Discussion in 'General ME/CFS News' started by Sly Saint, Jun 4, 2019.
Ah, so PVFS.
The invention of CFS was probably one of the single most harmful acts of willful medical sabotage in history, one replete with such acts. It's still creating brand new confusion to this day.
And boy would I love some of that 50% reduction from pre-illness levels, aka the mild stage of ME. Those were relatively good days. Perspective changes everything.
another similar story in Australia (didn't think it warranted a new thread)
It goes on to talk about Ron Davis and the nanoneedle research.
then ends with
so rather mixed messages
Glandular Fever (common in youngsters) and PVFS.
My ‘first’ diagnosis was PVFS in 2001. 7 months completely off work (Housebound), then slow improvements, then a graduated return to (only part time) work.
Re-Reading diary from that time, I was surprised to read that I suffered with PEM & many of the typical ME symptoms
@It's M.E. Linda , likewise for me. I most definitely had PEM with what was diagnosed as PVFS. In fact it remained a predictable outcome of over reaching myself through to my most well point last year. Since my relapse I'm not altogether sure I've had more than 2-3 days without PEM symptoms!
‘Walking wounded’ - I can drive, enjoy activities, even vacuum for 10 mins at a time but any activity (even reading) will always produce symptoms and, usually, some level of PEM.
I try to use my diary to spread things out through the week......;)
Joe Burns is saying he's back to 100%. Best wishes to him:
Article links to another Australian cricketer (though only an international at under 19 level), Rob Baker, who had to give up playing due to chronic fatigue syndrome/post viral fatigue syndrome and had ongoing issues for over a decade:
I managed to play in a few cricket matches here in Los Angeles about 25 years into my ME/CFS.
I didn't play well, or in a very competitive league (what you all might call Village Cricket), but I did it.
Is there any research which distinguishes PVFS from ME/CFS?
When you search for "Post-Viral Fatigue Syndrome" on Wikipedia you are redirected to the "Chronic Fatigue Syndrome" page, which asserts that Chronic Fatigue Syndrome is the same thing as Myaglic Encephalomyeltits.
Yet, I would assume that PVFS by definition requires a viral infection as an antecedent, whereas (to my knowledge) CFS and ME do not - and in those ME/CFS cases which have apparent triggers, such triggers are not necessarily viral.
I'd be willing to accept that PVFS is a form of ME/CFS with a known viral trigger, but I'm not even sure that's true. What else distinguishes PVFS from ME/CFS? I get the feeling that recovery from PVFS is more common (at least in the first few years), but I don't know if that's just anecdotal - or if it's just a matter of if your ME/CFS improves in the first ~5 years then you might be re-labeled as having PVFS.
I tried looking for a comparison of ME/CFS and PVFS and didn't find anything, at least not at first blush.
FWIW, the doctor who ultimately diagnosed me simply called the condition "post-infectious" because the agent wasn't known - but I'd clearly had a preceding infection. This was before the terms "CFS" or "ME" were in use in the States. I don't know how far back PVFS goes.
I have seen the term PIFS, "Post-Infectious Fatigue Syndrome," used as well - which, at least, doesn't confine the infection to a virus.
Fatigue in adults with post-infectious fatigue syndrome: a qualitative content analysis.
Stormorken E1, Jason LA2, Kirkevold M1.
Didn't the term "post-infectious" chronic fatigue syndrome derive from the Oxford Criteria. It seemed to be particularly unhelpful in that it required laboratory evidence of infection, when a large part of the point of PVFS was that there was clear clinical evidence of infection, but the available tests were negative. The vast majority of those with a PVFS diagnosis would not have been within "post infectious CFS" criteria.
It seems like their motivation for creating PIFS was to keep patients with positive laboratory indications of infection from confounding the result from their supposedly "non-infectious onset" CFS patients.* But that's really not going to work if you don't take into account "probable infectious onset" CFS patients, who simply didn't have lab work done.
How many people race to their doctor to get lab tests done when they come down with the flu? If you have something like a self-reported fever of 102 and/or a sore throat associated with onset, you really should be put in a "probable infectious onset" category, which should also be studied as a separate group to prevent confounding (by their logic).
I was "lucky" in that, even though I didn't get tested when I came down with my initial "severe flu," my immune system was apparently still "turned on" when I was tested three weeks later, just after I got hit with what turned out to be the initial symptoms of ME. Up to that point, though, I thought I had fully recovered from the flu. That's why my condition was labeled "post-infectious."
It derives from earlier than that: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2218522/
and here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2428896/
Then White and Wessely got their hands on it in 1989. The rest, as they say, is...
That 1987 Salit paper is interesting
Post-infectious fatigue or post-infectious neuromyasthenia (PIN) is an illness characterized by persisting fatigue and disability after apparent acute infections. In most cases the illness is attributed to a chronic Epstein-Barr virus infection. Symptoms include weakness and fatigue in the absence of physical findings or significant laboratory abnormalities.
It seems to be PVFS in all but name and does not require the lab findings introduced by the Oxford criteria thus neutralising the concept.
Growing up in the 60s and then doing microbiology at university in the early 70s it was a given that some infections could leave people debilitated for some time, up to about 2 years in some cases. Flu, in particular, was said to leave people washed out and depressed with the only treatment taking it easy and waiting for it to be over.
I was a member of some bulletin boards (and the MEA) in the 80s pre CFS so I heard about some things but not the way you can get information now. There came a strange time when everything seemed to fall apart which i now know was caused by the CDC and the Incline Village outbreak.
I think it was Mowbray who declared that ME was not caused by a persistent virus - strange because he also used the VP1 test which found actual viral particles - so it should now be called Post Viral Fatigue Syndrome which was the first time I had heard of fatigue as an important part of the illness.
Out of the blue, without any kind of discussion as far as I could see, this became the "official" name for ME. They would not publish Melvin Ramsay's book about ME unless he renamed it PVFS!
Then in what seemed just a few weeks everything became CFS, the name was changed, the definition was changed and it all fell apart. After 17 years of never mentioning fatigue to a doctor every one I came into contact with assumed it was my main symptom and ignored all the things I actually had. The invasion was complete and the war over before we even knew it has started.
There was little science behind any of it; it was all jockeying for research money and advancement. The original ME researchers were no match for these so called scientists who reminded me of the archetypal 80s financial workers.
With regard to that paper by Salit on post-infectious fatigue I came across this interesting comment in Byron Hyde's Little Red Book:
Children Fall Ill with Myalgic Encephalomyelitis: Knowing about the Akureyri epidemic and the Cumberland epidemic, it is curious that there should be any debate in the UK or anywhere else that M.E. is also a disease of children. In March 2006 I was in court giving evidence for a M.E. patient and Dr Salit who frequently sees M.E. patients for the insurance industry and who attended against the patient, made the statement that children do not fall ill with M.E. He uses the term CFS since as he stated, no physician of merit uses Myalgic Encephalomyelitis. He obviously does not appear to know the history of this illness.
http://www.investinme.org/Documents...de Little Red Book for www.investinme.org.pdf
The most important part of any definition is, who is paying the bill?
Separate names with a comma.