Post-Polio Syndrome: More than just a lower motor neuron disease (2019)

Snowdrop

Snowdrop

Senior Member (Voting Rights)
https://www.frontiersin.org/articles/10.3389/fneur.2019.00773/full

Post-polio syndrome (PPS) is a neurological condition that affects polio survivors decades after their initial infection. Despite its high prevalence, the etiology of PPS remains elusive, mechanisms of progression are poorly understood, and the condition is notoriously under-researched. While motor dysfunction is a hallmark feature of the condition, generalized fatigue, sleep disturbance, decreased endurance, neuropsychological deficits, sensory symptoms, and chronic pain are also often reported and have considerable quality of life implications in PPS. The non-motor aspects of PPS are particularly challenging to evaluate, quantify, and treat. Generalized fatigue is one of the most distressing symptoms of PPS and is likely to be multifactorial due to weight-gain, respiratory compromise, poor sleep, and polypharmacy. No validated diagnostic, monitoring, or prognostic markers have been developed in PPS to date and the mainstay of therapy centers on symptomatic relief and individualized rehabilitation strategies such as energy conservation and muscle strengthening exercise regimes. Despite a number of large clinical trials in PPS, no effective disease-modifying pharmacological treatments are currently available.
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It's clear from this paper that PPS is not considered a functional distress syndrome and I've not seen it mentioned elsewhere as such.

My hope for the thread is to raise the issue of why this might be so that PPS has a different status from other post infectious syndromes.

While I'm not on social media it would be interesting (I think) if someone of the BPS functional syndrome group clarified their position on this especially as it is so strikingly similar to other post-infectious syndromes.
 
The usual confusion of initials :)

Since the beginning the BPSers have made a land grab for any disease which wasn't well guarded by other doctors. Once they got a foothold they used their eminence to make their theories sound well researched and scientific so now, after so many years they are fast gaining ground on well established diseases like RA and MS by using their "success" treating fatigue in CFS.

But polio holds a special place in the consciousness of medicine. It was deadly and conquered by modern scientific medicine; a wonderful success story. So there is no way anyone can get away with saying it was not a real physical disease and post polio syndrome is part of that.

Long covid may benefit in the same way.
 
Mike Dean said:
PPS - persistent physical symptoms - is also the BPS flavour of the month term for somatoform disorders...
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Yes, you're right. Though I've never actually seen Post-Polio among the list. Once I had the thought I admit that I couldn't quite let it go wondering if this was maybe an important point. In other words: if not why not?

I also latched onto to the question because I knew that Arthur C Clarke had PPS. And I have to wonder how the BPS would have approached him to tell him that he needed behavioural therapy to adjust his thinking.
 
Mithriel said:
But polio holds a special place in the consciousness of medicine. It was deadly and conquered by modern scientific medicine; a wonderful success story. So there is no way anyone can get away with saying it was not a real physical disease and post polio syndrome is part of that.
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I agree that because polio was deadly and because of the way it played out post-polio is certainly recognised. But as you point out the BPS cast a wide net and even are trying to 'acquire' illnesses that have recognition as disease.

And with the mind / body all mixed together into an incoherent mess why not include post-polio (if indeed they haven't).
 
A thanks to whoever added the tags for this thread. I was aware of the tagging issue but when I tried my mind remained stubbornly (mostly) blank on the subject.
 
Snowdrop said:
I knew that Arthur C Clarke had PPS. And I have to wonder how the BPS would have approached him to tell him that he needed behavioural therapy to adjust his thinking.
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BPS PPS cropped up the other day
https://www.s4me.info/threads/bmc-family-practice-integrated-gp-care-for-patients-with-persistent-physical-symptoms-2020-chalder-et-al.17195
I'm not sure the BPS cult would dare to acquire post-polio itself, but yes it would be good to challenge them as to why not given that a lot of ME has followed similar enteroviral infections.
 
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