That is what I am not sure about. I have had 'Long Covid' for about 2 months on two occasions. I was completely exhausted and had no sense of being able to do anything that involved exertion but at no time did I think I had the illness that members here describe. I had no OI, no sensitivity to light, no post-exertional crashing. I had bouts of nausea but mild. I had some of my usual stomach pains in the night but not more so.
A small number of people after Covid get roller-coaster crashes and have to lie in the dark, yes, but I don't think that is the same as what I had and what others I know describe.
'Mostly identical' doesn't cut it in useful diagnostic categories I think. Rheumatoid arthritis and seronegative inflammatory arthritis can be genuinely identical in clinical presentation but we have two syndromes because we had reason to think there were two different mechanisms and that turned out right. All the stuff we hear about illnesses having very similar symptoms is I think a false alley. It is the tiny clues that tell us which syndrome to go for very often. If a patient has one or two marks under the fingernails that look like oil drops they almost certainly have seronegative arthritis.
So I don't think the difference between ME/CFS and PVF is necessarily just going on longer. I also think that in a sense we may need to follow ME?CFS for a matter of at least weeks in order to see the ups and downs of PEM that make it that syndrome. You cannot tell that you have a grandfather clock that chimes the hour unless you wait for an hour to come around.
I wouldn't for a minute suggest that people without ups and downs can be given exercises. The thing about choosing which people to give exercises is to me nuts since nobody needs exercises when convalescing. It is, as far as I know, always best to go gently and do more when you feel really ready - and there is never a need to exercise to be able to do more. You just do the more things you want to do.
I agree in the sense of a weird angle that might be just anecdote based on assumption. Those who I know who have said they have PVFS have been very sure about it.
Far more sure than anyone (except maybe the ones who had the suddenly extraordinarily ill and bedbound for years from the start type) who has ended with an me/cfs was .
I think that’s down to the slightly less straightforward pattern and timing/type of symptoms in me/cfs in that over threshold can leave you feeling ‘in the zone’ running on adrenaline then (not immediately) later not knowing why you can’t wake up and force your brain awake to work to that deadline. Having unreasonable calf aches after driving for not a hugely long journey. Sometimes being able to push through. The growing aches that ‘could be something else’
it’s an illness that disorientated you because it isn’t that straightforward and I don’t know if it’s just extra symptoms or severity or the sensitivity to other things leading to delayed or cycles of that make links less obvious and cumulative.
ie me/cfs is NOT that simple. At best we might suspect post viral because we never got back to ourselves after ‘that virus’. But I struggle with ‘the gap’ and etiology questions not just because of how far back it is but because I had so many illness bouts and wonder whether the bad ones I remember were bad because of me/cfs already being there and not the other way around.
I keep thinking back (I’ve had a lot on) to think whether the difference in my athletic training was actually before I acknowledged it (not getting any fitter takes time to conclude) and before the big illness. It’s not like I hadn’t been ill whilst being a runner before and being used to that slow building back up to where your fitness was again. I sort of eventually gave it up and didn’t think too much of it (was never going to be that good) but it was then the other sports I just did fir pleasure/being part of team draining me that confused me. To the point I didn’t acknowledge it because I was definitely used to a bit of a run around ‘waking my brain up’ and I didn’t understand why that didn’t work. Or maybe the thing was sometimes it did at the time, other times when feeling awful then not and not looking out fir the specific connection of that and other obligations to what because I wasn’t allowed rest a lot of random struggles and accelerating decline.
I’m not so stupid I thought I still had tonsilitis or flu or glandular fever and was going to the gym etc to wake up brain because of that strange up and down when you are overdoing it (I assume that’s the reason as I know what I had on my plate and know what that does to me now)
getting a decent definition of me/cfs and stopping these behavioural/misthinking/wrong method staff at fatigue/pps clinics from focusing on fatigue and the least ill instead of the correct illness and those most ill is vital because of the insanity they cause by their gaslighting. It’s why we feel so deep down stripped of ourselves by someone determined to tell us it’s just like when they as healthy people get fatigue and behave themselves better - because we’d all done that calmly to realise we were ill. Hence why I want to get rid of the fatigue term.
And whilst I understand as I didn’t totally get/understand the PEM cycle like I do now (but did know I could be ‘more productive than some norms’ then flat on back ill) and when stuck in the plugging on the symptoms would have been very different to this ‘clarity’ I think having some ‘compromise version’ of this would cause more confusion vs thinking it could be useful if we perhaps might need to add a pre-diagnosed bit to quite a specific condition concept once eg someone can have two weeks off being left alone to fully rest (then watch the patterns as a test). And that aim of clarity of concept is vital to stop the huge harm of all this disorientation of patients themselves and others around them assuming other things.
I also think people as colleagues would spot someone with pvfs from spending a week with them but not me/cfs as they are totally different patterns and ‘ability to performing seal’ then collapse and it’s that enforced ‘hide your iceberg’ that crushes us. as it means we get no life first and we get worse. And the ‘take it slowly’ just doesn’t work.
sadly it is unbelievably swift deterioration in all the areas those professionals suggest are other mental health conditions (losing weight, sleep, cognitive) but very much aren’t these just a body being forced into unsuitable circumstances where they can’t meet the body’s needs because that’s what their programmes keep someone in ‘in the name of routine being more important than anything’ caused by their very very bad treatment or self help suggestions that are the diagnostic of me/cfs.
I don’t think pvfs works the same way and it’s not personality type that they ‘just don’t complete the first day as it’s too much’ vs the me/cfs person pushing through then it’s those having to do the later days in a now haywire body that makes for exponential vs pvfs impact. Because the pvfs stuff is understood /more run of mill with ‘normal expectations’ (a slowed down person) where the me/cfs sleeping through your alarm until 2pm on wed (and still then knowing you sound out if it) when you seemed good yesterday isn’t.
the clinics are trying to use their boom and bust bs to turn me/cfs people into pvfs people and then ‘just fatigue’ people (where as they pace-up and ‘manage their energy levels’ with a cup of coffee instead of radical rest based on conserving energy levels) is disastrous because they then just push the me/cfs buttons tgat the pwme went through doing and took six months to realise they lead to kidding yourself, hell trying to keep turning up as it goes on and then a big deterioration at six months where you get accused of ‘having something else’
so yes thinking about it I think they might well be different
