Anyone Found Help/Explanation for Long Covid Neurological Symptoms?

@julieilic This is a grossly irresponsible, inaccurate article. The author ignores all medical research and essentially provides a non-medical opinion based on opinion not medical facts. Sick Times' cofounder and executive editor, Miles W. Griffis, did provide a rebuttal pointing out that this article leads to gaslighting and dismissal of people with Long COVID by doctors, therapists, researchers, colleagues, and friends and family.

And btw one of the theory’s someone wrote in this article is the only thing that comes close to making sense to a debilitating condition that my neurologist is trying to help me with. So please. instead of this slamming post consider there may be an idea for some direction for me.

You are grossly inappropriate there was actually one particular theory (concept) in article that makes sense to look at from r my debilitating condition ..which you have no idea .,.make sense to what I am experiencing.
So calm down

@onpainsufferer I agree that the article is substandard and irresponsible and it reinforces inaccuracies. Just about every day, I'm asked, "Are you feeling better yet? You shouldn't just lay around. Go get some exercise." And this is from friends who I expect more from. Even my PCP says things like, "You're just getting old. Maybe you should join a gym." His nurse said she'd never heard of long covid before I came in.

On a more positive note, I wanted to point out the latest news on the Health Rising website about long covid and ME/CFS research, "Major Study Validates a Long COVID Autoimmune Subset". Also, the ScienceDirect website has this article from Cell Reports Medicine ("Transfer of IgG from long COVID patients induces symptomology in mice").

My grandson will be 20 years old the end of September.
He has had Long COVID for over five years and hasn’t been able to attend school. He sleeps much of the time. When he tries to eat in the evening, he often ends up vomiting. He has developed Kleine Leven Syndrome, which is not well understood. There is another young man in Japan who is going through much of the same symptoms. Since it so uncommon, research may not be profitable enough to pursue a cure. Where do we turn?

@onpainsufferer
Yes I was thinking of posting a link to this wired.com story (as I did for a previous one), but it's both very lengthy and a bit suspect in its premise, as the strikingly numerous and often very angry comments by its readers on the site demonstrate, some of whom are apparently going to cancel their subscriptions.
It seems to be extolling a "mind/body" approach to LC, which to many people is redolent of calling it psychosomatic (which might not be quite fair), so it pushed a lot of buttons in a patient population for whom the medical establishment has often failed to take seriously.
It was written by a professor of theology, not somebody with any particular medical qualifications, so that seems an odd choice for a magazine with a tech-savvy and, by extension, somewhat science-savvy readership.
In fairness to the author, he does respond to a lot of the comments. Part of his premise, too, is that there is what might be called a conspiracy of sorts against the positing of a non-biochemical cause for this syndrome, which might be a bit overblown.
Some people do indeed respond well to this neuroplasiticity-based "brain-retraining", apparently, but then people seem to respond to a myriad of treatments, as perhaps befits a syndrome(s) that presents with such a wide assortment of symptoms.
I, myself, am truly at a loss as to what I would suggest for anyone. I'm just hoping that I experience a repeat of what occurred some forty years ago when I was felled by CFS/ME which lasted for two years and then just mysteriously faded away. I'm coming up on two years in about a month, and my symptoms--just chronic fatigue, thankfully--feel identical.
Crazy that more progress hadn't been made over the intervening decades, isn't it?
The mystery of it certainly persists.

I am of the opinion that whatever might work and is not harmful, is okay. My blood work from 4 years ago was crazy. My blood work now is different. All this to say, there is few if any evidence based recommendations for LC because the powers that be, are still trying to figure out what the hell is going on inside people like us, with this (I consider) autoimmune disease. So, read what you want from anyone, watch people on YouTube, listen to the suggestions on this site, but remember that all of us are trying just about anything to get better. I have not read the article in question. I do know that sometimes, holistic, alternative medicine can help and I also know that sometimes the doctors get it wrong...sometimes they get it right. This is such a strange disease that we are all grasping at ways to get better.

@julieilic finished? I had reposted because I thought my post didn’t get posted.

If my previous response offended anyone, I apologized that was not my intent. Nor was it meant to minimize @julieilic’s post. I was trying to focus on scientific, data driven analysis on Post Acute Covid Syndrome (Long Covid) research and analysis. Like many of you, I deal with dozens of doctors that don’t understand Long Covid and have lost much over recent years (friends, family, job) because too many don’t believe Long Covid is a proven medical condition. While it took years, getting into Stanford this winter has come with medical explanations for my neuro-inflammation condition. They provided lots of research on my condition and a new understanding of how my body is attacking itself. From there, I’ve tried to identify all clinical trails, medical research and treatment protocols out there all around the world. Plus I’ve spoken with several on this forum with my type of LC that have made good recoveries. Through that I’ve learned that being your own advocate, educating others (including your doctors) and becoming a ‘patient’ patient is critical. I now track my heart rate 24x7 and use the Visible App to understand the most taxing activities (dressing, showering…) and am learning to pace myself each day.
Again, my criticism of the Wired app was the author’s lack of any scientific, fact based analysis. The research is out there, but without governments and medical societies emphasizing this growing epidemic we are left to help one another on forums like this. I hope no one on here feels alone we must support one another and find answers together.

Symptomatic.me, association for the treatment of neuroplastic symptoms
They have practitioners one of the physicians Dr. Rebecca Kennedy is specializes in long Covid and you may want to just look at the website. It's just a different approach right it's the mind-body neuroplastic mode
No one is suggesting that the symptoms aren't real and that long Covid or isn't real but it's this they think that it can be treated with the same neuroplastic treatment tools that people have chronic pain can use to reduce or actually totally cure from long Covid.