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

From:
https://www.irishnews.com/news/ukne...in_chronic_fatigue_syndrome_guidance-3426398/

 

oh haha! LOL duh i was thinking you meant that things had been better recently or something.

When you said the following, i focussed on the bit i've emboldened - like 'back to' meant we hadnt been there for a while

lol I see how you meant it now, I'm with you and i agree completely

 

From the ME Association Facebook page:

Has anyone seen any other statements from ME/CFS charities?

 

Ella Pickover, PA Health Correspondent - her article in the UK Standard, the UK Independent and the Irish Times.

 

@JemPD - for a while we did see more of the words Myalgic Encephalomyelitis in the press. But looks like blink and we're back to Chronic Fatigue/Syndrome.

 

interesting i hadnt really noticed that.

 

Anyone know whether it was in the printed paper? It went up on the website at 1am which is maybe around the time articles in the print edition might go up?

 

I had a copy bought for me (cancelled subscription fairly recently) and I couldn't find the article in it. I can't vouch for my scanning skills currently but it seems not.

 

Earlier this year, I saw a similar article in an esteemed neurology publication aimed at health professionals. The written piece basically reinforces the idea that CFS is not neurological.

Unfortunately, I didn't save it otherwise I would have shared the link. It now seems like the Guardian article is just part of a lengthy and widespread attack on the new guideline.

 

I can imagine this article causing distress, but the thing that stuck out to me was NICE seemed pissed in their response. It's 50 or so idiots screaming in the wind to me. Yeah they got their shitty piece published in a number of outlets, but how many people are actually reading it?

Responding to it might in fact amplify their idiocy. Seen it happening with politicians and other. Might be better off spending our time lobbying institutions to implement what they should implement instead of giving these fools the light of day.

 

Did they ever actually publish the 'pre-bunked' article the same lot pre-published on '8 errors of' which turned out to be their own errors in blagging they were and weren't just things they wished were true?

Because if not I can't help but think this is their weak, eventual attempt at doing what they thought they were going to do with that - that after the pre-bunking they then sat on their hands with and finally decided they were best just doing their usual avoid any detail whatsoever (which will/can be pre- or de- bunk) and just list their names and stomp their feet a lot with blaggy manifesto

I guess their one aim of it being the hope that saying Nice don't know what they were doing (saying it again) will somehow change the world and the facts. Oh and they must have thought it has been too long since they last repeated their advertising mantra of 'saying it 7 times for it to stick' of 'what a shame our only thing we can do professionally now isn't offered, patients will really miss out'.

The sad/ironic [for a bunch of people in 'malingerer ideology studies' directed normally by malingerers at people who aren't malingerers] thing is that if it were any other idle malingerer then anyone would say 'that's your fault for not only insisting on being a one-trick pony in something useless/harmful, but stubbornly choosing to avoid all possible learning or wanting to adapt what you do'. But I guess the pointing and chanting 'whoever smelt it dealt it' card can work for a really long time for some.

then whinging that your outdated 'treatment' and ideology based on 1960s manifesto-level non-science can't continue to gravy-train, money for old rope, name your phrase... even when it harms according to surveys and never had any basis according to the science. Cant' people just walk away satisfied with the spoils they shouldn't have made in the first place?

 

The reporter publishing this isn't even in the health portion of the Guardian, is she? Might've just been looking for a quick article to publish to meet some sort of bullshit quota. A couple of posts upward @NelliePledge already commented she had trouble finding it.

 

I saw a few articles with the same, and I can't escape the obvious fact that the commentary was paywalled so that lazy journalists and editors won't bother reading it and see that it is not, in fact, a study and simply copy what's on the press release. I don't even know how it would make sense to make a "study" of NICE's process that happened nearly 2 years before it was written anyway.

I think it's categorized as a review in the journal and even then, it would basically constitute a self-review since it is their own work that was reviewed as very low to low quality. There must be another word for this because obviously one cannot "review" a review of your own work, this is like writing a newspaper article about yourself.

And obviously they do those things because it works. Lazy journalism has been critical to the growth of lazy pseudo-research. Just like the Guardian using "chronic fatigue" every single time, being asked to correct it every single time, is also obviously no mistake. They published more than enough stories to know this. And still they do it every single time.

 

Brilliant

 

Indeed. Partcularly if someone listed how much of her time (paid for by her tenure) and how much funding or payment either directly or indirectly she has had for each of her 'studies/papers' and what they consisted of: repetition of the same thing over what decades ........that Nice basically has outed as a body of work of no scientific worth to be included due to serious issues and flaws.

That's what this is really about of course. Imagine if someone spent decades doing the same study about how you could motivate a car into going faster by giving it a talking to, just iterating the same thing over and over with few differences between studies that were each funded etc. and someone said none of it is usable due to very low quality. And that was the same for the entire crew who built and owned the kingdom for the entire area. You'd think that would be the story and the headlines wouldn't be 'hard done by pretend scientists, iterating their protests [in the same way they iterated their research for decades]'.

 

I'm interpreting that what you mean is that they are going for this actually being a 'political article' for those 'in the game'. I think you have a point there. It is like the misogynist classic when a woman is being picked on and a bystander should call it but instead chooses to label it as 'two women not getting on/falling out etc' like that's just women leave em to it and 'don't ge involved'. The complication here being that this lot want the default left, which requires people in all of those sectors following their orders and suggestions towards patients.

But glad that Nice is mentioned and did also comment, which is a big move forward from x years ago.

And actually with the maternity scandals coming out and what is beginning to be said e.g. by those investigating there to highlight tendencies to ignore, and other scandals I do think that pwme suddenly somehow managing to actually get a voice to make it clear that this lot 'speak against our interests' vs Nice (as if it wasn't clear from their continual derogatory rumour-mongering about us in most of their articles) is starting to be relevant - just to make it not just theoretical and about science and regulator vs a few outdated 'mavericks' who have and intend to continue carrying on regardless etc.

Not that that would happen in the GUardian I imagine.. but elsewhere is possible one day?

 

Yes please

 

Can somebody please clarify where NICE have defended themselves... is it that theyve sent a rebuttal to the BMJ or is it just a comment on the guardian article or???

sorry getting a bit confused