DecodeME in the media

[MrMagoo]

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.

You are correct. Medically confirmed.

 

[Sean]

It will be interesting to see if Richard Horton has anything to say about it in The Lancet.

The only words I want to hear from that clown, and his fellow travelers, are 'sorry', and 'I resign'.

Statistically, I think it's likely some of them are.

And at well above the average rate for the general population.

https://www.science.org/content/article/possible-genetic-clues-me-chronic-fatigue-syndrome-identified-massive-study

The poorly understood illness, which is estimated to affect many millions of people worldwide, is associated with debilitating symptoms including extreme exhaustion and difficulty thinking clearly.​

Good to see exhaustion being used, instead of fatigue or tiredness. Always been my preferred term.

 

[Adam pwme]

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.

 

[Simon M]

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.

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.

 

[Maat]

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.

Thanks for clarifying that @Simon M. I went in search the possible source of her comments (she was a pscyhotherapist, not psychologist as I incorrectly stated. I think this is where she got her information from; Reuters.

https://www.reuters.com/business/he...ked-with-chronic-fatigue-syndrome-2025-08-06/ heading and source explains it all.

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.

Edited to change msn link to direct link.

 

[Joan Crawford]

https://www.science.org/content/article/possible-genetic-clues-me-chronic-fatigue-syndrome-identified-massive-study

It's refreshing to see decent reporting and clearly written articles.

It's also interesting to see almost all articles are using the word disease.

I've been pondering this in relation to our upcoming guideline. I'm wondering if this study tips the evidence over to using the d word or is this still too soon?

 

[Peter T]

It's also interesting to see almost all articles are using the word disease.

I've been pondering this in relation to our upcoming guideline. I'm wondering if this study tips the evidence over to using the d word or is this still too soon?

An interesting question, hopefully @Jonathan Edwards will pick up on this when he is back ashore.

 

[Joan Crawford]

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.

Didn't see it. Who did they interview?

Why would a psychologist be commenting on a genetics study?

Apart from perhaps to note the psychological benefit which will likely result due to decent evidence in a rigorous, quality study which helps to explain their patients' suffering. This will be a huge positive boost for patients and their carers/family/friends who have often felt invalidated and isolated, sometimes for decades. You'd think they'd talk about that.

 

[Trish]

Didn't see it. Who did they interview?

Why would a psychologist be commenting on a genetics study?

Apart from perhaps to note the psychological benefit which will likely result due to decent evidence in a rigorous, quality study which helps to explain their patients' suffering. This will be a huge positive boost for patients and their carers/family/friends who have often felt invalidated and isolated, sometimes for decades. You'd think they'd talk about that.

Probably repeating Carson fron his SMC comment that got it wrong about self diagnosis. Thus is misinformation spread.