Thread by @tessfalor

#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.

Want more detailed temporal sampling of patient symptoms

Experiment to visit homes of patients

At home visits, blood samples over a day,

Chris Armstrong also doing in Australia

Will do full omics

Lactate is a very important marker. Increased levels of lactate point to mitochondrial dysfunction

#TheAcidTest

Look for hypoxanthine (marker of hypoxia)

Traveled across Sweden to west coast

When they got to patients, unloaded car, did cognitive test (reading 1 page, complicated text) followed by a control question. Looked at time to read and if they could answer question.

Test 2: social exertion. 15 minutes of conversation. Problem that patients were so excited to see them that they had to tell them not to talk too much. 😆

Then standardized nutrition.

Test 3. Low intensity physical exertion - 5 minutes ergometer at 25 watt

"Traveling around the country not easy. Incidences with the car. Sweden is snowy and slippery. It looked rather messy" 😆

Measured lactate and glucose throughout the day on each patient. Used a centrifuge.

Like #TheAcidTest & @remissionbiome :)

Even on lowest effort on bike see difference between patients and the controls.

There are 2 different groups of patients, 1 is more like the controls, other has higher lactate

#TheAcidTest

Look at 800 different molecules. Broad coverage of metabolic pathways

Phenylalanine sig increased

Hypoxanthine is increased even at base level

"We are hopefully that we will be able to contribute and help patients."

Thanks to patients, @OpenMedF @patientled @PlzSolveCFS and many others