DecodeME in the media

Straight after the news, good spot, a personal story from a young woman describing what so many have experienced from the medical profession followed by an interview with Chris Ponting.

Questions on auto-immunity, medical misogyny,
Chris focuses on his message well. And the interviewer is to be fair helpful.
Robust findings but more research urgently needed, patients clear that they are not understood, no funding because disease has been stigmatised.
 
Article in Guardian: Scientists find link between genes and ME/chronic fatigue syndrome
Scientists have found the first robust evidence that people’s genes affect their chances of developing myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a mysterious and debilitating illness that has been neglected and dismissed for decades by many in the medical community.
Early findings from the world’s largest study into the genetics of the condition pinpointed eight regions of the human genome that were substantially different in people with an ME/CFS diagnosis compared to those without the illness.

The discovery suggests that several variants of genes commonly found in the population raise the risk of developing the illness, though many people will carry the variants and never acquire it.

Related: Over 150,000 more people in England have ME than previously thought, study finds

Prof Chris Ponting, an investigator on the DecodeME study at the University of Edinburgh, called the results “a wake-up call” that showed a person’s genetics could “tip the balance” on whether they would develop ME/CFS.

“These provide the first robust evidence for genetic contributions to ME,” Ponting said. “There are many genetic variants that apply across the genome that predispose people to be diagnosed with ME.”
More research is needed to develop diagnostic tests or screenings to identify people at high risk of ME/CFS. But scientists called the work a milestone that put the illness on an equal footing with other debilitating diseases and opened potential avenues for treatments.

“This really adds validity and credibility for people with ME,” said Sonya Chowdhury, chief executive of Action for ME and a DecodeME co-investigator. “We know that many people have experienced comments like ‘ME is not real’. They’ve been to doctors and they’ve been disbelieved or told that it’s not a real illness.”
also Reuters https://www.reuters.com/business/he...ked-with-chronic-fatigue-syndrome-2025-08-06/
the Mail and various others
 
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Skip to about 2h 36m in
That BBC item was very good. The young woman with ME/CFS spoke well of her experience, Justin Webb asked sensible questions, and Chris Ponting was very clear about the findings, the need for more research and lack of funding, and the stigmatisation of pwME.
 
I was taken aback at my emotional reaction to the validation and my prosaic hubby said also felt a similar reaction.
Me too. My sister, niece and mother had come by (rare for us to be together, and it has to be short due to my health) with a takeaway. We watched the C4 report together in stunned silence - it was some moment to share.

Thanks to Chris, the participant, Tessa Munt(??) and the C4 team for the report, which was brilliant in every way.
 
Ok I’ve got the 11.30 recording open (no 10.30 press preview as it was Trumps speech instead) - Lucy Beresford (the other one on press preview is Adam Boulton who was a Sky reported and presenter for years and just in last few weeks has started doing this guest spot every so often).

Yes she’s the ‘broadcaster and psychotherapist’ they’ve had quite a bit over the years on the press preview (I’ve never worked out why , not that she’s bad but she wasn’t famous before as far as I’m aware so I can’t name the connection she has that meant she is often on this press preview. )

They did actually include ‘study finds genes that could raise risk of ME’ after the break in this. Presenter did a good read out about ‘scientists have found robust evidence that genes increase someone’s chances of developing M.E., a mysterious and debilitatinv illness that has been dismissed and neglected for decades by many in the medical community’ then ‘I remember it used to be called yuppie flu driven by psychology or driven by laziness some even suggested so this is redemption for those who fought for years suggesting they had ME when they weren’t believed’

Beresford: ‘yes it’s a tricky one you’re right there was some sense in which people assumed that it might be psychological in etio erm orientation , but the original of it is not necessarily changed by this even though they are saying that there might be some genetic code as we know that the etiology of a condition or a disease might have other factors at pleay. You could easily have the gene for something and not then go onto develop the disease and I think what people are very worried about with this particular piece of research is that I’m quite a lot of the people who were part of the study had actually self-reported this condition so they hadn’t necessarily had a formal diagnosis and that just unfortunately kind of dilutes the effect of this research. So what people are talking or calling for is maybe a bigger study maybe a study of people in other countries not just developed countries but less developed countries to kind of of see if you can replicate the results of that.’

So yes , Lucy Beresford definitely for some reason has been primed with misinformation (which might be her own).

Host ‘yes that’s interesting. It’s the university of Edinburgh who suggested that people who present with chronic fatigue syndrome had eight areas of genetic code that are different which is interesting. They also pointed out the condition is believed to affect nearly 67m people worldwide. I know it’s been speculated it could be post viral like long covid for example or but as you suggested maybe they you know continue working to find out more about chronic fatigue syndrome’. And seemed a bit awkward at that point - I don’t know whether because she was taken off guard by her (Lucy’s spiel) or that was something the programme editing agreed with

It was interesting that adam boulton didn’t speak on it as with many of their items both contributors do, but his focus is political commentator so maybe that’s why they let Lucy dominate.

She, Lucy, had been pretty opinionated on other tax stuff too tho earlier on in programme saying things like ‘they don’t understand much about human psychology and how they change their behaviour on things like non dom or company directors that can move abroad, and all youngsters are scared they’ll never get a job because of ‘the job tax’’ her invention to call the NI on employers ‘job tax’ several times in a small segment. So again on that she’s either become more emboldened over the years if speaking her mind (or brought in for it) I don’t know if they are ever given direction in what to say on this particular show.

@Joan Crawford in case this answers any of your perfectly reasonable questions. I’ve never fully known why she was on there over the years, so missed the connection (most others on there are journo of some kind or allied to politics )
Yes, that's it. Good job transcribing that, I tried to last night but just wasn't able to.

I noticed that about Adam Boulton but you're probably right, and also sometimes they want to cover a news story but don't have time for comments from both on the panel, and this was an unusually extended press review. In view of that, the fact they covered it all is pretty good.

I also got the impression that the host may have not been expecting Lucy's speil.
 
Channel 4 News – full segment on DecodeME results (9 mins) — the world’s largest genetic study of #MECFS — identifies eight genetic difference. Includes interviews with Prof Chris Ponting, a patient participant, Sonia Chowdhury, and MP Tessa Munt.


Further to comments above, I’m very grateful to Tessa Munt for her advocacy and support but unfortunately she doesn’t appear to understand the science. The genes are not “unique” to people with ME/CFS as she suggests and there would be absolutely no point in anybody being tested for these genes.

I’ve tried to politely bring this to her attention on BlueSky: [Deleted BlueSky post.]

I hope that knowledgeable people involved with the APPG will try to ensure that spokespeople understand the basics of the science.

[Edit: I deleted my BlueSky post after Hutan correctly pointed out that I was wrong to suggest that the identified genes are less common in healthy people. Some are more common. I’ve now posted a new BlueSky post. See posts below.]
 
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The genes are not “unique” to people with ME/CFS as she suggests and there would be absolutely no point in anybody being tested for these genes.
Important points Robert, thanks for letting Tessa know. Advocates won't be doing anyone any favours by suggesting that special genes have been found that can be tested for.

A very pedantic point, and one that I am sure you know:
The genes that have been identified are not unique to people with ME/CFS – they are just less common on healthy people.
isn't quite true. Some of the identified genes are actually more common in healthy people, so less common in ME/CFS people and therefore somewhat protective. The things is that the frequencies of the genes in people with ME/CFS and healthy people are significantly different.
 
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A very pedantic point, and one that I am sure you know:

isn't quite true. Some of the identified genes are actually more common in healthy people, so less common in ME/CFS people and therefore protective. The things is that the frequencies of the genes in people with ME/CFS and healthy people are significantly different.
Thanks for important correction. I will redo my BlueSky post!

Edit: now done:

I hope that’s accurate in simple terms.
 
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