Jonathan Edwards
Senior Member (Voting Rights)
I am not distinguishing any of these. Just something that leads to a later change.
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
I am not distinguishing any of these. Just something that leads to a later change.
neophyte32
Senior Member (Voting Rights)
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?
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.
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
Senior Member (Voting Rights)
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.
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DMissa
Senior Member (Voting Rights)
@Jonathan Edwards perhaps some sort of link to an online poll could be useful to get a feeling of proportions amongst members
AliceLily
Senior Member (Voting Rights)
https://www.s4me.info/threads/me-cfs-progression-in-years-and-stages.24062/
This thread above has members posting their ME/CFS progression also.
This thread above has members posting their ME/CFS progression also.
Evergreen
Senior Member (Voting Rights)
There I was thinking the severity poll was my idea. Then I see your message again and realise I probably got it from you! I know you were suggesting a poll about this thread's question, but I think your message must have got me thinking about the severity composition of S4ME.
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Fancymyblood
Established Member
My onset was like someone suddenly flipped a switch one day. Still remember the very moment! Was 16 years old, chilling in the pool in the backyard during summer holiday and when I tried to get out I got very dizzy and felt exhausted and spaced out. Boom! Severe ME for the first 9 years. Never fully recovered.
Starrynight
Established Member (Voting Rights)
I don't really know how to make sense of this question. I can remember when I first got ill, quite suddenly as if a viral infection. After that I was severely ill and bed bound for at least three months. That was put down to Glandular fever, but was it? I didn't have any definitive test result as far as I am aware. After a degree of recovery I slowly regressed into a fatigued state (with frequent bouts of "PEM") up and down ever since, but never for any length of time what would be classed as severe.
Yes I know people are going to say the "triggering" event is not the ME/CFS, but how does anyone know for sure in a case like mine. For myself it makes as much sense to say I have a Post Viral Syndrome still forty years later, nothing seems to be better understood.
Yes I know people are going to say the "triggering" event is not the ME/CFS, but how does anyone know for sure in a case like mine. For myself it makes as much sense to say I have a Post Viral Syndrome still forty years later, nothing seems to be better understood.
Mij
Senior Member (Voting Rights)
I went from being a very healthy fit person and one viral attack changed everything.
I think ME/CFS was already in the cards from day one after sudden viral onset. We eventually recover from the initial virus. I thought I recovered after 9 months, only to relapse 4 wks after returning to work. I could have rested for decades in a 'mild' state of ME, and just one 45 minute run would have put me into severe delayed PEM.
I haven't had delayed PEM for years from pacing.
I think ME/CFS was already in the cards from day one after sudden viral onset. We eventually recover from the initial virus. I thought I recovered after 9 months, only to relapse 4 wks after returning to work. I could have rested for decades in a 'mild' state of ME, and just one 45 minute run would have put me into severe delayed PEM.
I haven't had delayed PEM for years from pacing.
Jonathan Edwards
Senior Member (Voting Rights)
I think the first answer is that what we mean by ME/CFS is the long term clinical picture, not some 'disease' that 'causes' a clinical state or set of symptoms. This is a semantic problem that bedevils all our discussions. Yes, we think there is also a 'disease' that we also call ME/CFS but if we end up arguing that ME/CFS causes ME/CFS we get nowhere.
In more practical terms the reason for discounting an initial episode of feeling very ill that could be an infection like EBV is that it could be that and what I was looking for was evidence for something, that isn't that, being severe right at the start. The question may exclude some valid data but that's OK. The hypothesis under test is that a subsequent long term process that isn't the initial infection never starts severe but only gets there by stepwise deterioration. That is quite likely wrong but it would be important if it turns out to be true because it implies more than one regulatory shift. We have a big problem finding an explanation for one regulatory shift, so more than one narrows things down even more.
Starrynight
Established Member (Voting Rights)
My previous post was badly written and may have suggested I think that ME/CFS has a specific causative infectious agent. That wasn't what I intended, sorry it didn't make that clear.
What I find problematic is once you get a label of GF/mononuclueosis the expectation is that the named illness will take a certain time to resolve and then post viral fatigue is allowed to be fairly common for 6 months or so afterwards, so at what point do you mark the start of it being something else? My own experience was that doctors were getting increasingly reluctant to explain my continuing sickness with GF after a year had passed and started to push a psychological explanation of symptoms. By that time I was aware of the idea of ME thanks to some media coverage, so had some counterbalance to the pressure to accept that (BPS) narrative.
I would say I was more severely ill than what is described for typical GF/Mono from when those symptoms manifested, so I am genuinely unclear, within three months of what event exactly are we talking about? With Long Covid (or PASC) do people talk about the condition lasting from the initial infection or perhaps after antigen testing is negative? In those cases is it categorised as ME/CFS if a certain constellation of symptoms is present after some arbitrary period, or has the permissible duration of PVS been stretched for new diseases?
What I find problematic is once you get a label of GF/mononuclueosis the expectation is that the named illness will take a certain time to resolve and then post viral fatigue is allowed to be fairly common for 6 months or so afterwards, so at what point do you mark the start of it being something else? My own experience was that doctors were getting increasingly reluctant to explain my continuing sickness with GF after a year had passed and started to push a psychological explanation of symptoms. By that time I was aware of the idea of ME thanks to some media coverage, so had some counterbalance to the pressure to accept that (BPS) narrative.
I would say I was more severely ill than what is described for typical GF/Mono from when those symptoms manifested, so I am genuinely unclear, within three months of what event exactly are we talking about? With Long Covid (or PASC) do people talk about the condition lasting from the initial infection or perhaps after antigen testing is negative? In those cases is it categorised as ME/CFS if a certain constellation of symptoms is present after some arbitrary period, or has the permissible duration of PVS been stretched for new diseases?
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