Jonathan Edwards
Senior Member (Voting Rights)
I am interested to know how often ME/CFS starts off severe or very severe and whether in general it becomes so later on.
What proportion of people with ME/CFS who become severe or very severe do so within the first three months? Did you?
- Thread starter Jonathan Edwards
- Start date
TiredMathematician
Established Member (Voting Rights)
I became severe and then very severe after about 3 years of ME (gradual onset and decline so can't say exact duration).
InitialConditions
Senior Member (Voting Rights)
Gradual onset. Severe after 5 or 6 years.
I know sudden onset occurs and can be severe, but it's possibly less common than many think. I'm not aware off the top of my head of any papers/stats for this.
I know sudden onset occurs and can be severe, but it's possibly less common than many think. I'm not aware off the top of my head of any papers/stats for this.
InitialConditions
Senior Member (Voting Rights)
There's also a complicating factor that some have a severe initial infection, usually lasting weeks, and report/class that as being severe, although to me that is something a bit different.
RainbowCloud
Established Member (Voting Rights)
Mild for 5 years
Moderate dipping to severe the next 2 years
Severe dipping to very severe sometimes for 3 years (and counting)
… so it’s gradual however my worsening happened overnight both times. The first time, I don’t know why. The second time I had a second round of EPD and I suspect my immune system couldn’t handle it for some reason.
Moderate dipping to severe the next 2 years
Severe dipping to very severe sometimes for 3 years (and counting)
… so it’s gradual however my worsening happened overnight both times. The first time, I don’t know why. The second time I had a second round of EPD and I suspect my immune system couldn’t handle it for some reason.
I've been mild to mild/moderate throughout, just severe during PEM, which lasts no more than a few days.
My son was the same, expect for a month or so of being severe, probably very severe, after a high level of exertion. He gradually returned to mild/moderate function over about 6 months.
My son was the same, expect for a month or so of being severe, probably very severe, after a high level of exertion. He gradually returned to mild/moderate function over about 6 months.
Utsikt
Senior Member (Voting Rights)
I started off as essentially severe during the acute infection, but I did way more than I should. I’ve never been not-sofa-bound for most of the day, even though I’ve exercised because that’s what I was told to do.
I think you’d have to feel extremely bad to go straight to lying in bed all day - or even realising that it’s an option.
I’m still severe.
I think you’d have to feel extremely bad to go straight to lying in bed all day - or even realising that it’s an option.
I’m still severe.
At start, I was moderate quite suddenly although there had been a couple months of weird building symptoms. It onset 4 months after a bad viral infection which was itself 3 months after first proper flu as an adult.
I became severe 2 years later after doing the 2 day cpet for disability insurance. The descent into severe became apparent in the weeks and months after the cpet. I realized my baseline was much lower and all my sensory sentivities and vision distortion that had been only PEM symptoms became 24/7. I went into a six month long bad crash bc I kept trying to do things I’d managed at prior baseline.
I became severe 2 years later after doing the 2 day cpet for disability insurance. The descent into severe became apparent in the weeks and months after the cpet. I realized my baseline was much lower and all my sensory sentivities and vision distortion that had been only PEM symptoms became 24/7. I went into a six month long bad crash bc I kept trying to do things I’d managed at prior baseline.
neophyte32
Senior Member (Voting Rights)
January 9, 2022:
Prodrome (tingling and burning sensations throughout the body, sudden fatigue after mental exertion, sensitivity to noise, dry eyes and mouth, electric shock sensation in the arm while running). Why? Tramadol and alcohol abuse? Shock 10 days prior during a metal concert (nothing on MRI), untreated Lyme disease (positive Western blot) for years?
January 19, 2022: Positive for COVID-19.
April 2023: Mild. exercise-induced spondylitis after drug and alcohol abuse. Two days later, awakening with illness and panic attack upon exertion, tetany attack, convulsion. Onset of exercise intolerance and panic attacks.
April 2023 - December 2023: 7 cases of strep throat and panick attack. Some PEM but not too many. Panick attack = PEM ? I dont know.
June 2024: Moderate/mild onset of POTS syndrome after an evening of alcohol and exercise two days later.
September 2024: COVID-19.
April 2025: Very severe crash, and I understand I have a MECFS. Before, I was thinking about burnout and POTS si i exercise a lot... what an idiot.
June - September 2025: Severe thanks to LDA (Legg-Calvé-Perthes disease).
October 2025 - present: Very severe after a botched stellate ganglion block performed by an amateur.
I only stopped working and playing sports 3 years after the prodromal symptoms. Note that in 2022 I was more than light, despite a few minor PEM episodes (2 or 3, but few hours of intense fatigue), otherwise I was at 100% for sports and work. Sports were even good for me. Incomprehensible. April 2023: Real turning point.
Very progressive...
Prodrome (tingling and burning sensations throughout the body, sudden fatigue after mental exertion, sensitivity to noise, dry eyes and mouth, electric shock sensation in the arm while running). Why? Tramadol and alcohol abuse? Shock 10 days prior during a metal concert (nothing on MRI), untreated Lyme disease (positive Western blot) for years?
January 19, 2022: Positive for COVID-19.
April 2023: Mild. exercise-induced spondylitis after drug and alcohol abuse. Two days later, awakening with illness and panic attack upon exertion, tetany attack, convulsion. Onset of exercise intolerance and panic attacks.
April 2023 - December 2023: 7 cases of strep throat and panick attack. Some PEM but not too many. Panick attack = PEM ? I dont know.
June 2024: Moderate/mild onset of POTS syndrome after an evening of alcohol and exercise two days later.
September 2024: COVID-19.
April 2025: Very severe crash, and I understand I have a MECFS. Before, I was thinking about burnout and POTS si i exercise a lot... what an idiot.
June - September 2025: Severe thanks to LDA (Legg-Calvé-Perthes disease).
October 2025 - present: Very severe after a botched stellate ganglion block performed by an amateur.
I only stopped working and playing sports 3 years after the prodromal symptoms. Note that in 2022 I was more than light, despite a few minor PEM episodes (2 or 3, but few hours of intense fatigue), otherwise I was at 100% for sports and work. Sports were even good for me. Incomprehensible. April 2023: Real turning point.
Very progressive...
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Yann04
Senior Member (Voting Rights)
It took me a year and a bit?
You could argue I was severe for a couple weeks during onset but its really hard to tell if I was spending my days in bed because of recovering from ACL surgery or because ME/CFS had been triggered. Even if it was ME/CFS I‘d consider a couple weeks a crash more than a baseline.
But I improved to very mild quite quickly and only a year and a bit later did I permanently decline to very severe.
You could argue I was severe for a couple weeks during onset but its really hard to tell if I was spending my days in bed because of recovering from ACL surgery or because ME/CFS had been triggered. Even if it was ME/CFS I‘d consider a couple weeks a crash more than a baseline.
But I improved to very mild quite quickly and only a year and a bit later did I permanently decline to very severe.
Evergreen
Senior Member (Voting Rights)
No, wasn't severe in the first 3 months. Severe from about 5-6 years post-onset.
Improved for the first year and a half from moderate through mild to apparently recovered. Then relapsed after resuming vigorous exercise and the direction reversed, so that I got worse for ten years, from mild to moderate to severe, dropping down in steps. More stable now, but have remained severe.
Improved for the first year and a half from moderate through mild to apparently recovered. Then relapsed after resuming vigorous exercise and the direction reversed, so that I got worse for ten years, from mild to moderate to severe, dropping down in steps. More stable now, but have remained severe.
Evergreen
Senior Member (Voting Rights)
Good points. If we include the triggering infection, I would qualify as severe at the very beginning, but I too see that as something different. Once through the infection proper, I was trying to be as active as a moderate person but in reality I was close to severe, albeit briefly.
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obeat
Senior Member (Voting Rights)
Day one vomiting and severe headache.
Day 2 felt a bit washed out but decided to walk to mum's house 10 minutes away. Urgent need to lie down for a couple of hours as soon as I reached the house. That was the start of OI. Didn't experience what I now call pem for about nine months because OI dominant symptom.
Mainly mild for about three years then sudden descent into severe ME following virus. 100% bedbound for 2 years.
30 years later I don't feel so awful but functional capacity severely limited.
Day 2 felt a bit washed out but decided to walk to mum's house 10 minutes away. Urgent need to lie down for a couple of hours as soon as I reached the house. That was the start of OI. Didn't experience what I now call pem for about nine months because OI dominant symptom.
Mainly mild for about three years then sudden descent into severe ME following virus. 100% bedbound for 2 years.
30 years later I don't feel so awful but functional capacity severely limited.
Peter T
Senior Member (Voting Rights)
My experience has included various different patterns/triggers:
- With initial onset, triggered by acute glandular fever (mono), I was ill for several months resolving to mild ME/CFS.
- First major relapse five plus years in, triggered by seasonal flue, was severe for a couple of years but then resolved to mild
- Second major relapse ten years in, triggered by a fifteen mile hike, was moderate, resolving to mild/moderate over several years
- Third major relapse twenty years in, no obvious single event/trigger though preceded by gradual increase in overall activity over a number of years, gradual deterioration to very severe over six months plus and then very very gradual improvement over ten years to severe.
Obviously over thirty plus years there have been lots of ups and downs relating to PEM short term, and some longer ups and downs not dramatic enough for me to subjectively class as major relapses. However I only become consistently very severe/severe longer term some twenty years post onset.
- With initial onset, triggered by acute glandular fever (mono), I was ill for several months resolving to mild ME/CFS.
- First major relapse five plus years in, triggered by seasonal flue, was severe for a couple of years but then resolved to mild
- Second major relapse ten years in, triggered by a fifteen mile hike, was moderate, resolving to mild/moderate over several years
- Third major relapse twenty years in, no obvious single event/trigger though preceded by gradual increase in overall activity over a number of years, gradual deterioration to very severe over six months plus and then very very gradual improvement over ten years to severe.
Obviously over thirty plus years there have been lots of ups and downs relating to PEM short term, and some longer ups and downs not dramatic enough for me to subjectively class as major relapses. However I only become consistently very severe/severe longer term some twenty years post onset.
