Data/info request from Robert Phair for Relapse/Remit people

[Simone]

I had sudden onset (EBV) in 1995 and was moderate-severe for 3.5 years. Then I went into partial remission (though I thought I had recovered): I wasn’t able to work full time, but could work part time and have a full life, but I was still exercise intolerant and experienced PEM. I’ve had three relapses: the first two were mild (I was able to keep working, but rested a lot and cut back on activity generally). They each lasted about 6 months. The last relapse (5 years ago) started mild. I tried the same approach as the previous two, with resting and cutting back, but it didn’t work. After six months, instead of recovering and going back into partial remission, I worsened and became severe. The time between each relapse has been longer each time.

 

[Mij]

Could there be a difference between gradual slow and sudden viral onset? From reading the responses it appears those of us with sudden viral onset experience partial or 90% remission?

I didn't experience PEM until I was 90% improved and started exercising again. That was 5.5 years after onset.

Do we need to set up another poll?

 

[Trish]

Could there be a difference between gradual slow and sudden viral onset? From reading the responses it appears those of us with sudden viral onset experience partial or 90% remission?

I don't think we can conclude anything about onset and remission from a few people describing their experiences of remission. The thread specifically only asks for people who have experienced remission to tell their stories. Lots of us with sudden onset haven't had any remission, so we're not posting on this thread.