Thread by @SarahOC_MECFS

Do ppl understand that ppl die from #MECFS?
Common cause is starvation as the stomach shuts down.

We're now seeing trend amongst #LongCovid patients; where many of those severely ill are seeing huge rapid weight loss. I'm begging parents to take action early if your child 1)

Has the signs of #LongCovidKids.
Majority of ppl who become severe do not start out that way. Rather they steadily decline.
Common cause of decline is pushing through PEM.This is why we talk about the importance of early diagnosis. Promise you as a parent if your child becomes 2)

Severely ill w LC, you'll need to know you've done everything to care for them from the start. There are many parents out there w sick children who
a) dont know its LC because they aren't educated about LC
b) are in denial.
Those children likely to become more sick as they 3)

Persist with their daily routines.
We'll likely see more fatalities from #LongCovid over the coming yrs. We'll need to ensure those deaths are recorded as LC. Same fight was waged for ME deaths to be recorded as such. Parents need to understand the risks of ignoring symptoms 4)

Same applies to adults with #LongCovid

New LC patients need to;

1 Recognise likely LC (symptoms are unique +infection history makes it clear)

2 Reduce activity as far as required to reduce PEM

3 Obtain diagnosis

4 Receive active symptom mgmnt strategies incl. medication 5)

Aim of thread isn't to fear monger.
Death isn't hugely common outcome in #PwME thankfully.
However 25% of those w ME are severe.Many of those entirely bedbound for yrs & yrs, a fate many describe as worse. Unsure of LC severity breakdown yet but may follow similar pattern. End

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