What proportion of people with ME/CFS who become severe or very severe do so within the first three months? Did you?

[neophyte32]

I've never been severe despite having ME for 31 years. I was able to study for 2 degrees despite having ME, but have worsened very slowly. I'm still only mildly affected, although I need about 3 days to recover after, e.g., shopping.

What are the symptoms when u are in PEM ? U are bedridden or exhausted but still functionnal ?

 

[Mij]

-Sudden viral vestibular onset 1991. Was still able to attend school and exercise. Had mild sore throat and ear. Didn't have PEM or delayed PEM.

-Six months later- 'extremely elevated anti-thyroid antibodies".

-Felt almost recovered 9 months later from PVFS, but relapsed badly after returning to work 4 weeks later.

-Did aggressive rest therapy for 5.5 years and felt almost recovered again. but started exercising and experiencing PEM and delayed PEM for the first time.

-Took immune modulators in 2001 and had major relapse that reactivated EBV and HHV6. Recovered after 2.5 months and started running again.

-all that changed my baseline and I developed OI.

 

[Mij]

So I am considered moderate, but experience very severe delayed PEM.

 

[BrightCandle]

Mild to begin with, GET caused moderate condition about 2 years in and COVID infection made me very severe at 2.5 years.

 

[DHagen]

After a very long prodrome/period of being "very mild," I declined over a few weeks to moderate, where I stayed for a year or so. About two months after diagnosis, in the midst of that decline to moderate, I had a crash that left me severe for about two weeks - this was actually the first time I had PEM significant enough that it forced me to confront that the diagnosis was real - but then I returned quite quickly to my sloping "baseline." There were a few more crashes knocking me into severe for a short spell over the next year, then slow improvement to somewhere fluctuating between mild and moderate most of the time, more or less up to the present day.