DecodeME in the media

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.

I've now finished my research following that Sky Press Review last night and the Reuters piece on DecodeME.


This is from Lucy Beresfords's website: https://www.lucyberesford.com/psychotherapywalkingtherapy

I work 1-to-1 with clients all over the world, all grappling with some aspect of their life, from anxiety, burnout, heartbreak, depression, coping with fame or a leadership role, to sex or relationship issues.

Trigger words used here 'anxiety' and 'burnout'. Burnout still being used around the same time as 'Yuppie Flu' in the mid 1980s.

Further digging unearthed this paper epublished April 2010:

Two sides of the same coin? On the history and phenomenology of chronic fatigue and burnout. Leone SS, Wessely S, Huibers MJ, Knottnerus JA, Kant I. Psychol Health. 2011 Apr;26(4):449-64. doi: 10.1080/08870440903494191. Epub 2010 Apr 29. PMID: 20437294.

Full PDF in researchgate:
https://www.researchgate.net/public..._phenomenology_of_chronic_fatigue_and_burnout

ABSTRACT

Burnout and chronic fatigue syndrome (CFS) are two fatigue syndromes which have developed largely independently from each other, yet whose similarities in symptoms can be a source of confusion. We aim to explore the phenomenology of burnout and CFS in a historical context as this may provide some insight into the links and relationship between these conditions. A narrative review based on literature in the fields of history, social science and medicine. The origins of CFS lie within medicine, whereas burnout developed in a psychological setting. As well as symptoms, burnout and CFS also share similar themes such as an overload process triggering illness onset, the need for restoration of depleted energy, external causal attributions and the characteristics of people suffering from these illnesses. However, these themes are expressed in either psychological or medical terms according to the historical background. Despite their similarities, there have been few direct comparisons of the two concepts. Culture, illness perceptions and accountability are important issues in both conditions and could contribute to their differences. Comparing burnout and CFS within one sample frame, thus looking beyond the psychology/medicine divide, could be a useful first step towards understanding their relationship.

Then add in Reuters article: https://www.reuters.com/business/he...ked-with-chronic-fatigue-syndrome-2025-08-06/

Note sole use of Chronic Fatigue Syndrome
Scientists who were not involved in the study said using volunteers who self-reported chronic fatigue syndrome rather than restricting participation to those with a diagnosis from a medical professional somewhat weakened its conclusions. They called for larger studies to replicate the results.

Add to Carson's comment on SMC, online before the press review at 11.00 p.m. : https://www.sciencemediacentre.org/...deme-genome-wide-association-study-of-me-cfs/

There's the bias in her commentary last night coming through. @Joan Crawford


Edit to tidy up research reference.
 
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There were two parts to this. The study was of people who reported they had a diagnosis from a health professional. The study screening questionnaire also asked people about their symptoms. Only people who met the criteria for either IOM or Canadian consensus definitions were invited to provide DNA samples. I'm not sure, but I think about 85% of people who signed up saying they had a diagnosis from a health professional also met the criteria.

DecodeME included a question on postexertional malaise that went beyond asking about simple exertion intolerance stressing the need for an extending period of symptom flare. Though, as this is a media thread, I don't want to start an extended debate about that here.

But I want to clarify this isn't self diagnosis, it's not even simply self report of a medical diagnosis. It won't be perfect, but I think it will be pretty good.
I’ve posted a response to this on the preprint thread as it’s about the study design and interpretation of the data: https://www.s4me.info/threads/initi...codeme-collaboration.45490/page-8#post-630925
 
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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Thanks, I was able to read this on an internet archive but don't have an active subscription. The version I read had just one comment from a 'Mister mister', the first comment apparently, and it was woefully ignorant and in need of rebuffing, maintaining a psychological origin for the condition along with a jumble of other medical conditions. Does anyone have access? I assume there must be more comments now.
 
Thanks, I was able to read this on an internet archive but don't have an active subscription. The version I read had just one comment from a 'Mister mister', the first comment apparently, and it was woefully ignorant and in need of rebuffing, maintaining a psychological origin for the condition along with a jumble of other medical conditions. Does anyone have access? I assume there must be more comments now.
A trick I discovered is that if you google an FT headline, in this case “Chronic fatigue patients have different genes, study finds”, and click on the FT link from the Google search results, you can read the article for free without signing in. NB if you then copy and paste the URL of the FT page it won’t work.

I’ve just read the article. Some of the comments below the article are shockingly ignorant and offensive. It just shows what we’re up against, how important this research is, and how important it is to get the messaging right.
 
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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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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.]
Thank you for bring up her bit and saying this. I had a lot of issues with what she said and I sensed the interviewer krishnan guru Murthy was realising she was going off the rails too.

Talking about the 1.3m who might have me-like symptoms instead of holding the line from the brief and then missing out the bit about research being needed to make people better before combining that figure with talking about work was just her inferring 1.3m don’t work which is both untrue and risks actually creating the old stigma that it’s just mildly ill people who are work shy/lots of people who don't work, where I'd rather focus on the ill part (and of course htat then might affect people in different ways, including how hard it makes it for those in work who have an illness that has misinformation about it so can't get it understood or the right adjustments). It also undermines because it’s left the door open for the bps nonsense suggesting instead of it being the right group of very ill diagnosed people it was, who all need help and do what they can work wise but get no care, she’s sacrificed their aid time to talk about ‘the rest’ she wanted to add in, if we aren't careful and precise and I'm not sure we have to go this route anyway for the benefits to make sure they do reach all those people. Without realising it that’s almost whataboutery where under self-kidding oneself you are being inclusive to the future milder me-like you are excluding the actual group from their own illness and care and directing focus to others. We don't need to focus on everything at once, when we need to get how serious it is and how robust this research is understood etc.
 
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The main lines of attack are now becoming clear:

- this research was irretrievably biased by the involvement of biased activist patients
- participants didn’t have HCP-diagnosed ME/CFS, they self-selected by questionnaire
- associations between ME/CFS and certain genetic regions could be as a result of genes in those regions causing psychological maladjustment, and can’t necessarily be linked to meaningful immune or neurological dysfunction
- even if there is a physiological component, that is true of other psychological and psychiatric illnesses because of mind-body links, and wider evidence still suggests this is a psychological illness requiring psychological treatments
- no major observable abnormalities of physiology mean this must be a psychological problem whatever gene correlations there may be.

So, it’s more of that “scientific illiteracy” I was talking about upthread - when certain scientists seem mysteriously unable to comprehend plain English when it undermines their interests.

AKA the well known phenomenon that “It is difficult to get a man to understand something, when his salary depends on his not understanding it.”
 
associations between ME/CFS and certain genetic regions could be as a result of genes in those regions causing psychological maladjustment, and can’t necessarily be linked to meaningful immune or neurological dysfunction
That’s just repeating the same dualist dogma about how thoughts somehow exists independently of the physical processes, but are simultaneously able to influence physical processes.

They can’t have their cake and eat it too.
 
The main lines of attack are now becoming clear:

- this research was irretrievably biased by the involvement of biased activist patients
- participants didn’t have HCP-diagnosed ME/CFS, they self-selected by questionnaire
- associations between ME/CFS and certain genetic regions could be as a result of genes in those regions causing psychological maladjustment, and can’t necessarily be linked to meaningful immune or neurological dysfunction
- even if there is a physiological component, that is true of other psychological and psychiatric illnesses because of mind-body links, and wider evidence still suggests this is a psychological illness requiring psychological treatments
- no major observable abnormalities of physiology mean this must be a psychological problem whatever gene correlations there may be.

So, it’s more of that “scientific illiteracy” I was talking about upthread - when certain scientists seem mysteriously unable to comprehend plain English when it undermines their interests.

AKA the well known phenomenon that “It is difficult to get a man to understand something, when his salary depends on his not understanding it.”

The dogs bark, but the caravan moves on.
 
I've gone through this thread so far and summarised all the media so far for posting in the News in Brief this weekend.
In case it's helpful, here's what we have so far:

DecodeME website
Initial DecodeME DNA Results
A brief article that summarises the main findings, including: "Eight genetic signals have been identified... The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease...These signals align with how people with ME/CFS describe their illness... Another likely gene is related to chronic pain. None are related to depression or anxiety."

FAQ page answers some frequently asked questions, including "How definite are these results?"
DecodeME blog: X marks the spot where ME/CFS biology can be discovered
Gives a clear explaination for non-scientists of the study's methods, findings and implications for future research.
"The genetic signals are like crosses on a treasure map, pointing to hidden biology."
Article | Thread

Press release University of Edinburgh
Key genetic differences found in people with ME/CFS
"Scientists have discovered that people diagnosed with ME/CFS have significant differences in their DNA, offering the first robust evidence that genes contribute to a person’s chance of developing the disease."
Outlines the findings clearly and the implications. Includes quotes from the three project leaders, Chris Ponting, Andy Devereux-Cooke and Sonya Chowdhury.
Press release | Thread

Science media

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

Science Possible genetic clues to ME/chronic fatigue syndrome identified in massive study
DNA analysis of more than 15,500 people with the debilitating condition identifies eight tentative “genetic signals”
Accompanied by a photo of an empty shoes Millions Missing protest, Science provides a thorough article outlining the research, its findings, quotes from the press conference and the next steps.
"Action for ME and the University of Edinburgh are spearheading another project, PRIME, set to launch in October with nearly £850,000 of U.K. government funding. That work aims to generate new research collaborations into the genetics and disease mechanisms of ME/CFS, as well as improve patient and public involvement in research."

Live Science Huge study of ME/CFS reveals genetic 'hotspots' linked to the debilitating syndrome
A large study of ME/CFS included more than 15,000 people and identified eight locations in the genome linked to the disease.

Science Media Centre expert reaction to unpublished preprint on the DecodeME genome-wide association study of ME/CFS
Dr Jackie Cliff "By providing solid biological evidence of disease-susceptibility, this study should stimulate vigorous research in the ME/CFS area."
Prof Alan Carson makes an unhelpful comment that misreports the diagnostic basis of participants in the study.
Dr Alena Pance "This is a great advance towards understanding the illness better and most importantly towards developing diagnostic tools to facilitate appropriate healthcare."
Dr Amy Mason "Interestingly they find no evidence that depression and ME/CFS have shared genetic links, but do find evidence of both pain and the immune system being involved. This fits with what patients often report and helps shift the narrative; ME/CFS is not psychosomatic but linked to measurable differences in genes affecting pain and immunity."

General media

Channel 4 News Nine minute segment on publication day, 6th August
Quote from Broken Battery who provide the YouTube copy:
"The segment includes interviews with study lead Prof Chris Ponting, a patient participant, and Sonia Chowdhury from Action for ME. It also revisits the case of Maeve Boothby O’Neill, who died of malnutrition due to severe ME, highlighting the urgent need for better NHS care. MP Tessa Munt calls for increased government funding and recognition of MECFS as a serious, medically proven illness."

BBC Scotland TV News at 7 Six minute recording and notes by Broken Battery
"The report features patient Amanda Stevenson, who shares how the illness has shaped her life and the lack of treatment options in Scotland. Prof Chris Ponting explains how this breakthrough could finally shift stigma and drive further research."

BBC Radio 4 Today program: 6 minutes recorded and described by Broken Battery
"Professor Chris Ponting explains how researchers identified eight regions in human DNA linked to increased risk of developing ME/CFS, marking a turning point in scientific understanding.The segment also includes 19-year-old Lucy, who describes how difficult it was to be taken seriously when she first became ill at age 11."

BBC Radio 5 live Hour long phone in program

The Times Breakthrough genetic study offers treatment hope for ME patients
Experts say ‘groundbreaking’ findings will be transformative as well as helping to end myth that the condition is ‘all in the mind’
"Ponting said the study would enable medical researchers to have a “laser-like” focus on where to target treatments or repurpose existing drugs at a “breakneck speed”. He added: “I’m actually quite angry that this [genetic analysis] was not done 15 years ago, just like for every other major disease.”"

The Guardian 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

The Telegraph ME is a real illness, genetic study shows
Breakthrough provides ‘credibility and validity’ for sufferers of the disease known as chronic fatigue syndrome

The Independent The key genetic difference ME sufferers have from others – and what it means
Scientists said the findings offer the first robust evidence that genes contribute to a person’s chance of developing the disease

Financial Times Chronic fatigue patients have different genes, study finds

Reuters Repeat Carson's SMC misdescription of inclusion criteria.

Eastern Daily Times

If anyone wants to go through this and let me know if I've missed anything, either complete items or useful short quotes that are worth highlighting, let me know.
 
If anyone wants to go through this and let me know if I've missed anything, either complete items or useful short quotes that are worth highlighting, let me know.
I think you’ve missed this one:
Daily Mail “Scientists FINALLY crack mystery of chronic fatigue syndrome - major breakthrough sparks new hope”: https://www.msn.com/en-ae/news/othe...ajor-breakthrough-sparks-new-hope/ar-AA1K2iLr

Direct link the the Daily Mail article: https://www.dailymail.co.uk/health/...e-breakthrough-cause-effective-treatment.html
 
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