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Research underway related to Long Covid
- Thread starter rvallee
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anciendaze
Senior Member (Voting Rights)
I'm including a link to this article in The Atlantic because it tells about new groups being formed to research COVID-19 long-haulers.
Mij
Senior Member (Voting Rights)
From the article/link above:
"The trick, then, is to slowly recondition a patient’s nervous system through careful exercises, without triggering a debilitating crash. On Putrino’s team, a strength and conditioning coach devises workouts to slowly get patients accustomed to a higher heart rate. A nutritionist fashions personalized meal plans to compensate for any dietary deficiencies. A neuropsychologist—Gudrun Lange, who has long worked with ME/CFS patients and is helping the group pro bono—uses relaxation and somatic-awareness techniques to help long-haulers manage their feelings about their condition'.
Why don't they follow what experienced ME specialists advise for their patients and avoid exercise? They're just spreading ignorance.
"The trick, then, is to slowly recondition a patient’s nervous system through careful exercises, without triggering a debilitating crash. On Putrino’s team, a strength and conditioning coach devises workouts to slowly get patients accustomed to a higher heart rate. A nutritionist fashions personalized meal plans to compensate for any dietary deficiencies. A neuropsychologist—Gudrun Lange, who has long worked with ME/CFS patients and is helping the group pro bono—uses relaxation and somatic-awareness techniques to help long-haulers manage their feelings about their condition'.
Why don't they follow what experienced ME specialists advise for their patients and avoid exercise? They're just spreading ignorance.
rvallee
Senior Member (Voting Rights)
Not good. The dedication some people have to repeat the same mistakes over and over again is amazing.
It's a standard exercise program with some POTS-specific added bits: https://www.dizziness-and-balance.com/treatment/rehab/pots training.html. It seems entirely based on the assumption of deconditioning, which is still a bunch of made-up BS.
Snowdrop
Senior Member (Voting Rights)
Just from a quick search on the web it would seem that neuropsychology is an actual thing that is taken as real and there is not much by way of criticism of it given it's completely lack of validity and evidence as to how things actually work.
It is the job of science to prove things wrong until you can't. Everything about certain parts of psychiatry and psychology work in exactly the opposite way. They believe they know much more than they do because they are awed by their own theorising.
Neurology is a real discipline with the potential to make real and valuable discoveries in science but not while it's shackled to psychobabble.
It is the job of science to prove things wrong until you can't. Everything about certain parts of psychiatry and psychology work in exactly the opposite way. They believe they know much more than they do because they are awed by their own theorising.
Neurology is a real discipline with the potential to make real and valuable discoveries in science but not while it's shackled to psychobabble.
and basically CBT without the label
rvallee
Senior Member (Voting Rights)
Yup, just looks like a standard exercise program. Which no one has to this day presented convincing evidence is a problem, there is simply no such thing as fluctuating or sudden deconditioning, that's just not how any of this works. Hundreds of millions of very sedentary people have no serious health problems. There is no basis whatsoever to the idea that deconditioning plays any role whatsoever.
Apparently there is also CHOP, a modified Levine protocol: https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf. It's just showing people how to exercise, which a lot of people already can do and don't need to be shown to chew their food before swallowing. So many reports of very fit people, basically health nuts, who run the equivalent of a marathon per week just for fun, who are stuck with exertion intolerance. They don't need to be told how to exercise. Such a patronizing assumption. Disappointing from dysautonomia international, I thought they were better than this.
It's possible that there are people with POTS or dysautonomia who have no other symptoms but everything I have read so far contradicts that. Maybe some subsets but no one has ever identified them in population studies, let alone provided useful evidence for how to tell individual cases so those who fall outside of those subsets can be spared the needless humiliation and pain of deterioration with being dropped for dead by their medical providers when they "fail" the treatment.
Mij
Senior Member (Voting Rights)
From rvailee's link:
"Please remember!!!
We are available for questions or concerns; however we ask that should there be a sudden change in your symptoms or sudden beginning of a new symptom that you contact your primary care provider first. We want them to be able to help you assess whether there is an emergency problem and you should go the Emergency Department, be seen in the office, or if the issue can be handled through a call made to us by you or your primary care provider. Like you, they will have a copy of the letter from our visit together".
"Please remember!!!
We are available for questions or concerns; however we ask that should there be a sudden change in your symptoms or sudden beginning of a new symptom that you contact your primary care provider first. We want them to be able to help you assess whether there is an emergency problem and you should go the Emergency Department, be seen in the office, or if the issue can be handled through a call made to us by you or your primary care provider. Like you, they will have a copy of the letter from our visit together".
anciendaze
Senior Member (Voting Rights)
BGR has a report on yet another mysterious symptom of COVID-19 that ME/CFS patients will recognize, tinnitus.
I've lived with tinnitus that appeared during an unidentified viral infection for the last 28 years.
Background: those who try to make sense of my accounts may recall that "the worst flu of my life" was the "Asian flu" of 1957. I was also exposed to the "Punta Gorda flu" in 1956, but experienced no more than an ordinary cold. Like a number of New York patients seen by Dr. David S. Bell, my life after that has been like a game of chutes and ladders, long slow recoveries and rapid crashes. I had crashes in high school, college and the Army, though I made it out of the Army on my feet. I can't really say how many cycles like this I've been through. By comparison with previous illnesses, the one that hit me in 1992 was not particularly bad, but introduced this new symptom of tinnitus. I'm afraid that my determination to push through, as I had previously done, turned this into a long-term crash. Besides the unusual fatigue, there was an increase in orthostatic intolerance, dysautonomia and a dramatic reduction in working memory that shows up as dyscalculia. This was a serious problem for someone with two and a half degrees in mathematical subjects, and a career based on them. I can sort of explain the arithmetic problem to medical doctors, who suggest I can just use a calculator. The more esoteric mental tasks required for symbolic mathematics generally get short shrift, because they never exercised such abilities themselves. Incidentally, I'm not the first person to experience such a dramatic loss in mid-career. Some such cases are connected with "flu-like illnesses".
In a volume dedicated to the acknowledged genius Stanislav Ulam, I learned that he had gone through a mysterious fever while at Los Alamos after which he could not do detailed calculations. His imagination was unimpaired, but he needed collaborators to carry out mathematical research. He lost something essential to most mathematicians, the ability to carry out long gruesomely detailed calculations, which German speakers call Sitzfliesch. Most mathematicians admit that success in publications depend more on this characteristic than on imagination. His friend Gian-Carlo Rota recalled that after this illness Ulam "had no sitzfleisch at all."
I've lived with tinnitus that appeared during an unidentified viral infection for the last 28 years.
Background: those who try to make sense of my accounts may recall that "the worst flu of my life" was the "Asian flu" of 1957. I was also exposed to the "Punta Gorda flu" in 1956, but experienced no more than an ordinary cold. Like a number of New York patients seen by Dr. David S. Bell, my life after that has been like a game of chutes and ladders, long slow recoveries and rapid crashes. I had crashes in high school, college and the Army, though I made it out of the Army on my feet. I can't really say how many cycles like this I've been through. By comparison with previous illnesses, the one that hit me in 1992 was not particularly bad, but introduced this new symptom of tinnitus. I'm afraid that my determination to push through, as I had previously done, turned this into a long-term crash. Besides the unusual fatigue, there was an increase in orthostatic intolerance, dysautonomia and a dramatic reduction in working memory that shows up as dyscalculia. This was a serious problem for someone with two and a half degrees in mathematical subjects, and a career based on them. I can sort of explain the arithmetic problem to medical doctors, who suggest I can just use a calculator. The more esoteric mental tasks required for symbolic mathematics generally get short shrift, because they never exercised such abilities themselves. Incidentally, I'm not the first person to experience such a dramatic loss in mid-career. Some such cases are connected with "flu-like illnesses".
In a volume dedicated to the acknowledged genius Stanislav Ulam, I learned that he had gone through a mysterious fever while at Los Alamos after which he could not do detailed calculations. His imagination was unimpaired, but he needed collaborators to carry out mathematical research. He lost something essential to most mathematicians, the ability to carry out long gruesomely detailed calculations, which German speakers call Sitzfliesch. Most mathematicians admit that success in publications depend more on this characteristic than on imagination. His friend Gian-Carlo Rota recalled that after this illness Ulam "had no sitzfleisch at all."
anciendaze
Senior Member (Voting Rights)
Another reference to organizations set up by COVID-19 "long-haulers" in Buzzfeed. This time getting a meeting with the WHO.
I'll admit this is short on actual research, but then this whole pandemic is just now reaching the threshold for determination of ME/CFS. By definition there hasn't been enough time for many kinds of research, even without a delay for peer review and publication. This post is simply a lead on where to look for forthcoming research.
I'll admit this is short on actual research, but then this whole pandemic is just now reaching the threshold for determination of ME/CFS. By definition there hasn't been enough time for many kinds of research, even without a delay for peer review and publication. This post is simply a lead on where to look for forthcoming research.
I hate that we apparently have to add 'personalized' to the long list of words that now mean something in between 'making it up as we go' and 'faffing about'. And possibly 'well-trained', but this may be one of those overly specific phrases where they don't explicitly state to what all the sublime wellness of the training pertains so it is all good.
Meh.
It is the same thing all the time, if the people working here do not genuinely know how to do something please pretty please just set up a proper study before you go ahead winging something that has no established basis. This is not about an immediate life-or-death situation in an emergency room, this is a topic that will affect possibly millions of people for at least a number of years. We do not know anything about how the damage in long covid works, we have assumptions about lung damage and some data about blood clotting and so on. The assumption you know how to help people because you instruct them on a training protocol you make up on the fly, maybe even somehow according to changes in symptoms, with an illness that is not understood is just over-extrapolating experience from other situations that may not necessarily be relevant here at all.
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rvallee
Senior Member (Voting Rights)
Ah, yeah, quite a silly concept.
"You mean that typically when you see patients you just give them all the exact same stuff no matter what and that medicine has always done that before the whole 'personalized medicine' thing?"
Obviously no. There is no such thing as one-size-fits-all medicine, it's almost always personalized, it would make no sense otherwise. Bunch of silly marketing nonsense straight from Freud's nephew (true story, Freud's nephew basically invented the modern marketing industry, applying psychological manipulation to sell stuff, just like his uncle).