DecodeME in the media

From the Science article:
Doug Speed, a statistical geneticist at Aarhus University who was not involved in the work, praised the team’s approach but cautioned that the genetic associations seem to explain only a small fraction of someone’s ME/CFS risk—leaving most of the variation unexplained. “This is largely to be expected,” he notes in an email. For many human diseases, “risk is influenced by many 1000s of genetic variants, each of which on its own has only a tiny influence.”

At a press conference this morning, members of the DecodeME team said more than 85% of participants had given consent for their data to be shared with other approved researchers. Sonya Chowdhury, CEO of the U.K. charity Action for ME and a co-author on the preprint, added, “While more has to be done to build on our findings to lead to treatments and diagnostics, our findings will provide credibility and validity to the experience of the people with ME.”

Andy Devereux-Cooke, who has ME/CFS and is involved in patient and public engagement on the DecodeME study, told journalists this morning that the GWAS marked an important step for the community, many of whom have felt abandoned by the medical establishment. “Even though it does not provide all the answers [and] does not provide practical assistance,” he says, “it is a welcome drop in the ocean toward turning the tide.”

The project is part of a “notable increase” in ME/CFS research in recent years, Bosch says—a trend he attributes to a mix of patient advocacy, the failure of psychological and behavioral explanations for the condition, and increasing awareness of ME/CFS thanks to its similarities to Long Covid. Bosch’s team is currently collaborating with patient organizations in the Netherlands on a large study of ME/CFS, as well as Long Covid and other postviral conditions. The project, which has enrolled several hundred people so far, will analyze muscle and postmortem brain tissue as well as brain images of patients, he says.
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dratalanta said:
I used to think scientific illiteracy was when otherwise intelligent people can’t understand science.

But it seems scientific illiteracy is actually when scientists can’t understand straightforward writing.

Perhaps scientific illiteracy syndrome is a side effect of being clever enough to believe six impossible things before breakfast. A very clever psychiatrist should do a study of it, alongside that study of catastrophising behaviour among elite psychiatric researchers which I proposed here once before.

But enough of these garlanded fools. They have stolen enough of our lives.
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There's a common trope about how every disaster movie begins with people ignoring scientists.

It's lacking the other side of the coin: it's usually other scientists who ignore them, have different opinions or interpretations, sometimes even competing interests or biases.
 
Perrier said:
Just read a post on twitter where the chap says our genes have always been the same, yet 100 years ago there was 90% less chronic illness. He suggests that we are living in "mass poisoning' due to environmental factors, and these are causing illness. He suggests pin pointing genes will not lead far. So my question: is there any validity to his view.
In other words, is it a question of some fragility in some genetically susceptible folks, and add in modern environmental challenges, and bang--they get ME.
This is not a genetic disorder like cystic fibrosis of course. Just trying to get all this straight.
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I was reading only today somewhere on the forum, can't remember where now, an article about the long term chronic illness in patients following the 1918 Flu pandemic, a study in Africa, during the years following that pandemic. The article was comparing situation with Long Covid I think back in 2020. I think it may have been Nightsong that posted it but I could be completely wrong.
 
Yann04 said:
seems very dubious claim.

Just because something wasn’t measured doesn’t mean it didn’t exist.

And well, back then, people were often left to die…
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Indeed. We don't have the figures on chronic illness, and folks did not live as long. But in my parents' generation who all went through WW2, and amongst their very many friends, there was no talk ever about something like this. I specifically asked, if they could remember someone bed bound for years, as they knew about my daughter. One person told me that there was someone in their village who was "feeble" and couldn't work hard but nothing about being bed bound and non functional for decades. Just trying to sort out the chap's statement.
 
Perrier said:
Just read a post on twitter where the chap says our genes have always been the same, yet 100 years ago there was 90% less chronic illness. He suggests that we are living in "mass poisoning' due to environmental factors, and these are causing illness. He suggests pin pointing genes will not lead far. So my question: is there any validity to his view.
In other words, is it a question of some fragility in some genetically susceptible folks, and add in modern environmental challenges, and bang--they get ME.
This is not a genetic disorder like cystic fibrosis of course. Just trying to get all this straight.
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I’d want to see scientific stats to support his assertions…
Anyone can come up with a theory on twitter
 
Perrier said:
Indeed. We don't have the figures on chronic illness, and folks did not live as long. But in my parents' generation who all went through WW2, and amongst their very many friends, there was no talk ever about something like this. I specifically asked, if they could remember someone bed bound for years, as they knew about my daughter. One person told me that there was someone in their village who was "feeble" and couldn't work hard but nothing about being bed bound and non functional for decades. Just trying to sort out the chap's statement.
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History is full of examples of women who were bedbound for years, from St Julie Billiart to Florence Nightingale
 
Re the C4 piece:
There is also the discussion afterwards which is well worth watching, good points made by Teresa Munt MP. She mentioned that the Delivery Plan was a flop. People with M.E. desperate to lead a normal life. Decades of being treated poorly. People living in darkened rooms. People need recognition and not to be dismissed.

Hopefully someone will post a clip with this too idc.
 
Perrier said:
He's a scientist, who strongly believes we are all being poisoned by our environments, plastics, wall paint, dishes, furniture, etc. He's also an Me patient.
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Oh well he will surely have a list of stats on deaths in the last 100 years, a list of these chemicals causing the poisoning and the year they became introduced and where, and associated deaths, he wouldn’t just be positing it with no research. I’m sure he has a list of the poisonous elements beyond “furniture, dishes etc”.
I mean, look at the stats and info in this preprint that we are discussing.a scientific study.
 
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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