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

[Jonathan Edwards]

Is the accumulation of long-term efforts considered a second event, or are you referring to a new infection, a new major shock, or a significant, more sustained effort?

I am not distinguishing any of these. Just something that leads to a later change.

 

[neophyte32]

I'm sure you are aware of this, but there's quite a lot of annecdote about patients having the initial trigger/infection, seemingly then on the mend for a week or two, and then crashing bad, and subsequently developing ME/CFS.

It's difficult to define the prodromal phase from the onset of the illness because the two overlap.

For me, on January 9, 2022, at 7 p.m., there were many factors that could explain the onset of the prodromal phase: mixing alcohol and tramadol, untreated Lyme disease, the COVID vaccine... I collapsed with my quadriceps completely paralyzed... they were vibrating. Then, two hours later, I experienced burning all over my body. And then hyperacusis, fatigue, brain fog, chills...
Twelve days later I caught Covid, then dry eyes and mouth, sudden and strange fatigue (PEM?).
It lasted, but I could continue exercising, which actually made me feel good, and have drinks with friends and work full time (work from my home, but very intellectually demanding - book editor).
They only found one thing out of 1000 tests that wasn't right: Lyme disease (positive Western blot, but old infection) and a moderately compromised blood-brain barrier.

Then in April 2023, I drank too much, took drugs, exercised two days later, and it all started. My body stopped working mid-run, as if it had changed. Then, two hours later, I had a tetany attack and panic.
I'm becoming intolerant to exertion and stimuli, intermittently, with panic attacks.

Did I already have MECFS in January 2022? Was it a "simple" shock to the central nervous system?

 

[Spartacus]

My onset was sudden, but also gradual. A bit like the onset of MS.

I went to bed completely normal, and woke up next day with all the symptoms of what I now call "very severe" ME. After a week I was back to normal. Then about 6 weeks later I had another attack. And so on.

I fluctated between completely incapacitated and completely normal for about 2 years. Then I had the misfortune to be sent to see a neurologist. He told me to do very vigorous exercise 3 times a week. Dutifully I did as advised. The next attack became permanent. I was completely bedridden for a decade. Now just severe/moderate. Been ill now for 26 years. I wish I had never gone to the doctors.

 

[MeSci]

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

When in PEM I am brain-fogged and unable to do much, but am not bedridden. I can just-about cook.

Maybe I shouldn't be in this thread, as I'm only mildly affected, but unable to work, although I don't need to now, being a pensioner.

 

[DMissa]

@Jonathan Edwards perhaps some sort of link to an online poll could be useful to get a feeling of proportions amongst members

 

[AliceLily]

https://www.s4me.info/threads/me-cfs-progression-in-years-and-stages.24062/

This thread above has members posting their ME/CFS progression also.