Preprint Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

[Saz94]

Interview with Chris Ponting by David Tuller about this study from Nov 19, 2024:

I watched the video, and a couple of points stood out to me:

1) he says that they didn’t get blood samples from severe patients for this study, only mild and moderate, and some of the people in the ME patient group even described themselves as being in good health.

2) he says that because it’s blood, not genetics, they can’t know the causational direction - are these abnormalities what’s causing ME, or are they a downstream effect of ME.

 

[Utsikt]

and some of the people in the ME patient group even described themselves as being in good health.

I think that’s quite normal. Your frame of reference shifts, so «good» now would have been «bad» before. Simply because you’re better than you were or could have been.

 

[Simon M]

I think that’s quite normal. Your frame of reference shifts, so «good» now would have been «bad» before. Simply because you’re better than you were or could have been.

I’m pretty sure that in this research they excluded people who said their health was good, on the grounds that they might be right. It’s possible this includes people who misremembered a previous diagnosis of chronic fatigue and are now in good health.

A paper about the quality of this UK Biobank cohort was referenced in the new “unequal access” paper from the group, but it turns out that is a pre-print that hasn’t come out yet, but will do soon. I think we’ll get a much clearer picture then.

Ref that isn't yet up:
Samms GL, Ponting CP. Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank. 2025.

 

[Kitty]

some of the people in the ME patient group even described themselves as being in good health.

It depends what they mean by good health too.

My GP thinks I'm in excellent health. I take up every screening and vaccination, and don't yet have signs of the cardiovascular, pulmonary and metabolic diseases that are common after age 65. The metrics he uses don't happen to include any of the things that cause my disabilities.

 

[Sean]

Yes, the volume of a room is not determined by measuring its temperature.