In the thread about the difficulty of describing fatigue, someone mentioned that everyone hates the word 'malaise'. It's vague, I assume clinically unmeasurable, and linked to misperceptions (maybe confused with 'malingering'). Is PEM more accurately described as post-exertional sickness behaviour? I've included the definitions below.
Wiki: 'Sickness behavior is a coordinated set of adaptive behavioral changes that develop in ill individuals during the course of an infection.[1] They usually (but not necessarily)[2] accompany fever and aid survival. Such illness responses include lethargy, depression, anxiety, malaise, loss of appetite,[3][4] sleepiness,[5] hyperalgesia,[6] reduction in grooming[1][7] and failure to concentrate.[8] Sickness behavior is a motivational state that reorganizes the organism's priorities to cope with infectious pathogens.[8][9] It has been suggested as relevant to understanding depression,[10] and some aspects of the suffering that occurs in cancer.'
Miriam-Webster: 'Malaise definition is - an indefinite feeling of debility or lack of health often indicative of or accompanying the onset of an illness.'
My PEM certainly makes me want to curl up and wait for it to pass. Part of it can certainly be considered malaise, but there's also pain and lack of interest in things, so sickness behaviour seems to fit better. Since the medical community might accept 'sickness behaviour' as a valid symptom more readily than 'malaise', maybe a change of term is worthwhile. Yes, it's just a change of term, but that term can have major influence on how a doctor interacts with a patient.
For the poll, I'm most interested in seeing whether there are many people who feel the sickness behaviour definitely doesn't describe their PEM symptoms.
I also came across some papers stating that sickness behaviour is caused by cytokines in the brain, with different cytokines having different effects. That seems to fit ME, with people having different levels of individual sickness behaviours, likely due to different neuroimmune responses.
I do admit that PESB is unfortunately harder to pronounce.
Wiki: 'Sickness behavior is a coordinated set of adaptive behavioral changes that develop in ill individuals during the course of an infection.[1] They usually (but not necessarily)[2] accompany fever and aid survival. Such illness responses include lethargy, depression, anxiety, malaise, loss of appetite,[3][4] sleepiness,[5] hyperalgesia,[6] reduction in grooming[1][7] and failure to concentrate.[8] Sickness behavior is a motivational state that reorganizes the organism's priorities to cope with infectious pathogens.[8][9] It has been suggested as relevant to understanding depression,[10] and some aspects of the suffering that occurs in cancer.'
Miriam-Webster: 'Malaise definition is - an indefinite feeling of debility or lack of health often indicative of or accompanying the onset of an illness.'
My PEM certainly makes me want to curl up and wait for it to pass. Part of it can certainly be considered malaise, but there's also pain and lack of interest in things, so sickness behaviour seems to fit better. Since the medical community might accept 'sickness behaviour' as a valid symptom more readily than 'malaise', maybe a change of term is worthwhile. Yes, it's just a change of term, but that term can have major influence on how a doctor interacts with a patient.
For the poll, I'm most interested in seeing whether there are many people who feel the sickness behaviour definitely doesn't describe their PEM symptoms.
I also came across some papers stating that sickness behaviour is caused by cytokines in the brain, with different cytokines having different effects. That seems to fit ME, with people having different levels of individual sickness behaviours, likely due to different neuroimmune responses.
I do admit that PESB is unfortunately harder to pronounce.