DecodeME in the media

hotblack said:
Nothing from the BBC website yet, hopefully there will be as it has huge reach, but looking at all the other headlines from search engine news feeds the message seems good, this is what the casual observer or half interested person will probably see. Great job by the whole team in getting the message out.

Scientists FINALLY crack the mystery of chronic fatigue syndrome - major breakthrough reveals cause, sparks new hope for effective treatment (Daily Mail)

Groundbreaking genetic study sheds new light on causes of ME and chronic fatigue syndrome (Daily Express)

ME is a real illness, genetic study shows (Telegraph)

The key genetic difference ME sufferers have from others - and what it means (Independent)

Key genetic differences found in people with chronic fatigue syndrome (New Scientist)

Scientists find link between genes and ME/chronic fatigue syndrome (Guardian)

ME linked to your genetics – early study indicates (Channel 4)

People with ME have key genetic differences to other people, study finds (London Evening Standard)
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It's made the Rhyl Journal, what's the BBC playing at?
 
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.
 
Maat said:
Being covered on Sky news now. Only the Psychologist on the panel was asked to comment. She stated that what people are pointing out is that many of the participants in the study had 'self reported diagnosis'. Am I correct in recalling that only those with a medically confirmed diagnosis were invited to provide samples, or am I confused? I do remember that I had to wait to see if I would be called to provide a sample.
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I thought the sky news items were very strange for the few hours when it was all just released and other channels were covering me/cfs it appeared like they’d jammed in items on Prince Harry instead as if someone might have made a last minute decision to use that to keep the content going.

Anyway as someone who has watched that channel a lot or had it on mute in background for company tye thing over the years it seemed out of kilter
 
Maat said:
She's one of their usual contributors in their 10.30 p.m. tomorrow newspaper review every night, not brought in specially. For the life of me I can't remember her name, even though I watched the repeat specifically to make a note of it!

Here's where I think she got the impression from https://www.reuters.com/business/he...ked-with-chronic-fatigue-syndrome-2025-08-06/

The other panelist was a sky reporter and it may be why he didn't comment on the the Guardian article which they were reviewing. https://www.theguardian.com/society/2025/aug/06/genes-me-chronic-fatigue-syndrome
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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 )
 
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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.”
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www.theguardian.com

Scientists find link between genes and ME/chronic fatigue syndrome

Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness
www.theguardian.com www.theguardian.com
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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hotblack said:
www.bbc.co.uk

Today - 07/08/2025 - BBC Sounds

News and current affairs, including Sports Desk, Weather and Thought for the Day.
www.bbc.co.uk www.bbc.co.uk

Skip to about 2h 36m in
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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.
 
Kiristar said:
I was taken aback at my emotional reaction to the validation and my prosaic hubby said also felt a similar reaction.
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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.
 
bobbler said:
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 )
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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.
 
Maat said:
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.
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I'm hoping that I'm allowed to say this but sadly, as someone with a BSc psychology where I wasn't just sucking up stuff and was covering the full breadth of what the subject is rather than just therapy theories, she reminded me of too many that I have met over the years who have got themselves 'jobs' in an area calling itself psych something and just spout sing-song learned things by rote from whoever without even critically analysing what comes out of their mouth.

I've been utterly shocked over the years as I myself have had to strategically shut up to these people wondering how they got themselves the power they had, but I guess the not being a questioning type and being happy to spout unpleasant stuff and blindly pretending to themselves its 'help' is part of that. Some of these people are ones that have been 'paid for' ie not NHS or whatnot, others IAPT, academic.

So she's quite an interesting representation of what I've seen in quite a few sadly if it is something that she believes that she has either had someone she's in with priming her and pointing her to a certain view or she's actively sought out some strange niche ideas on this particular article because those niche places are where she looks for said information. I say niche because we've quite a good idea of the main coverage and facts, and so far what it's one SMC 'responder' who doesn't work in ME/CFS (but is trying to create an alt-diagnosis and insists on calling it CFS/ME as a wind-up anyway).

I haven't read the Reuters one yet and whether that covers the rumour she is putting out of 'people' - which I'd be intrigued which in-crowd she is talking about there - deciding the weapon of inference they are going to use is the idea its somehow needing a replication in a non-developed country. It's very childish. And shocking that she's repeating the 'self-diagnosed' or , as I haven't seen that term in that specificity used elsewhere she has made it up herself as a rumour or someone else has that she is just repeating.

As someone I don't think has done research herself, so certainly wouldn't herself know about how something had to have a study based in Africa 'replicating it' to be true, it's all pretty obscure. I doubt she has ever read many studies that talk about replication from the non-developed world and PACE certainly wasn't as far as I'm aware over the decades it was used to dominate the regime for pwme? Or have a missed a trial done in .. well what would count as the 'non-developed' (don't we call it developing, and aren't there specific categories within that too now) world now anyway?

And it wouldn't have taken her more than a few minutes to have checked that before she said the word 'self-diagnosed' that was the accurate term even if she was wanting to throw shade.

I don't know whether its 'minion-y' or self-kiddery in seeking out with some effort some opposite stuff in order to appease one's set position and cognitive dissonance etc rather than being able to take something that has been coming a long time but debunks their internal beliefs they want to hold onto. But it is sure interesting to watch when not in the usual situation that I've been in

If someone is happy to do that as a broadcaster without checking facts then maybe you would hope that watching become aware how quickly made and unchecked opinions might be used by such people in their other work and yes I'm saying it because even though they get away with it they know they shouldn't be providing misinformation on a disease or piece of research so I don't see that I should assume more care or attention of what they are pushing in a private setting is any more considered or checked than what they will spread via a broadcast.
 
The Radio 5 segment was good overall. The last guy on, who has a daughter with severe ME, was quesitoning the complete lack of curiosity in the medical and business sectors and pleaded for more money, which was a good addition.
 
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