Myalgic Encephalomyelitis and Suicide

What is myalgic encephalomyelitis (or chronic fatigue syndrome)?

Myalgic encephalomyelitis (ME), also known under the name of chronic fatigue syndrome (CFS), is a multisystemic complex chronic illness, meaning it affects many systems in the body. It is characterized by intense, persistent, and incapacitating fatigue that does not get better with rest. 

myalgic encephalomyelitis and suicide

This condition can significantly impact ability to function and comes with other physical, cognitive, and neurological symptoms. 

The causes of ME are still unknown, but in around 80% of cases, the illness occurs after a viral infection like the flu, mononucleosis, or certain coronaviruses (COVID-19, SARS, etc.). 

What are the symptoms associated with myalgic encephalomyelitis? 

People who have ME can experience many symptoms. The main ones are: 

Physical 

  • Persistent and recurring fatigue that resting does not improve 
  • Feeling unwell after effort, meaning an aggravation of symptoms after even minimal physical, cognitive, or emotional effort 
  • Muscle or joint pain 
  • Disordered sleep 
  • Headaches 
  • Dizziness or vertigo 
  • Orthostatic intolerance (difficulty staying seated or standing because symptoms are aggravated in these positions) 

Cognitive and neurological 
  • Difficulty concentrating 
  • Memory issues (often called “brain fog”) 
  • Difficulty processing information 
  • Hypersensitivity to sound and light 

 Other possible symptoms 
  • Throat pain 
  • Gastrointestinal problems 
  • Sensitive lymph nodes 
  • Genitourinary problems 
  • Thermoregulatory problems (i.e.: sweating episodes, repetitively feeling feverous, cold extremities, etc.)

What consequences are linked to myalgic encephalomyelitis? 

Myalgic encephalomyelitis can have an important impact on many aspects of life. 

  • Daily life 
    • Difficulty fulfilling basic needs (hygiene, meals, general mobility)
    • Difficulty maintaining a stable routine
    • Limited autonomy
  • Professional or academic 
    • Difficulty maintaining a job or studies
    • Frequent absences, or taking leave
    • Social
    • Isolation 
    • Difficulty maintaining relationships or social activities 
    • Lack of understanding and stigmatisation by loved ones 
  • Administrative 
    • Difficulty obtaining a diagnosis (many years between symptom occurrence and diagnosis) 
    • Financial difficulties (loss of revenue, medical fees, specialized treatments, etc.) 
    • Complex administrative processes (i.e.: access to insurance) 
  • Psychological 
    • Physical limitations, changes in habits, and various obstacles encountered can all have an impact on psychological wellbeing
    • Frustration, anger, sadness, or fear 
    • Not being able to understand or feeling powerless 
    • Feeling useless or like a burden to loved ones 
    • Feeling anxiety or worrying about the future 
    • Loss (of autonomy, projects, role, identity) 
    • Psychological distress 
    • Suicidal thoughts

You have myalgic encephalomyelitis and suicidal thoughts? 

Myalgic encephalomyelitis can cause significant suffering. For some people, this can bring on suicidal thoughts. If that is your case, it’s important to reach out. 

We encourage you to check out the following sections: 

Taking stock of your mental health

The first step toward taking back control is identifying what’s causing your suicidal thoughts.

Taking care of yourself

There are a number of things you can do to protect yourself and regain your balance when you’re having suicidal thoughts.

Talking about it with your loved ones

Asking for help from your family and friends isn’t always easy. There are different ways of going about it.

Finding support services

Every day, all sorts of people contact support services to get the help they need.



What to do if you have symptoms of myalgic encephalomyelitis? 

It is possible to feel better when living with myalgic encephalomyelitis. If you notice that symptoms are affecting your psychological wellbeing, first call 811 option 2 (Info-Social) to speak to a responder about your situation and be referred to local resources that can help as needed. 

It is possible to feel better when despite living with myalgic encephalomyelitis. If you notice that symptoms are affecting your psychological wellbeing, first call 811 option 2 (Info-Social) to speak to a responder about your situation and be referred to local resources that can help as needed.

To obtain an evaluation or a follow-up with a healthcare worker, see a general practitioner (like a family doctor), a psychologist, or contact your local CLSC.

Other resources can also help those living with myalgic encephalomyelitis, such as: 
L’Association québécoise de l'encéphalomyélite myalgique (AQEM)
 

Some tips to help if you are living with myalgic encephalomyelitis 

Long COVID and myalgic encephalomyelitis 

People living with long COVID present symptoms that are similar to ME:  extreme fatigue, feeling unwell after effort, breathlessness, cognitive issues, etc. These symptoms appear after contracting COVID-19 and persist over time. About half of people who have long COVID also develop ME. 

Much like ME, long COVID is an incapacitating illness that can make everyday activities difficult and diminishes quality of life.  

If you are suffering from long COVID, it could be useful to follow the recommendations on this page.

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