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.

 

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.

 

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.

 

I asked ChatGPT to identify the differences:

 

The revised letter is not currently published.

I don't know how this is normally done, but I have sent a rapid response requesting an explanation for why my response was censored and will share the reply here. If I ever get one.

 

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.

 

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.

 

It's up now. Thanks for getting a much-needed response up replying to this commentary
https://jnnp.bmj.com/content/early/...atigue-syndrome-and-myalgic-encephalomyelitis

 

They seem to have removed the notice about politeness and defamation.

 

Hey, you! Be polite while being oppressed! And don't speak ill of your oppression.

 

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"".

 

"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

 

I almost did something like that

But these people have no sense of humor so I was as boring as possible. Still got censored...

 

I would love that

 

NICE have now shared with us that they submitted their own rebuttal paper direct to the JNNP and are awaiting a response.
Edit: They are happy for this to be public knowledge.

 

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 good as it needs to be. My expectations are unusually high.

 

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.

 

It has been submitted for review. Peter Barry said it was okay to tell people.