NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, 2024, Barry et al.

do you have a copy for me please.

 

The answer is actually pretty simple. If the original article is open access which it is, then a response should also be open access, but sometimes as we have seen before that needs to be pointed out to the (editor of the) journal

 

https://jnnp.bmj.com/pages/editorial-board

Journal of Neurology, Neurosurgery & Psychiatry

Editorial Board members

--------------------------

Editorial office

Journal of Neurology, Neurosurgery & Psychiatry Editorial Office BMA House Tavistock Square London, WC1H 9JR UK
Email: jnnp@bmj.com Tel: +44 (0) 203 655 5997


I'd contact them but I've been up most of the night with my son and not at my most articulate, today.

 

Maybe Jon Stone and Alan Carson should be approached to make it open access! they're both involved with the journal. Have any of the usual suspects issued any responses yet to the NICE article, as far as anyone has seen?

 

Apols if anyone's shared a googledocs version on this thread already...but here it is again

 

In contrast to the original JNNP rant article, I've not seen any media coverage of NICE's reply. I'm not sure if that is a good or bad thing but it would be nice to see PACE Club getting a dressing down from NICE in the media - particularly if they picked up on SW appearing to directly contradict himself.

 

Oh man, NICE's response is so good to finally see after all this time. It's all so well-said and reasoned. I fervently hope it will become un-paywalled but it's great to see full copies of it in various other sources in the meantime. This really needs to be widely seen. And yes, I specially love

Priceless!

 

https://twitter.com/user/status/1762969233292468272



MortenGroupOxford
Progressing research | Providing Hope | Preserving Dignity — We do biological ME/CFS research at
@UniofOxford
#OxMEDiscovery
Oxford, England

https://drive.google.com/file/d/1lDb4giYqIzUjXwGU4OpeOsVxWOalOanB/view

Nice to see this out!

 

Thank you!

 

ME Association:

https://meassociation.org.uk/2024/0...e-based-on-a-thorough-review-of-the-evidence/

JNNP: NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence
February 29, 2024

"...The reply from NICE represents a very robust defence of the way in which NICE reviewed all the evidence and the new treatment recommendations – centered around energy management and pacing – that were agreed by the guideline committee. We would like to thank Dr Peter Barry, Baroness Ilora Finlay, Kate Kelly and Toni Tan for preparing this very thorough reply. We hope that this will now mark an end to these unfounded criticisms of the new NICE guideline on ME/CFS from a tiny minority of healthcare professionals."

"While the critical review that was published last year was made free to view by the BMJ, the response from NICE is currently behind a paywall. We have requested that we take extracts from it so that you can better appreciate the response or that the BMJ make it free to view by anyone. In the meantime, all we can share is the abstract"

 

From @MSEsperanza:

Earlier in this thread I think someone asked about the possibility to leave rapid responses both on the White et al Anomalies paper and on the response by NICE authors Barry et al.

Also I think someone asked about reactions on social media or media coverage etc.

Apologies if posted already, but in any case:

1) Link to rapid responses to the Anomalies piece:

https://jnnp.bmj.com/content/94/12/1056.responses


2) Link to article metrics (Anomalies piece):

https://jnnp.bmj.com/content/94/12/1056.altmetrics

There you'll find not only the media outlets citing the piece but also that it's quoted on the Wikipedia page on NICE:

"A joint statement of medical leaders, published by the Royal College of Physicians, expressed concern that the NICE guidelines for ME/CFS (October 2021) did not properly evaluate or recommend graded exercise therapy and cognitive behavioral therapy for the treatment of ME/CFS.[38] A study by 49 academics concludes that the dissonance between the 2021 guidelines the previous guideline was the result of deviating from usual scientific standards of the NICE process. The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability.[39]"

https://en.wikipedia.org/?curid=429680


3) Link to rapid responses to the paper by NICE authors (no responses yet -- last checked 2024-02-29):

https://jnnp.bmj.com/content/early/2024/02/28/jnnp-2023-332731.responses


4) Link to Article metrics (NICE response):

https://jnnp.bmj.com/content/early/2024/02/28/jnnp-2023-332731.altmetrics



The reference on Wikipedia is in the Swedish language Wikipedia page on "CFS" if I understood correctly, but no spoons to check.

Agree with others that the response by NICE authors should be free access AND the paper it responds to should somehow show that it has a response by NICE people which it currently doesn't .

Also would be nice if some of the media outlets that reported about the Anomalies paper would now also report about its rebuttal.

 

Nothing to do with the journal. As an author, you can choose whether to make your paper open access or not. Keeping your paper behind a paywall is free while open access publishing is very expensive. I looked up what it costs at JNNP and it's nearly 4000 pounds. NICE obviously haven't chosen to pay to make their paper accessible/quotable to the general public.

https://jnnp.bmj.com/pages/authors#article_publishing_charges

 

I don't see this as a big problem. The NICE reply will come up on PubMed with an abstract and all academics and physicians will be able to access it through institutions. Members of the public can otherwise access all they need through S4ME.

 

I wish s4me popped up higher on google results. Took me a while to find it when I first started religiously reading ME literature.

 

I am afraid that maybe the robots have concluded that S4ME members are much too sensible to be worth putting it at the top of Google. And they will have established that the most expensive items that members buy are vegetable knives, earplugs and soup warmers!

 

https://authors.bmj.com/after-submitting/rapid-responses/

Responsible debate, critique and disagreement are important features of science. BMJ welcomes reader responses, questions and comments to published articles in its journals to allow a range of opinions to be expressed and to promote debate.

A rapid response is a moderated but not peer reviewed online response to a published article in a BMJ journal. Anyone can submit a rapid response on the journal website and they are free to access. Rapid responses should be no longer than 600 words (excluding references), they should not include original data, tables, figures, images or patient information. Responses do not receive a DOI and are not indexed in third party databases.

Many BMJ journals publish Letters or Correspondence; these are peer reviewed articles submitted to the journal’s submission system. These articles receive a DOI and are indexed in the applicable indices associated with the journal. Some rapid responses may be selected for publication in the journal as Letters or Correspondence; in these cases the author will be informed of the required steps etc.

 

Are any of the other comments to their article paywalled - I know lots weren’t published or took time to be as well?

what’s ‘the Norm’ for other journals?


I thought even if article pay walled responses often aren’t so to have a response paywalled when the article wasn’t seems an eccentric/ unusual combo

 

I've edited my post at: https://www.s4me.info/threads/nice-...nce-2024-barry-et-al.37429/page-2#post-518192

to add the link for the Rapid Responses to the White et al 2023 Review.