News about Long Covid including its relationship to ME/CFS 2020 to 2021

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Trish said:
I wonder whether it would be possible for you both to be right. That sounds contradictory, but would it be possible for the initiating virus to trigger an abnormal ongoing immune response, like the stuck gramaphone needle, irrespective of whether the virus is still present or not. And for any flare up in active virus activity to be a result, not the cause of downturns in the ME. Otherwise, if the person has continuously active virus, they would surely be diagnosed with unresolved active viral infection, rather than ME/CFS.
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That is an hypothesis for a different kind of trap, but the gramaphone idea as described by Weir is based on the provably false assumption that virus is no longer present. It is suggested as a way to account for immune activity without a virus, which is a defining characteristic of the hypothesis. So if virus activity is present its not the same situation /hypothesis.

I would also caution that the needle stuck in a rut analogy is shades of Garner and habitual neuroimmune pathways etc.

A competing hypothesis would be that viruses are present but not detected in many PWME due to the limitations of observation methods. I dont think there is any "surely" about it. Virus diagnosis is very hit and miss. People are beginning to acknowledge that virus behaviour includes proliferating in localised refugia in specific tissues, as is being discovered with COVID in relation to ACE expressing cell types like heart and kidneys and lungs and we know next to nothing about any of this.

And by ye olde Occam's razor, it is a less complex hypothesis to consider virus activity could occur in all PWME given that recurring virus is proven to occur in some.

However that does not make it true. It just means that should be the first logical port of call when considering experimental designs.

We have to be very careful about not making any assumptions at all and find out what is really going on.

A third hypothesis and way we could both be right would be that some are stuck in a gramaphone trap and some are not and have a recurring virus trap but per Occam that is more complicated and you have to prove it, not just assume it then speculatively bung a kid in a swimming pool to see if the shock sorts them out.
 
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The biology of a virus is different from every other virus. That's why they're different viruses. Or so people keep saying anyway. Nevermind that the immune system obviously plays a huge role and causes most of the symptoms.

What an odd statement, clearly someone trying to reconcile that post-infectious chronic illness should exist, given LC, but can't possibly be the same as this silly thing that's been trivialized forever. Otherwise the implications... they're really bad. Which, yeah, they are.

Science: both the cause and solution to many cases of doublethink.
 
boolybooly said:
And by ye olde Occam's razor, it is a less complex hypothesis to consider virus activity could occur in all PWME given that recurring virus is proven to occur in some.
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As someone with a background in the physical sciences (okay, BSc drop-out, due to the bother), and who has always had difficulty in remembering, let alone understanding, the basics of biology, I find it quite amusing that favouring simplicity in biology should be proposed. In physics, they were fond of saying that it is the only real science and that all else is stamp collecting; which I concurred with even after the great stamp collector in the sky stamped all over me. I've become more respectful of complexity since but I'm still routinely appalled by just how complex the human body is. My point is that I'd caution against favouring simplicity, or what appears to be simplicity, just for the sake of it. As you say:
We have to be very careful about not making any assumptions at all and find out what is really going on.
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That said, I'm quite interested in biofilms as resilient refugia. The hypothesis accords more with Blore's Razor in that it being possible for the enormous, proud, complexity of the human being and all the co-operative mechanisms that humanity has developed to be brought low by a little citadel of complicated, pond scum, by a political arrangement between the biological kingdoms, as it were, would be pretty funny; funnier than the cause being some, simple, little, design error.
 
Colin said:
As someone with a background in the physical sciences (okay, BSc drop-out, due to the bother), and who has always had difficulty in remembering, let alone understanding, the basics of biology, I find it quite amusing that favouring simplicity in biology should be proposed. In physics, they were fond of saying that it is the only real science and that all else is stamp collecting; which I concurred with even after the great stamp collector in the sky stamped all over me. I've become more respectful of complexity since but I'm still routinely appalled by just how complex the human body is. My point is that I'd caution against favouring simplicity, or what appears to be simplicity, just for the sake of it. As you say:


That said, I'm quite interested in biofilms as resilient refugia. The hypothesis accords more with Blore's Razor in that it being possible for the enormous, proud, complexity of the human being and all the co-operative mechanisms that humanity has developed to be brought low by a little citadel of complicated, pond scum, by a political arrangement between the biological kingdoms, as it were, would be pretty funny; funnier than the cause being some, simple, little, design error.
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Well, we are crawling out of the dark ages on a lot of fronts, in a few hundred years I am sure people will look back at this time and laugh or recoil in horror, or both, just as we do when contemplating the superstition and barbarism of the past, either that or the bacteria will be in charge... again. And I hope to goodness noone actually designed this shambles, that would be a fairly hefty class action lawsuit in the making right there.

For the time being I am just concerned that some clinicians look at PWME without distinct viral symptoms and assume the virus has passed and been resolved because that is what they are used to seeing happen in other people. I am just saying that I dont think that is a safe assumption to make, given my own experiences.
 
Evolving Phenotypes of non-hospitalized Patients that Indicate Long Covid
https://www.medrxiv.org/content/10.1101/2021.04.25.21255923v1

Covid-19 led to an increased risk for #ChronicFatigueSyndrome.
One of the more rigourous #LongCovid studies e.g. had a control group.
An easier-to-read article on the paper, "Most long COVID-19 sequelae affect people under 65, finds study"
https://www.news-medical.net/news/2...uelae-affect-people-under-65-finds-study.aspx
#MEcfs #CFS
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Thread about the published paper:
Evolving phenotypes of non-hospitalized patients that indicate long COVID, 2021, Estiri et al
 
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Colin said:
As someone with a background in the physical sciences (okay, BSc drop-out, due to the bother), and who has always had difficulty in remembering, let alone understanding, the basics of biology, I find it quite amusing that favouring simplicity in biology should be proposed. In physics, they were fond of saying that it is the only real science and that all else is stamp collecting; which I concurred with even after the great stamp collector in the sky stamped all over me. I've become more respectful of complexity since but I'm still routinely appalled by just how complex the human body is. My point is that I'd caution against favouring simplicity, or what appears to be simplicity, just for the sake of it. As you say:
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I basically view the ME-BPS model as the medical equivalent of classical mechanics textbook examples of the like: suppose a cow is a spherical object of uniform density. Which for the simple mechanics of inertia mostly works, at least for F=ma and balistics trajectories.

Except it's actually serious. Simplification is useful. Oversimplification isn't.
 
Equal parts pertinent and infuriating article. It truly depicts two incompatible realities, one in which the patients know what they are talking about and the experts are incapable of listening to the point where they can't stop themselves from asserting that the very thing that makes people ill is what should cure them.

I think it did a good job of reporting two viewpoints without taking a position and letting the facts and arguments speak for themselves. The quoted medical professionals are completely clueless and clearly incapable of learning from experience or listening to patients.

And it shows a rare understanding of the widespread implications of millions of people being personally subjected to blatant medical incompetence and gaslighting and how it destroys trust in a system that is supposed to be based on trust and competence.

Jane and her son went to see a new pediatrician, showing him the daily journal they had kept of her son’s ongoing symptoms. Yet the doctor — as Gemma, Eliza, and Rachel also experienced when seeking care for their children — said that the cause was likely “psychological.”

This experience, Jane told MNT, “profoundly […] affected [her] trust in the medical profession.”

Jane also sought the opinion of another pediatric neurologist and a pulmonologist. However, their diagnoses and ensuing prescriptions did not help with her son’s symptoms and, in some cases, even made them worse.

“I am untrained in medicine, yet I feel that I’ve not only been on my own to try to diagnose and treat my son, but that I’ve actually been misled by several of the doctors we saw, and given [medications] on two occasions which exacerbated [my son’s] symptoms,” she went on to say.

“After these negative experiences with medications, along with the many blood tests, imaging, etc., my son has suffered medical trauma,” Jane added.​

Also from the description, MIS-C is clearly basically ME. Or PVFS, whatever.


Long COVID in children: Personal and expert perspectives

https://www.medicalnewstoday.com/articles/long-covid-and-children-the-unseen-casualties-of-covid-19
 
rvallee said:
I basically view the ME-BPS model as the medical equivalent of classical mechanics textbook examples of the like: suppose a cow is a spherical object of uniform density. Which for the simple mechanics of inertia mostly works, at least for F=ma and balistics trajectories.

Except it's actually serious. Simplification is useful. Oversimplification isn't.
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who exactly wants to use cows as projectile weapons . there are some strange people in physics .
 
CTV News Canada: Some COVID-19 long-haulers are developing a 'devastating' syndrome

quote:
“I’ve heard people say, ‘long COVID isn’t ME/CFS.’ Well, they don't understand what ME/CFS is, right? The case definition of ME/CFS describes the clinical presentation. And if people with long COVID meet the ME/CFS criteria, that’s ME/CFS,” she said during a telephone interview with CTVNews.ca last week.

Moreau is also studying COVID-19 patients who have developed ME/CFS. He said that experts know that more than 80 per cent of people with ME/CFS developed the disease after they had a viral infection such as the flu, mononucleosis primarily caused by the Epstein-Barr virus (EBV), or a bacterial infection, such as Lyme disease.

He said they also know from past studies that other coronaviruses, such as Middle East Respiratory Syndrome (MERS) and Severe Acute Respiratory Syndrome (SARS), can lead to ME/CFS so it makes sense that SARS-CoV-2, the virus that causes COVID-19, could have the same effect.

It’s a worrying prospect for both Moreau and Bateman."
 
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The entire point of the BPS ideology is to keep people out of medical care. Apparently some health care professionals are surprised that people who are deliberately mistreated, for the purpose of making it clear that they should not be using health care services, stop using those services. Which is the whole point to begin with. Mass gaslighting leads to people staying away.

It works very well. It keeps sick people out of the health care system. Out of sight, out of mind. Perverse incentives lead to perverse outcomes.

 
The EU executive is apparently pushing for €95M to fund demographic studies and trials with the purpose of having 5 effective treatments for Long Covid by the end of the year.

That's adorable. Sounds a lot like that computer science professor who tasked a single PhD student in the 60's or 70's to solve the problem of computer vision over their summer break, which is still unsolved to this day.

https://www.nicematin.com/sante/cov...r-5-nouveaux-traitements-dici-fin-2021-680908

https://translate.google.com/translate?hl=en&sl=auto&tl=en&u=https://www.nicematin.com/sante/covid-long-lue-veut-avoir-5-nouveaux-traitements-dici-fin-2021-680908
 
rvallee said:
It works very well. It keeps sick people out of the health care system. Out of sight, out of mind. Perverse incentives lead to perverse outcomes.
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But if we have no idea how to treat Long Covid surely there is no point in sending people to Lung Physios who want to be kept busy? I cannot think of anything aLung Physio could help with in this situation.
 
Mij said:
My understanding is that respiratory physiotherapistsl address respiratory and peripheral muscle weakness, deconditioning and physical inactivity.
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But what does 'addressing' achieve? Is there any evidence that they know what to recommend? I don't actually believe that if your respiratory muscles are weak that doing 'exercises' will do anything useful. If those muscles needed to do more they would be told to do so involuntarily by the brain stem and strengthen if they could.

I may be wrong but does anyone have any evidence that they can do anything useful? My experience of physio as a rheumatologist was that it largely perpetuated the tradition of medicine of doing something for the sake of seeming to do something. The situation in children is different in some respects but in general physio is not evidence based.
 
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