Is ‘Long Covid’ similar to ‘Long SARS’?, 2022, Patcai

[Dolphin]

Free full text: https://academic.oup.com/ooim/article/3/1/iqac002/6604756

Is ‘Long Covid’ similar to ‘Long SARS’?
https://doi.org/10.1093/oxfimm/iqac002
John Patcai
Published: 09 June 2022

Extract:
I will point out that clinically none of our 50 patients got their old life back with time and treatment. Some were never able to return to work. Some had a trial of return to work and failed. Some had a trial of return to modified work, which then failed. Some had seniority to move to an easier position at work, which then failed. Some returned to being able to look after themselves completely, but could not return to work or sports. Some needed ongoing help (usually family) to do their daily activities. Some persisted in doing their daily activities, but slowly and intermittently, with frequent rests and dropping out of all non-essential activities. Not one reported that they were fully recovered and back to all their pre-SARS activities.

 

[oldtimer]

Free full text: https://academic.oup.com/ooim/article/3/1/iqac002/6604756

Is ‘Long Covid’ similar to ‘Long SARS’?
https://doi.org/10.1093/oxfimm/iqac002
John Patcai
Published: 09 June 2022

Extract:
I will point out that clinically none of our 50 patients got their old life back with time and treatment. Some were never able to return to work. Some had a trial of return to work and failed. Some had a trial of return to modified work, which then failed. Some had seniority to move to an easier position at work, which then failed. Some returned to being able to look after themselves completely, but could not return to work or sports. Some needed ongoing help (usually family) to do their daily activities. Some persisted in doing their daily activities, but slowly and intermittently, with frequent rests and dropping out of all non-essential activities. Not one reported that they were fully recovered and back to all their pre-SARS activities.

Could this have anything to do with the lack of recovery for every single one of the fifty patients? (The rehabilitation treatments were initially for 3–5 h a day, 3 days a week (!!) and included physical and psychological.)

"Their physical rehabilitation was necessary. The exercises were very wearing, as fatigue was already one of their main symptoms. Their physical function did initially improve, but only slowly, with much effort required, and a disease-imposed cap on the outcome. If the improvement was small, why was it valuable? Because there was a very significant possibility that between deconditioning, weakness, fatigue, anxiety, depression and PTSD that these patients could have become even more limited in their function. So, although small gains were made in physical function, the primary benefit may have been to help prevent deterioration."

http://www.china.org.cn/english/features/sars/67356.htm . This article quotes David Heymann, WHO executive director of communicable diseases at the time, saying that the average full recovery rate from SARS was 85%. The rates of recovery were much higher in younger age groups. The patients in the Patcai study ranged from mid 20s to mid 60s.

 

[ME/CFS Skeptic]

Interesting article, thanks for posting. Some more quotes:

In 2004, our hospital [6] created an extensive interdisciplinary rehabilitation program for 50 severely impaired post-SARS patients. At the time I was the Medical Director and the Chief of Staff. The intensity and duration of the program, together with the number of service providers, is unlikely to be matched by any current program. Ours was the gold standard of rehab programs for post coronavirus symptomatology. It was funded by the Workplace Safety and Insurance Board (WSIB) of Ontario exclusively as a treatment program.

....

The distance walked in six minutes increased from a median of 281 m at 3 months to 422 m at 12 months; all values were lower than predicted’. In summary, they did find some improvements but overall, there remained significant ongoing impairments in lung function, quality of life and in the ability to walk distances at normal speed.

....

Their physical rehabilitation was necessary. The exercises were very wearing, as fatigue was already one of their main symptoms. Their physical function did initially improve, but only slowly, with much effort required, and a disease-imposed cap on the outcome. If the improvement was small, why was it valuable? Because there was a very significant possibility that between deconditioning, weakness, fatigue, anxiety, depression and PTSD that these patients could have become even more limited in their function. So, although small gains were made in physical function, the primary benefit may have been to help prevent deterioration.

...

Not one reported that they were fully recovered and back to all their pre-SARS activities.

...

All of the foregoing information is provided as a personal opinion to help guide treatment and counseling, so as to provide hope but not false hope for those affected by Long Covid​

 

[rvallee]

It failed. And they think it succeeded anyway, telling themselves it would have been worse otherwise, when given what we know, it's actually more likely they made all outcomes worse for those who never recovered, and had no more real impacts to those who did than juggling healing crystals while humming La Marseillaise.

And this is medicine's failure dealing with chronic illness: they are not assessing themselves accurately and honestly, prefer comforting lies to harsh truths. The feedback is broken, it's like getting bonuses for producing fewer units of lesser quality than expected. Nothing works like that anywhere outside of politics.

And I'm sure that these people would do it all over again with long haulers, attributing to themselves every small gain, while completely ignoring everything else. Failure is baked into the system, molded by it in the worst possible way.

 

[Mij]

Posts moved from the Long Covid in the media thread

 

[Trish]

The author points out that the paper was not published today, but last June.

 

[rvallee]

The tone and framing of this article is disturbing, it shows the vast differences between good intentions and expertise. They pushed the patients hard, no one recovered, and from the comments it seems they'd do it all over again the same way, nothin learned about the generalized issue of post-infectious chronic illness. It's even likely that because of the small number of patients, that being able to see all of them for so long, it's pushing them this way that lead to zero recoveries. But we'll never know, because no one bothered to find out.

It's frankly everything wrong with medicine: the gushing paternalism, describing the patients as beautiful in their suffering, having so much compassion and all, and even though they failed miserably, everyone would do it all over again the same, or at least it seems like that. Having good intentions, say unlike our BPS overlords, changes nothing in outcome if the same mode of thinking blinds them to reality.

Medicine is thousands of years old. For most of that history, physicians only had clinical experience to guide them, and they learned almost nothing until the scientific revolution kicked in. Learning from experience doesn't work in medicine, in many cases the exact wrong thing gets "learned". The only thing that was learned in all this time is rough surgery and anatomy, the rest was almost entirely wrong. All the important stuff was missed until technology allowed it. In the end, progress in medicine is progress in overall technology, the rest barely makes any difference.

Medicine without science straight up doesn't work. And it's showing all over again and again. And despite this, the general tone I see in medicine is that science is a waste of time, too long, too expensive, don't know where to begin (it's a 3-step process, damnit), etc. There is no appetite for research, and most of it is aimed to be wasted on psychosocial fluff.

What's missing is half of it: the patient's experience. Had those clinicians listened to their patients, they could have learned. But they never listen to us, so they can't learn this way. The same is missing in research, all they end up doing is asking the wrong questions the wrong way and then give up. It's all so obvious, but it can only be seen from the patient's perspective, the professionals, they're too far out high in the clouds to see anything down here.

 

[RedFox]

Very, very few clinicians would have understood PEM in the early 2000s. Today we know they badly messed up by giving people rigorous rehabilitation. However, it's bizarre that the author doesn't talk about PEM in retrospect.

 

[rvallee]

Very, very few clinicians would have understood PEM in the early 2000s. Today we know they badly messed up by giving people rigorous rehabilitation. However, it's bizarre that the author doesn't talk about PEM in retrospect.

Patients have been reporting this for decades. It's literally the bare minimum expected of experts to see the basic stuff, and then some. I don't agree that they couldn't have seen this, nailing the basics is what separates experts from amateurs, and here the amateurs did very well, in fact pretty much did most of the work that professionals refused to even look at.

Most of the stuff medicine has figured out is much harder than this, technically speaking. Of course learning from a class with the help of a teacher who has a textbook and being first to understand what no one else knows is a completely different process requiring very different skills, but that's also why we have a giant profession with licensed experts, they can do this, the only way to fail at this is to fail at being human.