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

Popping up from retirement purely to correct a misstatement in this article (with apologies if this has already been corrected within the thread; I did skim the thread, but could not spot one):

Guardian article states: "Charles Shepherd is a GP and medical adviser to the ME Association."

Dr Shepherd is not a GP.

Dr Shepherd publicly clarified some years ago that although he began a GP trainer year, he failed to complete it and did not qualify as a GP. Dr Shepherd is GMC registered as a medical practitioner only.

 

That might explain why I had the impression that what Shepherd was saying was mostly beside the point: about biomedical research, WHO classifying ME and CFS as neurological disorder etc. It now seems not that this wasn't his fault but that the interviewer was picking things so that it would fit his storyline. A simple and short explanation about the deviation in the protocol specified outcomes and the reanalysis that found recovery rates were inflated threefold, would have put this article in a whole different light.

 

I wonder whether CS should not record his interviews with journalists and then if necessary, edit out the journalists questions, stating that he had done so, and post the recording on the MEA website. Helpful readers of the article could then in commenting indicate the location. There's nothing like an incentive for keeping people honest.

 

Just so people know, comments complaining about a post being rubbish will still be interpreted by social media platforms as 'interest' and so lead to them showing more people the post. At the same time, there probably is some value in having a careful and well cited critical comment. I've no idea what the best balance is.

 

Lets all just post pictures of cheese instead of making comments about him or linking them to any articles. It seems more productive and won’t benefit anyone. Sharp objects might scare him too much.

 

Also the fact that the creation of CFS came from a CDC working group. The Americans did get involved, then Wessely mounted a campaign saying "I want that". Then science happened and they were showed they screwed up and backed away very, very slowly.

The sheer laziness of it all is staggering. Zero effort in research. No fact-checking.

 

Unfortunately articles like this have consequences. They will lead to more patients being mistreated. Like the psychosocial body of research, this narrative takes hold by repetition. This is easily the 20th or so (it would actually be nice to list them somewhere) article in the "demonize ME patients and damn the consequences" series. Medical professionals who glimpse a few of those end up with extremely prejudicial views of anyone with ME on their file, whether accurate or not. Treatable health problems will be missed and it will make it even harder to hold on to life-saving treatment for the most severe patients, who already have to fight a hostile medical system.

This is the purpose here: it's intimidation meant to silence us. "Stop raising the alarm about malpractice we caused or we will hurt you further". Make no mistake about this, this is the main intent. It also shows we are making headways as there would otherwise be no need for such a campaign. The psychosocial paradigm is essentially law in the UK, it has achieved supremacy and is believed by the vast majority of physicians. That they still have to use propaganda to uphold it means it is effectively being challenged in ways that could tip the scale.

And don't underestimate the value of this being on public record. It's highly prejudicial and patients and advocates (as well as some researchers!) respond with facts, linking to research papers and otherwise providing total refutation of the claims. This will matter in future lawsuits, in determining how much was known about this egregious violation of basic human rights. It's a slow-moving own goal but it will kick back so hard their heads will spin.

 

Nope, according the article he's just

Other people in the article have their professions and qualifications mentioned for some reason.

"A man called Jonathan Edwards"?

 

Research into the chronic illness, which affects 250,000 people in the UK, has been stalled for 30 years because of lazy journalism, an orchestrated media campaign, and abuse

 

There is a longer statement by the ME Association about the interview on their website:
https://www.meassociation.org.uk/20...the-perils-of-internet-activism-29-july-2019/

Some quotes that interest me:

Given that Shepherd thinks his quotes have been misused and that even he thinks that "at no time is the other side of this debate given a real voice" I plan on submitting a short and polite complaint about the article after all.

 

https://twitter.com/user/status/1155909816080093185

https://twitter.com/user/status/1155910117101047809

 

Random thoughts but: I'm not even sure what this opinion piece is trying to argue. It's derivative of the Kelland article and its dozen or so similarly poorly-researched opinion pieces, which itself was basically "here are 3 tweets that raise serious concerns about bad medical research and guidelines" and provides no additional facts, just a public call to hate on sick people who deserve to be punished for daring speaking out about systemic abuse and a human rights disaster.

It argues for... what... Sharpe himself being covered in research funding straight from a dump truck? And then what? His every word being treated as the gospel of the universe? His research being exempted from all peer-review and criticism? Written into canonical law, set in stone and objections punishable by thought-crime? What "peril" is he facing? Chalder and Crawley are still churning out the same trials over and over again, somehow funded by institutions who don't care how their money is spent.

Otherwise it essentially tries to shut down dissent, but does not even acknowledge the substance of this activism. It's all innuendo and "if wishes were horses, beggars would ride" but fact is Sharpe's work is basically the law of the land, the dominant paradigm in effect for 2 decades, loosely, and in the UK for 12 years as "this is it and nothing else" if you have ME. The "horse" Sharpe rode on in is essentially a misshapen lump of unspecified consistency and of equal use to any other misshapen lump of stuff you'd find on the side of the road.

What I am getting at is: what does the author want here? Besides "those sick people begging for help are bad people for begging for help". Because Sharpe sure isn't suffering. He is richly funded and can command internationally-syndicated special reports, was recently awarded psychiatrist of the year, or something. Wessely is basically at the top of what is even possible to be at the top of in his field. PACE was sold as the trial-to-end-all-trials on this topic so what is even there to study anymore after 30 years of promoting this ideology? What peril? The word means "serious and immediate danger". What danger? The danger that was dismissed by a tribunal as "grossly exaggerated"? That's just click-bait prejudice porn, HATE THOSE PEOPLE.

This isn't even about research anymore, it's been in effect for well over a decade and clearly failed. What possible intent could the Guardian, and other outlets, even have in publishing this propaganda besides "ME sufferers = bad, must hate"? Do the author and the editors involved even know what is being argued here?

 

I think @NelliePledge may have given the clue here to the purpose of the article (and I would suggest that the journo was an unwitting puppet for it)

Who knows what goes on at Cochrane. It may be that they thought they had found a nice pliable psychiatrist to replace D Tovey and then the person (who probably knew nothing about ME/PACE initially) balked a little when investigating further what it was she was meant to support. Maybe. Or maybe not. Either way she is now in a bit of a box regarding her decision.

ETA: I see NelliePledge got there first.

 

You could be right (I hope so) but I see it more as a warning shot across the bow to tow the line. Provided our supposition is even correct in the first place.

Would love to see it as an MS own goal though so will hope until we see what we see.

 

I agree. If there is a plan, I think the goal is to influence Cochrane's editors. Basically they're trying to suggest that it is not in Cochrane's interests to be seen changing their mind towards a view put forth by online activists.