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WHO Clinical management of COVID-19 patients: living guideline
- Thread starter Cheshire
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- guidelines long covid who
rvallee
Senior Member (Voting Rights)
I skimmed this. Most of the information is correct, nothing big raising red flags.
But it's completely fanciful as a plan to do "rehabilitation" for this. It just doesn't scale, and it doesn't even work anyway. There have been hundreds of trials of this and they all show zero difference in outcomes other than meaningless secondary concepts on biased questionnaires.
1) It's just way too many people. Healthcare systems simply cannot process that many people, there aren't enough rehabilitation specialists, and none of them are trained on this.
2) None of them are trained on this. Seems like this needs to be repeated but NO ONE IS TRAINED ON THIS. There are no schools, no programs, not a damn thing that currently teaches anyone in this. It would take years to get a baseline that can't even meet 1% of the demand and it would still be a major crapshoot whether it's any better than nothing.
3) The economics of this are absurd. Who will pay for this? Who will structure and organize this? No one has the slack for it. Healthcare systems were already unable to meet at least 1/4 of the demand before the pandemic and they are swamped even further because it's not over.
4) There is still no evidence that any of this works at anything. Most of the problems here are a direct results of the medical profession being unable to acknowledge uncomfortable truths. The idea of pushing people onto psychological counseling caused by medicine's continuing denial and gaslighting, the main consequences of illness being the loss of pretty much everything mostly because of ongoing denial: loss of income from a job, loss of support from friends and family. All of this are direct consequences of the denial. Stop creating the problem and you don't have to deal with it.
At least the information is correct, but it still feels very insulting to have all this talk of "education" in so many places when most patients are still in a better position to teach medical professionals because they just know more about it and understand it better. It's ridiculous to think that professionals can just teach stuff to people that understand it far better than they do.
The motivation behind this, as commented by one of the authors, is that patients need help now, and research could take years. But this is not a solution for now. It's not even realistic as a solution for the next 2 years, it would take at least as much simply to get a small % of medical professionals to the level of knowledge the patient community has built up within months. They simply move too slowly and there is zero guarantee that any of this training will be competent, that it will not be hijacked and modified to the same old conversion disorder model.
This is really where intent is simply irrelevant. Most people working in alternative medicine have good intent. Intending to help is just not good enough, this is what pseudoscience does already. There is no such thing as magic rehabilitation, where people heal just because they are in the healing presence of a healing person or whatever. This is a fantasy model. I know it's harsh but damnit this is nothing but a giant waste for the most part, and there is always a risk that to many people this will be good enough, no matter how useless and expensive it is.
Sorry but we need far better than this, and the idea that this is a better short-term solution when even on the medium term it makes no sense. It's simply taking advantage of the passage of time, potted plant medicine. What we need is the truth, the whole truth and nothing but the truth. Which medicine needs to be able to accept, where most of the work needs to happen, and what is still holding everything up, especially research.
The road to hell is paved with good intentions. Stop paving the damn road. We need an entirely different road that leads somewhere good, not the same old dead-end based on hoping that just trying and having good will and intention and healing vibes is all that's needed.
But it's completely fanciful as a plan to do "rehabilitation" for this. It just doesn't scale, and it doesn't even work anyway. There have been hundreds of trials of this and they all show zero difference in outcomes other than meaningless secondary concepts on biased questionnaires.
1) It's just way too many people. Healthcare systems simply cannot process that many people, there aren't enough rehabilitation specialists, and none of them are trained on this.
2) None of them are trained on this. Seems like this needs to be repeated but NO ONE IS TRAINED ON THIS. There are no schools, no programs, not a damn thing that currently teaches anyone in this. It would take years to get a baseline that can't even meet 1% of the demand and it would still be a major crapshoot whether it's any better than nothing.
3) The economics of this are absurd. Who will pay for this? Who will structure and organize this? No one has the slack for it. Healthcare systems were already unable to meet at least 1/4 of the demand before the pandemic and they are swamped even further because it's not over.
4) There is still no evidence that any of this works at anything. Most of the problems here are a direct results of the medical profession being unable to acknowledge uncomfortable truths. The idea of pushing people onto psychological counseling caused by medicine's continuing denial and gaslighting, the main consequences of illness being the loss of pretty much everything mostly because of ongoing denial: loss of income from a job, loss of support from friends and family. All of this are direct consequences of the denial. Stop creating the problem and you don't have to deal with it.
At least the information is correct, but it still feels very insulting to have all this talk of "education" in so many places when most patients are still in a better position to teach medical professionals because they just know more about it and understand it better. It's ridiculous to think that professionals can just teach stuff to people that understand it far better than they do.
The motivation behind this, as commented by one of the authors, is that patients need help now, and research could take years. But this is not a solution for now. It's not even realistic as a solution for the next 2 years, it would take at least as much simply to get a small % of medical professionals to the level of knowledge the patient community has built up within months. They simply move too slowly and there is zero guarantee that any of this training will be competent, that it will not be hijacked and modified to the same old conversion disorder model.
This is really where intent is simply irrelevant. Most people working in alternative medicine have good intent. Intending to help is just not good enough, this is what pseudoscience does already. There is no such thing as magic rehabilitation, where people heal just because they are in the healing presence of a healing person or whatever. This is a fantasy model. I know it's harsh but damnit this is nothing but a giant waste for the most part, and there is always a risk that to many people this will be good enough, no matter how useless and expensive it is.
Sorry but we need far better than this, and the idea that this is a better short-term solution when even on the medium term it makes no sense. It's simply taking advantage of the passage of time, potted plant medicine. What we need is the truth, the whole truth and nothing but the truth. Which medicine needs to be able to accept, where most of the work needs to happen, and what is still holding everything up, especially research.
The road to hell is paved with good intentions. Stop paving the damn road. We need an entirely different road that leads somewhere good, not the same old dead-end based on hoping that just trying and having good will and intention and healing vibes is all that's needed.
BrightCandle
Senior Member (Voting Rights)
If there was going to be one change that might save some lifes and disability its actually getting doctors to accept that these conditions are real. That is 95% of all doctors in the world today will dismiss patients with these conditions as fakers. Expecting some massive cross department coordination on a disease they don't even believe exists is utter fantasy. You need a diagnostic and you need real treatments that double blind trials show actually work, everything else is basically a waste of time and money. Something like this fails at the first hurdle, no doctors are diagnosing patients because they don't believe the disease exists. Even well managed patients don't get better, there is no rehabilitation here, just avoiding getting worse. Stopping people getting worse is the best you can do and that has to come from fixing medicine the world over, that is a big enough task. This recommendations list is aimed at a world that doesn't exist.
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rvallee
Senior Member (Voting Rights)
Just want to add that I think this is a great foundation for a long-term transformation of healthcare dealing with chronic illness. The substance is good, but this is a 5-10 year plan at a bare minimum, just to get started. It's simply not viable as a short- or medium-term solution to Long Covid, and it also can't be restricted to LC. It's also not enough to teach OTs and PTs, MDs also need to have basic training on this, otherwise they'll stick with the thinking of rehab being an effective process that makes the patients healthy at the end, rather than something complementary to effective treatments that still have to be developed, tested and put into practice.
I frankly don't see any effective healthcare that doesn't include a bona fide specialty for chronic illness of its own, probably as big as any of the current major specialties. This is transformational stuff that will go at the pace at which medicine allows it to, which so far is the same old running around in circles.
First there are decades of indoctrination in the psychosomatic ideology to undo, lessons have to be learned from all those mistakes. That alone would probably take a decade and it hasn't even started yet.
I frankly don't see any effective healthcare that doesn't include a bona fide specialty for chronic illness of its own, probably as big as any of the current major specialties. This is transformational stuff that will go at the pace at which medicine allows it to, which so far is the same old running around in circles.
First there are decades of indoctrination in the psychosomatic ideology to undo, lessons have to be learned from all those mistakes. That alone would probably take a decade and it hasn't even started yet.
BrightCandle
Senior Member (Voting Rights)
As far as I can tell doctors don't change their opinion on these sorts of things over their careers for the most part. Like 95% of people out in the world once they have learnt their profession they stick to what they know and don't keep up. With appointments getting shorter there is no time for professional development so they are unlikely to change. The earliest I can see this changing significantly is 40 years, the time for a career to complete and the problem is they are still teaching the old way and that will take 40 years to get wiped out now, if you banned it today. So 80 years minimum. Its not viable to do this the usual way with slow osmosis of opinion change making its way into the education and new doctors coming out with up to date knowledge. It is a health emergency and they need to treat it as such and shoot this into them or fire them if they refuse to accept the reality.
Peter T
Senior Member (Voting Rights)
I think things could change quicker if we had a relatively inexpensive clinically practical diagnostic test and an easy to prescribe miracle pill. If something obviously makes doctors lives easier they will readily adopt it. However I agree @BrightCandle without that any change will be painfully slow.
ME/CFS Skeptic
Senior Member (Voting Rights)
The document has a section (page 110) on PEM, which they call PESE, which is largely based on the NICE guideline and recommends pacing. But strangely, it doesn't mention ME/CFS itself. I would think it would be quite useful for patients who developed ME/CFS after Covid-19, to be able to get this diagnosis and for doctors to be aware of it.
The section on fatigue recommends GET, referencing the 2019 Cochrane review for ME/CFS, but it adds that "there is uncertainty how this evidence applies to people experiencing post-exertonal symptom exacerbaton."
The document constantly states how important rehabilitation is and how they think it will improve patients quality of life, but in every section they admit that there is really no evidence and that it is all based on expert advice.
So while the document isn't all bad, its reasoning is quite bizarre, probably a consequence of trying to keep everybody happy.
The section on fatigue recommends GET, referencing the 2019 Cochrane review for ME/CFS, but it adds that "there is uncertainty how this evidence applies to people experiencing post-exertonal symptom exacerbaton."
The document constantly states how important rehabilitation is and how they think it will improve patients quality of life, but in every section they admit that there is really no evidence and that it is all based on expert advice.
So while the document isn't all bad, its reasoning is quite bizarre, probably a consequence of trying to keep everybody happy.
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rvallee
Senior Member (Voting Rights)
This thread highlights most of the relevant parts about PEM/PESE. It's definitely progress but pretty absurd that concepts developed only for ME are being used and applied without any mention or recognition of ME. So much time wasted avoiding the obvious.
IMO there is far too much mention of rehabilitation that continues the swapping of outcome as the process. It frames increased activity as the process of improvement, when it's the outcome. This would be like severe nausea guidelines that advise force-feeding by making eating the process of overcoming nausea, instead of what comes naturally once it's resolved. And not caring whether the patient holds the food, putting the blame on them when they don't.
Way too much of this:
IMO there is far too much mention of rehabilitation that continues the swapping of outcome as the process. It frames increased activity as the process of improvement, when it's the outcome. This would be like severe nausea guidelines that advise force-feeding by making eating the process of overcoming nausea, instead of what comes naturally once it's resolved. And not caring whether the patient holds the food, putting the blame on them when they don't.
Way too much of this:
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Tom Kindlon
Senior Member (Voting Rights)
FWIW
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ME/CFS Skeptic
Senior Member (Voting Rights)
Looks like Simon Wessely was part of the GDG panel. But also ME/CFS researcher Simon Décary.
Sly Saint
Senior Member (Voting Rights)
"Finally! New @WHO guideline specifies: NO EXERCISE THERAPY for #PostCovid patients if they suffer from POST-EXERTIONAL SYMPTOM EXACERBATION."
it's only taken 'the ME community' 30 years of grief to begin to get this acknowledgement and the fight still continues.
it's only taken 'the ME community' 30 years of grief to begin to get this acknowledgement and the fight still continues.
