Discussion in 'BioMedical ME/CFS Research' started by MeSci, Dec 4, 2018.
Discussion of this blog starts here post #172
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.
Pretty sickening all the articles on this research all over the web with 'ME patients are not just Lazy' as heading .
And Pariante retweeting...
he would pick possibly the worst paper to retweet
eta: also Pariante may be an expert in something but NOT in ME/CFS
Is that deliberate or naïve?
"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.
A Reddit thread on one of the media articles about this paper. Surprisingly the majority of comments that I looked at are reasonable.
A person on reddit (not a patient it seems) commented on this 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®id=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.
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
I was thinking the same and trying to find out who it would be addressed to and came across this:
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:
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
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:
Dunno about others but I’ve decided I’m not sharing links to any of this stuff. Albeit that’s only a small gesture due to my limited social media presence i don’t feel i want to contribute clicks to their hype.
Funny that – when I think of the SMC, dysentery comes to mind.
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/).
Seems he got some reactions on twitter..
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.
Separate names with a comma.