When is post viral illness PVFS and when is it ME/CFS? Discussion.

boolybooly said:
I doubt that Garner ever had ME of the kind I experienced, he may just have convinced himself he had ME during Covid + Dengue recovery
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Of course he didn't, he has recovered-post-infectious Covid, but for some reason he can't let go of the ME dx.
 
Yes, but seriously, is the mere fact of recovery sufficient to exclude ME? If someone has an illness lasting more than 4 or 6 months, take your pick, which appears to be ME, is the diagnosis to be withdrawn on recovery?

I make no comment about the particular case as there is insufficient evidence to form a reasonable view as to what is going on.
 
chrisb said:
Yes, but seriously, is the mere fact of recovery sufficient to exclude ME? If someone has an illness lasting more than 4 or 6 months, take your pick, which appears to be ME, is the diagnosis to be withdrawn on recovery?
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Many have experienced PVFS for decades and recovered, some not 100% back to baseline, PVFS does not equate ME despite the 'six month' waiting time. It seems everyone from sore legs to breathlessness is experiencing "PEM" since Covid.
 
Mij said:
Many have experienced PVFS for decades and recovered, some not 100% back to baseline, PVFS does not equate ME despite the 'six month' waiting time. It seems everyone from sore legs to breathlessness is experiencing "PEM" since Covid.
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That is one interpretaton. It may be the American interpretation. I do not know. What is reasonably clear is that in the UK theterm PVFS was used to avoid the word encephalomyelitis which was seen as problematical. The description by Behan in 1988 is reasonably clear. PVFS was ME that developed after viral infection.

People may use the term as they wish provided they are aware of other usage.
 
I was dx with PVFS/CFS in 1992 by an ME clinician. I don't think there was a code for encephalomyelitis in Canada at that time or even today?

I recovered fully from PVFS and felt 90% improvement 5-6 yrs after onset. I started exercising and developed PEM. I think I can say that I am more 'expert' than PG after 30 years of having ME.
 
chrisb said:
Yes, but seriously, is the mere fact of recovery sufficient to exclude ME? If someone has an illness lasting more than 4 or 6 months, take your pick, which appears to be ME, is the diagnosis to be withdrawn on recovery?

I make no comment about the particular case as there is insufficient evidence to form a reasonable view as to what is going on.
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I think it raises a really interesting questions. Are there two (or more) different underlying causes but common mechanisms producing symptoms but where one (or several) of the underlying causal mechanisms will fix itself in time. Or are they the same mechanisms and in some people they aren't long term (in which case why?) or even are they initially the same but some change causes long term illness and other changes cause recovery.

We really don't know but I think there could be value in research trying to address this question.
 
chrisb said:
That is one interpretaton. It may be the American interpretation. I do not know. What is reasonably clear is that in the UK theterm PVFS was used to avoid the word encephalomyelitis which was seen as problematical. The description by Behan in 1988 is reasonably clear. PVFS was ME that developed after viral infection.
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They don't refer to Polio as PVFS.
 
There is an interesting discussion in the CIBA conference papers. SW said that he and PDW could distinguish between post viral cases and CFS cases. The ensuing debate was not entirely helpful, but it was an interesting starting point.

Ramsay also wrote, in the MEA magazine, about distinguishing between ME and post glandular fever fatigue.

I could find these if necessary.

Ramsay emphasised the fluctuating nature of symptoms in ME and the straightline progress in PVF (as opposed to PVFS)
 
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chrisb said:
Yes, but seriously, is the mere fact of recovery sufficient to exclude ME?
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I think this is an important question and I am not sure that we have discussed it as such.

My view would be that in a sense the answer is yes.

It is clearly arbitrary to have a requirement of 4 or 6 months for diagnosing ME but such a requirement is only relevant to research criteria. In the clinic the question right from the start will be 'how likely is this to be a long lasting illness that goes beyond a monophasic resolving post-viral episode'? The question can be kept on the back burner for at least six weeks but beyond that it needs to be considered seriously. The passing of a 4 month or six month date makes no particular difference. The chances gradually increase as you get past those time points.

The point being that ME is for me a term that implies at least six months of ill health once you are in a position to look at in in retrospect. If we say Darwin had ME we mean that he had a long term illness. So the six month time point has a different relevance when looking back than looking forward.

I am not personally convinced that ME is clinically any different from some cases of post-viral fatigue in terms of day to day symptoms. It will be different from some PVFS, for instance cases where there is no clear 'crash' effect from trying to do more but just a general feeling of malaise or fatigue. But no doubt some cases of PVFS will be the same as ME, just lasting a shorter time.

Put differently, ten years later you can distinguish ME from PVFS simply by time scale. But during the first few months you cannot.

A very similar situation occurs for rheumatoid arthritis, where there are temporary forms, including a form that occurs following pregnancy, which resolves. There are also cases of RA that go on for perhaps five or ten years and then remit and disappear. We classify those with the long term form and not with the temporary form that lasts no more than a few months.

I suspect that both for ME and RA there are underlying processes that are also present in temporary forms of illness but that some component of the process is different in long term cases.
 
Mij said:
They don't refer to Polio as PVFS.
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I don't know much about polio.
Are the problems following polio more systemic than problems with particular muscles? For example, walking with a limp - this was what my godmother who had had polio as a child, was left wth. She was otherwise fit, healthy and active.
 
MEMarge said:
I don't know much about polio.
Are the problems following polio more systemic than problems with particular muscles? For example, walking with a limp - this was what my godmother who had had polio as a child, was left wth. She was otherwise fit, healthy and active.
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My understanding is that there are 3 types of polio. This might turn out to be the same for ME?

My neighbour had Polio as a child and relapsed 40 years later, her legs gave out on her, she recovered shortly after.
 
Mij said:
I'm not comparing polio to ME. I'm just saying that it has a viral onset.
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It seems we are getting confused. Polio IS a viral infection. It has sequelae in terms of paralysis. I don't think the long term sequelae would be said to have a viral onset, although I suppose you could say that. Polio is not referred to as PVFS because it is not a fatiguing illness. It is a paralysing illness.
 
strategist said:
If PVFS and ME/CFS are the same thing, except that ME/CFS lasts much longer and is commonly lifelong, then perhaps the difference is just some factor that prevents the recovery process from completing.
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Very much the same discussion occurs with RA. I think a problem is that if we assume preconceived 'processes' like 'the recovery process' that might not complete we are in a sense putting a teleological or anthropomorphic slant on just some biochemical dynamics. Once we start dealing with disordered dynamics these preconceived process packages tend to break down. It may be equally valid to say that in ME the process is not self-resolving whereas for PVFS it is. I suspect until we know roughly what the process is we don't achieve much with these different ways of packaging things. But it maybe makes it easier to turn things over in ones mind.
 
Mij said:
My understanding is that there are 3 types of polio. This might turn out to be the same for ME?
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Back in the 1960s various 'types' of clinical course of polio were described but I am not sure they are still considered valid. Most polio infections resolve with no long term illness at all. A small minority have paralysis. Recurrent polio infection is I think almost unheard of.
 
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