People With ME/CFS Exist And We Need More Support

12th of May is ME/CFS Awareness Day, and this year I don’t want to pretend it’s okay that hardly any people know about this day.

“The mobility scooter is for you?” asked the lady, dubiously looking me up and down to locate the malady. She found none. “Yes”, I said, smiling. She waited for an explanation, offering, “what…do you have a bad leg or something?”. “Nope.” I kept smiling. I hinted at the truth, “I have a disease and can’t walk far”. My partner and I were at the local Botanical Gardens and we were at the counter to ask if I could use the mobility scooter that was on offer to those in need of it.

As we left, me in the scooter, my partner reminded me I shouldn’t have to explain why I required the assistance. And she’s right. Constantly feeling under the spotlight when you request anything is exhausting, and I wonder how many people avoid going out for this reason.

I didn’t tell the woman that I have ME/CFS because in the past, one of the several things have happened. People haven’t heard of it and want to know what it is in a sentence or two, no more. People have heard of it but assume that the only symptom is fatigue, “which we all get”. Or people look disappointed, as if they wanted me to mention a more glamorous condition. Luckily, I’ve also met some incredibly understanding people who either don’t ask what is wrong with me in the first place, or if they do, they react in a respectable manner. However the latter is not a regular response.

In effect, “coming out” as having ME/CFS can be a momentous task, one approached with caution and dread, particularly for those who have milder forms and are able to work part time or full time with care. As I write this, I have the trepidation that it will backfire and I am making myself un-hireable in an academic work culture that (wrongly) prides itself on long hours and the physical stamina to keep up. Thus, I can understand why telling a stranger in public is daunting.

As a disability activist who has lived with ME/CFS for 21 years, I can report that going to the doctor can be as intimidating now as it was when I first got sick. Much of the medical profession seems to struggle with the concept that not all health conditions have a biomarker they can hang a diagnosis off. ME/CFS has been a disease that is diagnosed mainly by elimination.

Although according to the in-depth report by The Medical Institute in the USA in 2015, the disease can be more debilitating than MS, cancer and congestive heart failure, it remains under researched, misunderstood, and makes many treatment providers visibly uncomfortable. Yet like other underrepresented complex chronic conditions such as fibromyalgia, endometriosis, dysautonomia, migraines and multiple chemicals sensitivity, it is those who are suffering who are campaigning for change, spending any energy they have to create awareness, fight for better medical care and trying everything possible to improve their quality of life.

One look at other conditions like ALS, cancer, Alzheimer’s, and they have much better media attention and funding for research. They are also conditions that are easier to explain. I keep pondering how to make ME/CFS into an attractive disease for celebrities to take up the cause (I write this with only a small amount of jest). This is in no way discounting the seriousness of conditions such as ALS and cancer, but rather pushing them aside in order to raise our flag and say “We are here too!”.

Why is ME/CFS so low on the radar? It is certainly not for lack of trying on the part by those with ME/CFS and their families. I keep coming back to the fact that it is what anthropologists and medical spheres call a “contested illness,” whereby because it has contested causation, no identifying biomarkers or mechanisms and treatment, it’s legitimacy is often rendered mute. Yes, it is challenging for physicians when they are presented with a complex case, but it should not be the job of the patient to prove themselves. Further, when people have a diagnosis of ME/CFS, it is often refuted or disregarded depending on the physician’s own personal bias.

There must be another way.

Luckily, in the past two years, ME/CFS awareness has gained some traction. The documentary Unrest by ME/CFS sufferer Jennifer Brea has been popular in the public domain, and the annual (since 2016) global campaign “Millions Missing” for ME/CFS health equality is growing larger with each year. However, awareness will be more effective when better funding is granted for research, and when governments take the condition seriously.