Patterson recently posted preliminary pre-print da
Post# of 148250
https://www.researchsquare.com/article/rs-1344323/v1
It's interesting they showed pretty good improvement before versus after treatment on a few rating scales used for other things:
(1) cardiology/heart failure: NYHA scale, measures physical activity levels
(2) neurology/stroke: modified Rankin scale, measures disability levels / ability to perform common tasks and activities
(3) ME/CFS fatigue severity scale: measures subjective fatigue levels
(4) pulmonology: MRC dyspnea scale: measures trouble breathing (perceived breathlessness)
(5) autonomic: COMPASS - 31 item questionnaire on autonomic symptoms
and biomarkers which "improved" in correlation with treatment and symptom improvement.
He says that all patients in this case series improved after 6-12 weeks of therapy. They tested for liver dysfunction via LFTs q. 2 weeks while on maraviroc due to black box warning on liver toxicity, and chose a statin that did not break down via CYP3A4 system since maraviroc engages that system in the liver.
They say they plan to run a placebo controlled, blinded trial in the future. They also have been claiming they will publish *ALL* their data for 1200+ patients treated thus far. We'll see how good their claimed success rate is then, and how they are measuring these things.
BTW, doing all these rating scales, biomarkers, giving drugs off-label, and everything sure sounds like research, but it doesn't seem like these patients gave informed consent. Will see if anyone at a journal picks up on this and publishes or not.
I sure hope FDA and CYDY come up with some good endpoints (any of the above commonly used rating scales?) for our leronlimab trial for long haulers pretty soon. It has been a really long time, and patients are chomping at the bit. Not to mention us poor shareholders.