DecodeME in the media
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Thank you for bring up her bit and saying this. I had a lot of issues with what she said and I sensed the interviewer krishnan guru Murthy was realising she was going off the rails too.
Talking about the 1.3m who might have me-like symptoms instead of holding the line from the brief and then missing out the bit about research being needed to make people better before combining that figure with talking about work was just her inferring 1.3m don’t work which is both untrue and risks actually creating the old stigma that it’s just mildly ill people who are work shy/lots of people who don't work, where I'd rather focus on the ill part (and of course htat then might affect people in different ways, including how hard it makes it for those in work who have an illness that has misinformation about it so can't get it understood or the right adjustments). It also undermines because it’s left the door open for the bps nonsense suggesting instead of it being the right group of very ill diagnosed people it was, who all need help and do what they can work wise but get no care, she’s sacrificed their aid time to talk about ‘the rest’ she wanted to add in, if we aren't careful and precise and I'm not sure we have to go this route anyway for the benefits to make sure they do reach all those people. Without realising it that’s almost whataboutery where under self-kidding oneself you are being inclusive to the future milder me-like you are excluding the actual group from their own illness and care and directing focus to others. We don't need to focus on everything at once, when we need to get how serious it is and how robust this research is understood etc.
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I've gone through this thread so far and summarised all the media so far for posting in the News in Brief this weekend.
In case it's helpful, here's what we have so far:
If anyone wants to go through this and let me know if I've missed anything, either complete items or useful short quotes that are worth highlighting, let me know.
In case it's helpful, here's what we have so far:
DecodeME website
Initial DecodeME DNA Results
A brief article that summarises the main findings, including: "Eight genetic signals have been identified... The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease...These signals align with how people with ME/CFS describe their illness... Another likely gene is related to chronic pain. None are related to depression or anxiety."
FAQ page answers some frequently asked questions, including "How definite are these results?"
DecodeME blog: X marks the spot where ME/CFS biology can be discovered
Gives a clear explaination for non-scientists of the study's methods, findings and implications for future research.
"The genetic signals are like crosses on a treasure map, pointing to hidden biology."
Article | Thread
Press release University of Edinburgh
Key genetic differences found in people with ME/CFS
"Scientists have discovered that people diagnosed with ME/CFS have significant differences in their DNA, offering the first robust evidence that genes contribute to a person’s chance of developing the disease."
Outlines the findings clearly and the implications. Includes quotes from the three project leaders, Chris Ponting, Andy Devereux-Cooke and Sonya Chowdhury.
Press release | Thread
Science media
New Scientist Key genetic differences found in people with chronic fatigue syndrome
Science Possible genetic clues to ME/chronic fatigue syndrome identified in massive study
DNA analysis of more than 15,500 people with the debilitating condition identifies eight tentative “genetic signals”
Accompanied by a photo of an empty shoes Millions Missing protest, Science provides a thorough article outlining the research, its findings, quotes from the press conference and the next steps.
"Action for ME and the University of Edinburgh are spearheading another project, PRIME, set to launch in October with nearly £850,000 of U.K. government funding. That work aims to generate new research collaborations into the genetics and disease mechanisms of ME/CFS, as well as improve patient and public involvement in research."
Live Science Huge study of ME/CFS reveals genetic 'hotspots' linked to the debilitating syndrome
A large study of ME/CFS included more than 15,000 people and identified eight locations in the genome linked to the disease.
Science Media Centre expert reaction to unpublished preprint on the DecodeME genome-wide association study of ME/CFS
Dr Jackie Cliff "By providing solid biological evidence of disease-susceptibility, this study should stimulate vigorous research in the ME/CFS area."
Prof Alan Carson makes an unhelpful comment that misreports the diagnostic basis of participants in the study.
Dr Alena Pance "This is a great advance towards understanding the illness better and most importantly towards developing diagnostic tools to facilitate appropriate healthcare."
Dr Amy Mason "Interestingly they find no evidence that depression and ME/CFS have shared genetic links, but do find evidence of both pain and the immune system being involved. This fits with what patients often report and helps shift the narrative; ME/CFS is not psychosomatic but linked to measurable differences in genes affecting pain and immunity."
General media
Channel 4 News Nine minute segment on publication day, 6th August
Quote from Broken Battery who provide the YouTube copy:
"The segment includes interviews with study lead Prof Chris Ponting, a patient participant, and Sonia Chowdhury from Action for ME. It also revisits the case of Maeve Boothby O’Neill, who died of malnutrition due to severe ME, highlighting the urgent need for better NHS care. MP Tessa Munt calls for increased government funding and recognition of MECFS as a serious, medically proven illness."
BBC Scotland TV News at 7 Six minute recording and notes by Broken Battery
"The report features patient Amanda Stevenson, who shares how the illness has shaped her life and the lack of treatment options in Scotland. Prof Chris Ponting explains how this breakthrough could finally shift stigma and drive further research."
BBC Radio 4 Today program: 6 minutes recorded and described by Broken Battery
"Professor Chris Ponting explains how researchers identified eight regions in human DNA linked to increased risk of developing ME/CFS, marking a turning point in scientific understanding.The segment also includes 19-year-old Lucy, who describes how difficult it was to be taken seriously when she first became ill at age 11."
BBC Radio 5 live Hour long phone in program
The Times Breakthrough genetic study offers treatment hope for ME patients
Experts say ‘groundbreaking’ findings will be transformative as well as helping to end myth that the condition is ‘all in the mind’
"Ponting said the study would enable medical researchers to have a “laser-like” focus on where to target treatments or repurpose existing drugs at a “breakneck speed”. He added: “I’m actually quite angry that this [genetic analysis] was not done 15 years ago, just like for every other major disease.”"
The Guardian Scientists find link between genes and ME/chronic fatigue syndrome
Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness
The Telegraph ME is a real illness, genetic study shows
Breakthrough provides ‘credibility and validity’ for sufferers of the disease known as chronic fatigue syndrome
The Independent The key genetic difference ME sufferers have from others – and what it means
Scientists said the findings offer the first robust evidence that genes contribute to a person’s chance of developing the disease
Financial Times Chronic fatigue patients have different genes, study finds
Reuters Repeat Carson's SMC misdescription of inclusion criteria.
Eastern Daily Times
Initial DecodeME DNA Results
A brief article that summarises the main findings, including: "Eight genetic signals have been identified... The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease...These signals align with how people with ME/CFS describe their illness... Another likely gene is related to chronic pain. None are related to depression or anxiety."
FAQ page answers some frequently asked questions, including "How definite are these results?"
DecodeME blog: X marks the spot where ME/CFS biology can be discovered
Gives a clear explaination for non-scientists of the study's methods, findings and implications for future research.
"The genetic signals are like crosses on a treasure map, pointing to hidden biology."
Article | Thread
Press release University of Edinburgh
Key genetic differences found in people with ME/CFS
"Scientists have discovered that people diagnosed with ME/CFS have significant differences in their DNA, offering the first robust evidence that genes contribute to a person’s chance of developing the disease."
Outlines the findings clearly and the implications. Includes quotes from the three project leaders, Chris Ponting, Andy Devereux-Cooke and Sonya Chowdhury.
Press release | Thread
Science media
New Scientist Key genetic differences found in people with chronic fatigue syndrome
Science Possible genetic clues to ME/chronic fatigue syndrome identified in massive study
DNA analysis of more than 15,500 people with the debilitating condition identifies eight tentative “genetic signals”
Accompanied by a photo of an empty shoes Millions Missing protest, Science provides a thorough article outlining the research, its findings, quotes from the press conference and the next steps.
"Action for ME and the University of Edinburgh are spearheading another project, PRIME, set to launch in October with nearly £850,000 of U.K. government funding. That work aims to generate new research collaborations into the genetics and disease mechanisms of ME/CFS, as well as improve patient and public involvement in research."
Live Science Huge study of ME/CFS reveals genetic 'hotspots' linked to the debilitating syndrome
A large study of ME/CFS included more than 15,000 people and identified eight locations in the genome linked to the disease.
Science Media Centre expert reaction to unpublished preprint on the DecodeME genome-wide association study of ME/CFS
Dr Jackie Cliff "By providing solid biological evidence of disease-susceptibility, this study should stimulate vigorous research in the ME/CFS area."
Prof Alan Carson makes an unhelpful comment that misreports the diagnostic basis of participants in the study.
Dr Alena Pance "This is a great advance towards understanding the illness better and most importantly towards developing diagnostic tools to facilitate appropriate healthcare."
Dr Amy Mason "Interestingly they find no evidence that depression and ME/CFS have shared genetic links, but do find evidence of both pain and the immune system being involved. This fits with what patients often report and helps shift the narrative; ME/CFS is not psychosomatic but linked to measurable differences in genes affecting pain and immunity."
General media
Channel 4 News Nine minute segment on publication day, 6th August
Quote from Broken Battery who provide the YouTube copy:
"The segment includes interviews with study lead Prof Chris Ponting, a patient participant, and Sonia Chowdhury from Action for ME. It also revisits the case of Maeve Boothby O’Neill, who died of malnutrition due to severe ME, highlighting the urgent need for better NHS care. MP Tessa Munt calls for increased government funding and recognition of MECFS as a serious, medically proven illness."
BBC Scotland TV News at 7 Six minute recording and notes by Broken Battery
"The report features patient Amanda Stevenson, who shares how the illness has shaped her life and the lack of treatment options in Scotland. Prof Chris Ponting explains how this breakthrough could finally shift stigma and drive further research."
BBC Radio 4 Today program: 6 minutes recorded and described by Broken Battery
"Professor Chris Ponting explains how researchers identified eight regions in human DNA linked to increased risk of developing ME/CFS, marking a turning point in scientific understanding.The segment also includes 19-year-old Lucy, who describes how difficult it was to be taken seriously when she first became ill at age 11."
BBC Radio 5 live Hour long phone in program
The Times Breakthrough genetic study offers treatment hope for ME patients
Experts say ‘groundbreaking’ findings will be transformative as well as helping to end myth that the condition is ‘all in the mind’
"Ponting said the study would enable medical researchers to have a “laser-like” focus on where to target treatments or repurpose existing drugs at a “breakneck speed”. He added: “I’m actually quite angry that this [genetic analysis] was not done 15 years ago, just like for every other major disease.”"
The Guardian Scientists find link between genes and ME/chronic fatigue syndrome
Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness
The Telegraph ME is a real illness, genetic study shows
Breakthrough provides ‘credibility and validity’ for sufferers of the disease known as chronic fatigue syndrome
The Independent The key genetic difference ME sufferers have from others – and what it means
Scientists said the findings offer the first robust evidence that genes contribute to a person’s chance of developing the disease
Financial Times Chronic fatigue patients have different genes, study finds
Reuters Repeat Carson's SMC misdescription of inclusion criteria.
Eastern Daily Times
If anyone wants to go through this and let me know if I've missed anything, either complete items or useful short quotes that are worth highlighting, let me know.
OrganicChilli
Senior Member (Voting Rights)
I think the Evening Standard is missing and was mentioned on this thread.
People with ME have key genetic differences to other people, study finds
The DecodeME study is described the largest of its kind in the world.
www.standard.co.uk
Robert 1973
Senior Member (Voting Rights)
I think you’ve missed this one:
Direct link the the Daily Mail article: https://www.dailymail.co.uk/health/...e-breakthrough-cause-effective-treatment.html
Dakota15
Senior Member (Voting Rights)
wigglethemouse
Senior Member (Voting Rights)
I've not seen much in the US press that I read so far. Usually ME Action do a very good job of spreading the word for major ME/CFS news. I think a genetics story would be very powerful if it included a mention of the Stanford WGS study that also highlighted the immune and nervous system. That would bring a US connection.
The US tends to pick up on stories if the BBC has an article. The BBC has a relationship with one of the US news broadcasters (CBS?) and they share stories that are syndicated across the country to the local papers. It's strange not to see something on the BBC.
Maybe there will be a second wave of news.
The US tends to pick up on stories if the BBC has an article. The BBC has a relationship with one of the US news broadcasters (CBS?) and they share stories that are syndicated across the country to the local papers. It's strange not to see something on the BBC.
Maybe there will be a second wave of news.
@Trish I'm not sure that this piece in Newsweek, which I think is a US publication, has been posted already?
A lot of quotes from Prof Chris Ponting, Prof Juilia Newton, Dr Anthony Komaroff and Simon Wessely.
www.newsweek.com
A lot of quotes from Prof Chris Ponting, Prof Juilia Newton, Dr Anthony Komaroff and Simon Wessely.
Study finds genetics could cause this chronic condition
ME/CFS is a long-term condition that can affect different parts of the body, resulting in a wide range of debilitating symptoms.
www.newsweek.com
Evergreen
Senior Member (Voting Rights)
Julia Newton's quotes were heartening:@Trish I'm not sure that this piece in Newsweek, which I think is a US publication, has been posted already?
A lot of quotes from Prof Chris Ponting, Prof Juilia Newton, Dr Anthony Komaroff and Simon Wessely.
Study finds genetics could cause this chronic condition
ME/CFS is a long-term condition that can affect different parts of the body, resulting in a wide range of debilitating symptoms.
And I liked Ponting's Churchillian "end of the beginning" in the Channel 4 interview yesterday.
Mij
Senior Member (Voting Rights)
Dakota15
Senior Member (Voting Rights)
New York Post: 'Debilitating illness once dismissed as ‘yuppie flu’ actually has genetic causes: study'
'Researchers are calling the discovery a “wakeup call” that could finally shift public perception of the poorly understood condition..'
“These results are groundbreaking"
'Researchers are calling the discovery a “wakeup call” that could finally shift public perception of the poorly understood condition..'
“These results are groundbreaking"
Dakota15
Senior Member (Voting Rights)
Has this been shared?
The Times: 'Lack of ME research because of ‘medical misogyny’, says top scientist'
'Professor Chris Ponting, who led a groundbreaking study into the disease, says it is ‘highly stigmatised and incredibly female-biased’'
The Times: 'Lack of ME research because of ‘medical misogyny’, says top scientist'
'Professor Chris Ponting, who led a groundbreaking study into the disease, says it is ‘highly stigmatised and incredibly female-biased’'
Wyva
Senior Member (Voting Rights)
The news of Decode ME has reached Hungary too, although so far I have seen only one such article. Portfolio is the largest business/economic news site in the country. They wrote their article based on the one in the Financial Times but they don't really go into details about the study too much. They emphasize that ME/CFS has been stigmatized and neglected and Decode ME may finally help take the disease more seriously. (They gave it a very stupid title though, although that was kind of expected.)
In Hungarian: https://www.portfolio.hu/gazdasag/2...-mostanaban-meglepo-felfedezest-tettek-778777
Google translated version
In Hungarian: https://www.portfolio.hu/gazdasag/2...-mostanaban-meglepo-felfedezest-tettek-778777
Google translated version
MrMagoo
Senior Member (Voting Rights)
Non-paywalled at https://archive.is/SEmvj
