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

The basic way to write a scientific piece for publication is that each sentence should be able to be backed up by a reference (or it should be so self evident or flow from logic as to not to require one). While the rules are maybe not as strict for an e-letter, I have adopted a similar method when writing more than 100 over the years that have been posted on different sites, nearly all of which got through.

I’d encourage people to try to back up at least most of your points with references. It then makes it hard for a journal not to post replies and tends to keep responses on track.

I have tended to avoid ad hominems but you can often still come down hard on points made.

If someone wanted to go down the ad hominem line, I would encourage them to write and submit two or more responses so as not to jeopardise the posting of points that were about the subject matter itself (as opposed to the writers) and not make it easy for a journal to turn down a post.

By the way, I have seen the World ME Alliance response and believe it should get posted. It isn’t nearly as inflammatory and has lots of references.

 

In general, if you want to make a point in a response but are unsure of a reference, you could ask on a thread and people might be quite willing to give a suggestion or alternatively say what you want to say may not be true or easy to justify.

 

Good stuff

I submitted my rapid response last week. No response so far. I have had confirmation from the office that they have received it.

 

Apologies if anyone saw a post from me just now - I made a post regarding MEAction UK's response to the JNNP, but jumped the gun as we have not actually sent it yet!
As such I've deleted the post here and will post it again tomorrow morning.

Oh dear I guess I could work for a journal as a professional post deleter

 

Thank you for this information

 

MEAction UK initially sent a quick email to the JNNP straight after it was noticed that our rapid response was removed from publication to see if it was just an error.

Around the same time as the JNNP updated the online paper with their comment explaining the removal, we received an email response saying it had been removed for "inappropriate inflammatory language" following "further editorial consideration" and nothing else.

Rather than submitting a new rapid response, we're choosing to try and work with the JNNP to understand the specific cause for the change in heart and to get the rapid response reinstated to sit alongside the paper where we feel it rightfully belongs having already been published and thus part of the public record.

As such we have now emailed the BMJ Editor in Chief, the JNNP Editor in Chief the and the JNNP Editorial Office Team with text that can be found at the following link:
(Content also pasted below for those who want to stay on s4me !)

https://www.meaction.net/2023/07/27...-removal-of-rapid-response-from-jnnp-website/

 

We are disappointed that the JNNP decided to remove our Rapid Response to, “Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis”.1

In the email from your editorial office ‘inappropriate inflammatory language’ is cited as the reason for removing our Rapid Response. However, our response was posted for several days and also edited without anyone in the editorial office considering it to be ‘inflammatory’. In your terms and conditions you say that, ‘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.’2 As the original response was considered suitable to be published we find it surprising that editing wasn’t considered before removal.


It is also intimated in the online notice that our response fell foul of the ‘hostile or hateful speech’ clause. This was not mentioned in the email to us and is a particularly egregious accusation in relation to a marginalised patient group who have repeatedly reported being gaslit by the medical establishment.

In a 2013 post, Sharon Davies, the rapid responses editor for the BMJ, said ‘we adhere strictly to our policy of not deleting rapid responses once we have posted them. The only exception is when we’re told to do so by lawyers.’3

Is it the case that you have been instructed to take this exceptional step by lawyers or under pressure from the authors of the paper and supporters, rather than ‘inflammatory language’? We would be very disappointed if the JNNP had given in to outside pressure and ask that you engage in a constructive dialogue with us to find a way to reinstate our response. We intend to publish this response and any further correspondence unless you request that we do not.

Finally, we would like to thank the editorial team who originally posted our Rapid Response and prioritised debate and openness.

Sincerely,

Denise Spreag
Janet Sylvester
Malcolm Bailey
– MEAction UK Trustees

https://jnnp.bmj.com/content/early/2023/07/09/jnnp-2022-330463
https://www.bmj.com/company/journals-terms-and-conditions-for-rapid-responses/
https://blogs.bmj.com/bmj/2013/01/3...uctant-to-remove-rapid-responses-from-bmj-com

 

Of particular interest to people would be this post from a previous BMJ rapid response editor.
https://blogs.bmj.com/bmj/2013/01/3...ctant-to-remove-rapid-responses-from-bmj-com/

 

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.”

 

just for info; conflict of interest part

https://jnnp.bmj.com/content/early/2023/07/09/jnnp-2022-330463

 

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!

 

This is an excellent response, and good to hold them to account!

 

doesn't mention that TC is head of PPS dept at KCL,

" received payments for workshops on CBT for CFS/ME."
psychwire Professor Trudie Chalder | ASK | Psychwire

and cbtreach

Trudie Chalder | CBTReach

she was also on the medical advisory board for FND Action (2017)
https://www.fndaction.org.uk/introduction-fnd-actions-new-medical-advisory-board/

 

I am utterly gobsmacked at the breadth and depth of the conflicts of interest. I knew they existed but the scale is beyond belief.

Is there a medical body that exists that can investigate this? I don't know the role of the GMC, other than the Dr Myhill events. Surely there must be some public body who is tasked with investigating such conflicts. I have a doctor's appointment next week. I feel inhibited from consulting someone from such a damaged profession.

 

Oh, I do far more than merely doubt it. They have removed all reasonable, even possible, doubt with their behavior over the years.

However I'd note that this isn't about outside pressure, it is clearly inside pressure since some of their own are on the editorial team, and nearly everyone else fully agrees, has collaborated or worked directly with both of them. This is all very corrupt.

 

I don't see mention of Wessely's conflict being part of PACE, despite his false claims otherwise.

Doesn't appear to note that Jon Stone and Alan Carson are on the editorial board of the journal that published their own letter. This very long list of conflicts is clearly incomplete. I assume there would be far more if anyone bothered looking into that. A full list would probably actually be longer than the whine/commentary itself.

 

Sadly, I doubt anyone would care. I definitely still want this list to be accurate, but I fully assume that no regulatory body, or even minor institution, thinks there's anything wrong with this. They think this is what we deserve.

For sure it will eventually look corrupt and awful, and I want this list to be accurate for this reason alone. But the systemic misbehavior is obvious here.

 

I'm not sure that whether anybody ( in a regulatory body) would care is the only point at the moment. Bringing public awareness to what is happening is a valid aim in itself. If all corrupt behaviour stays unexamined, then change will never occur. We in the ME community know that better than most.