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

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.

Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

Why is The Guardian's coverage on ME/CFS so poor?​

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

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.

 

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

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

 

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:

https://web.archive.org/web/2019072...-encephalomyelitis-chronic-fatigue-pace-trial

 

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.

 

Why is Sharpe so active lately? He seems to be everywhere at the moment. Perhaps he needs a nice holiday.

 

This is awful.

Comments are not possible or am I missing something?

He must be an activist then. Who else would read medical papers looking for potential flaws?

 

Ooh, ooh, I know this one! It's "trolls"!

 

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.

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

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

 

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):

 

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.

 

For how many years can Sharpe continue to both claim to have been driven out of a field and continue pontificating and publishing on it, before journalists notice any internal contradiction.

 

https://twitter.com/user/status/1155466755046817793

 

That's probably why the coverage of the science is actually better than we're used to from the Guardian!

 

@Jonathan Edwards can you leave a comment? Your last ones on Psychology Today were really good.

 

The problem for them is that we have seen the emails of the former editor - we can use that to show that complaints about methodology are quite serious.

 

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)