I am seeking information on the recovery from COVID but for someone who's diagnosed as a "long hauler" with symptoms that affects the neurological system?

I, for one, will get back to care giving posts. Talking about the C vaccines is almost like talking about politics and religions. It won't change anyone's mind but might cause arguments among caregivers. I'm glad everyone is polite in this thread. Thank you for that.

Regarding clinical trials, if on 1, you can b “unbound” at any time.

My hubs went on Phase 3 summer 2020 Pfizer random population trials via Oschner & I went on J&J speciality population trial via Tulane Nov 2020; both in New Orleans. Both blind trials: so not told if you got real stuff or a placebo nor did any staff know. We pretty well surmised on our own hubs got the real juice as he had definite side effects after both shots; I had none so mine was a toss up. We both did regular online reporting of overall health, temp, O2%, exposure & in person blood draws. We both mask pretty often. Hubs office building was petri dish of exposures early on…. like every other week some elevators would be shut down for sanitizing… dz's hospitalized that we know well… so he had lots of known exposure filings. Hubs got a whopping $5 a week ACH after he submitted his weekly report; I got zero weekly. Abt $100 to start & $50 when intermittent blood work done. Not abt $.

Both Pfizer & J&J participants could AT ANY TIME request “unbinding” & this is in the consent form. You in writing, like via an email, send request over to local trial staff & in pretty short order get a document to E-sign & within 1-72 hrs get info on vaxx or placebo from the National or regional hub on your trial. It’s a match up of vial #’s, not names.

When 1st run of Pfizer & Moderna mRNAs became readily available 2/21, Hubs got a call from his contact person in trials Dept and in real time, while on the phone w/him did the email and became unbound and yep hub got Pfizer so was fully vaxxed & had been for months. He stayed on the study & getting round 3&4 vaxxes & blood work till this summer.
I had a bit more challenge in getting unbound as J&J wanted you to have an vaxx booked/scheduled & email that to the local staff and they forwarded to national study coordinator to get unbound, yada yada. & back then (seems like soooo sooo long ago now!) it was crazy to get an actual in-writing booking but there were couple of independent pharmacies that DNGAF as to criteria and would book, send a email confirm & do vaxx. I sent email & took like 4 days to get J&J trial statement that I got placebo. I got both Modernas; got a final blood draw & went off J&J trial last year.
Neither of us has had Covid & know this is accurate as the trial blood draws did specific testing (nucleocapsid) & Ig markers for type of Covid antibodies. Hubs mRNA degraded within 5 days of each vaxx and spike protein lasted 4 - 6 weeks. The mRNAs (Pfizer & Moderna) do not in any way change your DNA…. they degrade way too fast to ever do anything like that…. That is pure fear factor nonsense.

Since I vaxxed Moderna & then Pfizer, I’ll never get a J&J call back. Hubs may get a blood draw call 5 years from his first Pfizer vaxx, he’ll go.

Personally if at this point in time if you do not get vaxxed and do not have a documented legit health reason as to why a Covid vaxx is contraindicated, I’d like to see the life & health insurance companies to refuse to do coverage or pay out on policies. You get palliative care in your home, just too bad, so sad. The healthcare system in the US really cannot go thru another surge like what Delta did last year as folks with regular and accidental health care needs had to reschedule or wait or do without as the wards were full of unvaxxed Covid.

Igloo didn't say that adverse reactions were nonsense.

She said that the Tucker Carlson fear-mongering about spike proteins was nonsense.

As someone who works in public health, it is discouraging to see so many still wrapped up in the disinformation and outright paranoia of everything from the origin of the virus to the vaccines to the nefarious reasons that are supposed to be behind it all. Your friend needs a great deal of help now with physical care and a good rehab program. Joining a clinical trial might be a good option but recovery will, in all likelihood, take a good deal of time. It makes absolute sense that covid is causing neurological problems. Central nervous system damage as well as peripheral nervous system damage combined with immune system mayhem have been well established as effects of the virus. Some recover quickly and some not so much. You are such a fabulous friend to care for this person and his needs but sometimes it is best for other sources to share that responsibility. At the bare minimum in home rehab services sound worth a try. Good luck to you and your friend.

Gaeton, I just wanted to reassure you that you can NOT get polio from the polio vaccine in the United States. If you notice in the article you linked to, it states that the US is only using the killed version of the vaccine. The US DID use the live virus vaccine for a number of years but discontinued that many years ago. The case of the person referenced was a person from overseas who received the live polio virus vaccine and then came to the US. The spread of polio was then initiated to those who were not vaccinated at all. So, there are no worries for anyone receiving the vaccine in the US of getting polio from the vaccine. Could they still have a bad reaction to the vaccine itself? Yes, but it would be a one in a million event. And that reaction would not be of contracting polio.

There is little information on long covid, although now there are many studies being done.

The CDC has decided that long covid is the price people may have to pay for getting covid. It could be the next public health disaster. Since the majority of the population has decided that covid is over (and they have decided that it has been over for quite some time now), it's up to the individual to (attempt to) keep themselves safe. And if they don't/can't? Too bad.

First of all people who are vaccinated and boosted are still getting covid. So the CDC's stuoud statement that long covid is the price people have to pay for getting covid is one if the many stupid things they have been saying for two plus years.

Second if they really were all about the science then they would be studying what treatments those with long covid received. And if they were vaccinated before or after getting covid. Because maybe just maybe the treatnents and / or the vaccines are contributing to these long covid symptoms.

But the CDC and Fauci and the rest of them are not concerned about science. They are more concerned about getting a needle in the arms of every single living person on this planet from infant to old age. For a virus that has an over 98% survival rate. There is no science behind any of this.

And FYI the CDC also does not track the rate of flu infection correlating with flu vaccination either. Just something to think about.

You’re in Baltimore, right? I have 2 suggestions
- Do Google search as to Covid clinical trials at John Hopkins & try to enroll in one.
and
- get your friend into a gerontology group practice that is affiliated with JH Medical school or Univ of Maryland medical school. It would be the practice that runs the gerontology residency/fellowship programs and has MDs who are gerontologists who also see patients within their private practice but it’s schedule thru the department.

That you live in Balmer where there is not 1 but 2 medical schools within a bigger health science centers is beyond fortunate. It will take work to get him into a programs but once he is, it should place him into a “continuum and coordination of care” system.

Also He’s 65 so should be able to be on MediCARE as his primary health insurance if he is no longer has employer sponsored health insurance. Please please make sure he does the paperwork for enrolling in Medicare ((this is beyond important as if he doesn’t enroll (even if he suspends it as he still has employer coverage) he can have a permanent increase later enrolled fee)).

Long Covid is uncharted territory. I will say this, the “long Covid symptom” Twitter subgroup is good, but tends to be epidemiology & stats heavy. You may want to check it out if you ever have free time (lol). Has lots of folks informed on ME/CFS which seems to be the disease group closest to a match up of long Covid symptoms.

OP let us all know this person's vaccination status. It makes no sense that covid would be causing neurological issues. But it does make sense that the mrna vaccine could cause them.

My biggest issue is the media blackouts and big tech blackouts when it comes to this vaccine. Anything that goes against the narrative is shut down.

You only have to look at history to see that the government is not exactly on the up and up when it comes to the general population. From small pox contaminated blankets given to the Native Americans to the Tuskegee experiment and countless other examples. Many in the medical community were given a financial incentive to go along with this. It's called a perverse incentive and leads to all kinds of bad things. The truth will come out eventually. It always does.

Some research going on here is finding similarities between Long Covid and Chronic Fatigue Syndrome (which has been a bit of a mystery for some time). They are hoping that the research might help both!