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

STV News website, https://news.stv.tv/east-central/wo...ected-by-me-edinburgh-university-study-claims

Scottish Herald, https://www.heraldscotland.com/news/national/23743560.women-severely-affected-study-claims/

Good Morning Scotland, https://www.bbc.co.uk/sounds/play/m001pt45 - skip to 43:10 for the segment on DecodeME.

 

https://twitter.com/user/status/1694638897630679290

 

Was data on family clustering of ME/CFS-like illness collected?

It's clearly a real phenomenon and it would be interesting to know if these cases may be the ones with stronger genetic predisposition. If not, then maybe these are cases that all had exposure to the same strain of a virus that for some reason was very good at inducing ME/CFS.

 

No, as it is outside the scope of our investigation, which isn't to say that it is a good or a bad thing to investigate, just that we aren't.

 

discussion about to begin on Radio 2 Jeremy Vine show
"why women report more ME symptoms than men"
https://www.bbc.co.uk/programmes/m001pltq

 

Study shows women more severely affected by ME/CFS
https://www.ukri.org/news/study-shows-women-more-severely-affected-by-me-cfs/

eta: four pages of links to article by various sites and still going!
eta2: lost count now.......

 

In the independent article, Chris Ponting says: “ME/CFS is a devastating disease affecting a UK population the size of Derby.' - I've not heard that before, strikes me as a good way of visualising the number of people affected.

 

oh no; current caller is talking about LP
eta: presenter has just told people that the study is called Decode me.


also for future 'releases'; it would be good to take advantage of the wide coverage to have a link to something brief but accurate on PEM rather than just saying look on the internet/charities websites.

 

If anyone is up to contacting the BBC about this. Ie they gave that particular caller quite a bit of airtime to explain the LP; to point out that there are a number of unevidenced and unapproved commercial 'therapies' which unfortunately many pwME are so desperate that they will try.(someone also contacted them about th Perrin technique).
The latest NICE guidelines specifically say that the Lightning process should not be offered/suggested to pwME.
Please could they be mindful of this in future phone ins about ME.

 

I think they would view such alternative views as a main part of their programme unfortunately, and they would have no intention of stopping people airing them.

 

starts about 1hr 5 mins in.

 

Could someone explain the publishing process here? This was a pre-print but is now a peer-reviewed study on the same platform? So this is the final publication for these data, right? Unlike papers on other pre-print servers, it hasn't been sent out to other journals for possible publication?

 

This should help to explain the process, https://openresearch.nihr.ac.uk/about, but simply, yes, it was a preprint but following peer review is now available in its final form on the same platform.

Link to final version here, https://openresearch.nihr.ac.uk/articles/3-20/v4

 

discounting the utterly infuriating 'CF' tag line throughout.... i do wish they'd stop freakin doing that!

otherwise i thought is was quite good, and well done to the lass with ME who took part, she did well i thought

 

Agree.. she was v well spoken.. she did a great job.

 

Trial By Error: DecodeME Team Describes Study Sample; The Atlantic’s Ed Yong Covers PEM; STAT Busts NIH’s Stumbling Long Covid Efforts

https://virology.ws/2023/08/24/tria...stat-busts-nihs-stumbling-long-covid-efforts/

"To date, more than 17,000 people in the UK who report having been diagnosed with ME/CFS have submitted questionnaires"

@dave30th the 17k was up until the end of last year, we have actually had more than 23k complete the questionnaire (unpublished figure from earlier this month).

 

Good clip, but yes, why on earth did they keep displaying 'CHRONIC FATIGUE' banners on the screen while verbally calling it ME?? It again reinforces the erroneous idea to the general public that this serious illness consists of just 'fatigue'. A good job otherwise.

 

Its even made it onto Christian radio yesterday apparently (UCB radio)

its amzing isnt it? at least 3 people have contacted me to tell me all about the Decode ME study because they heard/read about it in media. But they are all people who i told about the study myself....

For a lot o f people things only seem to impact them when they hear see on radio/tv newspapers. Its like they just glaze over & take no notice when i tell them about it. It does irritate me!

but anyway at least i was able to share the link again and ask them (again) to promote/spread the word.

 

You may well be right, i have had a major irritation creating day today so perhaps i need to be more gracious.

actually one lady, a lovely person who is sympathetic to us, she heard it on UCB, said that she had remembered what i told her, but that she didnt recognise it from what was said at the interview. She also had the impression that Decode was a project by AfME. So perhaps the interview was with someone from AfME which just focussed on different aspects than what i said originally.

As this latest media frenzy was about the gender split it maybe that is what has stuck in people's minds. I focussed only on the genetic - possibly might find targets for treatment angle so perhaps it just sounded very different.