A Family Case Report and an NIH Study
On May 17th, 2022, about 18 months post the start of the Covid vaccine roll-out in the U.S., the National Institute of Neurological Disorders and Stroke published a pre-print of a study entitled Neuropathic symptoms with SARS-CoV-2 vaccination. They write in the study’s conclusions that, “this observational study suggests that a variety of neuropathic symptoms may manifest after SARS-CoV-2 vaccinations and in some patients might be an immune-mediated process.” Many others, including friends and family members reported similar symptoms over a year ago, some of which resolved and others which have remained debilitating for them. The only two things in common between a wild-type infection and Covid vaccination is 1) spike protein and 2) immune reaction to spike protein, so the NIH’s conclusion isn’t exactly rocket science, but it is helpful in terms of gaining a degree of acknowledgement for people suffering such injuries.
We live in a progressive city that believes in science and “follows the science.” In contrast to most of the country, 97% of our 5+ population is vaccinated for Covid-19. Yet 10% never went back for a second dose. Why not? How many people had already recovered from Covid and ‘following the science’ from other countries only took a single dose 6–12 months afterwards? How many suffered a Covid infection following a single dose and relying on their hybrid immunity as sufficient protection from severe disease (e.g. still 91% protective against severe disease in under 50s as of July 2022 including in those with immunity from prior infection only), never took the second dose or even the first?
In contrast to the conclusions of a European study, the results indicate that up to 5% of autoimmune patients experience an aggravation or relapse in symptoms after Covid-19 vaccination. Other studies report flares in autoimmune patients after vaccination as high as 10% that require treatment. The subjective experience of patients who directly experience this effect on their health with recommendations to be repeated every six months may be different than the messaging and conclusions put forth by the study authors which amounted to interpretations along the lines of, “Don’t worry. It’s not a big deal.” Higher rates of autoimmune flares post-vaccination were associated with having had prior Covid infection. Given protectiveness of prior infection against severe disease if/when re-infected, how many people with underlying autoimmunity, diagnosed or not reasonably never went back for their second dose?
The NIH-funded study reports that participants with long-standing post vaccination symptoms who received treatment (oral corticosteroids or intravenous immunoglobulin) had complete or near complete resolution of symptoms within two weeks. Follow-up interviews with the participants (see below), however, including injured doctors who participated in the study report that most if not all of the injured patients have not actually recovered, that their symptoms returned after the two-week period, and that despite tracking their data beyond the initial two weeks, NIH scientists did not include their full dataset in the pre-print, misrepresenting their recovery status.
Participants report that much like many long Covid patients, they are still in dire need of care and continued research for treatments to help them. As with autoimmune patients, particularly in those with evidence of prior infection, many long Covid patients who were subsequently vaccinated report a worsening of their symptoms with vaccination. Conversely, some Covid-vaccine injured patients report a worsening and regression of their symptoms after contracting Covid. It seems to be the same underlying mechanism in either case — an immune-mediated response to spike protein.
Participants who helped the NIH recruit for the study report that they’ve had thousands of injured patients interested in the study but only a small sample of 23 were chosen by NIH scientists to participate. Unfortunately, they also report that the NIH has ended communication with them and is no longer responsive to their needs. Full interviews with two of the study participants, a former (now disabled) pre-school teacher and a retired internist and gastroenterologist can be viewed below. Both reference lack of long-term responsiveness to NIH treatments during the study and at least moderate to substantial reduction of symptoms with alternative treatment protocols promoted as therapies by MDs collaborating to try to help them. Some successes in reducing symptoms include the use of low dose naltrexone, curcumin, IV Vit C, low-inflammation anti-histamine diets among a number of other attempted treatment options.
Thankfully, in contrast to the loss of follow-up care by NIH scientists, researchers at Yale University have picked up the ball where it was dropped. Dr. Harlan Krumholz, a cardiologist, research scientist and Professor of Medicine at Yale School of Medicine, the founder and Director of the Yale New Haven Hospital Center for Outcomes Research and Evaluation, has put together a team of researchers to study any aspect of long Covid as well as syndromes after Covid-19 vaccination, sometimes referred to as ‘long Covid vaccine’ through the Yale LISTEN Study. If you or someone you know is interested in enrolling in the study, you can register on Kindred’s website to join. A webinar with Dr. Harlan Krumholz put together by some of the participants in the NIH study and others, with further information about the Yale LISTEN Study can also be viewed here.
