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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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.
 
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 man, 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.
 
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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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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.
 
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.
 
hotblack said:
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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It's made the Rhyl Journal, what's the BBC playing at?
 
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