DecodeME in the media

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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You are correct. Medically confirmed.
 
Robert 1973 said:
It will be interesting to see if Richard Horton has anything to say about it in The Lancet.
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The only words I want to hear from that clown, and his fellow travelers, are 'sorry', and 'I resign'.
V.R.T. said:
Statistically, I think it's likely some of them are.
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And at well above the average rate for the general population.
Yann04 said:
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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.
 
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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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.
 
Simon M said:
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.
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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.
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Edited to change msn link to direct link.
 
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Joan Crawford said:
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?
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An interesting question, hopefully @Jonathan Edwards will pick up on this when he is back ashore.
 
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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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.
 
Joan Crawford said:
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.
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Probably repeating Carson fron his SMC comment that got it wrong about self diagnosis. Thus is misinformation spread.
 
Joan Crawford said:
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.
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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
 
Looks like some great reporting, a few hiccups and the usual suspects trying desperately to remain relevant. If only they’d shown such skepticism and caution around PACE and the theories they’ve been pushing for decades.

Can’t imagine why there is such a difference in tone. I’m sure there’s no conflict of interests or reputations on the line. /s

They should let go of these dysfunctional beliefs they have invested so much of their careers and professional reputations in. These were of course real but are not fixed unalterable things and their unhelpful attachment and coping behaviours are reversible by their own efforts if they choose to do so. We should do all we can to support them in this and give them a little bit of hope that they need so they can move on and have happier, more fulfilling and productive lives.

:D
 
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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@Joan Crawford I've found the sky press review from last night on Youtube - it was Psychotherapist and Broadcaster Lucy Beresford - https://www.lucyberesford.com/

Only the first half of last nights extended 1hr show (focussing on Ukraine and Gaza) is available on their Youtube. The second half hour of the programme covering the rest of the press reports which included the Guardian article isn't on Youtube.
 
Peter T said:
An interesting question, hopefully @Jonathan Edwards will pick up on this when he is back ashore.
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I think disease is now, or becoming, a legitimate term. The only question is whether or not it is a group of rather different diseases. But a lack of difference in gene background between men and women makes that a bit less likely.

Previously MECFS described an illness that qualified as a syndrome because we had reasonable grounds for suspecting a common process (disease). Now we have evidence that there is such a common process even if we have yet to piece together the steps.
 
Joan Crawford said:
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.
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Yes, this.
I was taken aback at my emotional reaction to the validation and my prosaic hubby said also felt a similar reaction. I feel I can hold my head higher in Dr's appointments now.
 
Snoopydog1 said:
I am wondering why I have heard nothing about this ground breaking study on BBC Radio 4 and have been listening from 5 am? Usually they report new findings and research of various illnesses but so far today (8 am) nothing?
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Maybe that's a good thing, given past history of BBC so called balance meaning they would probably get Carson on repeating his misinformation from his SMC comment.
 
Maat said:
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.



Edited to change msn link to direct lin
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Maat said:
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.



Edited to change msn link to direct link.
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The is not accurate and Reuters should print a correction; particularly bad from a news agency. Is anyone up to contacting them?
 
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