Thread by @tessfalor

First up at #IIMEC15: Professor Simon Carding

Research into ME/CFS in Norwich Research Park twitter.com/i/web/status/1…

#MECFS is a multifactorial and complex disease - immune dysregulation, mitochondrial impairment, intestinal dysbiosis, viral infection, neuro-endocrine impairment.

Does #MECFS start in the gut? Microbiome - bacteria, viruses, fungi

Affects immune system fitness (keeps immune system functional), communications of gut-brain axis, influence mood, behavior, linked to greater than 90% of human diseases

is it a cause or just an effect of disease?

In their research they focus on severe and very severe (25% of patients, but less than 1% included in research)

Difficult for them to participate, but they are enthusiastic to be involved

Viruses in severe ME

In gut have bacteriophages (viruses that infection bacteria)

In response to stress, viruses reactivate

Can suppress immune system

Looking at viruses in gut - have first comprehensive description of gut virome in sever #MECFS. Which bacteria do they infect?

They have a manuscript currently under review

Another project by Katharine Seton - autoimmunity in severe ME - reactivity to their own gut microbes?

1. severe ME have lower levels of antibodies to foreign microbes

2. have increased antibody reactivity to specific gut bacteria

paper on pre-print

Can you treat #MECFS using gut microbe targeted therapies?

If you can identify specific microbes or metabolites, could be useful for treatment

FMT (fecal microbiota transplant) is a possible treatment

FMT and #MECFS - study by Thomas Borody

60 mild-severe ME/CFS patients, 52 with IBS

42 responded - improved sleep, fatigue, lethargy

picked particular microbes

Comeback study - FMT trial by Peter Jofhsen, Rasmus Goll, Linn Skvevling

80 ME patients, primary outcomes fatigue scale and fatigue changes

Measuring fecal microbiome and virome and blood samples of immune markers

RESTORE-ME starts in 2023

120 patients, delivering FMT by capsules

primary outcomes: accelerometer, cognitive test

measuring fecal microbiome and virome, blood immune markers

Katherine Seton looking at senescence in immune cells

RESTORE-ME timeline

Compliant facility Jan-Oct 2023

Licenses and approvals in Aug 2023

Recruitment in Dec/Jan 2023/4 through east coast community healthcare

Another study in photobiomodulation (PBM) therapy for #MECFS

US-FDA approved it for acne, muscle and joint pain

Red light triggers mitochondria to become more efficient in producing ATP

prior human studies shows this restored ATP production

That photobiomodulation trial is called "Light ME Up"

N=10, live in UK, >18 years old, ethics approval pending

remote study (looking at inclusivity of severe #MECFS patients)

will be mailed lamps and accelerometers

being run by Katherine Seton

Question: has anyone looked at muscle in severe ME?

Answer: they are interested in nutrient uptake and production. They are looking at muscle and what microbial products might stimulate it.