Thread by @mrzphd

Another glimpse into NIH RECOVER study. This also means more data for Yale LISTEN study as they use @hugohealth @kindred_health to gather medical records. I’m learning a lot about what is capturing effective data & what is missed. My case made researchers aware of gaps.#LongCOVID

2/ during the 6 minute walk test, they realize @NIH provided no space for notes or to identify gait. Within 3 minutes, they noticed me tipping, gait instability (when I noted vision and burning pain in my head and nausea). None of that is captured. Yet, exertion amplified neuro

3/ This has been common - she said it looked like a stroke. Exercise stress test said I looked like altitude sickness from high elevation mountain climbers. Both witnessed changes in speech. NIH data collection doesn’t allow for capturing these crucial puzzle pieces in their data

4/ I triggered the vision test last time, that was only comprised of single eye, eye chart. They told me I had 20/15 vision. That’s not my problem. No change in acuity. My vision presents like a TBI patient captured on computerized testing, lost peripheral vision, increased blind

5/ spot, problems with teaming, vergence, fixation, saccades, visual midline shift, and other major vision changes also. Yet, there is nowhere for @NIH RECOVER study to capture this crucial data. Instead, during analysis it will present as better than ideal vision, 20/15, with

6/ one eye at a time. When signals aren’t being transmitted normally from the brain to both eyes, it’s like a movie where mouth and sound are out of sync. It causes major problems with daily function. @NIH is missing important data for the vascular & neurological components

7/ Analysis of data is only as good as the data you collect. Here’s where it can become problematic: If only data is captured that ruled out underlying conditions, and fails to capture new neurological or vascular changes, it will appear #LongCOVID has no basis in biomarkers.

8/ for a novel condition, it is a major loss to fail to include a space for notes or data that emerges that did not exist at the time of the study design. There exist test that capture data, scalable options, from qEEG @wavimedical to @righteyeinsight that provide quantitative

9/ data that provide insights that are being lost in the absence of correct measurement, based in a lack of understanding mechanisms. This is why #TranslationalScience is so important to include #citizenscience, to fill in the gaps that science can’t see yet in #LongCOVID

10/ include a space for notes, for unexpected data that emerges, because without it, there is no chance to identify emerging patterns in data. They will be a massive lost opportunity for #LongCOVID advancement.

For those asking, I talked about more vision details here, and showed abnormalities in brain SPECT. I’ve learned a lot since this interview:



Yes, vision then verbal speech impact are both happening to people with post virus & vaccine.

#LongCOVID