Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

Robert 1973 said:
Well done to whoever found this.

Sharon Davies, BMJ Rapid Response editor writes [my bold]:

“We do not delete rapid responses once we have posted them, just as we did not and do not cut out pages people are not happy with when they see them in print. This is not the way of publishing. Very early on in the electronic world we realised that rapid responses were published entities, living in the public domain as soon as one of us had pressed the button. We imagined that someone somewhere might have seen the response we had posted as soon as it became live so what would it look like if we started messing about with it or, worse, deleted it after publication? People might reasonably doubt our public integrity and professionalism.”
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Wow great spot :thumbup:
 
AL reports grants for investigator initiated research grants from Gilead Sciences, AbbVie and Sequiris.
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That must be Professor Andrew Lloyd. That list of conflicts is woefully inadequate. He runs a clinic that treats people with CFS using CBT and GET:

https://www.unsw.edu.au/staff/andrew-lloyd
Director of the UNSW Fatigue Clinic and Research Program at the University of NSW. He also provides clinical services in infectious diseases at Prince of Wales Hospital, and hepatology services to Justice Health in the NSW prisons. His research program has been continuously funded by NHMRC since 1993.
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He was a co-author of an incredibly poorly done (NHMRC funded) paper re-analysing the Dubbo study data. The Dubbo study originally reported that there were no psychological characteristics that predicted who developed post-viral fatigue syndrome. The later paper made claims about psychological flaws that were unsupported by the data.
Contribution of individual psychological and psychosocial factors, Dubbo Infection Outcomes Study, 2019, Cvejic, Hickie et al

He is currently on the panel allocating AUD50 million to Long Covid research.

I was going to add links to discussions of Lloyd on the forum, but the search list runs to 7 pages.

His reputation is absolutely and utterly tied to the PACE trial standing.
 
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adambeyoncelowe said:
This is just a staggering list of COIs, and so many of them for cash involving legal claims and insurance. I feel icky after reading all that!
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Staggering is the right word.

I don’t even know where to start as someone who has had (and has ongoing) dealings with an insurer, no doubt influenced by some of these individuals..

I won and they are paying, but not before I was subjected to what my wife described as the worst day of her life, seeing me breaking down multiple times in an assessment that took several weeks to recover from. I try to be rational, but put simply, I loathe these people.

ETA; it’s apparent that so many people with ME have horror stories to tell, whether it be at the hands of insurers, DWP, doctors/GPs, OTs, OHPs or a range of HCPs. It shouldn’t be this way, but so many HCPs have been influenced by these people, who continue to try to put us down and their views/approaches to pwME are wrong as a result of the power they exert. It has to end.
 
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rvallee said:
I don't see mention of Wessely's conflict being part of PACE
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or that he and Chalder came up with the whole CBT/GET 'therapy' based on the theory of ME/CFS being deconditioning from fear of exercise and false beliefs of an underlying biological illness, making 'ideopathic fatigue' the primary symptom.
This underpins nearly all their subsequent research for other conditions that always cites their previous research on cfs, being their prime example of 'fatigue'.
The Chalder Fatigue questionnaire is another questionable piece of research that has mainstream implications if any doubt of its accuracy is raised.
 
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Sly Saint said:
a question maybe journalists might like to ask.........when was the last time any of these experts attended a conference on ME or CFS? (ones on PPS/ MUS or presentations to insurance companies don't count).
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I've seen that Hans Knoop will be at a German conference on Long Covid that otherwise has legit experts. Not sure what he is doing there but it's very exceptional for any of them to step out of their bubble.
 
Moss-Morris also missing from the list, but a paper of hers referenced as evidence for the "negotiating" bit:

Supplementary Table 3: Other trials of graded exercise therapy


And Vogt fromm Recovery Norway -- I think hasn't shown up recently in any MUS/ LC/ ME related context?
 
MSEsperanza said:
Moss-Morris also missing from the list, but a paper of hers referenced as evidence for the "negotiating" bit:

Supplementary Table 3: Other trials of graded exercise therapy


And Vogt fromm Recovery Norway -- I think hasn't shown up recently in any MUS/ LC/ ME related context?
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Vogt and Landmark made an appearance in Sweden recently, in an article about "cultural illness" and bps (post from the "News from Scandinavia" thread):

mango said:
Another opinion piece on ME by Swedish BPS/"cultural illness" proponent Hanne Kjöller :grumpy: She has been talking to Landmark and Vogt, apparently.

Vad ska läkaren göra om valet står mellan att kränka eller skada patienten?
https://www.dn.se/ledare/hanne-kjol...star-mellan-att-kranka-eller-skada-patienten/
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Tom Kindlon said:
Thanks to the World ME Alliance for coordinating a joint response which has been submitted now.
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Very disappointing that 14 days have now passed & this hasn’t been posted by the @JNNP_BMJ

Unlike another comment that was removed, this shouldn’t fall foul of any inflammatory rule (I have read it)

Readers deserve to see another opinion from the one in the commentary
#mecfs #pwme
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Tom Kindlon said:
Very disappointing that 14 days have now passed & this hasn’t been posted by the @JNNP_BMJ

Unlikely another comment that was removed, this shouldn’t fall foul of any inflammatory rule (I have read it)

Readers deserve to see another opinion from the one in the commentary
#mecfs #pwme
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I assume someone from the Alliance will email the JNNP editorial office.

Depending on response, I wonder if it might be worth submitting to the BMJ main site in response to its report on the JNNP article. BMJ main site has always been good at posting responses which are critical of BPS views and research, and I assume it has different editors. Charles’s response was on the BMJ main site, not the the JNNP site, and that seems to be the only response to have been published so far – albeit only partially.

[edit: link to Charles’s letter: https://www.bmj.com/content/382/bmj.p1621/rapid-responses]
 
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Tom Kindlon said:
Very disappointing that 14 days have now passed & this hasn’t been posted by the @JNNP_BMJ

Unlike another comment that was removed, this shouldn’t fall foul of any inflammatory rule (I have read it)

Readers deserve to see another opinion from the one in the commentary
#mecfs #pwme
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This response has also not appeared so far on the @JNNP_BMJ site along with one @Joan Crawford submitted
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The terms and conditions for Rapid responses. I have bolded a few relevant parts:
https://www.bmj.com/company/journals-terms-and-conditions-for-rapid-responses/
Journals: Terms & conditions for rapid responses
Terms and conditions for rapid responses

We intend to post all responses approved by the Editor within 14 days (BMJ Journals) or 24 hours (The BMJ). Responses must contribute substantially to the topic however it is at our absolute discretion whether we publish and timeframes cannot be guaranteed.

When you submit a rapid response, you agree to the following terms and conditions, which may be amended from time to time:

  • We aim to provide a forum for those with differing opinions to debate in good faith the often controversial topics we cover but we do not accept hostile or hateful speech of any kind directed at any individual or group. Please remember that the language used in your response should reflect the fact that BMJ's journals are part of the evidence base of medicine, used globally. If you are commenting on sensitive subjects, please be careful to avoid giving unnecessary offence, particularly when your comments refer to any protected characteristic as defined by the Equalities Act 2010 (including race, sex, disability or gender). That said, our primary objective is the provision of good evidence to support clinical decision-making, not the avoidance of offence being given and we cannot guarantee that no offence will be given by a published response. However, we will consider every complaint made to us. See our complaints process for more information: https://authors.bmj.com/policies/complaints.
  • It is for BMJ to decide whether to post responses. We will not publish any response that:
    • we consider inappropriate
    • may lead to legal difficulties (or would require us spending time or money to establish that it wouldn’t)
    • gives information on specific patients
    • is not written in English, is too lengthy or is in capital letters
    • is almost entirely a quote from somewhere else
    • does not include adequate and accurate author personal details (or uses an alias).
  • We make our own judgements on the potential implications of a response, rather than refer them to our lawyer. Potential libel is the most common problem we see. These cases do not typically warrant us spending money to confirm our judgement that something is libellous
  • Anyone can submit a response but we will not publish a response if you do not reply to our emails.
  • Your name, occupation, affiliation and declared competing interests will be published with your response. Your email address will automatically be published when submitting a response to BMJ Journals but not The BMJ. If you are submitting to The BMJ and you would like your email address to be published, please include it in the body of the text of your response. We will also process any personal data you supply in accordance with our Privacy Notice https://www.bmj.com/company/your-privacy/ .
  • You must declare any competing interests.
  • We reserve the right to edit responses before and after publication.
  • If only a line or two of an otherwise OK response is defamatory or extremely abusive, we may delete the line and post the rest.
  • Your response must be original and not infringe any third party's intellectual property rights.
  • Once a response has been published on the website, you will not be able to have it removed or edited. BMJ may, however, be able to remove or edit any response at its absolute discretion.
  • You are responsible for the accuracy of what you say in your response. We cannot check facts, although we may ask you to substantiate what you say - for example by giving a reference. It is your responsibility to check that references support the claims made.
  • Rapid responses are not routinely copy-edited, but typographical errors may be corrected by the Editor prior to publication.
  • Please do not include or link to original data in your response unless it has already been published in a peer reviewed journal and you are able to include a reference.
  • While we try to deal with all our authors in as courteous and timely manner as possible, we have limited resources. Please be patient when awaiting a response and note that we cannot enter into lengthy correspondence about why we have not posted a response.
  • We will not publish responses with figures, tables, graphics or images.
  • Responses may be considered for print publication, depending on individual journal policy.
  • All posted responses are eligible for publication in all other versions of the journal and other BMJ publications and may be sublicensed to third parties for their use as deemed fit by BMJ, including within local editions. All of these publications may be published within any media known now or created in the future, throughout the world. By submitting a response you agree to this and understand that this may occur without further recourse to you.
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https://www.theguardian.com/society...scouraging-exercise-is-flawed-say-researchers

In the above Guardian article (11th July) NICE said:

“We will provide a detailed response to this analysis and in the meantime we are confident that system partners and the ME/CFS community will continue to work together to make sure the important recommendations in our guideline are implemented.”


Did NICE mean a rapid response or something else?
 
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