Research underway related to Long Covid

https://clinicaltrials.ucsf.edu/trial/NCT04362150

 

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

 

Hopefully the doctors involved in this will recognize ME/CFS when they see it.

Yes, and how much of this pattern is patients feeling better, trying to increase activity and then relapsing soon after?

 

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.

 

Participate in the COVID-19 Brain Study—a global study of how the virus affects cognition

https://www.cambridgebrainsciences.com/studies/covid-brain-study

 

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.

This looks to be international so anyone who had COVID-19 should be able to participate.

 

I am pretty sure this is the study mentioned in this post: https://www.s4me.info/threads/possibility-of-me-or-pvfs-after-covid-19.14074/page-30#post-269559.

Copying the video for convenience:

https://www.youtube.com/watch?v=gr5bh71RF4g

 

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.

 

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 .)

 

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.

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.

 

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.

 

requiring subjects to go to your lab is not ok.

 

https://www.liincstudy.org/en/in-the-news

 

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.

 

It depends on what they consider 'psychosocial conditions'.

 

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.

 

https://twitter.com/user/status/1283763315362103298


https://twitter.com/user/status/1283767601831829506