DecodeME in the media

Sean said:
It is all marketing. His underlying belief about ME/CFS being a psycho-behavioural problem has not changed one bit, since his first comments on it in the formal literature back in the mid-1980s.

Don't listen to what Wessely claims to believe, look at what he actually does, very consistently.
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I don't believe what he says because I've seen what he did;)
 
IFL Science: '8 Key DNA Regions More Likely To Be Altered In People With ME/CFS, Finds 27,000-Strong Study'

'The genetic signals are associated with the immune system and nervous system, matching symptoms patients report.'

ABC Net: 'Living with Chronic Fatigue Syndrome'

'The world's biggest genetic study on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome has found solid proof that your genes can influence whether you develop this debilitating illness, that's been ignored and dismissed for decades.

We ask experts in the field Dr Richard Schloeffel, long-time researcher of biomarkers in patients with ME/CFS and Anne Wilson, CEO of national patient support organisation Emerge Australia:

Is this latest discovery likely to change how ME/CFS is viewed, treated and understood?'
 
Trish said:
I haven't seen on this thread yet any links to articles by ME organisations. Have I missed them?
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Statement from BACME: https://www.s4me.info/threads/unite...clinicians-in-me-cfs.7900/page-27#post-631515

Dolphin said:
Source: The British Association of Clinicians in ME/CFS (BACME)
Date: August, 7, 2025

BACME statement regarding DecodeME

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The British Association of Clinicians in ME/CFS (BACME) welcomes the publication of findings from the DecodeME study, the largest genetic investigation into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to date.

This robust research has identified eight genetic markers that are significantly more common in people with ME/CFS compared to the general population. These markers are linked to both the immune and nervous systems, providing important evidence for immunological and neurological involvement in this complex and often misunderstood condition.

These findings represent a major step forward in validating the biological basis of ME/CFS. They offer hope for the development of a future diagnostic test and bring long overdue recognition to those living with the condition.

The DecodeME research aligns with the Department of Health and Social Care's Delivery Plan, which emphasises the importance of research, improving understanding of individuals experience of ME/CFS, and enhancing education for health professionals.

BACME strongly supports continued research into the biological mechanisms of ME/CFS and looks forward to seeing these insights translated into clinical practice - ultimately improving diagnosis, treatment, and care for everyone affected by ME/CFS.
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Surprisingly good!
 
Hoopoe said:
Carson gives the impression of citing an authoritative source on the high misdiagnosis rates in ME/CFS diagnosed by questionnaire when this is not the case.

"Diagnosis was done by questionnaire" makes it sound like patients filled in questionnaires about symptoms, while they were asked about diagnosis received by a health professional.

On the NIH study, he presumably refers to these numbers "27 underwent in-person research evaluation and 17 were determined to have PI-ME/CFS by a panel of clinical experts with unanimous consensus." These 27 were all people with documented diagnosis of ME/CFS by a physician. If I remember right at this step there were also other checks to further exclude anyone with certain comorbidities. So misdiagnosis is high if we define misdiagnosis as including not just false diagnosis, but also having significant neurological or fatiguing illnesses or lyme disease, and there not being a consensus among the panel that the person really had ME/CFS.

Even if we assume significant misdiagnosis, it still leave 8 statistically significant hits.
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Yeah, I decided to deal only with the substantive part of their argument, rather than the details which were a mess. Because in an ideal world, yes, DecodeME would have started with 26,000 patients from GP surgeries or specialist clinics. But with 8000 patients treated per year in the UK (according to Collin & Crawley 2017 who cite Collin et al. 2012 for this), and not all diagnosed with ME/CFS, it would take forever to get to that number. Not feasible.

What he does manage to do is put out into the public sphere that "diagnosis by questionnaire" is a thing in ME/CFS - marvellously effective at undermining the whole illness, patients and health professionals in one fell swoop.

I don't know what study or statement he's referring to. The NIH intramural study wouldn't make sense with his argument. Only the 17 cases filled out questionnaires. Before that, only 4/27 were diagnosed with something else - that's 15%. The other 6 who were excluded were either not post-infectious (4) or withdrew (2). He could use it to argue that misdiagnosis by physicians is common in ME/CFS.

Ariel said:
Need to point out these people are conflating self-reports of diagnosis of ME/CFS by a health professional with self-diagnosis of ME/CFS.
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Yeah, this conflation irks me too!
 
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A couple in French language, no high profile coverage but some specialised:

www.medi-sphere.be

Le syndrome de fatigue chronique lié aux gènes, démontre une étude britannique inédite

Pour la première fois, des scientifiques britanniques ont démontré qu'un facteur génétique était à la base du développement du syndrome de fatigue chronique (encéphalomyélite myalgique, EM/SFC), rapporte le quotidien The Guardian. Il s'agit de la plus importante étude menée dans ce domaine.
www.medi-sphere.be www.medi-sphere.be

www.7sur7.be

Le syndrome de fatigue chronique lié aux gènes, établit une étude

Une étude britannique a identifié un lien entre des gènes et le syndrome de fatigue chronique, ouvrant la voie à une meilleure compréhension et, peut-être, à un futur traitement.
www.7sur7.be www.7sur7.be

www.courrierinternational.com

Des liens entre gènes et syndrome de fatigue chronique mis en évidence pour la première fois

Les personnes souffrant d’encéphalomyélite myalgique auraient huit “signaux génétiques” qui diffèrent de celles qui n’ont pas cette maladie, révèle une étude de...
www.courrierinternational.com www.courrierinternational.com

trustmyscience.com

Une étude éclaire les risques génétiques associés à la fatigue chronique

Le syndrome de fatigue chronique (SFC), également appelé encéphalomyélite myalgique (EM), se manifeste par une fatigue sévère et invalidante, de longue dur...
trustmyscience.com trustmyscience.com
 
Nightsong said:
Something I have noticed about the media coverage - not really from the Edinburgh team directly, but in quotes & interview comments from advocates & patient & charity representatives - even in coverage from otherwise sympathetic journalists - is that these & other findings continue to be presented as "proving" that ME/CFS is not "all in the mind".

I think that, after all this time, advocates need to move past this narrative; by even mentioning it, it introduces the idea into the mind of the reader, who might not have been thinking about it at all but, if the point is continually insisted upon, might think "perhaps they doth protest too much". It seems too apologetic, too defensive, too potentially counterproductive. I think we need to move to a stage where it is simply assumed that ME/CFS is a disease like any other; if the quote would read badly if "ME/CFS" was replaced with "MS", it needs to be re-worded.

Talk about what patients actually need, talk about the avenues for future research - anything but this narrative, which just serves to give further oxygen to psychobehaviouralism.
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I think a distinction needs to be made here between patients speaking to their own experience, which may well include being told that there is nothing wrong with them and it's all in the head, and advocates who are trying to speak on behalf of the community. The first should be allowed to tell their own story, while the second should indeed move beyond that narrative and on to practicalities on what is needed and what needs to change.
 
Andy said:
I think a distinction needs to be made here between patients speaking to their own experience, which may well include being told that there is nothing wrong with them and it's all in the head, and advocates who are trying to speak on behalf of the community. The first should be allowed to tell their own story, while the second should indeed move beyond that narrative and on to practicalities on what is needed and what needs to change.
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Really well put. I hadn’t made that distinction in my own head but it’s really important.
 
Maat said:
@bobbler managed to find it. I could only find the first half hour of the 11pm of the extended press review which covered Ukraine and Gaza, on the Sky press review on their YouTube channel.

She transcribed from what she found online.
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It disappeared on me when I checked back to it so I don’t have it anymore. So if anyone else has a copy it’s still needed.
 
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