Johns Hopkins Long COVID survey

I was given the link from another of us on here @klf58 and I also greatly appreciated the opportunity to take it. You are so welcome. I, like you, believe that the more we can provide what our symptoms and experiences have been, the better we may be and/or the next generation as I know that a lot of children have this as well. I woke up this morning feeling as if my head was about 6 inches thick all over. I am doing my graduate internship, which as you can imagine is touch and go, day by day. My thoughts always go to "how am I going to support myself, when I feel so bad." I admire your strength and all the others on here and around the world that have this. It is so difficult, not just physically but the emotional toll is as well. My hope is that Johns Hopkins will continue to reach out to us. It seemed like they wanted to get an email. That you for the message Donnie, @donnie46
Ginny

@gnana6 I suggest maybe contact them and let them know that you want to be contacted.

Good morning or day, wherever you are. Yes, I shared the Hopkins LC study link, as I hope research will make a difference, if not to us, then to others. I am in the midst of a cross country move for a new job and exhausted from packing and long days of travel, all of which I previously would have done with ease, but now just causes more fatigue. I already live with chronic pain, but it was easier before covid. I know we are all doing the best we can. I just wish there were help for us now. After six years, I don't feel hopeful anymore. LC has really made my mental health issues worse. It's all so hard. Hang in there, everyone. It helps to have this space to remember we are not alone in our suffering. That in itself is a gift, so thank you all for sharing, encouraging, and posting.

I’ve had head pressure for 3 years. Feels also like a band around my head. Is there sang hope for it

Wondering just what is Long COVID?
After having COVID before vaccinations and symptoms have continued? Or having COVID and recover but autoimmune or other symptoms occur after vaccinations?
Thank you.

That is one of my main complaints with LC-I have to lay down with a cold pack on my forehead after I take a Tylenol . .It comes and goes.

I wonder if there is a med for it somewhere

@abd It is my belief after 4 years, that it is an autoimmune disease from the COVID-19 virus. There are those of us who did not get vaccinated and had COVID-19 and there are those that had the vaccines and still got Long COVID. There are so many different symptoms. Most mimic other things like POTS, chronic fatigue, tinnitus, brain fog, arthritis, Lupus, Epstein Barr is reactivated in some, joint and muscle pain, GI issues, depression, anxiety, rashes, vision issues, no taste or smell...the list is long. The research is ongoing. If you go to the CDC or NIH website you can read about it. It is considered a disability. The research is saying that the virus inside T-cells, causes our bodies immune system to actually fight itself. Usually people that have long Covid, had COVID-19 and then got sick with LC several months later.

@diverdown1
Thank you.
I had COVID just a couple of months before the vaccinations were available. I had first vaccination after a 90 day period. I felt fully recovered until my issues now.
Guess my wondering was if long term meant “continued”. Seems many relatives have asked if I thought this PMR was long term COVID and has been at the back of my mind but knew my COVID was bad but recovered quite well.
I will check out the website-appreciate.

@djg3012 Along with my head pressure I cannot taste food some of it barely