DecodeME in the media

[Sly Saint]

Channel 4, includes Chris Ponting and Sarah Chadfield interview

ME linked to your genetics – early study indicates

Scientists said the findings offer the first robust evidence that genes contribute to a person’s chance of developing the disease.

www.channel4.com

 

[Robert 1973]

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

it’s a shame they call it chronic fatigue syndrome and use Miranda Hart as an example of someone with the illness. It depressed me when I see her book in the lists of bestsellers.

 

[Maat]

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.

 

[Robert 1973]

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

 

[Adam pwme]

 

[Robert 1973]

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:

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

 

[hinterland]

Financial Times: https://www.ft.com/content/b82711ca-0842-4e73-9475-52435997e349

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.

 

[Robert 1973]

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 links from the Google search result, 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.