The Guardian - Rod Liddle vilifies disabled people. I’m tired of the hate. We all should be (2019) Frances Ryan

Skycloud said:
I spent quite a long time yesterday writing and re writing a commet on Ryan's article but just couldn't stop it from turning into a complete rant. I re-read the article today and I'm still a little angry and disappointed : the story isn't Liddle!!
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That's true, but shitty people writing shitty things in the media is much of the problem...

Esther12 said:
Liddle didn't say ME was “all in the mind”, and I'm not sure it's right to imply that's what he meant by “that their complaints about a virus have no basis in fact”.
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Re-read all the shit Rod has been writing about ME over the years and you might change your mind...
 
JohnTheJack said:
On his website:
211 in total; 141 up to and including 2001.
http://www.simonwessely.com/index.php/publications/papers-chronic-fatigue-syndrome/
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Uh, I guess Wessely had a very large backlog of papers to publish after he left the field in 2001.

Because there can't possibly be another explanation since he definitely said he left the field to several newspapers, and multiple times after.

Pictured: Wessely's struggle with leaving a field of study he just can't quit
HomerSandwich.png
 
Londinium said:
...and, to be fair to them, sometimes ME patients and their advocates do use imprecise language that could imply that mental illness is not a 'real' illness.
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Mostly in the context of total strangers barking that point. We're not making that point, we're responding to people making it and beating us over the head about how lazy we are for objecting to a simple cure, refusing to exercise like lazy malingerers.

We would never have to counter that point if it wasn't routinely made by random people and medical professionals alike. And everyone making that point is making it because that's the conclusion they get from research and guidelines that implicitly say so.

We can't really avoid responding to the point when it is so commonly made. It would be preferable if things were different but that's the context we are dealing with.
 
rvallee said:
The PACE manual, authored by Wessely et al, has a published date of 2002. Wessely claimed he took no part of PACE, despite being thanked for his contributions. He had several publications afterward, including many seemingly independent appreciations of PACE, not acknowledging he was applauding his own work.

I remember a Twitter exchange where he denied it, someone showed him something with his name on it, and he just said something like "oh yeah, that, guess you're right". It wasn't an obscure piece of trivia either, he clearly could not have forgotten that (in fact I think it was either about the PACE manual or him being thanked for his contributions on the trial).
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Maybe it was about him being one of the centre leaders and thus a member of the trial management group?

"The PACE Trial Management Group is credited as an author of the PACE trial. It was responsible for the day-to-day running and management of the trial and met periodically throughout the design, implementation, and publication of the study."
https://www.me-pedia.org/wiki/PACE_Trial_Management_Group
 
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MSEsperanza said:
Maybe it was about him being one of the centre leaders and thus a member of the trial management group?
https://www.me-pedia.org/wiki/PACE_Trial_Management_Group
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Edited to include quote from PACE Trial Identifier:

https://www.bmj.com/rapid-response/2011/10/30/re-professor-wessely-and-dr-whites-views

"The following information contained within "THE PACE TRIAL IDENTIFIER":

"The trial will be run by the trial co-ordinator who will be based at Barts and the London, with the principal investigator (PI), and alongside two of the six clinical centres. He/she will liaise regularly with staff at the Clinical Trials Unit (CTU) who themselves will be primarily responsible for randomisation and database design and management (overseen by the centre statistician Dr Tony Johnson), directed by Professor Simon Wessely, in collaboration with Professor Janet Darbyshire at the MRC CTU"
 
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“that their complaints about a virus have no basis in fact”

that line gets repeated again and again, Wessely said it, more recently Esther Crawley I think also did in one of her radio interviews; largely harks back to the XMRV debacle.

None of them seem to bother to update themselves on the research of the last 5 years + and consequently just churn out the same arguments; ironic that they claim the ME community are the ones who haven't 'moved on'.

eta: it might go back even further to the 1990s when the MEA believed and really pushed that ME was caused by a virus that was 'reactivated' by exercise.
 
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Snow Leopard said:
That's true, but shitty people writing shitty things in the media is much of the problem...

Re-read all the shit Rod has been writing about ME over the years and you might change your mind...
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Yeah, but the trouble is that Ryan didn't justify her claim with reference to all that, but with a Liddle quote saying “that their complaints about a virus have no basis in fact”. I can see how that would make some readers think that Ryan was being unfair.
 
Ryan's piece was not written to defend against criticism from the PACE trial researchers imo. If she'd just changed a few words it could have been a lot stronger. A bit of an annoying missed opportunity tbh.
 
I think he's found a way to say "Rod Liddle seriously misrepresented our research" without saying "Rod Liddle seriously misrepresented our research".

I do not wish to comment on your opinion piece
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What a rude way to start - how about "Congratulations on your opinion piece" or some other polite noise to break the ice?
 
If this wasn't so serious it would be a hilarious farce. Every time MS feels slighted he runs on stage and shouts 'did you read the PACE trial', and runs off again amid snorts of derisive laughter and a hail of custard pies.
 
Esther12 said:
Ryan's piece was not written to defend against criticism from the PACE trial researchers imo. If she'd just changed a few words it could have been a lot stronger. A bit of an annoying missed opportunity tbh.
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Yeah, I think it takes time and experience for people to wrap their head around the fact that the PACE/BPS people have staked out a different position than the popular formulations of 'not real - all in your head - just stress/mental weakness (etc.)'.

It's not surprising that people don't get that right away - because the PACE/BPS people don't seem to find it worth their while to spend any effort to fight the popular formulations and bring them more in line with their position. I think it has suited them for the 'all in your head' stuff to be out there and they seem happy to let the media filter their findings as that sort of message and then propagate that.

Then when someone criticizes the 'all in your head' stuff and brings PACE into it, they can act all misunderstood and hard-done-by.

That's just my interpretation. Perhaps others understand better than I and can correct me.
 
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