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News about Long Covid including its relationship to ME/CFS 2020 to 2021
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rvallee
Senior Member (Voting Rights)
If someone's in a listening mood, there's no transcript. 30 minutes with the NIH Recover initiative lead:
Direct link: https://www.nejm.org/action/showMediaPlayer?doi=10.1056/NEJMdo006435&aid=10.1056/NEJMe2201619&area=.
Direct link: https://www.nejm.org/action/showMediaPlayer?doi=10.1056/NEJMdo006435&aid=10.1056/NEJMe2201619&area=.
rvallee
Senior Member (Voting Rights)
Reddit thread from the /r/CovidLongHaulers forum: Comment the number 1 thing that’s helped you the most with your longcovid.
Skimmed and lots of different answers, top ones are: rest & pacing, antihistamines and patient forums. But it is about things that "helped", low standard. Nothing that stands out and makes a difference. A few odd mentions of vaccines and one about exercise but they don't have PEM. It's mostly time for people who can rest.
Meanwhile there are many clinics who attribute their own efforts to their patients' recoveries even though time is clearly the biggest factor for most. That's just terrible science.
Skimmed and lots of different answers, top ones are: rest & pacing, antihistamines and patient forums. But it is about things that "helped", low standard. Nothing that stands out and makes a difference. A few odd mentions of vaccines and one about exercise but they don't have PEM. It's mostly time for people who can rest.
Meanwhile there are many clinics who attribute their own efforts to their patients' recoveries even though time is clearly the biggest factor for most. That's just terrible science.
mango
Senior Member (Voting Rights)
The Swedish Covid Association has published a short info sheet (in Swedish) about vision-related symptoms after covid-19 infection, authored by optician Jan Johansson at Karolinska. They suggest you bring it with you to your optician appointment.
Synproblem efter covid?
https://covidforeningen.se/synproblem-efter-covid/
Synproblem efter covid?
https://covidforeningen.se/synproblem-efter-covid/
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Snowdrop
Senior Member (Voting Rights)
After reading the whole thread I really don't have much of a problem with this provided that the clinicians have been developing a sound understanding of PEM.
There will always be some people who are very mild or who are on the way to recovery anyway. If they are working within there limits as we all try to do then its all good.
But they will inevitably see people for whom it is not possible to add ANY exercise to there daily routine -- so long as that is recongnised and safe-guarded and they have access to monitoring and testing or symptomatic relief of whatever then it's still OK by my estimate.
There will always be some people who are very mild or who are on the way to recovery anyway. If they are working within there limits as we all try to do then its all good.
But they will inevitably see people for whom it is not possible to add ANY exercise to there daily routine -- so long as that is recongnised and safe-guarded and they have access to monitoring and testing or symptomatic relief of whatever then it's still OK by my estimate.
Dolphin
Senior Member (Voting Rights)
Pay-walled article in an Irish national newspaper:
Tackling brain fog and other nasty legacies Covid-19 has left in its wake Luke O'Neill
Insights gained into how to treat long Covid will be useful in dealing with other viral infections
https://www.independent.ie/opinion/...s-covid-19-has-left-in-its-wake-41341618.html
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But it also got me thinking about how, following a viral infection, there can be residual symptoms. This is sometimes called post-viral fatigue syndrome — or in the case of Covid-19, long Covid, which is also called Post-Acute Sequelae of Covid (PASC). One study has shown that around 10pc of people between the ages of 18 and 49 who have had Covid-19 get long Covid. This rises to 20pc for those 70 or older. Anyone can get it, even if you’re very healthy before you catch Covid-19. It can even happen after mild Covid-19 symptoms so there is no rhyme or reason to it. And it seems to affect everyone differently. Symptoms include fatigue, loss of smell and taste, shortness of breath on exertion, trouble with sleeping and low-level anxiety. And it can go on for months.
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"In the meantime, doctors recommend that people with long Covid should pace themselves and not overdo things. Light exercise or yoga have been shown to be beneficial. Don’t hesitate to reach out for support from friends, family and your GP."
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"The insights gained and therapeutic approaches that emerge will be useful in the treatment of long Covid, but also for the symptoms reported following other infections including chronic fatigue syndrome."
Tackling brain fog and other nasty legacies Covid-19 has left in its wake Luke O'Neill
Insights gained into how to treat long Covid will be useful in dealing with other viral infections
https://www.independent.ie/opinion/...s-covid-19-has-left-in-its-wake-41341618.html
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But it also got me thinking about how, following a viral infection, there can be residual symptoms. This is sometimes called post-viral fatigue syndrome — or in the case of Covid-19, long Covid, which is also called Post-Acute Sequelae of Covid (PASC). One study has shown that around 10pc of people between the ages of 18 and 49 who have had Covid-19 get long Covid. This rises to 20pc for those 70 or older. Anyone can get it, even if you’re very healthy before you catch Covid-19. It can even happen after mild Covid-19 symptoms so there is no rhyme or reason to it. And it seems to affect everyone differently. Symptoms include fatigue, loss of smell and taste, shortness of breath on exertion, trouble with sleeping and low-level anxiety. And it can go on for months.
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"In the meantime, doctors recommend that people with long Covid should pace themselves and not overdo things. Light exercise or yoga have been shown to be beneficial. Don’t hesitate to reach out for support from friends, family and your GP."
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"The insights gained and therapeutic approaches that emerge will be useful in the treatment of long Covid, but also for the symptoms reported following other infections including chronic fatigue syndrome."
Kalliope
Senior Member (Voting Rights)
Kyodo News FEATURE: Reduced brain function, immune disorder a possibility of "long COVID"
Quote:
The center has long studied chronic fatigue syndrome, which causes various symptoms such as extreme fatigue and body aches. The presence of autoantibodies that disrupt the function of autonomic nerves is presumed to be one of the factors involved in chronic fatigue syndrome.
Sato said the center is applying the same knowledge to patients with long COVID, who exhibit many symptoms in common with CFS sufferers.
"Although they are few, some people with influenza do not fully recover. However, with COVID, there are many who don't, and this is why it is a particularly scary illness," Sato said.
Quote:
The center has long studied chronic fatigue syndrome, which causes various symptoms such as extreme fatigue and body aches. The presence of autoantibodies that disrupt the function of autonomic nerves is presumed to be one of the factors involved in chronic fatigue syndrome.
Sato said the center is applying the same knowledge to patients with long COVID, who exhibit many symptoms in common with CFS sufferers.
"Although they are few, some people with influenza do not fully recover. However, with COVID, there are many who don't, and this is why it is a particularly scary illness," Sato said.
Kalliope
Senior Member (Voting Rights)
Article in Cell Reports Medicine from Bergen, Norway about Long Covid. The article discusses among other relationship between Long Covid and other post-infectious syndromes and mentions CFS. One of the authors, Nina Langeland, has researched an outbreak in Bergen in 2004 of the parasite Giardia, which led to chronic illness and some being diagnosed with ME.
Quote:
Subsequently, chronic fatigue syndromes or post-infectious fatigue syndromes have been associated with several infectious diseases, notably brucellosis, Q-fever, giardiasis, mononucleosis and flavivirus infections such as dengue fever. In all these syndromes, excessive fatigue is a key symptom, and several other accompanying symptoms seem to align with key symptoms reported with long-COVID. Research has found similar clinical presentations in post-infectious syndromes caused by different microbes and proposed that the host response may be a more important determinant than the etiological agent. As the pathogenesis of post-infectious fatigue syndromes remains to be elucidated, long-COVID pathogenesis is equally unclear. Interestingly, certain symptoms appear characteristic of long-COVID, such as disturbed taste/smell and dyspnea, indicating that long-COVID might be conceptually different from other postinfectious syndromes.
Blomberg, B., Cox, R.J., Langeland, N., Long-COVID: A growing problem in need of intervention, Cell Reports Medicine (2022), doi: https://doi.org/10.1016/j.xcrm.2022.100552.
Quote:
Subsequently, chronic fatigue syndromes or post-infectious fatigue syndromes have been associated with several infectious diseases, notably brucellosis, Q-fever, giardiasis, mononucleosis and flavivirus infections such as dengue fever. In all these syndromes, excessive fatigue is a key symptom, and several other accompanying symptoms seem to align with key symptoms reported with long-COVID. Research has found similar clinical presentations in post-infectious syndromes caused by different microbes and proposed that the host response may be a more important determinant than the etiological agent. As the pathogenesis of post-infectious fatigue syndromes remains to be elucidated, long-COVID pathogenesis is equally unclear. Interestingly, certain symptoms appear characteristic of long-COVID, such as disturbed taste/smell and dyspnea, indicating that long-COVID might be conceptually different from other postinfectious syndromes.
Blomberg, B., Cox, R.J., Langeland, N., Long-COVID: A growing problem in need of intervention, Cell Reports Medicine (2022), doi: https://doi.org/10.1016/j.xcrm.2022.100552.
Wonko
Senior Member (Voting Rights)
Dunno - surely those that reported loss of taste/smell would have been diagnosed with depression?
They seem to like doing that for several years per patient.
My sense of taste and smell vary a lot, sometimes nothing tastes of anything, sometimes tastes are odd/fowl.
It's 'complicated' by the fact that I used to smoke until about 8 years ago.
But nothing tastes or smells 'right', food that I used to enjoy is just blah.
My point is that who says this is a symptom unique to covid when it's much more likely it's both been ignored or used as 'proof' of a depressive illness until now.
They seem to like doing that for several years per patient.
My sense of taste and smell vary a lot, sometimes nothing tastes of anything, sometimes tastes are odd/fowl.
It's 'complicated' by the fact that I used to smoke until about 8 years ago.
But nothing tastes or smells 'right', food that I used to enjoy is just blah.
My point is that who says this is a symptom unique to covid when it's much more likely it's both been ignored or used as 'proof' of a depressive illness until now.
Arnie Pye
Senior Member (Voting Rights)
I had fairly severe Covid in November. My senses of smell and taste have come back slightly and I've probably got back about 20% of what they were. Food has little taste and I still dislike what used to be my favourite brand of tea. Nothing would persuade me to discuss this with a doctor.
What would be the point?
Mij
Senior Member (Voting Rights)
Problems with taste and smell may be signs of certain health problems, such as:
Obesity
Diabetes
COVID-19
High blood pressure
Poor nutrition
Nervous system diseases such as:
Parkinson disease
Alzheimer disease
Multiple sclerosis
https://www.cedars-sinai.org/health-library/diseases-and-conditions/s/smell-and-taste-disorders.html
Obesity
Diabetes
COVID-19
High blood pressure
Poor nutrition
Nervous system diseases such as:
Parkinson disease
Alzheimer disease
Multiple sclerosis
https://www.cedars-sinai.org/health-library/diseases-and-conditions/s/smell-and-taste-disorders.html
That list should now include Covid-19 and long covid.
Dolphin
Senior Member (Voting Rights)
Study points to vagus nerve dysfunction as a central pathophysiological feature of long COVID
https://www.news-medical.net/news/2...pathophysiological-feature-of-long-COVID.aspx
https://www.news-medical.net/news/2...pathophysiological-feature-of-long-COVID.aspx
Dakota15
Senior Member (Voting Rights)
Scientific American: "COVID Long Haulers Are Calling Attention to Chronic Illnesses"
"Medical science has increasingly understood that infections can trigger ongoing physical symptoms in a subset of people, yet the medical establishment has typically ignored the experiences of those people. Such conditions include myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), so-called chronic Lyme disease, and more."
"The clamor, combined with the scope of the problem, had a clear impact on medical attitudes, making long COVID visible in ways that ME/CFS had struggled for decades to become."
"Medicine has a long history of stigmatizing diseases it does not understand and cannot yet readily measure."
"The potential for transformation goes far beyond long COVID. Understanding what causes this condition might illuminate treatments for ME/CFS, tick-borne illness and other diseases that involve dysfunction of the immune system, many of which are on the rise. “I believe understanding the pathogenesis of long COVID not only will help reveal parallel mechanisms for ME/CFS but also may hold a key to understanding autoimmune diseases, as many autoimmune diseases occur postinfection,” Iwasaki says."
"It is time for medical researchers to investigate these long-contested illnesses with the full force of science’s power and for medical educators to train doctors in how to effectively care for chronically ill patients. If they do not, they will be failing not only this generation of patients but many millions more to come."
"Medical science has increasingly understood that infections can trigger ongoing physical symptoms in a subset of people, yet the medical establishment has typically ignored the experiences of those people. Such conditions include myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), so-called chronic Lyme disease, and more."
"The clamor, combined with the scope of the problem, had a clear impact on medical attitudes, making long COVID visible in ways that ME/CFS had struggled for decades to become."
"Medicine has a long history of stigmatizing diseases it does not understand and cannot yet readily measure."
"The potential for transformation goes far beyond long COVID. Understanding what causes this condition might illuminate treatments for ME/CFS, tick-borne illness and other diseases that involve dysfunction of the immune system, many of which are on the rise. “I believe understanding the pathogenesis of long COVID not only will help reveal parallel mechanisms for ME/CFS but also may hold a key to understanding autoimmune diseases, as many autoimmune diseases occur postinfection,” Iwasaki says."
"It is time for medical researchers to investigate these long-contested illnesses with the full force of science’s power and for medical educators to train doctors in how to effectively care for chronically ill patients. If they do not, they will be failing not only this generation of patients but many millions more to come."
Dakota15
Senior Member (Voting Rights)
OICanadian: "The problems to do physical exercise that those who have long Covid are suffering"
"The research I carried out shows that the difficulty of doing physical exercise is precisely one of the most common symptoms of Covid in the long term,” says Lambert. Some just don’t have the strength, says the scientist, while others suffer relapses of debilitating symptoms such as fatigue, brain fog or muscle pain. This worsening of symptoms even after minimal physical activity—sometimes called “post-exertional malaise” (PEM)—seems very common among long-Covid patients.
"In August, other scientists published an online survey of 3,762 people with long Covid and discovered that 89% manifested post-exercise discomfort."
""However, these exercise-induced problems do not stem from simply being “out of shape.” The effects “are totally different from the common, wild lack of training,” says Dr. David Systrom, an intensive care pulmonologist at Brigham and Women’s Hospital in Boston."
"Some doctors also point out similarities between patients with long Covid and those with chronic fatigue syndrome (also known as myalgic encephalomyelitis or ME/CFS) who suffer from severe exhaustion, cognitive and memory problems, and often muscle or joint pain."
"For decades, the medical recommendation for patients with chronic fatigue syndrome was that they exercise, because it would improve their symptoms, but in many cases it ended up being counterproductive and worsened the condition of their disease, so doctors no longer advise it."
"The research I carried out shows that the difficulty of doing physical exercise is precisely one of the most common symptoms of Covid in the long term,” says Lambert. Some just don’t have the strength, says the scientist, while others suffer relapses of debilitating symptoms such as fatigue, brain fog or muscle pain. This worsening of symptoms even after minimal physical activity—sometimes called “post-exertional malaise” (PEM)—seems very common among long-Covid patients.
"In August, other scientists published an online survey of 3,762 people with long Covid and discovered that 89% manifested post-exercise discomfort."
""However, these exercise-induced problems do not stem from simply being “out of shape.” The effects “are totally different from the common, wild lack of training,” says Dr. David Systrom, an intensive care pulmonologist at Brigham and Women’s Hospital in Boston."
"Some doctors also point out similarities between patients with long Covid and those with chronic fatigue syndrome (also known as myalgic encephalomyelitis or ME/CFS) who suffer from severe exhaustion, cognitive and memory problems, and often muscle or joint pain."
"For decades, the medical recommendation for patients with chronic fatigue syndrome was that they exercise, because it would improve their symptoms, but in many cases it ended up being counterproductive and worsened the condition of their disease, so doctors no longer advise it."
rvallee
Senior Member (Voting Rights)
Uhhh, the fake BPS/psychosomatic/whatever research, duh, but there is still a lot of research that's currently being replicated and that research is definitely useful. It could have saved at least 1 year, 2 if medicine were a mature discipline. It can still be leveraged to cut time instead of waiting for it to be slowly replicated by random teams working in isolation.
But to do that it's necessary to differentiate the real research from the scam pseudoscience that's dominated, and that means calling it a scam, a sham, a failure, whatever. And since this junk research was supported 100% by all medical institutions and the real research was dismissed as a scam then it's massively embarrassing at a level that frankly medicine has never managed to admit having made mistakes. And that's the real obstacle: ego. It's not technical, not even financial. It's strictly about people with huge egos, in a profession where egos are counterproductive, having to admit having been 100% wrong for a long time.
This has to be said. The passive voice is not enough. Like that "not repeating mistakes" we hear often and is never, ever, accompanied by a clear assertion that that mistake must be fixed. No one ever suggests fixing that ongoing mistake, just not to repeat it, which is the guaranteed outcome as long as the mistake isn't fixed, because those aren't two related issues, they are the exact same issue.
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