Development of surrogate end-point biomarkers for chronic fatigue and myalgic encephalmyelitis/chronic fatigue syndrome (ME/CFS)

[Hoopoe]

Watanabe et al. have received funding to conduct a 120 participants PET brain imaging study.

The primary outcome:

The level of brain positive inflammation dected by positron emission tomography (PET), [F18]DPA-714

Secondary outcomes:

Oxidative stress level, Anti-oxidant activity, Metabolome, Proteome, Cytokines, Extracellular vesicles, Clinical test (CRP, cholesterol, etc.), CD antibody, Autonomic nervous system, Questionnaires for fatigue, depression and various symptoms, Arithmetic task, Sleep-wake cycle, Performance status for fatigue

Details here https://upload.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000033257

This group has previously published a ME/CFS neuroinflammation paper: https://www.ncbi.nlm.nih.gov/pubmed/24665088

 

[Esther12]

Watanabe et al. have received funding to conduct a 120 participants PET brain imaging study.

Mere minutes after your other thread on crowd-funding: https://www.s4me.info/index.php?threads/brain-imaging-study-request-for-crowdfunding.964/

Does this mean I can keep my $6,000?

 

[JaimeS]

I was wondering if we were ever going to see a follow-up on this one! Awesome.

 

[Hoopoe]

If these brain scans cost $5000 (the figure given by Elzakker for his own study) then this is $600000 for scans alone. That's why we need government funding.

However, crowdfunding by patients can help researchers make pilot studies that then enable big government funded studies like this one.

 

[Simon M]

This has me slightly mystified, but looks like a large-scale replicatioin of the brain neuroinflammation study that caused such a stir back in 2014: First Direct Evidence of Neuroinflammation – ‘Encephalitis’ – in ME/CFS

120 is an enormous sample size for a PET study - a good thing but also makes it expensive. So this study could be huge for linking mecfs to neuroinflammation (activation of the brain's immune system).

The surprise, for me, is that the 2014 paper study said a replication was under way using a better marker of inflammation but we'd not heard anything since. And the stated purpose of this study isn't a replication, but to validate secondary end-points.

"End-points" also suggests some kind of clinical trial, but there's no methodology. So this is intriguing and potentially very exciting, but we are still largely in the dark.