Research underway related to Long Covid

rvallee

rvallee

Senior Member (Voting Rights)
https://clinicaltrials.ucsf.edu/trial/NCT04362150

LIINC is a study of volunteers who were previously infected with SARS-CoV-2 (also known as novel coronavirus or COVID-19) who have recovered from acute infection. The study is designed to provide a specimen bank of samples with carefully characterized clinical data. LIINC specimens will be used to examine multiple questions involving the virologic, immunologic, and host factors involved in COVID-19, with a focus on understanding variability in the long-term immune response between individuals.
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LIINC is an observational, prospective study of individuals previously infected with SARS-CoV-2 who have recovered from acute illness. The overall objective of the study is to investigate the clinical consequences of SARS-CoV-2 infection. These include the pre-existence and development of medical conditions, measures of immune activation and inflammation, changes in immunologic function, and variability in host responses. There will be a specific focus on demographic differences including age, gender, and race.

Enrolled volunteers are seen at San Francisco General Hospital at baseline, monthly for 3 months and then every 3 months for up to 2 years. Visits include a detailed interview, saliva collection, and a blood draw. Baseline visits take approximately 90 minutes, and follow up visits take approximately 20-40 minutes. No personal identifiers are used for specimen bank samples.
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Was alerted to this study by this article: https://www.mercurynews.com/2020/06/27/living-with-covid-19-when-it-wont-go-away/.

Living with COVID-19 when it won’t go away

While the majority of patients with mild or moderate symptoms recover promptly, new research confirms that others suffer from a lingering cluster of symptoms — possibly caused by a battle-weary immune system.

The UC San Francisco-led investigation, which is recruiting patients from around the Bay Area, will help the growing ranks of survivors who are now returning to work and yet worry about what the future holds.
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COVID-19 is not unique in the pathogen world; other viral or bacterial infections are known to cause long-lasting symptoms, noted UCSF’s Dr. Jeffrey Martin, a LIINC co-principal investigator. It can take weeks to fully recover from the flu. The Zika virus may trigger the enduring numbness and paralysis of Guillain-Barre syndrome. The bacteria Helicobacter pylori can cause irritable bowel syndrome that lasts for weeks to months. The devastating Chronic Fatigue Syndrome is now linked to some type of pathogenic attack.

To learn more, UCSF scientists have already banked thousands of vials of immune cells, plasma serum and saliva specimens. Samples from this precious repository have been shared with 12 different research teams.
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The LIINC study seeks to answer three key questions: How common are these persistent symptoms, and when do they recede? What are the characteristics of these patients’ immune systems? Finally, do survivors develop new infections, or other problems, later on?

So far, it has found a discrete pattern of symptoms, which wax and wane, according to infectious disease expert Dr. Michael Peluso of the LIINC study. Some patients report “brain fog,” struggling with concentration and memory. Others suffer from severe gastrointestinal symptoms with a month or more of diarrhea, nausea and substantial weight loss. Still others complain of intermittent bone pain. Many describe loss of smell and taste — and a phantom fragrance of fire or stale cigarettes.
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The symptoms don’t appear to strike just a certain type of person, said Peluso. There’s no clear age or sex distribution. They don’t affect just the hospitalized, old or frail.

“We have people who were world-class athletes who are really incapacitated now compared to what they were before COVID,” said Peluso.
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The Long-term Impact of Infection With Novel Coronavirus (COVID-19) research project is a study of volunteers who were previously infected with the COVID-19 virus who have recovered from acute infection. It is designed to provide a specimen bank of blood and saliva samples with carefully characterized clinical data. The specimens will be used to examine multiple questions involving the virologic, immunologic, and host factors involved in COVID-19, with a focus on understanding variability in the long-term immune response between individuals.
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Participate in the COVID-19 Brain Study—a global study of how the virus affects cognition

COVID-19 may have direct and indirect effects on the brain. If you have been diagnosed with COVID-19, help world-renowned neuroscientists discover its effects on cognition by signing up for this important global study.
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https://www.cambridgebrainsciences.com/studies/covid-brain-study

As COVID-19 spreads across the globe, there has been little time to understand the neurological impact of infection. That's why with your support, neuroscientists at Western University and The University of Toronto hope to gather enough data to answer pressing questions about the direct and indirect effects of the disease on the brain. There is emerging evidence that COVID-19 can increase the risk of strokes (either symptomatic or silent) in some cases, and the disease has resulted in an unprecedented spike in intensive care unit admissions, which is known to have cognitive effects. Whether you have visited a hospital, have felt sick at home, or had no symptoms at all, if you have been diagnosed with COVID-19, researchers would like to hear from you.

There have been worldwide efforts to fight the spread of disease, improve diagnosis, and discover new treatments, but little attention has been paid to the impact on those who survive and recover. With your help, we can answer key questions about this novel virus. Does it result in cognitive impairment? Is the burden different for those requiring hospitalization compared to those who can stay home? Are there age, sex, and medical risk factors that predict the virus's effects on the brain? The answers to these questions will contribute to the global effort to fight COVID-19 and help others who have been infected.
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Cambridge Brain Sciences is a leading provider of online brain health services for researchers and healthcare practitioners based on the pioneering work of our chief scientific officer, renowned neuroscientist and Canada Excellence Research Chair in Cognitive Neuroscience and Imaging, Dr. Adrian Owen. Our assessments of brain function and brain health have been taken millions of times and used in over 300 studies published in leading academic journals over the last 25 years.
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I was alerted to this study from this article:

'This is going to produce cognitive deficits': Famed neuroscientist Adrian Owen launches COVID-19 brain study

https://nationalpost.com/news/this-...ist-adrian-owen-launched-covid-19-brain-study.

Normally, Adrian Owen would be inside an ICU these days, trying to read the minds of people with severely injured brains. Because of COVID-19, “I can’t do that right now. I haven’t been able to do that for three or four months. I have a whole team of people sitting in my lab, unable to directly assess patients,” said the renowned Western University neuroscientist who has devoted much of his career searching for signs of consciousness and awareness in unresponsive patients.

But then the crisis started escalating; reports starting to come in of people suffering neurological consequences, and it became apparent to Owen about six or eight weeks ago “that if we’re ever going to understand this, this is something we need to do, now.”
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The online COVID-19 Brain Study aims to recruit 50,000 people with a confirmed, positive diagnosis of the virus. Using questionnaires and pop down menus, Owen and his collaborators will collect information, “completely anonymized and secure,” asking participants about their medical history, any underlying heart, lung or other health issues, the extent of their COVID-19 diagnosis and what happened to them.
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They’ll be asked to perform cognitive games that assess memory, decision-making, planning and problem solving, and results will be compared against a huge database of millions of tests completed by a healthy, normal population.
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For the study, Owen has partnered with Sunnybrook Hospital stroke neurologist Dr. Rick Swartz. They’re hoping for a large and diverse group (the study is available in English, French and Spanish). They hope that with 50,000 people they’ll have enough statistical power to tease apart “all of these little nuances,” Owen said, and answer questions like, are there certain proportions of the population that are more vulnerable to developing cognitive deficits — fuzzy thinking, brain fog, problems concentrating? Are there differences between men and women? Older people and young? Is it only people who were placed on ventilators? Is this something happening to everybody?
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This looks to be international so anyone who had COVID-19 should be able to participate.
 
Denise said:
I wish the participants didn't have to go "to" the site every 3 months but rather that the blood draw, saliva collection, other was done at their homes.
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I think they don't quite expect the patients to be as disabled as the worse ones will be. Hopefully they listen and I'm not sure how to work around that, it would be very expensive, but the connection between physically disabling symptoms and cognitive symptoms is something they will have to discover on their own. Or miss out entirely.

The interview with the lead researcher gives me hope they will listen. We'll see.
 
strategist said:
Yes, and how much of this pattern is patients feeling better, trying to increase activity and then relapsing soon after?
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Honestly, exertion causing relapses may be the most talked-about topic in the community. No doubt this will light up in patient reports. At least on the COVID19Positive subreddit, which has waned a little, I think most people have moved on to the forums on Facebook and some Slack groups too.

But I see the same wherever I look, most news articles that have patient testimonies report the same. PEM is a major part of post-COVID-19, independent of lung damage, oxygen saturation or observed organ damage like blood clots. Whatever PEM is, we're gonna find out.
 
I want to believe that those with long-term symptoms after acute COVID19 fully recover.
If they do not, I hope the world puts appropriate resources and thought (with full participation of stakeholders) into fulling revamping disability assistance programs. (Goodness knows we have all waited long enough to be seen .)
 
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Thanks for posting all this @rvallee and for your input on the other thread as well. I’m not well enough atm to be able to read and absorb all the studies / research going on Into Covid 19 but it feels surreal because (and although it is extremely sad, that it had to happen because of a pandemic), we have so many researchers suddenly studying post Covid syndrome, the fatigue, the neurological problems, and I’m sure the PEM... All in real time. And so much of what we hoped for in terms of research , that I never thought would happen, is happening. I even have a bit of hope they may end up figuring out what ME is.
 
I'm so happy to just be doing something. I've never been good at the idle thing. Social media is amazing. I find most of those simply from maybe being on twitter too much. Maybe. And Google search and scholar alerts. That used to yield only have a few things per week, now it's several per day and likely to grow with time. There is a paradigm shift under way.
lunarainbows said:
I even have a bit of hope they may end up figuring out what ME is.
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At the very least I expect a massive change within medicine that will be beneficial to us until we find a cure or treatment. The picture of COVID-19 is emerging as mostly neurological and autonomic symptoms, regardless of threat to life. It was noted in other research that a solid majority (70% I think) of patients presenting with textbook respiratory distress also have high rates of neurological symptoms.

Those symptoms are basically a cocktail of all the MUS/FND nonsense. The conversion disorder ideology is now an obstacle to dealing with the pandemic, as far too many cases are being missed because neurological and ANS symptoms are dismissed as not fitting the initial anchor of a cough with shortness of breath.

It is impossible to keep both. Either the entire ideology of conversion disorder takes a back seat for a while (from which it will never return) or we get this pandemic under control. They are mutually exclusive. It's just a matter of time before that realization sets in.

Absolutely nothing of value will be lost from this and no one will be sad about it other than the quacks. So a win-win. Ideally anyone involved in this should be kicked out of medicine for being too incompetent but whatever, one thing at a time. As long as they stop hurting people and those willing and able to help can actually have resources, we'll be better off.
 
Denise said:
I want to believe that those with long-term symptoms after acute COVID19 fully recover.
If they do not, I hope the world puts appropriate resources and thought (with full participation of stakeholders) into fulling revamping disability assistance programs. (Goodness knows we have all waited long enough to be seen .)
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The beauty of this is that those who recover will be their own control.

In sharp contrast to that study posted this week that called us stupid because we have cognitive impairment. Without pre-illness tests, there is no comparison to make, it's impossible to compare how one's cognitive performance has declined without the exact same battery of tests having been done in advance.

But now this population will feature lots of people who will struggle on those tests and improve to normal over weeks and months, while others don't, highlighting just how significant this impairment is.

What I like is the sense of urgency, that time is critical if we are to properly assess this. Good thinking. And this is likely just the beginning. I am so ready for so much science I can't even skim most of it.

Let's science the crap out of this problem. Finally.
 
It seems reasonable to assess psychosocial conditions arising from the illness. It is only when it is suggested that psychosocial factors are the cause of the perpetuation of symptoms that we should worry. Or have I been misunderstanding something?
 
https://www.nbcnews.com/health/heal...-aren-t-getting-better-major-medical-n1231281

One theory is that the inflammation triggered by COVID-19 damages the autonomic nervous system, which affects functions we don't consciously think about, such as digestion, sweating, sleep, heart rate and blood pressure.

Dr. Mitchell Miglis, a neurologist at Stanford University, ascribes to this theory. He said it appears that for some people, "the body is still damaged" even when the virus is long gone.
 
chrisb said:
It seems reasonable to assess psychosocial conditions arising from the illness. It is only when it is suggested that psychosocial factors are the cause of the perpetuation of symptoms that we should worry. Or have I been misunderstanding something?
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I have zero issues with competent use of psychosocial factors, as long as the arrow of causality is correct. The consequences are devastating. It's the lunatics pushing for causal factors that are the problem, not the concept itself.

Although I have yet to see competent application with proper direction of causality so I'm reasonably skeptical. There's always a first.
 
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