tomkindlon, 2 months ago

2/

"PEM includes a long list of symptoms. Fatigue is just one of these symptoms. Some others include: tinnitus, headaches, GI problems, light and noise sensitivity, musculoskeletal pain, muscle weakness, cognitive dysfunction, dizziness and flu-like symptoms. Some of these symptoms are much more debilitating and unpleasant than mere fatigue."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs

Rhube, 2 months ago

@tomkindlon @mecfs 'mere' fatigue. I'm so angry with the ableist **** who wrote this. Fatigue is NOTHING 'mere'. (Not directed at Tom, of course - at the paper.)

tomkindlon, 2 months ago

3/
"But there is an even more important difference between PEM and fatigue: duration.

Fatigue generally lasts 24 hours. In really exceptional circumstances, say if someone ran a marathon, fatigue might last a couple of days."

@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
#MEcfs #PwME

@mecfs

Rhube, 2 months ago

@tomkindlon @longcovid @mecfs Bahahaha, what utter bollocks. Fatigue rarely if ever lasts as little as 24 hours for me.

Rhube, 2 months ago

@tomkindlon @longcovid @mecfs JUST ludicrous. Like yes, of course, PEM isn't just fatigue, but this minimising of fatigue as a symptom that I see everywhere makes me furious. It is far and away my worst symptom and it is far from fucking brief.

JetlagJen, 2 months ago

@Rhube @tomkindlon @longcovid @mecfs genuine question: how do you tell the difference?

Is PEM as "simple" as a bunch of symptoms happening together or is there some specific diagnostic thing?

I know if I do too much lots of symptoms get worse, including the fatigue. I know that can be a direct busy day -> bad day thing, and I know it can be cumulative building up to a crash. In many ways it doesn't matter what it's called. But maybe I could manage it better if I understood more?

Rhube, 2 months ago

@JetlagJen @tomkindlon @longcovid @mecfs ' if I do too much lots of symptoms get worse, including the fatigue.' That's PEM. And it sounds like you already know how to distinguish what fatigue is.

It matters what it's called because fatigue is an extremely debilitating element that is often dismissed. As it was in this case.

I'm not willing to be quizzed any further on a sensitive matter over a week after I was talking about it. I do not have the spoons.

tomkindlon, 2 months ago

4/

"PEM is dangerous. PEM can last hours, days, weeks, months, or a lifetime. Its duration and severity are wildly out of proportion to whatever prompted it. It can result in permanent harm. PEM can take a person who is able to work or look after their children, and make them bedbound. PEM destroys lives."

@longcovid @mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC

tomkindlon, 2 months ago

5/

"Any healthcare practitioner who fails to recognise the difference between fatigue and PEM is a danger to their patients."

#PwME #MyalgicE #postcovid19 #LC @longcovid @mecfs