Hi Mastodon!

I'm currently working on 4 big Long Covid & ME/CFS surveys. Which one interests you the most? See following posts for descriptions of Surveys 3 & 4.

Survey 1
Covid & Long Covid prevention: nasal sprays, probiotics, antivirals, & non-pharmacological measures that may ⬇️ infection or severity of/ progression to LC.

Survey 2
Anticoagulants/Anti-platelets (including aspirin) in LC & ME: symptoms improved, rebound, etc. Compare those on triple therapy to those on monotherapy & aspirin

Covid/LC prevention (nasal sprays, probiotics etc)
36.7%
ME/CFS treatments
39.4%
Symptoms efficacy w/ HBOT, VNS, craniosacral, etc
5%
LC&ME:Anticoagulants/Antiplatelet/aspirin efficacy
18.9%
Poll ended at .

Survey 3: ME/CFS

Introductory survey on ME/CFS supplements & other treatments, drawing from those who have reported what's worked the best for them or that they have wanted to try. Which symptoms improved & how much, what side effects, etc.

Survey 4: ME & LC
Investigates the top non-pharmacological measures from previous survey (vagal nerve stimulators, HBOT, craniosacral therapy, etc). Which symptoms did they help or hurt? May include sections for other post-viral illnesses if interest.

@LongCovidPharmD

For the ME/CFS one it would be very helpful to stratify the patients to get useful results.

ME/CFS is an umbrella diagnosis. There is enough variation that what works for one group of patients may be harmful to others.

Those who have mostly mitochondrial issues may respond well to an energy stimulant like DRibose while others (like myself) may cause damaging crash of biological systems including crashing immune system.

See stratifying for research: https://me-international.org/cohort-stratification/

Cohort Stratification – ME International

@ColleenSteckel @LongCovidPharmD

"D-Ribose Induces Cellular Protein Glycation and Impairs Mouse Spatial Cognition"

https://doi.org/10.1371/journal.pone.0024623

#supplements #D-ribose
#glycation #AGEs #inflammation

D-Ribose Induces Cellular Protein Glycation and Impairs Mouse Spatial Cognition

Background D-Ribose, an important reducing monosaccharide, is highly active in the glycation of proteins, and results in the rapid production of advanced glycation end products (AGEs) in vitro. However, whether D-ribose participates in glycation and leads to production of AGEs in vivo still requires investigation. Methodology/Principal Findings Here we treated cultured cells and mice with D-ribose and D-glucose to compare ribosylation and glucosylation for production of AGEs. Treatment with D-ribose decreased cell viability and induced more AGE accumulation in cells. C57BL/6J mice intraperitoneally injected with D-ribose for 30 days showed high blood levels of glycated proteins and AGEs. Administration of high doses D-ribose also accelerated AGE formation in the mouse brain and induced impairment of spatial learning and memory ability according to the performance in Morris water maze test. Conclusions/Significance These data demonstrate that D-ribose but not D-glucose reacts rapidly with proteins and produces significant amounts of AGEs in both cultured cells and the mouse brain, leading to accumulation of AGEs which may impair mouse spatial cognition.

@Rhyothemis @LongCovidPharmD I didn't tolerate D-Ribose. I know some with energy issues rely on it. That research makes the use of it concerning. (If my sleep deprived brain understood it correctly).

@ColleenSteckel @LongCovidPharmD

It is a bit concerning since AGEs are bad - & I have hesitated to try d-ribose for that reason. But they administered the d-ribose thru intraperitoneal injection, not oral consumption.
Galactose (milk sugar) is also given by intraperitoneal injection to model accelerated brain aging. But some recent studies show oral galactose ingestion behaves differently - so perhaps IP injection of D-ribose is also different from oral intake. IDK.

@Rhyothemis @LongCovidPharmD That is likely an important distinction but it would be good to know. I know some others who are similar to me with #MyalgicEncephalomyelitis don't tolerate DRibose well either.

We have research that shows we have TRPM channelopathy (gate in cell isn't opening right which interferes with cells function). I have wondered if that is why many stimulants make those of us with ME feel worse.

Maybe too much demand in a broken system.

@ColleenSteckel @LongCovidPharmD

This paper might be relevant - but then, maybe endogenous d-ribose behaves more like IP injected than oral.
https://doi.org/10.18632/aging.102089

Have you ever tried benfotiamine?
I have - didn't notice much. I've also tried hi dose thiamine Hcl - gave me a rash.

Another thing to consider is that d-ribose like most sugars is often manufactured thru fermentation of corn & one can be sensitive to either corn allergen or bacteria residue.

D-ribose is elevated in T1DM patients and can be involved in the onset of encephalopathy | Aging

Aging | doi:10.18632/aging.102089. Lexiang Yu, Yao Chen, Yong Xu, Tao He, Yan Wei, Rongqiao He