By Célie Dugand
Out in the real world, it’s awful. Nothing’s written on my face saying I have to sit down.”
Mélanie Parent has suffered from myalgic encephalomyelitis (ME), usually called chronic fatigue syndrome, ever since she was 18. Like 80% of those who are handicapped by this malady, her disease isn’t obvious when you look at her. And aside from being relatively unknown to the general public, it is a very debilitating ailment.
ME is a multi-systemic illness characterized by an abnormal, disproportionate response after the least little mental or physical activity. This response is termed post-exertional malaise (PEM). In 80% of all cases, the disease develops from a viral infection.
It is very difficult to diagnose since there is no blood test or other kind of test that can detect it. Doctors use a process of elimination. So ME sufferers usually spend years being bounced around the medical system, searching for what’s happening to them, without getting any answers. This has a considerable psychological impact. Sometimes they are misdiagnosed, which can worsen their state.
“The fact that I wasn’t diagnosed early enough made things worse,” complains Mélanie. “I went from being a light case to a more than moderate case.”
For his part, it took Jacques Jean Guilbert 24 years before he was properly diagnosed. Nonetheless, that’s an important step for those afflicted with the illness. “It does some good to identify what’s going on with your life,” Jacques Jean says. “It’s like a rebirth. I’m not crazy, nor am I faking it. It’s all true.”
The aura of prejudice, and a lack of knowledge of this illness, make its diagnosis more difficult. Caroline Grégoire is a family doctor and a member of the board of l’Association québécoise de l’encéphalomyélite myalgique (AQEM), the Quebec ME Association, and its scientific committee. She laments: “70% of people afflicted are women, so ME was long considered psychosomatic. There are still people around today who don’t think it’s a real illness.”
Even though there are researchers investigating ME, and it’s been considered a real illness by the World Health Organization since 1969, there wasn’t much research done into it for a long time. It was difficult to obtain funding because of biases – until the pandemic. Because of Long COVID, research into ME has exploded. Both ailments present similar symptoms. So Long COVID researchers tend to admit ME patients into their studies.
“We’re living in an era that’s giving ME sufferers a lot of hope,” Dr. Grégoire notes enthusiastically.
ME manifests itself in four stages: light, moderate, severe, and very severe. Its numerous symptoms include PEM, extreme fatigue, cognitive difficulties, sensory hypersensitivity, and muscular pain. These symptoms are more or less pronounced depending on what stage the disease is at. But even light sufferers have to drastically restrict their activities.
Even if there is no all-encompassing cure, it is possible to treat certain symptoms separately. For example, sleeping pills are prescribed for those suffering from insomnia.
The most efficient way to deal with ME is to practice “pacing,” also called energy management. It can stabilize symptoms so that they don’t get worse. It consists of learning to respect your energy level by imposing rest periods after everything you do as you plan your activities.
Adapting your Day
Even when practicing pacing, getting through the day isn’t easy. “I take a shower every two to three days,” Jacques Jean says. “To avoid having to cook, I eat pre-prepared meals. I have someone who helps me with the cleaning. It makes me sad. I would like to do more.”
Many ME sufferers have to stop working. Mélanie says that’s the toughest thing to deal with, as your work life occupies a very important place.
Mélanie and Jacques Jean both kept their jobs for the first few years of their illness before having to give them up as things got more severe. “We need to work,” Jacques Jean says, “I want to feel useful and make my contribution. I don’t want to be a burden on society.”
Neither can work anymore, but they both remain involved with AQEM. Mélanie is co-president and Jacques Jean is responsible for help groups. That makes them feel useful and gives their lives meaning. The Association’s objectives are to help those stricken, to raise awareness of ME, and to encourage research.
Michèle Houde is a psychologist who fell ill with ME in 2009, but was only properly diagnosed in 2022. She kept on working until she had to quit because of severe migraines. She still sees two clients a day, virtually or by telephone, and consults from her bed if necessary.
She says: “For me, it’s important to continue working to maintain my professional expertise and to sustain links with certain colleagues. It also allows me to fight boredom and solitude. Even if I’m not friends with my clients, it’s still contact with others.” Michèle realizes that it is rare to be able to continue to work when a patient has a moderate case of ME, as she does.
Since those afflicted with ME have to drastically limit their outings, they often become isolated. “We feel invisible because we aren’t mixing with society anymore,” Mélanie admits. “That invisibility is very difficult.”
For her part, Michèle feels equally alone. “When I’m sick and no one is there to encourage me, I can feel like a ghost.”
Affected individuals have a lot of losses to grieve, whether it’s family, friends, or even money. They often have to face these harsh realities all alone, especially when their partner can’t take it anymore. Indeed, this solitude is reinforced by the incomprehension of those closest to them, who tend to fall away. Michèle recounts: “My oldest friends always knew me as someone who jogged every morning, so it must be strange for them.”
Nonetheless, one’s entourage is very important in this situation. “On a psychological and an emotional level, it’s a heavy load to bear,” observes Michèle. “You need a lot of support. You need reasons to carry on.” The suicide rate is very high among ME sufferers.
People’s Judgmental Looks
When they do go out, they have to deal with others’ judgmental looks. Caroline, an ME sufferer, says: “When I go to the theatre and the lights bother me, I put on my sunglasses. There can’t be any judgment. People must understand that I’m not putting them on because I want to look like a star, but because I have an illness. It could happen to them. So they should have the same attitude towards us that they’d like to receive.”
Some prefer to not talk about their disease, because they know they won’t be understood: “In society I have to find excuses to camouflage my sickness,” Michèle says.
On the rare occasions Michèle has tried to talk about her ME, things haven’t gone too well. “The worst is when I talk about it and people start looking down at their feet. You feel really alone. A lot of people are embarrassed, and that puts me ill at ease.”
Caroline would like to be better understood. “You have to believe all these people stricken with invisible illnesses. When we meet people, they tell us, ‘Oh, you don’t look sick.’ But they’re only seeing us when we’re out, they don’t see us when we’re in bed blindfolded, with earplugs.”
In certain cases, for example when someone walks with a cane or is bedridden, ME is visible.
Advancing the Cause
Even though research has advanced since the pandemic, there is still a way to go. There are educational strides to be made so that people are made aware of this disease. And there are policies that the government should put in place.
“Governments have to invest to offer the necessary services,” Caroline argues. “There’s a lack of money for research and education.” She dreams of one day seeing an expertise centre. For the moment, clinics treating Long COVID sufferers are open to ME patients. But there is a need to train doctors.
Moreover, individuals living with ME have no access to disability insurance and are ineligible for medical treatments. Things have to advance on these fronts too.
Just because an illness is invisible doesn’t mean that those suffering from it should be invisible too.
AQEM website: https://aqem.ca/
AQEM Facebook page: https://www.facebook.com/AQEM.SFC
Facebook group for Long COVID sufferers: https://www.facebook.com/groups/covidlongueqc/about/