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

[Hoopoe]

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.

I didn't think of it that way. I thought the "recovery process" was a slow return to normal from what is a state of altered physiology meant to maximize survival chances in infection or injury.

In the early years of the illness I've often felt like I was recovering, but then at some point along the path of steady improvement, something went wrong and I relapsed. We see the same with longhaulers, but for many of them, the relapses become less severe and frequent over time, while in my case they became worse.

 

[Hutan]

I thought the "recovery process" was a slow return to normal from what is a state of altered physiology meant to maximize survival chances in infection or injury.

There's the issue of how long recovery might take, and if it happens, and then of course also the issue of if 'normal' is actually attained in recovered cases. That is, how complete the recovery is. It might be that some infections leave everyone slightly damaged, but the level of damage can be imperceptible in some, only noticeable when there is a very high level of activity in others, and then the various levels of ME/CFS.

I, of course. see things through the lens of what my family has experienced, with three of us having ME/CFS symptoms, but one recovering to almost, but not quite, normal over two years. I think there are a lot more shades of grey than 'expected short-term fatigue after an infection'; 'self-resolving PVFS'; and 'ME'. To me, the differences become rather semantic, even if useful - we are imposing labels on a continuum.

I wonder about a mechanism where an exposure incapacitates a process (like in ciguatera where sodium channels don't function due to a toxin attaching to them) in some cells. Various factors might determine how many cells (or mitochondria) are disabled. Then there is a gradual recovery, but some factors prevent or greatly slow the recovery. And, in some cases, additional exposure (e.g. another infection, or toxin exposure, or perhaps a cryptic intracellular infection) keeps on disabling new cells or bits of cells.

 

[Jonathan Edwards]

meant to maximize survival chances in infection or injury.

That is exactly what I meant by teleology. I have found the way to understand disease is to forget all about 'why?' and focus on what or how.

 

[Hoopoe]

I wonder about a mechanism where an exposure incapacitates a process (like in ciguatera where sodium channels don't function due to a toxin attaching to them) in some cells.

Pacific ciguatoxin-1 (P-CTX-1), the most potent ciguatoxin congener thought to be responsible for the majority of symptoms associated with ciguatera in the Pacific19, elicits varied effects on the electrophysiological properties of NaV channels and as a consequence enhances neuronal excitability.

NaV = voltage-gated sodium channels. From https://www.nature.com/articles/srep42810

That is exactly what I meant by teleology. I have found the way to understand disease is to forget all about 'why?' and focus on what or how.

You're right.

 

[Jonathan Edwards]

Then there is a gradual recovery, but some factors prevent or greatly slow the recovery.

Based on my lab experience I suspect that the factors that prevent recovery are the same old factors that generated the problem in the first place - just not going away. But there are certainly various options.

I agree that there are shades of grey but I think the pattern may be distinctly bimodal in that lots of people cannot get back to normal activity for several weeks or months following EBV but 90% of them do by a year. Then there are those who are ill for many years. My personal experience suggests that for people under 25 returning to nearly normal is commoner even after five years or so whereas for those over 25 returning to near normal after five years is uncommon but it is based on relatively few cases.

 

[Adrian]

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.

Does this make new patients worth studying and then following through on the outcomes. I'm wondering for example in an Omics style study (or looking at the way mitochondria are working) were to be done on new patients with ME style symptoms at say around 2 months in and then examined the split of data from a perspective of those who recovered and those who didn't (potentially with followups). Would that start to say something interesting about common mechanism and differences?

 

[Jonathan Edwards]

Would that start to say something interesting about common mechanism and differences?

It might if something interpretable was found. The first step is to find something consistent that is interpretable.

 

[Adrian]

It might if something interpretable was found. The first step is to find something consistent that is interpretable.

Obviously something interpretable would need to be found and I guess some of the Omics work has found stuff that is different but nothing consistent.

I was just wondering if it is another route into understanding symtoms etc and also a potential for comparison with someone who recovers in terms of ill vs not ill measurements.

 

[anniekim]

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.

Yet Dr Ramsay, also from the UK, wrote this in the preface of the 1988 2nd edition of his short book, ‘ME and post viral fatigue states, The Saga of Royal Free Disease’.

 

[anniekim]

Sorry photo didn’t attach in my post above.

 

[Barry]

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

I guess any diagnosis that requires analysis of trends over time, by definition needs sufficient data to look back on. Prior to that point it is more conjecture.

 

[Jonathan Edwards]

I see from Ramsay's pages that what I have been calling PVFS is what he would call post viral fatigue states - which equates to what I think is the most common usage by UK physicians which is simply 'post-viral fatigue'. The designation of a PVFS syndrome to cover ME looks like a confusion, as Ramsay says. We need a term for a wider category of relatively short term post-viral illness (PVF) and that will include cases that will later prove to be ME.

 

[It's M.E. Linda]

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.

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.

I have got used to describing my first brush with chronic illness as “Post Viral Fatigue” (2001 - viral onset, housebound, 6 months, before very slow graduated return to work) and my second experience (2013 - Sepsis onset, ‘walking wounded’, dismissed from work) as M.E. (SNOMED coding CFS, as it is in the U.K.)

Old notes from 2001 fully describe the same neck & shoulder pains I experience now and describes Post Exertional Malaise....except I didn’t know what it was in those days.

 

[Mithriel]

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.

In those faraway days it was difficult to know what was going on in the background. In even further away days in my microbiology lecturer spoke about long term effects of viral infection especially flu and glandular fever and my parents' generation accepted that it took time to get back to normal after a bad infection. I do not know what they called it.

Then I had ME and things were looking up with lots of interest being taken and research papers published. Then a sudden change, Mowbray had discovered the VP1 test and found viral particles in the brain at autopsy which was very exciting but he dropped the research and announced that ME was now called Post Viral Fatigue Syndrome which was very confusing as he had just shown that ME was not a post viral as there was continuing viral presence. Left me confused at the time and has caused confusion with post viral fatigue states ever since.

Then it was CFS and ME lost its uniqueness as they dropped all the symptoms which make it different from post viral fatigue.

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.

As I have said, I am sure this is how they are interpreting PEM. While we do get PEM in the literal sense it does not describe the unique problem with exertion that we have in ME.

It is like diabetes mellitus and diabetes insipidus. It was perfectly natural to name the disease like this when the test was abundant urine either sweet or tasteless but when more was known the damage to the body was completely different in each case and only one, fairly incidental symptom, was held in common.

The 2 day CPET has shown we have cellular respiration different from other people's and when that is worked out we will not need PEM as a phrase. (And can drop fatigue in the same way MS has fatigue but it is not how people think of it. (You have MS, or you must feel dreadful fatigue")

 

[Kitty]

And can drop fatigue in the same way MS has fatigue but it is not how people think of it. (You have MS, or you must feel dreadful fatigue")

I'm not sure about this, because whatever the biological cause, it's what the patient experiences.

They read that PEM has specific symptoms and is the result of doing more than their bodies can handle, and it makes sense because they've observed it themselves. But when a mild or moderately ill patient has rested completely for several days, and as a result doesn't have those distinctive symptoms, what they actually feel is overwhelming fatigue – and that's what they'll tell their doctor.

We need those inclusive, everyday words, so that people who don't – yet – have the very particular vocabulary attached to some illnesses can talk about them. Patient-focused websites and leaflets need to reflect this, and fatigue (as opposed to normal tiredness) is likely to remain the most useful word.

 

[Mithriel]

I'm not sure about this, because whatever the biological cause, it's what the patient experiences.

They read that PEM has specific symptoms and is the result of doing more than their bodies can handle, and it makes sense because they've observed it themselves. But when a mild or moderately ill patient has rested completely for several days, and as a result doesn't have those distinctive symptoms, what they actually feel is overwhelming fatigue – and that's what they'll tell their doctor.

We need those inclusive, everyday words, so that people who don't – yet – have the very particular vocabulary attached to some illnesses can talk about them. Patient-focused websites and leaflets need to reflect this, and fatigue (as opposed to normal tiredness) is likely to remain the most useful word.

What I mean is that fatigue is a serious problem for people with many illnesses but it is not seen as the defining symptom or primary disability in them.

In day to day life, many people with MS find that fatigue is the single thing which most impacts them most. They can live with the dragging foot and use aids to help them wash and cook but feeling fatigue ruins everything. I am not minimising it.

But it is not the only symptom ever research for MS and there is not the assumption that getting rid of fatigue would make them healthy again.

In 1984, the CDC made ME a disease where the only thing worth knowing about it was fatigue and that is how it is thought of by medical people now. They have no understanding or even awareness of the neurological and other dysfunctions we have so it is almost impossible to communicate with them. No matter what we say they think fatigue.

The CDC gave us PEM which was a nod to what we get but it is a very nonspecific word for something we specifically experience and which is the cardinal symptom of ME.

So we have Paul Garner thinking he had CCC defined ME because he experienced PEM but if he thinks that means "exhausted and ill for a few days after exercising" he is not experiencing ME but post viral exhaustion.

There has been a deluge of research papers in the last few years about, I can't remember exactly, liver disease patients, stroke patients whatever all developing ME because they get PEM but in all the cases they do not mean the specific post exertional problems we have. The term was always bad but now we risk ME falling down another rabbit hole like CFS where suddenly it is just a symptom meaning exhausted after doing anything.

 

[JemPD]

What I mean is that fatigue is a serious problem for people with many illnesses but it is not seen as the defining symptom or primary disability in them.

In day to day life, many people with MS find that fatigue is the single thing which most impacts them most. They can live with the dragging foot and use aids to help them wash and cook but feeling fatigue ruins everything. I am not minimising it.

But it is not the only symptom ever research for MS and there is not the assumption that getting rid of fatigue would make them healthy again.

In 1984, the CDC made ME a disease where the only thing worth knowing about it was fatigue and that is how it is thought of by medical people now. They have no understanding or even awareness of the neurological and other dysfunctions we have so it is almost impossible to communicate with them. No matter what we say they think fatigue.

The CDC gave us PEM which was a nod to what we get but it is a very nonspecific word for something we specifically experience and which is the cardinal symptom of ME.

So we have Paul Garner thinking he had CCC defined ME because he experienced PEM but if he thinks that means "exhausted and ill for a few days after exercising" he is not experiencing ME but post viral exhaustion.

There has been a deluge of research papers in the last few years about, I can't remember exactly, liver disease patients, stroke patients whatever all developing me because they get ME but in all the cases they do not mean the specific post exertional problems we have. The term was always bad but now we risk ME falling down another rabbit hole like CFS where suddenly it is just a symptom meaning exhausted after doing anything.

Typo? - Do you mean PEM here?

I agree with every word @Mithriel spot on

 

[Mithriel]

Thanks Jem, I have edited my post and will now write "I must read what I have written before I post" a hundred times

Thinking about it, there were a few papers by ME researchers that have said people with ME have a prolonged recovery from exercise sometimes up to 24 hours with no mention of the delay and so on that is part of our PEM.

That is more like a post viral effect, or just something that happens when your body is trying to recover from a serious insult.

 

[Bill]

What I mean is that fatigue is a serious problem for people with many illnesses but it is not seen as the defining symptom or primary disability in them.

In day to day life, many people with MS find that fatigue is the single thing which most impacts them most. They can live with the dragging foot and use aids to help them wash and cook but feeling fatigue ruins everything. I am not minimising it.

But it is not the only symptom ever research for MS and there is not the assumption that getting rid of fatigue would make them healthy again.

In 1984, the CDC made ME a disease where the only thing worth knowing about it was fatigue and that is how it is thought of by medical people now. They have no understanding or even awareness of the neurological and other dysfunctions we have so it is almost impossible to communicate with them. No matter what we say they think fatigue.

The CDC gave us PEM which was a nod to what we get but it is a very nonspecific word for something we specifically experience and which is the cardinal symptom of ME.

So we have Paul Garner thinking he had CCC defined ME because he experienced PEM but if he thinks that means "exhausted and ill for a few days after exercising" he is not experiencing ME but post viral exhaustion.

There has been a deluge of research papers in the last few years about, I can't remember exactly, liver disease patients, stroke patients whatever all developing ME because they get PEM but in all the cases they do not mean the specific post exertional problems we have. The term was always bad but now we risk ME falling down another rabbit hole like CFS where suddenly it is just a symptom meaning exhausted after doing anything.

That isn't what CFS means--now, or ever.

CFS is ME.

Bill

 

[Mij]

This is why we need a definitive and clear understanding/mechanism for the pathophysiology of PEM. The other symptoms won't continue to remain the issue of whether we have ME or CFS.

If post-infectious COVID patients turn out to have the PEM I suffer from, then I will be satisfied that we have similar pathologies?