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

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).

It's ridiculous that journalists don't bother doing the most basic research. Those 2 articles don't apply for his work on PACE but the background information was just as weak and lazy as recent coverage. It's all out there and although it would take a real in-depth investigation to get a full understanding, many of us provide some of those details constantly directly to journalists who just ignore them.
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Extract from an April 2008 post on my old ME agenda site:

PubMed: Papers published since January 2002 in the field of CFS by Simon Wessely including several where there is likely to be an overlap with CFS (Note: papers on GWS and fields other than CFS have been omitted from the search return of a total of 136 papers.)

Update: A number of additional papers have been published by Prof Wessely since this article was posted – see PubMed.

Roberts A, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ.

Salivary cortisol output before and after cognitive behavioural therapy for chronic fatigue syndrome
Journal of Affective Disorders, 2008, Oct.

Cho HJ, Bhugra D, Wessely S.

‘Physical or psychological?’- a comparative study of causal attribution for chronic fatigue in Brazilian and British primary care patients. Acta Psychiatr Scand. 2008 Jul;118(1):34-41. Epub 2008 May 22. PMID: 18498433 [PubMed – indexed for MEDLINE]


Search field: Wessely, Simon

1: Harvey SB, Wadsworth M, Wessely S, Hotopf M.

Etiology of Chronic Fatigue Syndrome: Testing Popular Hypotheses
Psychosom Med. 2008 Mar 31; [Epub ahead of print] PMID: 18378866 [PubMed – as supplied by publisher]

2: Cho HJ, Menezes PR, Bhugra D, Wessely S.

The awareness of chronic fatigue syndrome: A comparative study in Brazil and the United Kingdom.
J Psychosom Res. 2008 Apr;64(4):351-5. PMID: 18374733 [PubMed – in process]

11: Kanaan RA, Lepine JP, Wessely SC.

The association or otherwise of the functional somatic syndromes
J Psychosom Med. 2007 Dec;69(9):855-9. Review. PMID: 18040094 [PubMed – indexed for MEDLINE]

12: Rimes KA, Goodman R, Hotopf M, Wessely S, Meltzer H, Chalder T.

Incidence, prognosis, and risk factors for fatigue and chronic fatigue syndrome in adolescents: a prospective community study.
Pediatrics. 2007 Mar;11 (3):e603-9. PMID: 17332180 [PubMed – indexed for MEDLINE]

23: Quarmby L, Rimes KA, Deale A, Wessely S, Chalder T.

Cognitive behaviour therapy for chronic fatigue syndrome: comparison of outcomes within and outside the confines of a randomised controlled trial.
Behav Res Ther. 2007 Jun;45(6):1085-94. Epub 2006 Oct 30. PMID: 17074300 [PubMed – in process]

32: Jerjes WK, Taylor NF, Peters TJ, Wessely S, Cleare AJ.

Urinary cortisol and cortisol metabolite excretion in chronic fatigue syndrome.
Psychosom Med. 2006 Jul-Aug;68(4):578-82. PMID: 16868267 [PubMed – in process]

43: Reid S, Chalder T, Cleare A, Hotopf M, Wessely S.

Chronic fatigue syndrome.
Clin Evid. 2005 Dec;(14):1366-78. Review. No abstract available. PMID: 16620458 [PubMed – indexed for MEDLINE]

44: Cho HJ, Skowera A, Cleare A, Wessely S.

Chronic fatigue syndrome: an update focusing on phenomenology and pathophysiology.
Curr Opin Psychiatry. 2006 Jan;19(1):67-73. Review. PMID: 16612182 [PubMed – indexed for MEDLINE]

52: Jerjes WK, Peters TJ, Taylor NF, Wood PJ, Wessely S, Cleare AJ.

Diurnal excretion of urinary cortisol, cortisone, and cortisol metabolites in chronic fatigue syndrome.
J Psychosom Res. 2006 Feb;60(2):145-53. PMID: 16439267 [PubMed – indexed for MEDLINE]

54: Huibers MJ, Wessely S.

The act of diagnosis: pros and cons of labelling chronic fatigue syndrome.
Psychol Med. 2006 Jul;36(7):895-900. Epub 2006 Jan 10. Review. PMID: 16403245 [PubMed – indexed for MEDLINE]

60: Cho HJ, Wessely S.

Chronic fatigue syndrome: an overview.
Rev Bras Psiquiatr. 2005 Sep;27(3):174-5. Epub 2005 Oct 4. No abstract available. PMID: 16224602 [PubMed – indexed for MEDLINE]

71: Jerjes WK, Cleare AJ, Wessely S, Wood PJ, Taylor NF.

Diurnal patterns of salivary cortisol and cortisone output in chronic fatigue syndrome.
J Affect Disord. 2005 Aug;87(2-3):299-304. PMID: 15922454 [PubMed – indexed for MEDLINE]

73: Reid S, Chalder T, Cleare A, Hotopf M, Wessely S.

Chronic fatigue syndrome.
Clin Evid. 2004 Dec;(12):1578-93. Review. No abstract available. Update in: Clin Evid. 2005 Dec;(14):1366-78. PMID: 15865734 [PubMed – indexed for MEDLINE]

74: Cho HJ, Hotopf M, Wessely S.

The placebo response in the treatment of chronic fatigue syndrome: a systematic review and meta analysis.
Psychosom Med. 2005 Mar-Apr;67(2):301-13. Review. PMID: 15784798 [PubMed – indexed for MEDLINE] MEagenda 09:42, 21 September 2007 (UTC)

91: Reid S, Chalder T, Cleare A, Hotopf M, Wessely S.

Chronic fatigue syndrome.
Clin Evid. 2003 Dec;(10):1289-303. Review. No abstract available. Update in: Clin Evid. 2004 Dec;(12):

103: Woolley J, Allen R, Wessely S.

Alcohol use in chronic fatigue syndrome.
J Psychosom Res. 2004 Feb;56(2):203-6. PMID: 15016579 [PubMed – indexed for MEDLINE]

104: Winkler AS, Blair D, Marsden JT, Peters TJ, Wessely S, Cleare AJ.

Autonomic function and serum erythropoietin levels in chronic fatigue syndrome.
J Psychosom Res. 2004 Feb;56(2):179-83. PMID: 15016575 [PubMed – indexed for MEDLINE]

106: Roberts AD, Wessely S, Chalder T, Papadopoulos A, Cleare AJ.

Salivary cortisol response to awakening in chronic fatigue syndrome.
Br J Psychiatry. 2004 Feb;184:136-41. PMID: 14754825 [PubMed – indexed for MEDLINE]

109: Lyall M, Peakman M, Wessely S.

A systematic review and critical evaluation of the immunology of chronic
fatigue syndrome.
J Psychosom Res. 2003 Aug;55(2):79-90. Review. PMID: 12932505 [PubMed – indexed for MEDLINE]

118: Fischhoff B, Wessely S.

Managing patients with inexplicable health problems.
BMJ. 2003 Mar 15;326(7389):595-7. Review. No abstract available. PMID: 12637409 [PubMed – indexed for MEDLINE]

119: Reid S, Chalder T, Cleare A, Hotopf M, Wessely S.

Chronic fatigue syndrome.
Clin Evid. 2002 Dec;(8):1075-88. Review. No abstract available. Update in: Clin
Evid. 2003 Dec;(10):1289-303. PMID: 12603930 [PubMed – indexed for MEDLINE]

122: Wessely S.

Women experienced chronic fatigue syndrome and fibromyalgia as stigmatising.
Evid Based Ment Health. 2002 Nov;5(4):127. No abstract available. PMID: 12440469 [PubMed]

125: Reid S, Chalder T, Cleare A, Hotopf M, Wessely S.

Chronic fatigue syndrome.
Clin Evid. 2002 Jun;(7):966-78. Review. No abstract available. Update in: Clin Evid. 2002 Dec (8):1075-88. PMID: 12230719 [PubMed – indexed for MEDLINE]

134: Reid S, Wessely S, Crayford T, Hotopf M.

Frequent attenders with medically unexplained symptoms: service use and costs in secondary care.
Br J Psychiatry. 2002 Mar;180:248-53. PMID: 11872517 [PubMed – indexed for MEDLINE]

136: Clark C, Buchwald D, MacIntyre A, Sharpe M, Wessely S.

Chronic fatigue syndrome: a step towards agreement.
Lancet. 2002 Jan 12;359(9301):97-8. No abstract available. Erratum in: Lancet
2002 Apr 13;359(9314):1352. Lancet 2002 May 25;359(9320):1866. PMID: 11809249 [PubMed – indexed for MEDLINE]

Another good example of Professor Wessely’s continued involvement in CFS research are the PACE Trials.

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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JohnTheJack said:
Yeah, I think that is a real element to it: they have benefited from therapy so tend to advocate for it and dislike the claim ME patients are somehow disparaging metal illness by rejecting the CBT-GET approach.
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...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.
 
I'm skimming through the many links in the article. Has there been any change on this subject?

https://www.disabilityrightsuk.org/...trayal-disabled-people-rise-hostility-fuelled

"7 September 2012

Disability Rights UK has surveyed disabled people’s views of press coverage of disability – examining the rise of hostility towards disabled people and its causes.

Findings from disabled people surveyed were that:

  • Over three quarters (77%) could cite negative press articles about disabled people; only a third (35%) a positive story;
  • 94% suggested press portrayal of disability equality issues was ‘unfair’ and 76% said the volume of negativity was ‘significantly increasing’;
  • 91% said there was a link between negative press portrayal of disabled people and rising hostility/hate crime;
  • Nearly half (42%) suggested the government was responsible for rising press negativity and hostility towards disabled people."
 
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!!

It's a great shame when someone sympathetic can't write about what the story actually is. I understand that FR has a remit - she's employed to write social commentary around disability and health issues and her article fits that narrative. I shouldn't really be angry or disappointed with her and I do appreciate the links she included that could introduce readers to issues with the science.

I ask myself what have the public learned from all this and I really don't like the answer. I just want someone to tell the story in a factually accurate way. I'm tired of picking for scraps amongst irrelevant or harmful nonsense.
 
Skycloud said:
It's a great shame when someone sympathetic can't write about what the story actually is
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I think we can probably mostly agree that this was not quite the article we would have hoped for. But within this narrative we should not turn upon Ryan. She no doubt did what she could within the constraints of her health and editorial control. The question for the Guardian is why they have not produced an article unfettered by such constraints.
 
Skycloud said:
I re-read the article today and I'm still a little angry and disappointed : the story isn't Liddle!!
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I think that's a bit unfair. Liddle is part of our problem.

And if Frances Ryan's story gets Guardian readers realising that treating pwME badly is unacceptable behaviour as bad as Liddle, that's a useful message.

I suspect if she'd written the article we want about the specific ME problem and Sharpe's behaviour, it wouldn't have been published by the Guardian. There's a place for both types of article, I think. I wouldn't be angry with someone who is only allowed to write one type when we'd prefer the other. And she put in good links that may lead some readers to learn more.
 
rvallee said:
Even being showed relevant information that directly contradict the premise they still knowingly promote a misleading account because they take Sharpe's claims at face value, something that fails the first class of journalism 101.
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Yea, what is it with journalists and "experts"? Its like they check their journalisim training at the door and just gaze doe-eyed at the master, scuttling for any tidbits emitted from the lips of greatness.
 
I agree with you @chrisb and @Trish and if it's not clear I'm not turned against Frances Ryan. I think I might have been misunderstood and that's my fault, I find it hard to focus on a writing. My reaction last night was a response to several days of shit. Her article felt like the final straw for the following reason : My frustration is that over several days of articles no journalist gave counterarguments to Sharpe's allegations and his narrative. There's been nothing of any substance. Ryan's links and calling out of Liddle are the best it's got. My reaction is frustration at injustice, not frustration with Ryan herself, but I think I'm allowed to feel anger and disappointment on reading her piece (I am familiar with her articles and this was consistent) knowing that this is almost certainly as good as it's going to get. I don't see anyone else producing an article on this now, I think this story has probably run its course unless there's some new event.

Trish said:
I think that's a bit unfair. Liddle is part of our problem.

And if Frances Ryan's story gets Guardian readers realising that treating pwME badly is unacceptable behaviour as bad as Liddle, that's a useful message.

I suspect if she'd written the article we want about the specific ME problem and Sharpe's behaviour, it wouldn't have been published by the Guardian. There's a place for both types of article, I think. I wouldn't be angry with someone who is only allowed to write one type when we'd prefer the other. And she put in good links that may lead some readers to learn more.
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I'm certainly not saying there shouldn't be space for both types of article, However the best, only, article that was helpful was the one focusing on Liddle - we didn't get the other kind, anywhere, so there isn't space in the national media for both kinds of article. I find that deeply frustrating. I acknowledged FR's remit and the links she gave in my post. I'm familiar with her articles and appreciate her work.

Ihope this clearer (if I wasn't clear before) but this has taken me an hour and I can't put more effort in :)
 
Trish said:
A bit behind today, I've just caught up and read the article. I think it's good. I think the guardian reading public will get the clear message from it that if you say discriminatory things about pwME you are no better than the ghastly Rod Liddle. And it gives good links for people who want to learn more.
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I think it's very good, Frances speaks from the heart, she seemed genuinely outraged at Liddle's portrayal of ME. Her piece was never going to be a forensic investigation of PACE/ME politics - that would be impossible in the timeframe, and she has her own energy limitations. But she is highly respected journalist and I imagine read by many other journalists so she has given pwME a great potential platform. Maybe, just maybe, another journalist will pick up the baton and properly explore the grievances of ME patients.
 
chrisb said:
I think we can probably mostly agree that this was not quite the article we would have hoped for. But within this narrative we should not turn upon Ryan. She no doubt did what she could within the constraints of her health and editorial control. The question for the Guardian is why they have not produced an article unfettered by such constraints.
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Absolutely. And writing an article to a deadline is exhausting, I have only done it v occasionally. Let's appreciate what Frances has done instead of dissing her.
 
Skycloud said:
Is this a reference to my posts? I can't remember what else has been written in this thread. In case it is I wasn't dissing her.
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Sorry, Skycloud, and apols if I got mixed up, I had a quick look at this thread last night and just now and prob got confused at who was saying what. Forgive my error, and maybe 'diss' is too strong. Just wanted to defend Frances' article. I am crap at following threads, my cognitive function is partic bad at this kind of thing, I shd prob have paid more attention.
 


I also appreciate Frances Ryan's article and think it's very good. Her focus was Liddle. We can't push someone who is not responsible for publishing the Reuters and other twisted articles to write on what we see as more relevant to us.

And as others said, it might have provided a good soil for other articles targetting Kelland's/Sharpe's narrative.

In her article Frances Ryan also linked to some useful information, e.g. Hilda Bastian's blog article (I look forward to seeing HB returning to social media, it seems to me she is having an unusually long break on Twitter.)

(Apologies for my sporadic appearances on diverse threads, I am not able to catch up with this and other most relevant recent threads, not even able to skim them, so my recent comments are somewhat arbitrary, only replying to what I happen see when I am able to read and what I am able to digest, and out of this arbitrary selection, what seems to me to be most relevant at the moment)
 
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