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The Lancet (UK) editorial: "What's in a name? Systemic exertion intolerance disease"

adreno

PR activist
Messages
4,841
Yes, but it's an opinion based purely on belief with no evidence whatsoever to back it up. That has no place in science, debate, or reasoned discussion.
I agree. You aren't entitled to any opinion in scientific matters. You are entitled to interpret the data, not hearsay, and the data does not support their statements.
 

Purple

Bundle of purpliness
Messages
489
I agree. You aren't entitled to any opinion in scientific matters. You are entitled to interpret the data, not hearsay, and the data does not support their statements.

Plus, if you are an editor in one of the top ranked medical journals in the world, you should think VERY carefully before propagating *opinions* that can potentially harm patients.

With great influence comes great responsibility.
 

biophile

Places I'd rather be.
Messages
8,977
Lancet editors said:
The PACE trial by Peter White and colleagues, published in The Lancet in March, 2011, was subject to widespread and unjust criticism from parts of the CFS/ME community and some advocacy groups in 2011. The PACE trial associated both cognitive behaviour therapy and graded exercise therapy with improvements in self-rated fatigue and physical function after 1 year. The most frequent criticism centred around trial outcomes and definitions, and the authors' reply published in our correspondence columns, addressed these issues clearly. Despite critical reception at the time of publication, the results of the PACE trial paved the way for this IOM report.

The editors of the Lancet seem to be implying that the points raised in the letters to the editor were groundless and that all the issues have been convincingly addressed. Perhaps the publication of these letters was never about open scientific debate but about (superficially) smacking down criticisms in public. Not surprising given that the chief editor of the Lancet appeared on radio weeks earlier blasting the critics and claiming that all criticisms against the trial were a "mirage".

If we are all "entitled to an opinion", we might as well say that anyone who dismisses all the points raised in response to the PACE Trial is either ignorant, incompetent, or delusional. Here we effectively have a supposedly prestigious journal indignantly defending the position, with a straight face, that it's OK for example, for the allegedly strict thresholds for recovery in an intervention trial to overlap with the entry thresholds for severe disabling fatigue.

The letters to the editor published in the Lancet back in 2011 have been falsely described elsewhere as personal unscientific attacks. I'm not talking about the ambiguous conflation between harassment and criticism that we often see in news article coverage, but an editorial in a medical journal, in response to the publication of the ME-ICC in 2012, which specifically cites all 8 letters as examples of personal unscientific attacks.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02468.x/full

J. W. M. van der Meer and A. R. Lloyd said:
This dispute between the various protagonists recently surfaced with the PACE trial published in the Lancet [2], which provided evidence for effectiveness of elements of cognitive-behavioural therapy (CBT) and graded exercise therapy (GET) for patients with CFS. This publication triggered unscientific and sometimes personal attacks on the researchers in both the scientific literature [3-10] and via the Internet [11].

When one of the letter writers complained (threatened or initiated legal action), one of the authors of the editorial in question apologized and withdraw the statement but only for that particular letter and actively maintained that all the other letters were examples of personal unscientific attacks:

http://onlinelibrary.wiley.com/doi/10.1111/joim.12074/abstract

Lloyd said:
Dear Sir, In our commentary [1] on paper by Broderick et al. regarding diagnostic criteria for CFS [2], Professor van Der Meer and I inadvertently cited a letter by Stouten et al. in a section of our correspondence suggesting that their response to the publication of the PACE [3] trial for patients with CFS was unscientific and included personal attacks on the authors of that study, as it was interspersed with a series of letters that met those descriptors. However, it is clear that the letter by Stouten et al. raised valid scientific concerns about the trial. We wish to note that this letter should not have been included as an example in our correspondence and apologize to the authors for any distress caused.

The Lancet also refused to publish a formal correction for erroneous claims made in the editorial accompanying the PACE paper, and during the investigation by the Press Complaints Commission which ruled that the editorial was misleading, the authors stood by their erroneous claim that the PACE paper reported on a strict criterion of recovery based on healthy scores. Accuracy does not seem to be a priority for them but maybe saving face is. However, the PCC did not think that the Lancet had to take action, because the (PACE) authors' reply had generally clarified that recovery rates were not yet reported.

Interesting letter from the Countess of Mar writing to Professor White:

http://forums.phoenixrising.me/inde...-and-prof-white-and-prof-sir-s-wessely.21545/

Countess of Mar said:
That you made no attempt at correcting the misinformation in The Lancet Comment by Bleijenberg and Knoop is not surprising, given that the Deputy Editor of The Lancet has confirmed that you approved it before publication: “The Comment in question was reviewed, as is our standard practice, by the authors of the accompanying PACE trial” (letter dated 22nd January 2013 from Dr Astrid James to the Press Complaints Commission).

The Deputy Editor goes on to state about my complaint to the Press Complaints Commission concerning the Comment: “We would like to reject this complaint in the strongest possible terms. We believe there are no inaccuracies….We have shared the complaint with Dr Bleijenberg and Dr Knoop and they stand by the content of their published Comment….They stand by their use of the term ‘recovery’….We stand by our publication of the Comment by Dr Bleijemberg and Dr Knoop, and have found no inaccuracy that warrants a correction. We hope that our response is clear”.

This is in stark contradiction to the email sent on 8th June 2011 by Zoe Mullan, Senior Editor at The Lancet, who confirmed about the Bleijenberg and Knoop Comment that it should be withdrawn: “Yes, I do think we should correct the Bleijenberg and Knoop Comment, since White et al explicitly state that recovery will be reported in a separate report. I will let you know when we have done this”. Despite Zoe Mullan’s assurance, it has not been corrected.

Such contradiction by The Lancet reflects badly on the editorial staff.

Bonus irony points: Both authors of the (2011) Lancet editorial in question, Bleijenberg and Knoop, have published papers on CFS which regarded a score of 60 points in SF-36 physical function as reflecting severe impairment, but miraculously for the PACE Trial, suddenly it's a strict criterion for recovery based on healthy scores! It was neither strict, nor was it based on healthy scores, but a general population which included a sizable proportion that were elderly and disabled.
 
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Messages
13,774
Thanks bio.

Nice to have it all laid out like that.

Anyone know if the original of the Lancet's response to the PCC is on-line anywhere?:

The Deputy Editor goes on to state about my complaint to the Press Complaints Commission concerning the Comment: “We would like to reject this complaint in the strongest possible terms. We believe there are no inaccuracies….We have shared the complaint with Dr Bleijenberg and Dr Knoop and they stand by the content of their published Comment….They stand by their use of the term ‘recovery’….We stand by our publication of the Comment by Dr Bleijemberg and Dr Knoop, and have found no inaccuracy that warrants a correction. We hope that our response is clear”.
 

Yogi

Senior Member
Messages
1,132
People here have probably seen this article before.

I thought I would link it here as the Lancet in 1996 was on the biomedical and patients side and was critical of the Joint Royal Colleges report on CFS. It is remarkable how they have done a 180 degree turn on ME/CFS since then.

"Psychiatry has won the day for now. A decade hence, when an organic cause for at least some cases of CFS may have emerged, it would be tempting to ask the committee to reconvene. We believe that the report was haphazardly set-up, biased, and inconclusive, and is of little help to patients or their physicians. "

It seems the psychobabblers captured the Lancet.

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)64917-3/fulltext
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Having been distracted by other things I had not got around to reading the IOM report until Marco nudged me. I read it today. After reading it (I admit not absolutely all of it but at least 250 pages) I had this sense of something missing...

Then I realised what it was. I recall no reference whatever to a certain trial - forget the name just now.
 

Nielk

Senior Member
Messages
6,970
Having been distracted by other things I had not got around to reading the IOM report until Marco nudged me. I read it today. After reading it (I admit not absolutely all of it but at least 250 pages) I had this sense of something missing...

Then I realised what it was. I recall no reference whatever to a certain trial - forget the name just now.

They were not charged with commenting on treatment options.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
They were not charged with commenting on treatment options.

But that did not stop them mentioning things in the background that they thought relevant - like Fluge and Mella (even I get quoted in fact!!!). They assess the relevance of NK cell function and of infection. They refer to anti-viral studies, despite the fact that they say this is outside the main remit. They say a lot about what paved the way for the report - even the disagreements along the way. But no indication that the historical run up had anything to do with unblinded trials of CBT and GET with subjective endpoints. There is a deafening silence about all things psychological - beyond the simple statement that this is not a psychogenic illness.
 
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Dolphin

Senior Member
Messages
17,567
Having been distracted by other things I had not got around to reading the IOM report until Marco nudged me. I read it today. After reading it (I admit not absolutely all of it but at least 250 pages) I had this sense of something missing...

Then I realised what it was. I recall no reference whatever to a certain trial - forget the name just now.
It does have:
The only clinical trial targeting antibodies found moderate to marked clinical improvements in 10 of 15 subjects treated with rituximab, a B cell depleting antibody, and 2 of 15 placebo arm subjects at a single time point (Fluge et al., 2011). This, however, was a post hoc analysis as the trial failed to meet its primary endpoint. Currently, researchers in the United Kingdom and Norway are conducting further studies addressing this question (Edwards, 2013; Mella and Fluge, 2014).

Edwards, J. 2013. UK rituximab trial—statements by professor Jonathan Edwards and invest in ME. http://www.ukrituximabtrial.org/Rituximab news-July13 01.htm (accessed May 14, 2014).

Fluge, O., O. Bruland, K. Risa, A. Storstein, E. K. Kristoffersen, D. Sapkota, H. Naess, O. Dahl, H. Nyland, and O. Mella. 2011. Benefit from B-lymphocyte depletion using the anti-CD20 antibody rituximab in chronic fatigue syndrome. A double-blind and placebocontrolled study. PLoS ONE 6(10):e26358.

Mella, O., and O. Fluge. 2014. B-lymphocyte depletion using rituximab in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME). A randomized phase-III study. (RituxME).
https://clinicaltrials.gov/ct2/show/NCT02229942 (accessed September 17, 2014).
 

user9876

Senior Member
Messages
4,556
And also trying to control the way people respond i.e. write a letter (that will never be published) and stop trying to embarrass us through Twitter and other social media we cannot control.

Few would read a letter but a social media campaign to bring doubt on a journal until it improves its editorial standards would be much more powerful
 

aimossy

Senior Member
Messages
1,106
ME/CFS feels like you have had the 'Dementor's kiss'. Jonathan reminded me of my favourite analogy. Kind of has a double meaning now.
 
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biophile

Places I'd rather be.
Messages
8,977
It's difficult to follow conversations on Twitter, but apparently a Lancet editor is refusing to answer polite questions about how the PACE Trial paved the way for the IOM report (as claimed in their editorial on the IOM report), accused people of being bullies, and blocked Jennifer Brea for a tweet which was clearly sincere and unoffensive.

maxwhd has collated some of the conversation and posted it as an image file:

https://twitter.com/maxwhd/status/573254582454771712

maxwhd ‏@maxwhd

How #Lancet & Editors Tamara Lucas @HylmantisL & @Pam_das avoid straight answer to straight question #mecfs #seid http://twitdoc.com/3VRF

full URL: http://twitdoc.com/view.asp?id=181131&sid=3VRF&ext=PNG&lcl=lancet-convo.png&usr=maxwhd

image file: http://twitdoc.com/upload/maxwhd/lancet-convo.png
 
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