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

Thanks for your perseverance @MBailey and to those who helped.

I agree with the content of the original letter but I think the language in the revised version is more appropriate for a science journal and may therefore be more persuasive to those we are trying to enlighten.

Thanks again.
 
Robert 1973 said:
I’ve just emailed NICE to ask where and when its “detailed response” to the JNNP article will be published.

Will post if I receive a reply.
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I’ve just received the following reply from NICE:

“On 20 Sep 2023, at 15:07, National Institute for Health and Care Excellence (NICE) <nice@nice.org.uk> wrote:

Dear Robert

Thank you for contacting NICE.

You are welcome to share this response.

We expect to submit our response to the Journal of Neurology, Neurosurgery, and Psychiatry shortly. The date is to be confirmed but once published we will be able to signpost enquirers to the article.

I hope this information is helpful.

Kind regards

Janet

Communications Executive
National Institute for Health and Care Excellence”


I’m pleased that they are submitting their response to the JNNP. I assume that it will appear in the print edition not just as a rapid response, in which case it may be delayed by peer-review. I really hope it’s good as it needs to be and that it gets at least as much media coverage as the article it is responding to. I also hope “shortly” means weeks not months, years or indefinitely.
 
Robert 1973 said:
Thanks for your perseverance @MBailey and to those who helped.

I agree with the content of the original letter but I think the language in the revised version is more appropriate for a science journal and may therefore be more persuasive to those we are trying to enlighten.

Thanks again.
Click to expand...
I hope some of the other people who made many solid points will consider re-submitting an edited version of their original submissions. My guess is the journal might not be interested in discussing what needs to go (the MEaction UK situation was unusual as the e-letter had been posted then removed).

Also note that with e-letters, you can send in more than one in reply to the same article. I have posted more than one many times to lots of different journals. I can’t remember all the reasons but I probably figured people might be more likely to read shorter submissions. Also you get to then have different titles and can concentrate on proving particular points and the like.
 
MBailey said:
https://www.meaction.net/2023/09/19/jnnp-to-publish-edited-rapid-response-by-meaction-uk/

The JNNP have now agreed to reinstate, an edited version of MEAction UK's rapid response. We agreed to their suggested changes, and removal of the notice as we think it's important to remain on record alongside the original paper. With the other published Rapid Response (Dom Salisbury, Robert H Saunders and Jonathan CW Edwards) we feel that this at least gives some long term rebuttal to the "paper".
  1. No reason was given for initially approving our response before removing it, just pointing to their terms and conditions.
  2. Our Subject Access Request also yielded no further useful information.
  3. We don't have a date for the updated response to be published, but at a guess it would be in the next few days.
Why other responses weren't published or even acknowledged I have no idea, but I suspect the JNNP if challenged, would just say they don't have to and it's the editors decision.
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I asked ChatGPT to identify the differences:
After comparing the original and updated versions of the text, I found the following differences:

  1. Paragraph 3: End Point and GRADE Details Removed
  • Original: Mentions the authors' misunderstanding of GRADE (Grading of Recommendations Assessment, Development and Evaluations) and talks about end points.
  • Updated: This section has been removed.
  1. Paragraph 4: MEAction UK 2019 Report Reference
  • Original: References the MEAction UK 2019 report "ME services in the UK Not Fit For Purpose."
  • Updated: This specific reference has been omitted.
  1. Footnotes Missing
  • Original: Contains numerical footnotes like "ME1," "Purpose2," "sources3," and "activity4."
  • Updated: These have been removed.
  1. Inclusion of Authors' Favored Treatments
  • Original: Discusses Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) as "pet therapies" of the researchers critiquing the NICE guideline.
  • Updated: Explicitly mentions GET and CBT in the conclusion.
  1. Text Truncation
  • Updated: The text appears to be truncated at the end, making it incomplete compared to the original version.
No other differences in content or phrasing were identified between the original and updated versions. Both versions still critique the authors of the Journal of Neurology, Neurosurgery & Psychiatry article for their approach to ME/CFS and support the NICE guidelines.
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Robert 1973 said:
I’ve just received the following reply from NICE:

“On 20 Sep 2023, at 15:07, National Institute for Health and Care Excellence (NICE) <nice@nice.org.uk> wrote:

Dear Robert

Thank you for contacting NICE.

You are welcome to share this response.

We expect to submit our response to the Journal of Neurology, Neurosurgery, and Psychiatry shortly. The date is to be confirmed but once published we will be able to signpost enquirers to the article.

I hope this information is helpful.

Kind regards

Janet

Communications Executive
National Institute for Health and Care Excellence”


I’m pleased that they are submitting their response to the JNNP. I assume that it will appear in the print edition not just as a rapid response, in which case it may be delayed by peer-review. I really hope it’s good as it needs to be and that it gets at least as much media coverage as the article it is responding to. I also hope “shortly” means weeks not months, years or indefinitely.
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I'm confident it will be good. Peter Barry and Ilora Finlay no doubt helped write it, and they are very clued up. I am always impressed and awed by their level of detail and care.
 
adambeyoncelowe said:
I'm confident it will be good. Peter Barry and Ilora Finlay no doubt helped write it, and they are very clued up. I am always impressed and awed by their level of detail and care.
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Yes, it’s great to have people like this on our side. One positive of all this is that they must be fully aware of what we’ve been up against now. It will be interesting to see how many people sign the NICE response. The contrast in the the conflicts of interest statements should be stark.
 
MBailey said:
https://www.meaction.net/2023/09/19/jnnp-to-publish-edited-rapid-response-by-meaction-uk/

The JNNP have now agreed to reinstate, an edited version of MEAction UK's rapid response. We agreed to their suggested changes, and removal of the notice as we think it's important to remain on record alongside the original paper. With the other published Rapid Response (Dom Salisbury, Robert H Saunders and Jonathan CW Edwards) we feel that this at least gives some long term rebuttal to the "paper".
  1. No reason was given for initially approving our response before removing it, just pointing to their terms and conditions.
  2. Our Subject Access Request also yielded no further useful information.
  3. We don't have a date for the updated response to be published, but at a guess it would be in the next few days.
Why other responses weren't published or even acknowledged I have no idea, but I suspect the JNNP if challenged, would just say they don't have to and it's the editors decision.
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It's up now. Thanks for getting a much-needed response up replying to this commentary :thumbup:
https://jnnp.bmj.com/content/early/...atigue-syndrome-and-myalgic-encephalomyelitis
 
RedFox said:
Someone needs to write a reply called "Anomalies in "Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis"".
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"Yo Dawg. I herd you like anomalies, so we put anomalies in yo anomalies so you can fabricate while you collaborate and aggravate as you exaggerate."

Edit: reordered
 
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Robert 1973 said:
I’m sure they will but it would be quite amusing and potentially helpful for us if they didn’t. Peter Barry et al can’t be silenced in the way we have been.

I just hope it’s as a good as it needs to be. My expectations are unusually high.
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JNNP initially published only one letter, and it was the only one written by a MD who doesn't have ME. Although they didn't publish the one by the group of MDs with ME.

They haven't even replied to my request to explain why mine is censored. I think they'll publish this one as a normal letter, they just don't see us dumb patients as being worth listening.
 
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