading a riveting novel, but the TV and radio are on pretty loud at the same time. Imagine that novel is actually an in-depth Guardian article, and as well as the TV and radio, people are jumping about the room around you. Imagine that in-depth article is a paper in a scientific journal, and someone is also calling your name over and over. You’re likely to be able to make it through reading that content; you might even be able to remember the salient points. But putting it into a broader context might be tough. And if you’re expected to read 6 of those articles in one week under the same conditions, put them all into a broader context, and talk intelligently about them in a group of others, then it gets really tough.
On top of working full time, this is how my part time study plays out nowadays – I get there, but it takes a long time, and it’s tough going. Using a Pomodoro timer helps me enormously; if I concentrate for short bursts, and take breaks in between, I can muster a greater effort to concentrate more fully.
Poor memory or word recall.
This symptom is particularly embarrassing at my full-time job. I’ve worked in higher education for 10 years and have always had an excellent reputation within my institution. I’ve been able to express myself articulately and intelligently, but more and more I find myself in meetings where a single word or phrase refuses to come to mind. It’s often key to the point I want to make, and as a big fan of choosing the right words, it frustrates me immensely when I get stuck. I’m usually left tailing off or pointing in a pretty feeble manner to my head and tap-tap-tapping to let people know that it’s in there somewhere.
No-one has ever really guided me on what to say in these circumstances; my close colleagues know I have a CFS diagnosis, but the cognitive symptoms are so under-discussed that I doubt they understand what’s really happening. It’s difficult broaching the subject when CFS/ME has such a terrible reputation (it was once, after all, known as yuppie flu).
Low-grade cold/flu type symptoms.
Most days I wake up feeling pretty groggy and sniffly, like the first hint of a cold, one that never arrives. The muscular aches and throbbing that we experience when we catch a particularly nasty flu is a very common symptom for me. Sometimes it feels like someone is poking or prodding the skin, and joints (elbows, wrists, knees) ache. This symptom can progress to full-on physical weakness and exhaustion if I push myself too hard, but the low-grade flu-type symptoms are almost always there, and I’m fairly accustomed to it these days. (This symptom, apparently, is pretty typical of immune system dysfunction, and my own private blood tests -the ones my doctor dismissed- confirmed inflammation in my system akin to that seen when the body is fighting an infection.)
Dead arms and legs.
Related to the above – if I push myself too hard, I get full on dead limbs. The unluckier amongst you might remember older siblings or nasty kids at school giving you a dead arm. This creeps up on me sometimes… Recently I agreed to go on a Costa coffee run for my office-mates. I walked the 4 minutes back from the shop with two regular americanos in a cup holder in my left hand, and after 30 seconds or so my arm was entirely dead. I’d been pushing myself way too hard in the days preceding, so it wasn’t too surprising.
The curious thing is that serious mental exertion, or exertion using my legs, can also bring on the dead arm(s). I won’t pretend I understand this one at all. Living with my weird muscular anomalies is becoming pretty normal these days!
The “20% battery” syndrome (aka “you don’t look sick”).
Jen Brea has used this analogy a lot during promotion for Unrest. I guess it relates to the spoon theory, and helps people to understand why we often don’t look sick (or even fatigued).
“The way I describe it is that I feel like I’m this battery that is broken and only charges 20%. As long as I stay within that 20%, I can function really well and do a lot of the things that I want to do in the day. It’s different for everyone, where that metabolic line is. When I crash, all my systems can’t work. It’s sudden, and I won’t know that I have it until I start getting symptoms. It depends how bad it is, but oftentimes I’ll just be completely immobilized.”
Personally, I get to maybe 60% most days if I’m doing nothing other than going to work, going home, watching some TV, maybe cook dinner, and get to bed. In reality I need to cram in part-time study, dog walking, housework, hobbies, social activities, etc. Nevertheless, while I’m still in that 60% ‘zone’ I appear pretty normal. I don’t push myself too hard because otherwise I know I’ll hit that 60% much quicker than I would otherwise.
In my own life, the reality of this condition that my doctor doesn’t even believe in solidifies more as time goes by. I’ve adjusted in a number of ways… I rely on Mr J-M possibly more than I should, oftentimes for helping me just remain committed to what should be my own responsibilities. We pay for a cleaner, to ease up the burden on the both of us, and allowing me to concentrate on my studies. I’ve recently made a formal request to reduce my working hours to part-time, for the first time in over 20 years of continuous employment (aside from the 3 years I studied for my undergraduate degree). I am incredibly lucky to be in a situation that makes this reduction in income possible. I break promises and fail to attend events that I would otherwise dearly like to take part in. I’m not able to do extra-curricular volunteer work, as I so often used to. I’m also fairly sure that the quality of the output of my postgraduate study is impaired, despite the support mechanisms that are in place. I don’t suffer from CFS/ME even nearly as severely as many patients, but the effect on my life is still absolutely tangible.
Suffice it to say that my own mental health diagnoses complicate my CFS/ME symptoms in ways that I still don’t entirely understand. There are times when I question myself, but that happens more infrequently as time goes by and I understand the consequences of pushing myself too far.
I continue to be sorely disappointed by the lack of any input or support from the NHS, both locally and in the UK more widely. The online CFS/ME community is so supportive, though, and organisations like the ME Association and ME Action Network are on our side. I do hope for acceptance in my own lifetime, if not for a cure. Seeking out ways to pace myself and work with this new and different brain of mine is also very helpful. Whilst life moves a lot more slowly these days, I am still determined to achieve a few modest goals (and who knows, maybe a few more ‘immodest’ ones!)
All images are from Pixabay.
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