“Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

[Dolphin]

I haven’t listened so far

https://paradigms.life/2022/dr-ken-...ng-haul-covid-similarities-and-ramifications/

Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications
February 27, 2022


Dr. Ken Friedman, Ph.D. is Associate Professor of Medicine at the Rowan University School of Osteopathic Medicine, Stratford, NJ.

Dr. David Maughan, Ph.D. is a Research Professor at the University of Vermont College of Medicine, Burlington, VT. who has been on Paradigmsbefore.

Drs. Friedman and Maughan describe how ME/CFS (Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome) has impacted their families, and then they explain similarities between ME/CFS and Long Covid, both falling under the newly minted category PAPIS (Post Active Phase of InfectionSyndromes) which also includes Chronic Lyme Disease. Baruch and the Doctors discuss both genetic and environmental influences on immune response.

The conversation goes to questions about how treatment options for ME/CFS may have implications for Long Covid. The discussion is somewhat technical but Friedman and Maughan break it down for us.

 

[duncan]

ME/CFS and Long Covid, both falling under the newly minted category PAPIS (Post Active Phase of InfectionSyndromes) which also includes Chronic Lyme Disease

Minted by whom? Used by whom?

 

[Trish]

and then they explain similarities between ME/CFS and Long Covid, both falling under the newly minted category PAPIS (Post Active Phase of InfectionSyndromes) which also includes Chronic Lyme Disease.

Minted by whom? Used by whom?

By Friedman himself:
Topical Collection "Why Some Patients Never Fully Recover: Post Active Phase of Infection Syndromes (PAPIS)"

 

[duncan]

I should have known there'd be a thread here.

They're including a lot. I suppose for them it's good to cover as many bases as possible.

So, the obvious question: Why post "active"? Post acute seems much more appropriate and less assumptive.

 

[Jonathan Edwards]

I think it is a mistake to say ME/CFS falls under PAPIS. ME/CFS is not defined by being post-infective and very often is not, as far as we know. Spades should be called spades, not handled gardenware.

 

[Dolphin]

David Maughan’s wife is ill and he has done some research e.g. https://www.solvecfs.org/wp-content/uploads/2016/11/Gleeson-Cover-Story-PDF.pdf

 

[Sean]

newly minted category PAPIS (Post Active Phase of Infection Syndromes)

Another acronym for the list.

 

[Milo]

ME/CFS is not defined by being post-infective and very often is not, as far as we know

Citation? More regarding the "very often is not" but also the first part.

 

[EzzieD]

Jonathan Edwards said: ↑
ME/CFS is not defined by being post-infective and very often is not, as far as we know

Citation? More regarding the "very often is not" but also the first part.

This is puzzling me too. When I got ME in 1983 it was alternatively known as 'Post-Viral Syndrome' and defined as being the result of a viral infection (in my case, a heavy respiratory virus). What else is it defined by? (I know 'fatigue' has been thrown into it now, but that really is too vague a symptom to 'define' anything?)

 

[Jonathan Edwards]

I m not aware that any of the familiar definitions of ME/CFS make onset after infection a defining, or required, feature. I think if people want a citation it should be for an example where it is required. It is recognised that a significant proportion of patients report an infection that might have been a trigger but the illness is defined in terms of long term disabling symptoms.

'ME' in 1983 was a concept that no longer exists now - of some relatively newly identified post-infective illness with neurological features suggestive of encephalomyelitis that might be triggered by an as yet unidentified enterovirus or something similar.

One of the reasons for using the combined term ME/CFS is that although CFS alone is problematic, ME alone is also problematic if it is taken to imply this historic concept. The historic concept does not cover 99.5% of people with ME/CFS - whose illness did not start with an acute illness with neurological features suggestive of encephalomyelitis, and in quite a good proportion of cases was not obviously linked to an infection at all.

Post-viral syndrome is defined as presumed to result from viral infection and many people will therefore merit both diagnoses (PVS and ME/CFS) but that does not mean that the diagnoses have the same catchment or have the same meaning. Many people with post-viral fatigue are completely better by 9 months and I suspect it is unhelpful, at least in retrospect, to call that ME. There is a world of difference between being at the tail end of symptoms nearly but not quite better at 6 months from PVF and being stuck in n illness that shows no signs of going away.

Clearly anyone diagnosed under the original concept of ME could also be diagnosed as PVS but with the recognition that PVS is common after EBV these were still not synonymous terms. I had post-viral syndrome after EBV in 1970.

I don't see fatigue as too vague a symptom if the definition brings in other features that make sure that it is clear that it means whatever people with ME/CFS have that makes them unable to function normally. Whatever that it is, it is surely the central problem for PWME. And surely it was there in Ramsay's description of the long term, rather than acute, illness, even if he emphasised fatiguability.

 

[Jonathan Edwards]

Citation? More regarding the "very often is not" but also the first part.

The new NICE guidelines do not define ME/CFS as post-infective.
I said very often not as far as we know on the basis that most accounts of ME/CFS give rates of somewhere around 50-70% for there being a history of infection preceding onset - so that makes lack of evidence of infective trigger pretty often.

 

[duncan]

most accounts of ME/CFS give rates of somewhere around 50-70% for there being a history of infection preceding onset - so that makes lack of evidence of infective trigger pretty often.

Well, yes. But isn't this somewhat misleading? Perhaps "a history of known infection", or "symptomatic infection" may be more accurate - and more suggestive that that 50-70% figure may be deceptive. There's a lot of diseases that can be asymptomatic for years. If you're unfortunate enough to get one of these, and ME/CFS hits, how do you report a trigger?

Technically, @Jonathan Edwards, you may be correct, but I suspect your sentence as written fails to capture the reality. Sadly, this is true with MS as well, as far as I know, i.e. the definition of MS does not include any suggestion that it follows an infection.

 

[Jonathan Edwards]

'ME' in 1983 was a concept that no longer exists now

In fact I am not quite sure what the status of 'ME' was by 1983. That was after McEvedy and Beard and presumably after the interest in enteroviruses had largely waned. By about 1990 I was aware that ME was being used for what we would now call ME/CFS but in the 1980s I think there was still controversy as to whether there was some special disease linked to some special still unknown virus.

 

[Jonathan Edwards]

But isn't this somewhat misleading? Perhaps "a history of known infection", or "symptomatic infection" may be more accurate - and more suggestive that that 50-70% figure may be deceptive.

No it is just a matter of the facts. You cannot define an illness as being due to Blue Meanies that have only been seen in one case at midnight in midsummer. ME/CFS is defined as a syndrome not as the result something that might or might not have been there. In disease category terms it is something quite different from TB or flu.

 

[Jonathan Edwards]

Sadly, this is true with MS as well, as far as I know, i.e. the definition of MS does not include any suggestion that it follows an infection.

But that is obviously an inappropriate analogy since for ME/CFS we have pretty good evidence of it being triggered by a wide range of infections, including it seems Covid-19. Practicing medicine on the basis of people's pet theories is not a good idea, as we all know.

Pulmonary embolism might turn out to be a better analogy. That follows all sorts of infective episodes. But it also follows air travel and pregnancy.

 

[duncan]

No it is just a matter of the facts.

Were that only true.

Practicing medicine on the basis of people's pet theories is not a good idea, as we all know.

Nods. Neither is crafting definitions that are ambiguous or, worse, misleading. Lingering fatigue anyone?

 

[EzzieD]

I m not aware that any of the familiar definitions of ME/CFS make onset after infection a defining, or required, feature. I think if people want a citation it should be for an example where it is required. It is recognised that a significant proportion of patients report an infection that might have been a trigger but the illness is defined in terms of long term disabling symptoms.

'ME' in 1983 was a concept that no longer exists now - of some relatively newly identified post-infective illness with neurological features suggestive of encephalomyelitis that might be triggered by an as yet unidentified enterovirus or something similar.

One of the reasons for using the combined term ME/CFS is that although CFS alone is problematic, ME alone is also problematic if it is taken to imply this historic concept. The historic concept does not cover 99.5% of people with ME/CFS - whose illness did not start with an acute illness with neurological features suggestive of encephalomyelitis, and in quite a good proportion of cases was not obviously linked to an infection at all.

Post-viral syndrome is defined as presumed to result from viral infection and many people will therefore merit both diagnoses (PVS and ME/CFS) but that does not mean that the diagnoses have the same catchment or have the same meaning. Many people with post-viral fatigue are completely better by 9 months and I suspect it is unhelpful, at least in retrospect, to call that ME. There is a world of difference between being at the tail end of symptoms nearly but not quite better at 6 months from PVF and being stuck in n illness that shows no signs of going away.

Clearly anyone diagnosed under the original concept of ME could also be diagnosed as PVS but with the recognition that PVS is common after EBV these were still not synonymous terms. I had post-viral syndrome after EBV in 1970.

I don't see fatigue as too vague a symptom if the definition brings in other features that make sure that it is clear that it means whatever people with ME/CFS have that makes them unable to function normally. Whatever that it is, it is surely the central problem for PWME. And surely it was there in Ramsay's description of the long term, rather than acute, illness, even if he emphasised fatiguability.

Thank you for the good explanation. I guess what it comes down to, is that the original term ME no longer means what it used to (eg, the Ramsay criteria that I was diagnosed by was used then, which is quite different from what came later: https://www.cfids-me.org/ramsay86.html), Post Viral Syndrome got changed to Post Viral Fatigue Syndrome and then ME got changed to Chronic Fatigue Syndrome, and the definitions/criteria got reduced to patients just needing to have a few months of 'unexplained fatigue' and optionally one of about 4 vague symptoms such as sore throat, to be diagnosed as ME or CFS or ME/CFS. As a result, 'ME/CFS' is now a mixed bag of just about anything. This hodgepodge makes me despair that a biomarker will ever be found in my lifetime. At least nowadays the establishment recognises that PEM should be part of the criteria.

In fact I am not quite sure what the status of 'ME' was by 1983. That was after McEvedy and Beard and presumably after the interest in enteroviruses had largely waned. By about 1990 I was aware that ME was being used for what we would now call ME/CFS but in the 1980s I think there was still controversy as to whether there was some special disease linked to some special still unknown virus.

I can vouch for what the status of ME was in 1983/the 1980s, ie pre-Wessely School barging in and taking over. AFAIK, McEvedy & Beard had been forgotten about by then; I never heard them or their 'mass hysteria' theory mentioned. ME was considered a medical illness that started with a virus, and the news carried many reports of ME research looking into enteroviruses, retroviruses, interferon, T-cell malfunction, lack of blood flow to the brain, candida overgrowth, and a few other avenues. I was lucky to have a good GP who was willing to try things (this was pre-NICE Guidelines when GPs could to do what they saw fit in their own judgement), and I was tried on drugs that were being used experimentally in ME. I improved enough to be able to go back to work after having been flattened with severe ME for several years. And then all that progress was lost and forgotten after Wesseley & Co took over and pushed ME into the Dark Ages. When I relapsed in 2005 after a severe gastro virus, I couldn't get my head around how backwards it had all gone. No treatments allowed except CBT/GET, the disease stigmatised and the patients treated like dirt. Truly disgraceful state of things.

 

[Jonathan Edwards]

I guess what it comes down to, is that the original term ME no longer means what it used to

Yes, and I think rightly so because it was originally intended to indicate an illness due to one specific unknown virus with features suggestive of encephalomyelitis. As indicated above and suggested by what you say buy the 1980s there was doubt as to whether it was any particular virus. Moreover, the encephalomyelitis features documented in the Royal Free outbreak were agreed to have been of dubious validity or significance. (My mother referred to it as 'Royal Free Disease', being a public health laboratory virologist and being aware that no evidence for a new encephalomyelitis disease had materialised.)

the definitions/criteria got reduced to patients just needing to have a few months of 'unexplained fatigue' and optionally one of about 4 vague symptoms such as sore throat, to be diagnosed as ME or CFS or ME/CFS

So the question is what valid criteria had been thrown out? I don't know of any that in retrospect should have been kept. Do you have any particular thoughts?

It seems that at least Ramsay's report and Acheson and Behan's interest meant that ME/CFS began to be taken seriously as a public health problem in the 1980s. That it had not before is to me not so very surprising since when I was a houseman medicine was largely confined to managing the few conditions whose gross pathology we could recognise and which we had some idea of how to treat. The ward was filled entirely with people with diabetes, cancer, heart attacks, stroke and lung failure from smoking, pollution and occupations.

Presumably what happened is that the physicians who did take an interest in ME, as then known, came to recognise that the presence of a viral trigger did not make any great difference to the nature of the illness they had to deal with. Almost as many people without viral histories came to see them and also people with different infective histories - EBV, Q fever etc.

So I think the dropping of any reference to viruses in the definition was entirely good medicine - we want categories that focus on the problem in hand rather than features that might or might not be relevant.

This hodgepodge makes me despair that a biomarker will ever be found in my lifetime.

But surely we need a biomarker for those without viral onset as well as those with? We can be pretty sure that there will be no marker relating to one virus so the likelihood is that the biomarker will cut across not just those with viral triggers but those without. We need a marker of whatever it is that remains wrong what ever started it. For diabetes that is sugar level, whatever started the diabetes.

And then all that progress was lost

But what progress? We have no reason to think any effective drugs were found. Some people got better, others didn't, but we have no way of knowing whether it had anything to do with treatments. When things have been tried in trials they are negative.

I agree that the current care situation is abysmal but I am not convinced that previous disease definitions were any better - almost certainly they were misleading. And I see no evidence for effective treatments having been abandoned.

 

[EzzieD]

Yes, and I think rightly so because it was originally intended to indicate an illness due to one specific unknown virus with features suggestive of encephalomyelitis. As indicated above and suggested by what you say buy the 1980s there was doubt as to whether it was any particular virus. Moreover, the encephalomyelitis features documented in the Royal Free outbreak were agreed to have been of dubious validity or significance. (My mother referred to it as 'Royal Free Disease', being a public health laboratory virologist and being aware that no evidence for a new encephalomyelitis disease had materialised.)

So the question is what valid criteria had been thrown out? I don't know of any that in retrospect should have been kept. Do you have any particular thoughts?

It seems that at least Ramsay's report and Acheson and Behan's interest meant that ME/CFS began to be taken seriously as a public health problem in the 1980s. That it had not before is to me not so very surprising since when I was a houseman medicine was largely confined to managing the few conditions whose gross pathology we could recognise and which we had some idea of how to treat. The ward was filled entirely with people with diabetes, cancer, heart attacks, stroke and lung failure from smoking, pollution and occupations.

Presumably what happened is that the physicians who did take an interest in ME, as then known, came to recognise that the presence of a viral trigger did not make any great difference to the nature of the illness they had to deal with. Almost as many people without viral histories came to see them and also people with different infective histories - EBV, Q fever etc.

So I think the dropping of any reference to viruses in the definition was entirely good medicine - we want categories that focus on the problem in hand rather than features that might or might not be relevant.

But surely we need a biomarker for those without viral onset as well as those with? We can be pretty sure that there will be no marker relating to one virus so the likelihood is that the biomarker will cut across not just those with viral triggers but those without. We need a marker of whatever it is that remains wrong what ever started it. For diabetes that is sugar level, whatever started the diabetes.

But what progress? We have no reason to think any effective drugs were found. Some people got better, others didn't, but we have no way of knowing whether it had anything to do with treatments. When things have been tried in trials they are negative.

I agree that the current care situation is abysmal but I am not convinced that previous disease definitions were any better - almost certainly they were misleading. And I see no evidence for effective treatments having been abandoned.

Heh, yes, I remember it being called Royal Free Disease - I was a toddler at the time of that outbreak and remember hearing it referred to as that on the news and thinking what a strange name it was. (Now I'm showing how ancient I am and why I despair there being a biomarker & cure in my lifetime...)

Ramsay's was the valid criteria in the 1980s before the psychs took over. All that stuff centred around the single symptom of unexplained fatigue as the be-all and end-all was later. Ramsay's symptom list was an exact match for me (except for the 'Bouts of uncontrollable weeping', thankfully) but I'm aware that they are not a match for everyone diagnosed with ME/CFS nowadays. My particular thoughts are too 'rude' to say in polite company about what happened criteria-wise after that, ha ha.

My experience in the 1980s, at least my own n=1, was that ME was thought to be the result of a virus. I was seen by an Infectious Diseases consultant at the Royal Free back then who tested me for EBV, Coxsackie, Brucellosis, Q Fever and various others I forget now, and who said that those were often found to be causes.

One biomarker for a large heterogeneous group of people would be great, but I suspect it will be difficult to achieve. Can only live in hope, though.

By progress, I meant that biomedical research was being done into the disease in the 1980s by scientists who were interested in solving the puzzle. Then that all was cut short by the arrival of a small but very vocal group of UK junior psychiatrists who thought they knew it all, and were allowed by the powers-that-be to take over. That was the end of anything that could be thought of as 'progress'. It was the ultimate 'retrogress'.

 

[Jonathan Edwards]

By progress, I meant that biomedical research was being done into the disease in the 1980s by scientists who were interested in solving the puzzle. Then that all was cut short by the arrival of a small but very vocal group of UK junior psychiatrists

The psychiatrists made a complete mess, yes, but I am not sure they were the reason for the drop off in other research. Around that time Venables had looked for autoantibodies, Richard Edwards had looked for muscle changes, even Wessely had looked at some lymphocytes and genes. Everything drew a blank. Claims made by people like Behan did not hold up. The USA was not beholden to the UK BPS people but precious little research progressed there either. Work on NK cells started I think in the 1990s but it never became reproducible enough to be of help.

My particular thoughts are too 'rude' to say in polite company about what happened criteria-wise after that, ha ha.

Fair enough but the idea is to try to get them as good as we can and I am unclear what is wrong with the present set. It identifies a problem rather than a cause, which is what we want if we don't know the cause.

All I can think of in terms of other criteria are neurological symptoms like weak legs or tingling arms or whatever, and I have most of those but clearly don't have ME - just badly knocked about ageing peripheral nerves and joints.