DecodeME in the media

[Trish]

Thanks.

 

[hotblack]

Great work @Trish
“Prof Alan Carson makes an unhelpful comment” is evergreen

 

[Dakota15]

Sharing

HuffPost UK: 'I Was Medically Gaslit For Years – This Study Finally Proves ME/CFS Is A Real Illness'

Newsweek: ''Study Finds Genetics Could Cause This Chronic Condition'

 

[wigglethemouse]

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.

 

[Alinda]

I feel like it may be because it's still a preprint

 

[Maat]

@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.

www.newsweek.com

 

[V.R.T.]

Sir Simon Wessely, a professor of psychological medicine at King's College London told Newsweek that there is already "ample evidence that ME/CFS is not the same as depression, but that previous depression increases the risk of developing ME/CFS, which needs explaining, and I would be surprised if genetics does not play some part in this."

He said that while it is understood ME/CFS is not an anxiety disorder, "anxiety can impede recovery."

"The fact that ME/CFS involves both excessive physical and mental fatigue and fatiguability after both physical and mental exertion already tells us that the causes are most likely to be central, i.e., the brain, rather than peripheral—these new findings reinforce that, but we are still a long way from knowing why," he said.

"Unravelling multigenic and multi factorial conditions such as ME/CFS is going to be a long haul, as those who have been researching the genetics of psychiatric disorders have already found out," he added.

They seem to have a gameplan in place. I think it will be hard to counter until these findings are built upon sadly.

 

[Ariel]

@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.

www.newsweek.com

I am reading the Wessely quotes. Why give him a platform to spout unscientific theories and nonsense in this context?

From the piece:
"Sir Simon Wessely, a professor of psychological medicine at King's College London told Newsweek that there is already "ample evidence that ME/CFS is not the same as depression, but that previous depression increases the risk of developing ME/CFS, which needs explaining, and I would be surprised if genetics does not play some part in this."

He said that while it is understood ME/CFS is not an anxiety disorder, "anxiety can impede recovery.""

There are a few more quotes - but the piece does not even contextualize his role in this story at all and so does not explain any conflicts of interest. It's massively irresponsible journalism both on the science and on the motives of people quoted.

ETA: The reporter is based in London, not the US, so I imagine that made it a lot easier to get these quotes into the piece.

ETA2: Newsweek should print a clarification on Wessley's role in the story. He is involved, not some random observer or Professor of psychiatry. The claim that anxiety can impede recovery is also baseless and irresponsible speculation. Would they print this for another illness? I am not able to email them at present but I would if I was more able.

 

[Adam pwme]

Edited version of BBC 5 Live’s Nicky Campbell phone-in (53 mins) on the DecodeME results. Professor Chris Ponting explains the findings, and callers share how stigma, misdiagnosis, and severe illness have shaped their lives with #MECFS.