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

Re: The Guardian, I've long been puzzled by this also, but I think possibly their understanding of the issues has been heavily influenced by Dr Ben Goldacre, a former journalist for them, who wrote their weekly 'bad science' column for 8 years, and who, incidentally or not, is a protege of SW.

I listened to an audiobook by Ben Goldacre, whose writing I enjoy, and it contained some interesting biographical information about his formative years. I'm referencing this from memory now, which is always a risky business, but, as I recall, he said he was a close childhood friend of the Blakemore family. About this time, or shortly after, Colin Blakemore was being targeted by animal rights activsts for being an outspoken defender of animal experimentation and research. As you may know Sir Colin Blakemore went on to become CEO of the MRC in the early 2000s, and was a vocal defender of biopsychosocial research into ME/CFS and inevitably became involved in propogating the militant patient activist meme in some newspaper articles, as I recall.

So it would be understandable if the young Ben Goldacre under the influence of mentors like SW and CB would adopt a certain world view, noble and valiant in his eyes, as a staunch defender of the medical establishment against these upstart patient activists; he earns his medal of honour and gets to be a member of the club 'standing up for science'.

I think I had more to say here to get back to the original point, but I've run out of brain power... I think it was just a point that perhaps the Guardian supports categories like MUS, that are ultimately unsatisfactory for patients, for the greater purpose of keeping the wheels on the NHS itself, so it doesn't risk falling apart completely. So we get thrown under the wheels of the bus, for the greater good... Not sure if that will make sense when I read it back later, but signing off for now

 

Thanks Adrian.

Can I ask when did you send your complaint? I've also sent one (with more than 500 words because it's nearly impossible the explain the issues in such brief space) but haven't gotten a reply yet.

 

Thank you @Adrian, also I think the Guardian’s reply is just weird and they haven’t addressed any of your points.

 

Ok thanks. I've sent mine two days later on Tuesday. I'm hoping that 500-word limit isn't a reason to ignore my complaint.

 

This is a terrible response but I'm not surprised. Exemplifies the emphasis of narrative-driven and poorly-researched opinionating that passes for journalism these days. Could simply have replied saying he finds Sharpe more credible and doesn't care about the substance, just who is to blame. He says. Thousands say. Who can really tell? Weak.

 

No one ever does. Always "well, Sharpe (or Wessely) says it's false so whatever I believe them".

 

I think the most important question is, who commissioned the article?

How did the story come about?

Basically to what extent did Sharpe or the SMC for example go to the Guardian with a spoon fed story.

 

The article begins:

Is this a fair and accurate comparison? What image is this comparison designed to invoke in the minds of the article's readers?

Compare what Charles Shepherd says about there only ever being a tiny number of individuals accused of harrassment with the following Guardian article describing what is currently happening in politics:

https://www.theguardian.com/politics/2018/oct/23/crimes-mps-uk-online-intimidation-abuse

So if the 'same is said about medical science' where are all the hundreds of 'medical scientists' - across the whole field of medicine - raising their voices in concern about what is happening to them?

Funny that it's only the same handful...

 

It sounds from their reply to @Adrian 's complaint that The Guardian are completely unaware of the events that led up to the original Reuters article from which this arose.

Has anyone written to explain this to them?

I would hope they would see it in a different light if they knew of Sharpe's fishing exercises last April and June when he tried to solicit adverse responses to his twitter questions.

Maybe we even gave him the idea in the first place:
https://www.s4me.info/threads/micha...ohnthejack-on-twitter.3464/page-11#post-64643

ETA: Many of us try very hard to criticise the science without getting into personal dealings with those involved. Much of the problem here has been that Sharpe has targetted criticisms [of his beloved trial] on Twitter by seeking out any mentions of "PACE trial" with the sole aim of trying to elicit those kind of personal responses. He is playing games with us. He thinks he holds all the aces. But he doesn't.

 

It scores a few short-term points but everything he's written is permanent and makes it obvious how deceitful it is to anyone who bothers. It's just that there is so much that it takes a lot of effort. This works for now because all of the articles published about this are opinion pieces that give them the benefit of the doubt on all counts, no fact-checking involved.

As soon as real journalists get involved, like David does, and ask basic questions the whole thing falls apart. Same with peer review. They have been graded on a curve for so long they won't know how to respond to real criticism when it inevitably happens. When you can get away with "we prefer this interpretation" and it's taken seriously as a refutation by a medical journal, you truly think you can get away with anything.

With time it adds up to something so fascinating and bizarre that it will be exposed in proper context and look absolutely ghastly and malicious. Especially as much of the recent attacks hinge on social media yet the accusations started around 2001 with Wessely responding to recent articles that rightfully called him an enemy of the ME community. It's just as dumb as calling ME an Internet illness when it predates it by several decades.

It only works because the people mocking and disrespecting us don't care and assume we are weird lunatics bothering respectable scientists, never bother to check besides a quick search that validates their prejudice. Changing stories are a classic tell and the evidence trail having been so ham-fistedly promoted makes it impossible to bury. It had to be loud to work, but in the end it will be a massive anchor around their necks.

 

Have they even read the paper? Even with the fraudulent definition of recovery only a minority of patients improved, I believe it was about 22%.

 

Yes this is my experience with someone close to me, who said the Guardian are taking a strong pro-science stance on anti-vaxxers etc and we have been caught up in it. They said “it’s a shame there is some overlap”. I was confused - turns out they were thinking of Dr Myhill speaking up for Andrew Wakefield.

Found this in a recent article:
“Indeed, the work of Andrew Wakefield has done little to enamour the medical profession of mavericks. Is it possible, however, that another unexpected side effect from the Wakefield scandal is that the medical profession is less prepared to take account of dissenting voices?”

From:
https://www.telegraph.co.uk/news/he...2/Could-a-renegade-doctor-save-your-life.html

I think we do need to tread carefully when we criticise research not to alienate academics who are generally interested in medical and ethical issues and lump them all together. We should critique specific failures in peer review processes etc (not saying we don’t do this carefully already, just that it’s a touchy subject). They will not be open to suggestions that the whole system is flawed.

 

Yes I agree. It’s just that some can get a bit defensive and switch off from thinking about how wide the implications may actually be, even if they accept in this case the process has not worked to safeguard research quality.

 

It appears the Guardian is more interested in being seen as pro-science than actually being pro science. Garbage newspaper.