Irina

Privacy enthusiast with legal background, Long Hauler

[🕸️Dr.T, PhD @chydorina]

This is THE 'to-read' paper if you want to understand the physiological basis behind PEM from activity (Scheibenbogen is one of the authors).

PEM (post-exertional malaise) is a confusing concept for patients but it is not a black box. We do know a lot about what is going on and we definitely know enough to say this this process should not be triggered and this needs to be a priority.

The summary

ACTIVITY LEADS TO:
1. The accumulation of lactate, ROS, and the deprivation of cellular energy sources.

This occurs every time we hit 'go' and perform an activity. If we dont have the juice to complete this activity safely - we get into a cycle where metabolic demand continues to increase and exercise capacity keeps declining. If we keep going and going this cycle get worse and ROS starts damaging the mitochondria.

Practically this means that all future activities would take WAY more energy than they would previously if done at a pre-PEM baseline. The activity at the beginning would use normalish amounts of energy and produce normalish amounts of lactate/ROS etc. just as long as kept under the threshold but further activities would use WAY MORE ENERGY and produce MORE ROS and lactate than they should.

2. The DELAYED EFFECTS which include symptoms getting worse are due to triggering "immunometabolic downstream effects".

This means that the above changes have far reaching consequences on OTHER SYSTEMS FUNCTIONS. Those damaged mitochondria start to effect other basic functions like our immune function and our metabolic function.

3. In a final nail in the coffin the "immunometabolic dysfunction" then triggers problems with ionic imbalance (electrolytes) and triggers more muscle activation, mitochondrial damage, and immune responses.

4. Exceeding already reduced activity capacities enters affected patients into a recurrent and self-propagating loop.

Saying we dont understand PEM and that it is a black box is wrong. We understand a lot. We dont need more information to know that this process should NOT be triggered.

Please read paper.

Towards an understanding of physical activity-induced post-exertional malaise: Insights into microvascular alterations and immunometabolic interactions in post-COVID condition and myalgic encephalomyelitis/chronic fatigue syndrome (2024)

https://t.co/KvvAbCCVaD

[Irina @Irlolos]

@DafoeWhitney So happy for you!!!

[Irina @Irlolos]

@VladVexler Hugs Vlad 🫂 so sorry it’s so tough for you.

[Irina @Irlolos]

@patientled Why just 24 months?

[Irina @Irlolos]

@jemilysmunchies I react do drops in sugar with shaking, and I always reacted, but it got to next level with LC. Metformin helps to regulate blood sugar and shaking mostly stopped since I started on it. I’ve got similar shakes from caffeine, so had to switch to decaf tea.

[Irina @Irlolos]

@pamelarbishop @bhanlon15 So sorry to hear:( there’s Celebrex as a possibility (there’s research that it + Valtrex helps with EBV, but it’s an anti inflammatory in its own right). Could it be a new autoimmune condition? Maybe if so, you could get IVIG.

[Irina @Irlolos]

@VladVexler @bhanlon15 Shoot! So sorry to hear that. I had 2 similar PEM symptoms: air hunger + throat tightness. They gradually went away after I started IVIG. I also take Sulodexide (available in Russia). I was also breathing oxygen in a mHBOT until recently. Also SGB could potentially help.

[Bateman Horne Center @BatemanHorne]

🌟 The ME/CFS Crash Survival Guide has helped thousands navigate PEM crashes with prep tips, pacing tools & more.

🔋 Download: https://t.co/EY4qA9kGxD
💙 Support more resources: https://t.co/t7QfkK6Cdc
@OpenMedF #MERC #MECFS #PEM

[Irina @Irlolos]

@SamRNolen At some point I took binders when I woke up at night, say, at 3am, that way they were far enough away from both my morning and evening meds. Now I sleep better and that doesn’t work anymore.

[Seth Bannon @sethbannon]

1/ GOODBYE ANIMAL TESTING

Big news from the FDA: They're starting to phase out animal testing requirements for monoclonal antibodies and other biologics.

HUGE DEAL for science, ethics, and innovation.

[Irina @Irlolos]

@useless_priest I’m in the US, but I know that the specimen is very stable, so it’ll be ok for a long time while going through customs etc. It’s been a very useful test for me, and they have discounts for long covid.

[Tucker Carlson @TuckerCarlson]

Dr. Patrick Soon-Shiong is a surgeon who made billions inventing cancer drugs. He says that Covid, and the vaccines that didn’t stop it, are likely causing a global epidemic of terrifyingly aggressive cancers.

(0:00) Why Are Cancer Rates Rising in Young People?
(6:16) What Is Causing This Cancer Epidemic?
(14:52) Is There a Connection Between Covid and Cancer?
(25:33) Why Dr. Soon-Shiong Never Got Covid
(39:36) How Big Pharma Tried to Undermine Dr. Soon-Shiong
(47:35) Dr. Soon-Shiong’s Analysis of RFK Jr.
(1:02:47) The Healthcare Industry’s Conflict of Interest
(1:05:51) How to Strengthen Your Immune System
(1:10:32) What Your Doctor Won’t Tell You About How to Fight Cancer
(1:20:58) Why Hasn’t Anyone Faced Consequences for These Crimes?
(1:33:59) Why Dr. Soon-Shiong Bought the LA Times

Includes paid partnerships.

[Patient-Led Research Collaborative @patientled]

This week for #LongCovidAwarenessDay, we’ve compiled a fact sheet of up-to-date statistics & citations on Long COVID.

Data is one of the most useful tools to strengthen understanding of #LongCovid. We hope this resource helps our community's fight.🩵

https://t.co/cW7eGBqeUx 1/

[Eric Feigl-Ding @DrEricDing]

I'm shocked a lot of doctors don't know about this newer flu antiviral drug called Baloxavir (XOFLUZA)... that shortens your flu illness by 33%, and reduces your viral load by day 2, versus what a placebo takes 5-6 days to achieve. Baloxavir also seems superior to TAMIFLU (oseltamivir) for smashing your viral load on 2 day, achieving what takes Tamiflu 3-4 days. CDC even lists Baloxavir on their website as one of the top 4 drugs that it tracks whether it works against new flu strains (it works)

[Resia Pretorius @resiapretorius]

I am excited to share that our imaging flow cytometry microclot analysis is now done in Europe! The Swiss lab INUS Laboratories AG has the licence!

https://t.co/XmSXIHBWYP

[Brain Inflammation Collaborative @BrainInflCollab]

Muscle weakness is one symptom of post-exertional malaise (PEM).

This is experienced by those with:
1. Long COVID
2. ME/CFS
3. TBI
4. MS

Data suggests this is to blame...🧵

[Irina @Irlolos]

@SamRNolen Thanks! Haven’t heard about coffee enema - is it from born free protocol? I’ve read that coffee often has mold. I also had these recommended: Ultra binder
Pectasol
Boluoke (mold hides behind biofilms)
Body Bio PC 6 caps

[Irina @Irlolos]

@SamRNolen What’s your detox routine?

[🕸️Dr.T, PhD @chydorina]

Bacteriophages "phage therapy" is the future of whole body pathogen load management. It will only get better and it is already blowing my mind.
I am currently testing phage therapy "bacteriophages" following Born Free protocol recommendations.

Will be discussing a LOT over next few months. I buy from: https://t.co/DIaKm8Hkfe

Short answer = ***remarkable effects (for Micromir and Veira brand, not the ones we can get in the US - which i have tried and do not have anywhere near same power). I have not tried life extension specifically but my instinct is to go direct to 'cosmoll' and buy the Eastern European developed products - this is where the technology has been properly researched/implemented and it is standard part of health care there.

I am currently using phage therapy on - whole body pathogen load - mouth, ears, nose, skin, privates. Also putting into the nasal cavity (rhino nasal nebulizer) and cleaning with Navage (nasal rinsing). Not doing blood/gut yet.

The biggest quickest obvious result had been oral. Using oral phage spray/gel - tongue health completely shifted in days.

Tongue went from red, bloated, coated, and obviously sick (spleen, qi, blood deficiency type profile) from TCM standpoint to close to normal size, pink/more pale, coating literally disappeared. This is the first time in 10+ years that my tongue looks even somewhat close to normal.

I have never made this type of progress before on oral microbiome. It has always stayed very pathogenic - and bristle microbiome test has showed very poor health status for oral microbiome no matter what I did. Read section in Born Free (I am following
@joshual_tm
phage therapy suggestions). So far my response has been beyond incredible. https://t.co/JdKyz4eKxT

After my experiences with antibiotics over the last few years which I will probably not use again - due to microbiome damage - unless there are no other option I have been looking for alternatives.

I believe that therapy with bacteriophages is the future of pathogen management. It will only get better and it is already blowing my mind.

[Irina @Irlolos]

@SamRNolen Would air purifiers help?