New poor Guardian article "ME and the perils of internet activism" 28th July 2019

Esther12

Esther12

Senior Member (Voting Rights)
Moderator note: Posts on this thread have come from three places, this thread and the following two threads. They have been copied or moved to keep the discussion in one place.

******************************************************************************

New rubbish article in the Guardian today: https://web.archive.org/web/2019072...-encephalomyelitis-chronic-fatigue-pace-trial

They did speak to Shepherd who gave them some quotes that they could use to try to justify their spin - difficult to know what he said in context, but imo it's a terrible idea to ever combine criticisms of PACE with discussions about whether CFS should be classed as 'neurological' or 'physical', or anything like that. Especially with a journalist from the Guardian.

Though they mention Tuller by name a couple of times they don't appear to have contacted him for comment.
 
Last edited by a moderator:
Esther12 said:
I get the impression that the Guardian attracts a lot of people who like to imagine they're part of some sophisticated intellectual elite, but want simple narratives and can't be bothered to really look into the evidence. Wessely is great for that crowd.
Click to expand...

I wrote this before the new article... but it seems like Sharpe is just right for them too!

The arguments and counterarguments are complex and multifaceted. Sharpe says that as each challenge is refuted, the activists move on to a new issue. To follow their arguments, he says, is to “disappear down a rabbit hole”.
Click to expand...

Don't bother with all the silly arguments and counterarguments! That would be the route to madness.
 
Last edited:

New article in the Guardian makes it sound like they're preparing to celebrate the new Editor in Chief for bravely supporting PACE/Larun/etc in the face of vile activists:

Tuller has called the Pace trial a “piece of crap” and says that his goal is to “completely discredit” it. He describes researchers who conduct psychological tests for treatment of ME/CFS as “insane”, and he was instrumental in persuading the respected science journal Cochrane Database of Systematic Reviews to withdraw a paper that looked at eight randomised controlled studies of exercise therapy for ME/CFS. Sharpe says that the Cochrane editor “wilted badly… under direct pressure” from activists. The editor has since retired, and Sharpe understands that his decision is to be reversed.
Click to expand...

https://web.archive.org/web/2019072...-encephalomyelitis-chronic-fatigue-pace-trial
 
Last edited by a moderator:
It is an interesting line of attack which they adopt towards @dave30th.

It’s a harsh environment, fraught with lawsuits, that has bred a tough kind of activist. One of these is a man called David Tuller, a former HIV campaigner, who has become something of a hero to the ME/CFS community in the UK. He takes a highly detailed approach to medical papers, closely reading them to uncover any inconsistencies or potential flaws. He publishes his findings on a well-read blog called Virology.

Reading papers closely to uncover inconsistencies and flaws. Its just not good enough. He must be reprimanded.
 
Last edited by a moderator:
Esther12 said:
New rubbish article in the Guardian today: https://web.archive.org/web/2019072...-encephalomyelitis-chronic-fatigue-pace-trial

They did speak to Shepherd who gave them some quotes that they could use to try to justify their spin - difficult to know what he said in context, but imo it's a terrible idea to ever combine criticisms of PACE with discussions about whether CFS should be classed as 'neurological' or 'physical', or anything like that. Especially with a journalist from the Guardian.

Though they mention Tuller by name a couple of times they don't appear to have contacted him for comment.
Click to expand...
They must have been reading our thread
 
My comments from the other thread:

They did speak to Shepherd who gave them some quotes that they could use to try to justify their spin - difficult to know what he said in context, but imo it's a terrible idea to ever combine criticisms of PACE with discussions about whether CFS should be classed as 'neurological' or 'physical', or anything like that. Especially with a journalist from the Guardian.

Though they mention Tuller by name a couple of times they don't appear to have contacted him for comment.

Esther12 said:
I get the impression that the Guardian attracts a lot of people who like to imagine they're part of some sophisticated intellectual elite, but want simple narratives can't be bothered to really look into the evidence and. Wessely is great for that crowd.
Click to expand...

I wrote this before the new article... but it seems like Sharpe is just right for them too!

The arguments and counterarguments are complex and multifaceted. Sharpe says that as each challenge is refuted, the activists move on to a new issue. To follow their arguments, he says, is to “disappear down a rabbit hole”.
Click to expand...

Don't bother with all the silly arguments and counterarguments! That would be the route to madness.
 
Shepherd says that Pace endorsed the belief that there is “no disease process going on, no disease causing these symptoms”.

Sharpe counters that nowhere in his writing has he ever argued that there is no underlying disease, only that, given the disease has not been identified, the most effective current treatment has to be directed at the symptoms. “I have always said that, like all chronic illnesses, there is a percentage of the variance that’s caused by how people cope with it, how they think about it, how they behave. It’s probably a larger part of variance than we think. There’s some interesting studies in heart disease saying that how impaired people are has very little to do with the functioning of the heart and an awful lot to do with how they respond to the symptoms of heart disease.”
Click to expand...

Again, it's difficult to know exactly what Shepherd was saying here... he could have just been reporting what the PACE manuals say about the models underlying CBT/GET, but I think it's often counter-productive to raise concerns about those sorts of things in the context of criticising PACE. It often seems to get used to present critics as unreasonable and ideologically driven even when they're just stating accurate facts. In this case the brief quote being introduced with "PACE endorse the belief" (what does that even mean?) makes it sound as if Sharpe needs to correct Shepherd's misunderstanding.

There are problems with the models underlying CBT and GET in the PACE trial but I don't think that this is a particularly important issue, and I think that when we try to complain about those problems it is very often counter-producted.

PS: I feel like I'm posting a few problems with Shepherd's responses, and that could imply I thought I could do better... I doubt it. It seems this journalist wanted to produce misleading spin and that makes it very difficult for anyone to engage successfully with them. I'm just trying to see if lessons can be learnt from the sort of comments they were able to use against us. Thanks to Shepherd to putting himself in this difficult situation and trying to make this point (that I expect would have been difficult to do to this journalist in a way that was difficult to spin):

He dismisses the notion of an abusive campaign as a story that has been overplayed in the media and which concerns “a tiny, tiny, tiny number of people sending emails to one of the handful of researchers in one particular area of research”.

“There are 250,000 people with this illness,” he says. “A lot of them feel very cross and angry about the way they have been treated by doctors. I mean, the numbers were probably 10 or 20 people who were accused of sending harassing or abusive emails.”
Click to expand...
 
Last edited:
adambeyoncelowe said:
I think that as the publication has matured, it's become 'establishment' in its own way. That means it can be quite small-C conservative at times, or at least reactionary, and very curmudgeonly. Part of that is being 'sceptical' but without doing the requisite critical thinking--i.e., just parroting a cynical view without looking at the actual facts.
Click to expand...

I wonder if the long time New Labour spent in power, and the creation of a 'Guardian-style' Establishment also played a role in making the Guardian very trusting of certain authority figures?
 
he (Tuller) was instrumental in persuading the respected science journal Cochrane Database of Systematic Reviews to withdraw a paper that looked at eight randomised controlled studies of exercise therapy for ME/CFS. Sharpe says that the Cochrane editor “wilted badly… under direct pressure” from activists. The editor has since retired, and Sharpe understands that his decision is to be reversed.

:banghead:
 
Esther12 said:
They did speak to Shepherd who gave them some quotes that they could use to try to justify their spin - difficult to know what he said in context, but imo it's a terrible idea to ever combine criticisms of PACE with discussions about whether CFS should be classed as 'neurological' or 'physical', or anything like that. Especially with a journalist from the Guardian.
Click to expand...

Yes, Sharpe has committed two fallacies - first, the red herring approach, instead of countering the claims about how the data and methodology fail to meet the quality standards that would be required in other fields, he instead says it's all about patient beliefs instead.

The second is that the new point he brings up is not proven, he simply assumes it is true: that patients have made up their mind that the illness is physical and that all other beliefs follow from this.

(he fails to consider the opposite - that lack of efficacy of psychological approaches leads to patients believing that a different approach is required)
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom