It is a severe, complex, and profoundly disabling neurological disease
This summary is not official. It is the heart of my reflection, a written account of my view of the disease, informed by both my own condition, numerous testimonies, and the articles I have been able to see or read.
What all sick people have in common is that their “batteries” recharge very little, regardless of the amount of rest or hours of sleep, when they recharge at all. The body already needs energy just to function at a minimum level.
When the recharge is sufficient, or a bit better, it’s possible to do small things: shower, do a little housework, small tasks… But if the recharge doesn’t happen, then our best ally is the bed.
Hours sometimes spent in total darkness and silence, unable to tolerate anyone’s presence, in a state of “living/dead” where one only breathes and reflects on their situation, with no hope of rapid improvement.
Consequently, it becomes impossible to make plans. Impossible to accept an invitation or receive friends or family, because you don’t know what state you’ll be in on that day, or even from one hour to the next. An almost complete isolation sets in.
When the body no longer has the necessary energy to function, it essentially goes into “energy-saving mode” and shuts down or reduces certain functions, even vital organs. This leads to multiple repercussions, particularly neurological, cardiovascular, immune, and psychological.
Suicide: a tragic and underestimated reality
The suicide rate among people with ME/CFS is significantly higher than in the general population. Some studies estimate it to be 6 to 7 times higher.
This reality is explained by a combination of factors:
- Permanent physical and psychological suffering: pain, exhaustion, post-exertional malaise that never truly improves.
- Social and family isolation: inability to maintain relationships, loss of social life, lack of understanding from those around them.
- Loss of autonomy and identity: inability to work, study, pursue projects, feeling like nothing but a burden.
- Absence of effective treatment: feeling of helplessness facing an incurable disease whose symptoms are only partially relieved.
- Rejection by parts of the medical community and institutions: years of diagnostic wandering, minimization of suffering, refusal to recognize disability, abandonment by the healthcare system.
If you are in distress or need immediate support:
United States: 988 — Suicide & Crisis Lifeline (free, 24/7).
Crisis Text Line: Text HELLO to 741741 (24/7).
Canada: 988 — Suicide Crisis Helpline (free, 24/7).
United Kingdom: 116 123 — Samaritans (free, 24/7).
Australia: 13 11 14 — Lifeline (24/7).
It is also possible to contact patient organizations that understand what you are going through.
You are not alone.
The lack of reliable statistics on ME/CFS-related mortality is no accident: it reflects the invisibility of this disease in the healthcare system. As long as ME/CFS is not recognized as a contributing factor on death certificates, as long as patient suicides are not counted as a direct consequence of the disease and its institutional neglect, nothing will change.
Recognition of this reality is a prerequisite for dignified care and research finally commensurate with the urgency.