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

Jonathan Edwards said:
⇒ Treatments for CFS/ME should be negotiated between
healthcare professionals and patients and should always be
delivered collaboratively.


I would also strongly contest this. It reveals just how patronising the authors are.

There is nothing to be 'negotiated' about treatments. The job of the health care professional is to offer what they believe are useful treatments, based on evidence, no more. The decision to take up a treatment is ENTIRELY a matter for the patient. There is absolutely nothing to 'negotiate'. The healthcare professionals are paid to provide a service. The patient has no obligation to offer anything in exchange - which is what negotiation means.

This is an admission of a totally outdated and inappropriate view of delivering healthcare.

And nothing is to be 'delivered collaboratively'. It is to be delivered competently by the professional.

The whole concept of 'shared decision making' is in reality the opposite of what it is billed as. It is just a softer form of coercion.
Click to expand...
That was something I noticed too. Imagine the effort of "negotiating" every single treatment with your doctor! You'd collapse based on that alone.
 
The whole negotiation thing implies that the patient is refusing to do more activity for no reason and that the job of the therapist is to coax them into doing the right thing by negotiating little increments each week. It’s very insulting and wrong.
 
Sid said:
The whole negotiation thing implies that the patient is refusing to do more activity for no reason and that the job of the therapist is to coax them into doing the right thing by negotiating little increments each week. It’s very insulting and wrong.
Click to expand...

Bang on the mark. I've never seen it put so clearly before.

It's like when someone is addicted to a substance but realises they need to stop using. They have a sponsor or therapist to whom they become accountable, who supports their goal either to stay completely sober or reduce their use incrementally. Either way, they regularly report back to their sponsor who enables/challenges them to keep on track.
 
Adrian said:
It would be interesting to look at trials for FND and see if they use the same dodgy methods. This could be seen as a group of doctors seeing challenges to an approach they have but from a different group of patients. They know their work and treatments are similarly dodgy so they defend the dodgy ME treatments.
Click to expand...

The do--ie CODES trial. And the players overlap with the usual suspects.
 
The Journal of Neurology, Neurosurgery & Psychiatry has now removed the @MEActNetUK
e-letter (see: https://www.meaction.net/2023/07/12...apid-response-to-the-jnnp-in-support-of-nice/ ) in response to "Anomalies in the review process and interpretation of the evidence in the NICE guideline for [CFS] & myalgic encephalomyelitis" :muted:

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

I'm guessing that the authors of "Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis" objected.

Click to expand...
 
Last edited:
I feel devastated.
I hope this is a mistake: Having realised that the letter was printed twice, that they are remedying the mistake.

If a corrected (single) version doesn't go back up, is there something we can do about this?

For Pete's sake, this is the BMJ, a supposedly reputable journal.

What's the point of 'other responses' if they can vet them so unashamedly?

I am really losing hope. So much is stacked against us.
 
upload_2023-7-25_16-19-51.png

They are in fact lying, because a response has been published. The fact they later chose to remove it does not change that. Have we got the evidence there was a response published?

Because if it can be shown they did publish a response, and then removed it, for all to see what they have done, then it should be for them to explain themselves.

It is all so corrupt.
 
Last edited:
Tom Kindlon said:
The Journal of Neurology, Neurosurgery & Psychiatry has now removed the @MEActNetUK
e-letter (see: https://www.meaction.net/2023/07/12...apid-response-to-the-jnnp-in-support-of-nice/ ) in response to "Anomalies in the review process and interpretation of the evidence in the NICE guideline for [CFS] & myalgic encephalomyelitis" :muted:

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

I'm guessing that the authors of "Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis" objected.
Click to expand...
What an incredibly corrupt system. Illegitimate, even. They censor valid criticism, again and again. On the say so of the very people who are the target of that valid criticism. Criticism that many reputable organizations have substantiated, in this case literally what this is even about. And all on the fiction of a system of review and substantial debate, which they shut down at every opportunity.

BMJ gonna BMJ, it is the medical journal of the British Medical Association after all, where obviously people like Wessely and Gerada can exert their corrupt influence. Disgusting.
 
Last edited:
Barry said:
View attachment 20026

They are in fact lying, because a response has been published. The fact they later chose to remove it does not change that. Have we got the evidence there was a response published?

Because if it can be shown they did publish a response, and then removed it, for all to see what they have done, then it should be for them to explain themselves.

It is all so corrupt.
Click to expand...

The truth of the matter is, that the letter of response from MEAction UK, although put together in a hurry, was very good. Indeed, it was TOO GOOD - Not just factually correct, but very raw.
It would be hard for anyone neutral, after reading that, to side with the authors.

I can see (from their point of view) why it had to go.

I still feel quite devastated. When will this end? Do we have to wait for the death of these 'eminent professors' before we see systemic change?
So much of history would suggest so.
 
Tom Kindlon said:
The Journal of Neurology, Neurosurgery & Psychiatry has now removed the @MEActNetUK
e-letter (see: https://www.meaction.net/2023/07/12...apid-response-to-the-jnnp-in-support-of-nice/ ) in response to "Anomalies in the review process and interpretation of the evidence in the NICE guideline for [CFS] & myalgic encephalomyelitis" :muted:

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

I'm guessing that the authors of "Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis" objected.
Click to expand...

We had no prior notification about our RR being removed, so this afternoon we've emailed the JNNP to ask for clarification.

Despite (copious) previous evidence to the contrary, I try to assume human error in the first instance and that this happened as a screw up while they were fixing the double post issue.

However, we are now awaiting their response to our email and will see if this needs to be escalated.
 
Tom Kindlon said:
I wouldn't consider this to be the BMJ.

The BMJ itself though being very biased in its coverage of ME/CFS has actually been very good at posting critical e-letters from patients on the BMJ journal website
Click to expand...
I agree to a point. If the leadership of the JNNP is unable to deal with this competently, the responsibility to hold accountable falls to the parent organization. There is a limit to editorial independence, this clearly isn't the journal being editorially independent.

Unless this is simply an error. Which it could be, but past behavior suggests that this is not likely to be the case.
 
I'd give it a day or two before drawing conclusions, indeed:

MBailey said:
However, we are now awaiting their response to our email and will see if this needs to be escalated.
Click to expand...

I'm assuming it would have been an easy edit to remove the double text, but it's still possible someone removed it yesterday afternoon for editing and has it on their schedule for reposting this morning.

That being said, glad there's an eye on it. The bps movement is hell bent on disarming the "problem" that is the NICE guideline, because if they don't have GET for ME, everything falls apart (including CBT). And from what we know about @InitialConditions 's FOI request, they are willing to go extremely far to make it go away.

This is speculation, but I would not be surprised if NICE is currently also the recipient of a pressure campaign to not write or water down their firm response. I hope it will only strengthen their resolve to stand up for their own work and for the patients.
 
Tom Kindlon said:
The Journal of Neurology, Neurosurgery & Psychiatry has now removed the @MEActNetUK
e-letter (see: https://www.meaction.net/2023/07/12...apid-response-to-the-jnnp-in-support-of-nice/ ) in response to "Anomalies in the review process and interpretation of the evidence in the NICE guideline for [CFS] & myalgic encephalomyelitis" :muted:

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

I'm guessing that the authors of "Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis" objected.
Click to expand...

Update from JNNP re: @MEActNetUK eletter
"Please note that a previously posted Rapid Response was taken down because of inappropriate inflammatory language. While we encourage scientific discourse, it should be polite and non-defamatory..."
https://jnnp.bmj.com/content/early/...63.responses#notice-regarding-rapid-responses
#MEcfs #PwME
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom