In summary

The only name to remember: myalgic encephalomyelitis

That is the only name worth remembering.

It is not easy to memorize, and it does not always make the illness easier to understand for non-specialists. But it at least has the merit of being taken seriously by a medical community that is still too poorly informed — and of not distorting what sick people actually live through, unlike the term “chronic fatigue syndrome”, which is often reductive.

A serious, complex, and profoundly disabling neurological illness

What all sick people share is that their “batteries” recharge very little — regardless of how much rest or sleep they get, when they recharge at all. The body already needs energy simply to function at a minimum.

When recharge is sufficient, or a little better, small things become possible: showering, a little housework, small tasks… But when recharge fails, the bed remains the best ally.

Hours sometimes spent in total darkness and silence, unable to tolerate anyone’s presence — in a state some patients describe as “living dead”: a feeling, not a diagnosis — the sense of being fully conscious, with memories and thoughts intact, yet trapped in a body that no longer responds.

As a result, it becomes impossible to make plans. Impossible to accept an invitation or receive friends or family, because you do not know what state you will be in that day — or even from one hour to the next. A near-total isolation sets in.

When the body no longer has the energy it needs to function, it enters a kind of “energy-saving mode”, cutting back or reducing certain functions, including vital ones. This has 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. Several studies estimate it may be about six to seven times higher, although figures vary by country, diagnostic criteria, and the severity of cases included in cohorts.

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 others;
• Loss of autonomy and identity: inability to work, study, or pursue projects, feeling like a burden;
• Absence of effective treatment: helplessness in the face of an illness 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.

An invisibility that persists after death

The lack of reliable statistics on ME/CFS-related mortality is no accident: it reflects the invisibility of this illness in health systems worldwide — not in any one country in particular.

Yet testimonies from relatives, associations, and patient communities report deaths in which ME/CFS played a central role: fatal exhaustion, complications linked to immobility, or suicide after years of suffering and abandonment. Rarely, if ever, does this illness appear on death certificates.

As long as ME/CFS is not recognized as a contributing factor in mortality registries, as long as these deaths are not counted, the true severity of the illness will remain invisible to institutions, research funders, and the general public.

Recognizing this reality is a prerequisite for dignified care and for research that finally matches the urgency of the situation.