Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

It's not -- those were two, separate groups in the study.

[Edit: I see @Michiel Tack already noted this! :)]

There is a lot of muddy water about...

Pariante said: "We’ve been able to use a group of people that have a high risk of developing chronic fatigue syndrome, in this case, following an activation of the immune system through a medication that they take for a therapeutic purpose, which in reality is very similar to what happens to many patients at the time at which they have a strong viral infection."

He seems to be using the laxity of Oxford to create a false equivalence between the two groups. He's also quite careful in interviews not to mention HCV. As far as I'm aware, there is no evidence that those with HCV are at a higher risk of developing CFS or ME. If there were, that really *would* be interesting.
 
Last edited:
A person on reddit (not a patient it seems) commented on this study:

The scientific article related to this yesterday was posted, this is the biggest exaggeration I've ever read. They had prelim data that people with hep c on IFN-alpha therapy who developed chronic fatigue had elevated IL6 and IL10 levels compared to those without chronic fatigue. Its not really that surprising that immunoregulators cause fatigue, especially since its relatively well accepted that our bodys immune response makes us feel like shit with infections. This research did nothing to directly study the disease known as CFS and merely provides some mild evidence that fatigue can persist in these individuals after normalization of the levels, which could possibly be similar to what may be happening in CFS

Terrible science journalism here tbh, the person writing it clearly didnt read the study

Apparently it's not just us vexatious patients that have a problem with it.
 
Given that the Science Media Centre, a charity whose charity listing, http://beta.charitycommission.gov.uk/charity-details/?subid=0&regid=1140827, claims that it's purpose is to (sorry, all caps is how it is on the website)
PROMOTE FOR THE BENEFIT OF THE PUBLIC ACCURATE, EVIDENCE-BASED INFORMATION ON SCIENCE AND ENGINEERING IN THE MEDIA, PARTICULARLY ON CONTROVERSIAL NEWS STORIES. ACTIVITIES INCLUDE WORKING WITH SCIENTISTS AND ENGINEERS, SUPPORTING THEM TO ENGAGE WITH THE MEDIA; WORKING WITH JOURNALISTS, PROVIDING THEM WITH INFORMATION ABOUT SCIENCE; SUPPORTING PRESS OFFICERS WORKING ON DIFFICULT SCIENCE NEWS STORIES
could a complaint be raised, highlighting the inaccuracies of the media coverage inspired by their briefing? And if we could ever get a copy of the briefing itself, to fact check that, would be great, and would make any complaint made even more accurate.
 
Given that the Science Media Centre, a charity whose charity listing, http://beta.charitycommission.gov.uk/charity-details/?subid=0&regid=1140827, claims that it's purpose is to (sorry, all caps is how it is on the website)

could a complaint be raised, highlighting the inaccuracies of the media coverage inspired by their briefing? And if we could ever get a copy of the briefing itself, to fact check that, would be great, and would make any complaint made even more accurate.
I was thinking the same and trying to find out who it would be addressed to and came across this:
https://www.s4me.info/posts/130195/
 
Is this what I'm seeing?

Scientific perception = nothing new really in the paper

Media / Public perception = paper says CFS is real and not imagined, inferring patients can now be believed

The thing I find most astonishing about this whole episode is the power of the Science Media Centre to dictate news coverage. I've been collating the news articles so far, planning to list them in the News in Brief this week, but there are too many, so I'm putting them here instead:

Kings College press release here SMC briefing here
BBC Radio 4 Today program Monday 8.50am
BBC Wales (time 16.44) here BBC article here
Reuters here
Daily Mail here
Daily Telegraph here
The Independent here
Science direct here
The Guardian here
The Conversation here
French articles here and here
US Medical Daily here
CNN here
US News here
Science Alert here
The Sun here
 
Last edited:
It's going to get worse as there are 'branches' of the SMC in other countries and presumably they pass on their releases.

eta: I see the ME Association are also retweeting all the various articles (although have not spotted the ones with the Sun headline yet)



Michael Sharpe adding his words of wisdom:rolleyes:
 
Last edited:
The thing I find most astonishing about this whole episode is the power of the Science Media Centre to dictate news coverage. I've been collating the news articles so far, planning to list them in the News in Brief this week, but there are too many, so I'm putting them here instead:

Here is the Sun link, this is their Irish site, shared by Tom Kindlon on Facebook, I don't know if they also have a seperate link on their English site:

https://www.thesun.ie/fabulous/3531...ence-of-what-causes-chronic-fatigue-syndrome/
 
As I intimated earlier, I think there is some internal MRC politics involved here. I have to respect confidence with regard to various things I have heard but David Attenborough's 'Dynasty' series comes to mind for some reason.
Funny that – when I think of the SMC, dysentery comes to mind.

"ME patients AREN'T just lazy..."

"just" is ringing in my ears.

The 'just' leaves the door open to 'also' having false illness belief / malingerers / etc.
I was tempted to reply to Pariante’s tweet by saying: “This article appears to show that Pariente et al AREN’T just a bunch of incompetent f@#&wits.” But I decided that discretion might be the better part of valour.

I see that The Sun article is just a reproduction of The a Conversation article written by Pariante and Russell. I was pleased to see that it included a photograph of an immaculately coiffed young male model yawning, Cher, and a young woman lying down in bra and knickers – just in case any readers were left with any uncertainty about the seriousness of “CFS” (https://www.thesun.co.uk/fabulous/8008914/chronic-fatigue-syndrome-biological-causes/).
 
Given that the Science Media Centre, a charity whose charity listing, http://beta.charitycommission.gov.uk/charity-details/?subid=0&regid=1140827, claims that it's purpose is to (sorry, all caps is how it is on the website)

could a complaint be raised, highlighting the inaccuracies of the media coverage inspired by their briefing? And if we could ever get a copy of the briefing itself, to fact check that, would be great, and would make any complaint made even more accurate.
I don’t think their actions here were particularly bad (though we can be cynical about their motives).

I would feel much more comfortable if they were challenged on another action by them which would better exemplify their bias.
 
By coincidence I've been reading their 17-18 annual report today as well as their charity commission listing.

They have appointed themselves arbiters of good science, citing success as being where what they consider a 'poor' paper/scientific endeavour appears in the media; front page vs page 8 or ideally not at all. What gives them the right to decide what is poor and what attention it gets?

Also the declaration of interests of trustees/directors is interesting, I wonder if Simon Wessely's relationship with Ioppn, (which is his official address listed on the Companies House trustees/directors page) is listed on the briefing document.

And I am also a bit fascinated by the number of 'experts' who SMC state volunteer their time sometimes at very short notice and out of hours. There's got to be some quid pro quo to it surely, (I don't mean monetary), unless it's just the chance of getting your name in the paper. ;)

It does seem a lot of journalists know about the history of Fiona Fox because a few names have cropped up in old articles critical of her, like Ian Sample from the Guardian but presumably they are OK with using SMC because it makes life much easier for them. Although the Guardian is certainly not pro-fracking so they must resist SMC coverage of that whilst embracing the M.E. stance wholeheartedly.

Sorry this has gone on a bit.
 
Back
Top Bottom