As cool as it is that we have AI that produces videos of woolly mammoths walking across Jupiter, I’d much rather have one specifically focused on healthcare. You just upload every medical record you have, and it analyzes images, cross references across every publication, etc and

“People who have developed their Long COVID symptoms in the past still deserve answers. They’ve become forgotten to many people.” —Dr. Marty Makary

What I liked from RFK’s Long COVID round table: The NIH actually admitted that all the money spent on Long COVID research was completely wasted and we have nothing to show for it. After several TLC RECOVER meetings, they never admitted that once. They also legitimized the disease

There’s absolutely something about seasonality affecting symptoms, not just temperature. 80 degrees in the fall just doesn’t have the same symptoms as 80 degrees in the summer. I don’t know if it’s atmospheric pressure or what

- RFK asked about mold (great!), Putrino & Patterson noted mold toxicity as something they're seeing, Redfield talked about it as a mast cell/allergic phenomenon (it's not), so that has to be fixed - but good to know it's on their minds at least

Visual representation of how I was improving when I went into partial remission. I would feel much better in the summer, but I felt all of the healing/improvement came from the winter periods.

We have such a major problem with housing in this country. Not just availability, but cleanliness/maintenance/safe building materials. This is absolutely disgusting, and should be criminal to sell to someone to live in.

I see everyone complaining about a lack of oxygen to their brain and their brain suffocating. I sympathize very much, that’s my worst symptom. But this viral persistence stuff…. You’ve had infections before, and the viral count of active infections are 1,000X higher. Did you

Scott Daniska Yup. There are Tour de France riders completing stages with active COVID infections. If it’s viral persistence it’s something gone awry. I never had unrefreshing sleep with a viral infection either.

Reminder: All active and planned Long COVID clinical trials specifically exclude non-COVID ME/CFS, and do not even have non-COVID ME/CFS patients as a control group (which would be a very small cost). So if any Long COVID treatments are approved, people with ME/CFS will have no

When patients say, "We need the researchers to listen to us", that doesn't mean just physically hear them. It means actually consider what they have to say and adjust your work accordingly. Just hearing someone's voice and then ignoring them and go on doing what you were

Antivirals and mAbs aren’t going to cure the majority of people with ME/CFS. Our researchers, esp Michael Peluso and Polybio, aren’t ready to accept that.

The ME Mafia is HIJACKING Long Covid research!!!!!

An expert is a person with a high degree of knowledge in a particular area. We have immunology experts, virology experts, and neurology experts. However, the number of ME/CFS and Long COVID experts currently in existence is zero. We have no biomarkers, no treatments, and no one

Well, get ready to have your feed blown up with Tylenol vs autism debates for the next few months.

I made a BINGO card for the next ME/CFS webinar if anyone would like to play

Year 8 MECFS has me missing year 4 MECFS SOOOOOO much. Every year has been the toughest year of my life. Words will never be able to describe how horrible this disease is.

I always read labels for all food/hygiene products I buy. Obviously the less synthetic stuff the better. However my deal breakers that I won’t ever touch are: -Phenoxyethanol -Titanium Dioxide -Aspartame -Sodium Lauryl Sulfate -Hydrogen Peroxide As long I avoid those

I keep thinking how disingenuous it is to tell people living w/ depression or severe chronic physical illness to turn to friends and family for support when, for the most part, friends and family have no interest in being there for people experiencing extended suffering.

Scott Daniska Can’t share data on those just yet, requires extra analysis steps, so will be later this year, but it’s on the list for sure