Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al

Very good question here

https://twitter.com/user/status/1695045411923279931





"Have been exploring M.E media portrayal more today following yesterday's media blitz. Realised that if the key messages was the impact of women/ getting worse as get older, why did the media feature younger women who were recovering? Now the public has mixed messages"

 

Ah, I was using the publicly available figure. I will update.

 

Great, thanks. We actually publicly confirmed that figure in our latest newsletter yesterday, see UK: DecodeME recruitment open (online questionnaire, postal spit kit), 12pm 12th Sept 2022

 

Women More Likely to Suffer From Chronic Fatigue: Study
Geneticists searching for the cause of the commonly described illness chronic fatigue say studies so far show women are most likely to be affected. With the results of over 17,000 people, it’s the first large-scale research into the sickness which has baffled doctors for many years. Chronic fatigue is the common name for myalgic encephalomyelitis, also known as ME. Inside Edition Digital’s Stephanie Officer has more.

groan 'chronic fatigue'; and is this really what the study is saying?? clearly they didn't 'read the paper'.
messaging is all over the place.

 

This 93-second news item is on a YouTube channel that has 12.2 million subscribers!

It uses the footage from Sky News that some of us have already seen.

 

eta:
nice to see a bit of accurate reporting in the short video here (transcript is also available).
https://medicaldialogues.in/mdtv/ob...-fatigue-syndrome-in-women-shows-study-116329

 

ME Research UK

DecodeME is the largest ME/CFS study in the world, and, very importantly, is co-produced by people with lived experience of ME/CFS. The study aims to collect information from people with ME/CFS, and to consider whether certain genes, biological pathways and cells are directly involved in ME/CFS.

While DecodeME is an ongoing study, a paper has recently been published reporting initial findings from the questionnaire relating to the characteristics of the people who have taken part so far.

Read more here: https://www.meresearch.org.uk/initial-findings-from-the-decodeme-questionnaire

 

David Tuller: Interview about DecodeME with Professor Chris Ponting

"Professor Chris Ponting is a geneticist at the University of Edinburgh. He is also the principal investigator for DecodeME, a genome wide association study. The DecodeME team recently published findings from more than 17,000 questionnaires it had collected from patients. In our conversation, Professor Ponting discussed these results, why it is important to have patients involved in the research, and related issues."

ETA: https://virology.ws/2023/08/31/tria...ponting-discusses-on-decodemes-first-results/

 

Chris' sound seems low. I hope it's sufficiently audible.

 

I did need to boost the volume a bit in order to him clearly, it was OK for me but it might be challenging for others with more sensitive hearing than me.

 

i wasn't sure why that happened. it wasn't a problem on one I did yesterday.

 

Oh, good!

 

It's best to run your audio through something like Audacity to get your levels right and perhaps apply a compressor before publishing.

 

You're talking to someone who understands nothing about technology and online anything. I don't really know what any of that means and thinking about trying to figure it out fills me with anxiety.

 

The paper states:

"Participants reporting an infection at onset were more likely to have had ME/CFS symptoms for over 10y than those reporting no infection at onset (66.8% [n=7,246] vs. 45.1% [n=1,183]). This is despite their similar ages (medians 54y [IQR=43y–64y] and 52y [IQR=41y–62y], respectively). The statistical significance of this difference is strong. When testing for association between those with an infection around the time of ME/CFS onset and duration (<10y vs. >10 years since time of onset), age and sex, only association with duration was significant (p = 4×10-67). This relative paucity of participants not reporting an infection around the time of onset of their ME/CFS over 10y ago is unexpected, and not easily explained by historic variation in ME/CFS triggers because association with age was not significant in this analysis (p > 0.05)."
​

Does anyone have a plausible explanation for this? Might it point to more ME/CFS-outbreaks in the past (more than 10 years ago) than in recent years?

 

i am feeling very grotty cant really understand anything other than the first sentence (that i bolded). Couldnt the explanation be that perhaps infectious onset ME is a different biological/pathological beast, than non infectious onset..... ie look similar but actually not, and non infection onset is less long lasting/easier to recover or improve from. Could be 2 completely different entities that only appear same/similar??

I cant explain what i mean... lol... closes eyes and turns over in bed.

 

Maybe one is that people can have an infection without realising, and another is that many viral infections aren't very memorable?

On questionnaires that ask for a Yes/No answer I have to say I had no infection, because it was nearly 50 years ago, onset was insidious, and I've no idea whether I had a bug around that time or not.

(As an aside, none of the three pwME I've been close to knew what their trigger was, so we were surprised when we discovered via internet groups that some people do!)

 

There is a theory that ME onset can be linked to other viral insults . So a kind of double act . Previously coupled with polio, the jump in cases in 1980s could be linked with HIV ( I think Hanson or Klimas mentioned this recently) , the link with HHV 6 reactivation, previous SARS .
It's something which may merit more digging into