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

hellytheelephant said:
I really don't understand why this is the case. As a generally left leaning publication it champions the underdog. We are about as underdog as you can get: poor, on benefits and with no treatment, and having to convince everyone from Doctors to relatives, and loved ones, how sick we are, time and time again.:banghead::banghead::banghead::banghead::banghead::banghead:
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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 ;)
 
I sent a complaint to the Guardian and got this reply from the readers editor

Dear _,


Thank you for writing.

I have read the article in light of your concerns.

It strikes me as a reasonable effort to summarise a very difficult issue, on which various views are deeply held.

It refers to the serious questioning of the Pace trial and to the still unfolding events around Cochrane.

It sets beside the views of Michael Sharpe the views of Charles Shepherd.

It ends on a note of realism: that this is not a matter on which there is consensus yet, but that the fundamental aim is to improve health.


I agree that there can be media coverage which exacerbates disputes over these sorts of issues, but in this case I believe that the fact of the dispute, and the possible impact of the dispute on important relationships of trust and confidence, are legitimate subjects which have been appropriately addressed within the unavoidable constraints of the journalistic form, as distinct from academic or specialist literature forms.


But you make important points, and I have conveyed your views to the relevant editorial team.


Yours sincerely,


Paul Chadwick

Readers' editor
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Here was my complaint (which they limit to 500 words).

Dear Reader's Editor


I am writing to complain about an article"ME and the perils of internet activism" That appeared online on Sunday the 28th of July and possibly in the physical paper.



Given your very limited complaint format of 500 or less words I won't go through the article line by line to point out the many inaccuracies.



Instead I would like to complain on the issue of fairness. The article tries to place words into patients mouths as to why a medical trial was controversial however the word represent the opinions of those conducting the trial and not patients themselves.

The PACE trial that this article is about is controversial for two reasons:

Firstly, because it was poorly carried out with numerous unjustified protocol changes. One such protocol change lead to the misreporting of trial reporting recovery as being significant when using the researchers own definition from the protocol there was no significant result. This was uncovered after patients used freedom of information requests to understand more about the trial and trial data. One such requests lead to the release of data showing the researcher had spun their recovery results (against good scientific practice). Your article attack patients for doing this but an information tribunal recognized the public interest in ensuring patients have accurate information about treatments.

Secondly, methodological concerns cause controversy. The two treatment arms favoured by the researchers aim to change how patient’s views of symptoms yet measurements of success in this trial are through subjective questionnaires. Such bias leads to the trial being largely meaningless.

Both patients and academics have expressed serious concerns about this trial. But going back to the fairness point. They were not asked by the journalist for an opinion. The criticisms are set out in peer reviewed papers that the journalist could have read and represented. Instead he chose to give a one-sided story where those who have been accused of bad practice put words into the mouths of the patients and academics trying to hold them to account.

Lastly, I would like to bring an issue of public interest namely protecting public health and safety. The proposed treatments of which your paper is providing a one-sided view have been widely reported in patient surveys to harm patients. So, your promotion of such treatments could lead to significant harm to patients.



Given the Guardian's historical negative attitude to ME patients I have no faith that you will take this complaint seriously. But if you wished to show you want to take ME patients and their opinions seriously why not interact with patients and justify the standard of journalism applied to this subject. One way you could do this is to talk with patients on a forum aimed at discussing the science around ME that I am involved in (www.s4me.info) and find out why they see the guardian as propagating a very negative and harmful view of them to the wider public.




Yours
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Michiel Tack said:
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.
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I sent it on Sunday 28th and got the response on Friday.

I tried to just keep to one main point to get it under 500 words rather than cover everything that was wrong
 
Adrian said:
I sent a complaint to the Guardian and got this reply from the readers editor



Here was my complaint (which they limit to 500 words).
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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.
 
The article begins:

It’s become a truism of modern-day politics that social media and the online activism it enables have coarsened debate and left politicians vulnerable to campaigns of intimidation. What is less widely known is that the same is said of medical science.
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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...
 
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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.
 
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Lucibee said:
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.
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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.
 
Adrian said:
It is also a paper that is widely read at universities so perhaps stories attacking poor quality academic research don't go well with the readership.
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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.
 
ProudActivist said:
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.
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A pro science stance needs to be done from the perspective of understanding science and methodology not just supporting the 'right people'. I'm not a fan of Myhill as I think others aren't. Worth pointing out that Horton (lancet editor - although I could have got the name wrong) was a supporter of Wakefield in that it took the Lancet along time to retract his paper and is also supporting PACE.

ProudActivist said:
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?”
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Sometimes mavericks get it right but that tends to be when the establishment views are wrong or don't fit when we have more evidence (for example more data or better sensors). But often there is a reason they are mavericks because they are just wrong.
ProudActivist said:
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.
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Academics often know there are flaws (they are not always naive). I think it is important to keep the criticism concentrated on the scientific methodology that goes wrong and the processes that allow this to happen (such as peer review). Its not peer review that is in itself broken the problem is that reviewers often come from a very small world in certain areas and suffer from group think. The problems with PACE are not really problems with just PACE but a whole area of research and researchers who have bought into a weak methodology - perhaps because they couldn't do better at some point. But there is a group and they review each others stuff in ignorance about what good methodology would require.
 
Adrian said:
Academics often know there are flaws (they are not always naive). I think it is important to keep the criticism concentrated on the scientific methodology that goes wrong and the processes that allow this to happen (such as peer review). Its not peer review that is in itself broken the problem is that reviewers often come from a very small world in certain areas and suffer from group think. The problems with PACE are not really problems with just PACE but a whole area of research and researchers who have bought into a weak methodology - perhaps because they couldn't do better at some point. But there is a group and they review each others stuff in ignorance about what good methodology would require.
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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.
 
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