DecodeME in the media

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.
 
@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

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 www.newsweek.com
 
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.
Click to expand...
:sick::emoji_rage: They seem to have a gameplan in place. I think it will be hard to counter until these findings are built upon sadly.
 
Maat said:
@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

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 www.newsweek.com
Click to expand...
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.
 
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Ariel said:
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.
Click to expand...
Is there any evidence about anxiety impeding recovery? I'm not aware of that ever being studied, let alone objectively.
 
Maat said:
@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

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 www.newsweek.com
Click to expand...
Julia Newton's quotes were heartening:
"I sincerely hope that this study, resets the narrative around ME/CFS, encourages further research in this debilitating disease and begins the path towards effective, evidence based treatments," she said.

She added that "there is a long road ahead but I am optimistic that this is the start of a journey that will improve the lives of those with ME/CFS and perhaps even eradicate it."
Click to expand...
And I liked Ponting's Churchillian "end of the beginning" in the Channel 4 interview yesterday.
 
V.R.T. said:
:sick::emoji_rage: They seem to have a gameplan in place. I think it will be hard to counter until these findings are built upon sadly.
Click to expand...
I just hear "but, but, but, but"

However unfortunately you are right that his dirty sophism BS won't be seen as empty one-liners like it is by those who want to hear it.

In essence the fact that Carson and the person on the sky interview had to resort to making up fibs to throw shade - childish and unprofessional to give out incorrect facts; and I'd hope they get found out and are seen as this

- and the best Wessely can do is the same old

The truth with Wessely's tosh is simply about him trying to get those words said in the same soundbite as the illness for the sake of it and are assuming listeners are either lazy and won't check whether what he says adds up or are looking for a dog to kick so happy to be led to an excuse of a wind-up phrase. Childish and unkind. Which shows what it has all really been about for him and seems purely strangely personal given I'm not aware anyone ever did anything to him that would normally warrant such.


And the upshot is that he wants someone to answer back saying these are such flippant statements that you could theoretically make them as false hysterical women type accusations for any person, whether they had any illness of any other type or not.

But the real answer is that it comes from a place of weaponising mental health to utilise it for the purposes of 'hysterical woman label slander' and so shouldn't be being levelled at anyone. Which shows how little respect he has for these serious mental health illnesses that he uses them as such. Noone ever did or ever should deserve it.

"don't know its not caused by anxiety" is the level of wind-up most men on the street can come up with to try and disempower a woman. "don't know its not caused by oranges" but they didn't appear on the genes either, so probably not, and what's that got to do with the price of eggs.

And the only reason someone is saying it in response to a genetic study showing promise that other useful clues that could lead to actual cures has been released is to distract from that and try and ruin it. Like a child trying to pee on another child's birthday present at their party by suggesting snide comments

And anyone reading it should find that nastily obvious. It would be pretty weird if it were a response to a study for a specific cancer finding 8 genes as clues to be these one-liners suggesting: 'maybe they should control their anxiety' or throwing shade suggesting its caused by depression when the study itself just looked at all genes and neither were there.


But the man who apparently ran the sector with his wife and others for so many years and pushed all patients into 'mental re-education' treatment inappropriately for decades should surely have shown a cure rate if that was anything to do with 'making people worse', so PACE proved these answers anyway by being a failure of his treatments.

This man had ample opportunity to show the answers if these were real questions (and what he wanted to suggest might be true wouldn't be disproven), rather than just nonsense using mental health stigma as a weapon to throw shade (and insult those suffering from those mental health conditions at the same time), and have completed a genetic study showing this if it was there to show. I'm unaware of him being refused funding.

So it's just the nasty little Popper's theory retort he thinks uses the 'can't prove a negative'.

Well, on that basis I personally "don't know that what he says isn't caused by being purely malicious" or "that he didn't hear it from a banana telling him it in his dream last night"
 
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Ariel said:
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.
Click to expand...
I recall some research showing previous depression appearing to precede ME/CFS. The problem was it often takes years to get diagnosed. So in the years before diagnosis, patients may appear depressed either due to the physical symptoms of ME/CFS having some similarity to depression or because they are distressed from struggling with a disabling chronic illness for which they are not getting support and accommodations at work, school, home, etc.

Experienced clinicians like Wessely and White should have known diagnosis often took years (particularly in the 1990s) and discussed it but either didn’t at all or maybe only in passing.
 
In that Newsweek article, it was great that Chris was quoted as saying ME/CFS is often misdiagnosed as depression. His two talking points there were very good.

Chris Ponting said:
"ME/CFS has often been misdiagnosed as depression or anxiety," Ponting said. "We checked whether DecodeME's eight genetic signals had been found before for other diseases, but drew a blank."
Click to expand...

Anyone paying attention would then note that those misdiagnoses are likely to precede a diagnosis of ME/CFS, rather than previous depression increasing the risk of developing ME/CFS.

Wessely said:
"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."
Click to expand...
 
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