ME/CFS epidemiology - early recovery (recovery in the first two years after onset)

Yann04 said:
I had a course somewhat like this. Maybe more like

Trigger -> Moderate (3 Weeks) -> Mild (3 Weeks) -> Practically Recovered (3 months) -> Mild (8 months) -> Moderate (1 month) -> Very Severe (3 months) -> Extremely Severe (2 months) -> Very Severe (2 years)

You can probably guess when I started doing intense physiotherapy lol
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For me trigger mild or LC with PEM (4 month) remission (9 months) trigger mild (15 months) covid moderate (4 months) very severe (2 months) severe (3 months very) severe/severe (4 months)
 
Yann04 said:
Nous avons donc tous les deux suivi cela.
Déclencheur -> Tendance à la hausse
Quelque chose change (pour votre deuxième déclencheur) -> Tendance à la baisse avec très peu de hausse
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Yes, the second trigger in April 2023 put me back into light training, but for longer than you. I stayed in light training for a long time, over a year (lots of sports). Something broke just before I caught COVID, probably too much exertion. COVID finished me off right after... but I continued with sports anyway because I was moderate until... the end and bed in March 2025.
 
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Yann04 said:
Theres also a lot who had the sort of

Trigger -> Severe -> Moderate -> Mild -> Very Mild

course

while you hear a lot of people who are severe long term paradoxically have a sort of

Trigger -> Moderate -> Mild -> Big Crash to Severe

(this is purely anecdotal)
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I would say my course was like

(prodromal phase) - trigger - very mild - mild - mild/moderate - mild - (GET) mild/moderate - (end GET) moderate - severe - very severe - severe (with a couple more repetitions of the last step)

Fwiw
 
Started Very mild/mild (oblivious to having ME//CFS) no obvious individual trigger. Regular unexceptional flu type illnesses over roughly a decade gradually worsening, alongside onset of menopause
Prescribed Lyrica for pain its sedation contributed to a fall resulting in bad sprain on both legs foot/ankle. Became moderate at this time and finally diagnosed. Been moderate for 10 years now variable symptoms depending on activity levels and also a bout of Covid in 2022.

summary
No obvious initial trigger- Very mild (approx 5 years)- mild (approx 5 years) -diagnosis, moderate (10 years)
 
neophyte32 said:
Aren't the most serious cases those that follow the pattern: trigger - mild - moderate - severe? Those that deteriorate over several years without diagnosis and who continue playing sports, working, etc.? I used to have panic attacks during exertion, and it wasn't until three years later that we understood I had a severe form of exercise-induced panic disorder (SEFD)... I've been bedridden for a year now. Fourth year of symptoms (I had a few months of remission the first year, oddly enough).
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I had a similar course. Sadly 31 years quite severely though thankfully not as bad as the first 9 months after being diagnosed when I was basically bedridden (struggled to walk the 10-12 steps to the toilet bowl a few times a day; 5 or so minutes of light mental activity per hour).
 
dave30th said:
Do people who have PVF that's on a recovery trajectory also generally report PEM?
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It's unclear.

I know two who recovered (one after over a year of post-EBV symptoms, the second after long Covid), who both had PEM. A third (also long Covid) didn't recognise descriptions of PEM; her issues were mostly intractable fatigue and migraines.

Best guess is that it's probably a mixed picture. It'd be difficult to say that so few with PVFS get classic PEM that it could be used to distinguish between that and ME/CFS.
 
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