YouTube: Jennie Jacques Vikings Actress with Chris Ponting DECODE M.E.

[SNT Gatchaman]

Jennie Jacques speaks with @Chris Ponting on DecodeME and the recent Biobank preprint Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity

 

[SNT Gatchaman]

Chris commented on the lack of scientific curiosity, that these studies should have been done 20 years ago.

Chris P, on failed replication: "Only begin to believe things in ME science if you see them twice - independently twice."

Jennie J: "The changes are happening. They're way too slow, in science and in our NHS. There's still no protocol for severe ME and people are actually left to die. […] At least something's happening, something's changing, I can feel it...."

 

[Sasha]

Chris says here that they don't today have a result from DecodeME and don't have a date for when they do but that they're going as fast as they can - and that as soon as they have results, they'll put them out in a preprint.

 

[Andy]

Chris says here that they don't today have a result from DecodeME and don't have a date for when they do but that they're going as fast as they can - and that as soon as they have results, they'll put them out in a preprint.

To manage expectations, "a result" might be anything between evidence for no genetic influence all the way through to clear evidence for the genetic basis of ME/CFS and targets for drugs. Better phrasing might have been "once the analysis of the genetic data is complete then the results of the analysis will be put out as a preprint".