Post-exertion symptom exacerbation
One of the most common and recognizable aspects of CFS is what is called "post-exertional malaise". When people with CFS exert themselves beyond their limits (and their limits may change daily), their symptoms worsen. Exertion includes cognitive effort. The harder the exertion and the longer it lasts, the worse the symptoms will be afterward, and with greater recovery time. Although symptoms may increase immediately and proportionally, usually their full extent is delayed by 24 or more hours, which can make judging appropriate activity difficult.
A cyclical pattern can occur when patients work harder because they "feel better" or are having a "good day", leading them to think they can exert themselves more than usual. However, the excess exertion leads to worse symptoms on the following day. Thus it is difficult for patients to maintain an even level of activity, or to tell if they are improving. In sufferers without a diagnosis of CFS, or a proper understanding of how CFS affects exertion, this can lead to a "downward spiral", where a sufferer will try to work harder to make up for the previous day's lack instead of resting. This exhausts them further, and often can trigger a relapse or worsening of their condition. If the original exertion, which can be physical or mental in nature, was particularly severe, the sufferer may deteriorate to a point where they are unable to care for themselves. Many cases then result in hospitalisation because the condition has deteriorated a great deal.
However, it must be noted that patients may deteriorate due to external stressors, complications, co-morbid illness, or for unknown reasons, and in those cases, patient exertion cannot be blamed for a patient's deterioration. Also, some patients have a progressive course which cannot be explained through activity levels.
When the illness is coupled with unaccommodating family, friends, colleagues, often due to
stigma, and social repercussions such as financial needs, housing problems, the struggle to obtain disability benefits or insurance, discrimination and misconception within the care sector, it can put demands on the sufferer exceeding their safe capabilities. Many sufferers describe needing to do things for themselves in the times they feel better simply because there is no-one to delegate to.
