#IIMEC15 Dr Jesper Mehlsen

TREATMENTS - Toward uniform treatment
regimen for ME/CFS
Listen to patients about what works and what doesn't work.
There isn't an approved medication for #MECFS

Symptomatic treatment can be applied to improve quality of life
neuroinflammation and human herpes virus

EBV reactivation causes inflammation -> microglial inflammation

Treat with antivirals + reduce Inflammation (Minocycline, Doxycycline, LDN, Low Dose Abilify, PEA, COX-2 inhibitors, AT1R blockers.

@remissionbiome
Mitochondrial dysfunction

Problem with pyruvate, use fatty acid instead and produce ROS

Treat with antioxidants, L carnitine, d-Ribose, ketogenic amino acids, Q10, NAD+
GI dysfunction

Constipation: dietary adjustments, prokinetics, Avoid opioids and anticholinergics

For diarrhea: dietary, bile acid binders, opioids

Dysbiosis: probiotics, FMT
cardiovascular control (sympathetic nervous system)

for POTS - pyridostigmine, beta-blockers, ivabradine

IV saline infusions help severely ill
All of those systems are involved in #MECFS and many with #LongCovid

Few of the possible treatments have been subjected to placebo-controlled RCT. We need those, but there is no interest. Those drugs are already on the market.

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More from @tessfalor

Jun 2
#IIMEC15 Ron Davis
He's wearing all black, because it's the "uniform of #MECFS". @DafoeWhitney doesn't do well with color, so he's used to wearing black
How do you determine the molecular cause of #MECFS & #LongCOVID?

and how do you treat it?
Read 18 tweets
Jun 2
#IIMEC15 Professor Robert Phair

The Itaconate Shunt Hypothesis for ME/CFS
Start with TCA cycle

NAD is reduced to NADH, used to make ATP

Looking at part of pathway not in the textbooks - The itaconate shunt
starts at cis-Aconitate

itaconate is converted to itaconyl-CoA with STK to

Up until 7 years ago, that was the end, then found CLYBL. Lab discovered what it does
Read 19 tweets
Jun 2
#IIMEC15 Kristian Sommerfelt

Funcap - Functional Capacity Questionnaire in #MECFS
How do you access functional capacity?

5857 responses from #MECFS patients (online anonymous, spread via social media)
Questions like "can you X? How often do you Y?" don't work, because it is context dependent. It depends on what else the patient has decided to do, doesn't take consequences into account
Read 5 tweets
Jun 2
#IIMEC15 Professor Jonas Bergquist

Visits to severely affected Patients
Andrea affected at 22 after mild infection (maybe EBV)

Extreme progression after a few months

Today fully bedbound
17 year old case study they published in 2022

"When a 17-year old girl is diagnosed..."

Girl had diary showing how severe Sx, which they plotted and showed fluctuations over many different time scales.
Read 15 tweets
Jun 2
#IIMEC15 Professor Maureen Hanson

Immune Abnormalities and Viruses in ME
65 million people world-wide have #MECFS, same number have #LongCOVID now

Has occurred in outbreaks, some with polio outbreaks
#MECFS symptoms: fatigue, unrefreshing sleep, orthostatic intolerance, cognitive impairment, sore throat, fever, muscular pain, etc
Read 10 tweets
Jun 2
#IIMEC15 Professor Alain Moreau

Long Covid to ME/CFS Transition
challenges of recognizing the facets of #LongCOVID

It's like trying to solve the Rubik's cube with changing colors
SCOPIMED study of #LongCovid

Study population minimum 6 months post Covid, but average 9 months

He mentioned funding from @patientled
Read 13 tweets

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