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

It would be good if someone could compare the snippets from the draft version of this paper with the final piece. Should give us an indication of what the reviewers thought. @dave30th

 

Grim article. Smacks of catastrophizing to me.

Does BMJ keep an open mind about balance pieces? Something like"Top Ten Reason Some Are Whining About The Nice Guidelines"?

 

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I think where public services are concerned there's strong editorial 'support for the producers' versus 'less support for the consumers' so doctors/nurses before patients, teachers/lecturers before students etc. Not surprising really as The Guardian is the major UK newspaper for public sector job adverts and features about public sector pay and conditions.

 

Meh. That’s for Charles Shepherd, I guess. I hope he does.

But I really want to know who took the call from Chalder or Garner and took the decision to get an education reporter to take dictation from them, and how that person fits into the editorial hierarchy. What we need is for someone to get to Kath Viner and persuade her to nix all future stories of that kind.

How that happens, I don’t know. Any editorial contacts I had at GNM have long since been put out to freelance pasture. But what I do know is that there was a substantial body of opinion in Kings Place which resented and mistrusted the SMC, and there should be people who will be prepared to listen.

 

Yes, that’s entirely true. But they do have an aversion to being on the wrong side of history, and it might be telling that this article didn’t come from the health or science desks.

 

It may not be such a coup. For a large majority of the UK population I suspect anything loved by the touchy, feely, lefty, just love that therapy, Guardian, is immediately viewed as a joke. The average Telegraph reader is unlikely to be impressed by Chalder's claim that NICE has denied all these lazy tired people treatment they desperately need. The ironies whirl like a Tibetan prayer wheel.

 

The Guardian differs from other UK broadsheets in that it can be read for free online without clumsy paywall circumvention tools, so it has a substantial readership, second only to the BBC site.

It is taken seriously by public servants in health and care professions, and it is the house broadsheet of the political party which is currently, if extrapolations from polls are to be believed, heading for a substantial commons majority.

So yes, it matters.

 

There's an MEA response, and in true MEA sfashion it's not clear on their on their social media posts that it's a response. So now people—many of whom haven't read the MEA piece—are asking why they are endorsing the article.

The MEA desperately need some new, more savvy staff.

https://twitter.com/user/status/1678711059895418880

 

The comms muppetry is such a shame, when the response they wrote was actually quite good.

 

Charles does so much, and I don't think he's got the media savviness required to lead a prominent charity in 2023. Things are different now. I remember reading that the MEA had 6 full-time staff not long ago. They need to get someone in with expertise in comms and PR. Action For ME has been better on this front over recent years.

 

I am sceptical. I know of three groups of Guardian readers.
1. The love that therapy lot. They will always love that therapy so makes no difference.
2. Those who read it for free but not out of affinity. They will laugh at wingeing therapists.
3. Intelligent folk. They should see that the remonstrations from garner are pure pantomime.


Garner seems now to have decided that ME is a 'brain-body' problem. Not so much Cartesian dualism as Pooh Bear dualism - mostly fluff and stitching.

 

Yahoo article at 12.22 pm includes Dr Shepherds statements. But the article relies on the NHS pages for describing ME symptoms 'The NHS describes CFS or ME as a long-term illness with a wide range of symptoms, the most common of which is extreme tiredness' Journalists and others will continue quoting "extreme tiredness" until the NHS ME/CFS pages are changed. It's regressive for anyone, especially journalists, to use the name 'Chronic Fatigue Syndrome'.



‘Shortcomings’ identified in chronic fatigue syndrome guidance'
Ella Pickover, PA Health Correspondent
Tue, 11 July 2023 at 12:22 pm BST

https://uk.style.yahoo.com/shortcomings-identified-chronic-fatigue-syndrome-112238436.html

 

The problem is that the people in groups 2) and even in 3) who skim-read the article won’t be checking Garner’s position for logical fallacies, or thinking seriously about any of the issues involved. They will just see another clash of experts and think “looks like the jury is still out on whether yuppie flu is real”.

The great success in dealing with both climate change and holocaust denial came when media platforms refused to entertain the concept of “legitimate debate”. We need a GNM moratorium on BPS relitigation of PACE and on conflation of ME/CFS with chronic fatigue - and if Viner proves to be uninterested, someone should appeal to the Scott Trust. Because ultimately, GMG is responsible only to the ghost of its founder, and its founding myth is that it behaves ethically.

 

While my quality of life has improved mightily since abandoning Twitter, I do wish I could see how this is being promoted/responded to on the bird app. Does anyone have any insights to offer? Thanks!