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Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al
- Thread starter Three Chord Monty
- Start date
I hope NICE
And an absence of the fact that Cochrane put a label on the CBT review stating it was out of date? Or did I miss it?
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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.
Very grateful that NICE is taking up this fight directly and publicly. I am very tired of patients having to do medicine's dirty work for them, and taking all the shit for it. Time the profession got to cleaning out its own house.
I wish we had a video of that proceeding to show the world.
Their crocodile tears about suffering patients is contemptible.
I have no doubt that they are the reason why it is taking so long to get them implemented. They will be doing everything they can behind the scenes to block and dilute and otherwise pervert implementation in their favour.
Shadrach Loom
Senior Member (Voting Rights)
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.
Shadrach Loom
Senior Member (Voting Rights)
Jonathan Edwards
Senior Member (Voting Rights)
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.
Shadrach Loom
Senior Member (Voting Rights)
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.
InitialConditions
Senior Member (Voting Rights)
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.
The MEA desperately need some new, more savvy staff.
Shadrach Loom
Senior Member (Voting Rights)
The comms muppetry is such a shame, when the response they wrote was actually quite good.
I've got access to a copy of the full paper and started reading it.
Just reading the first page it's as full of holes as a sieve.
One thing that particularly struck me in their lengthy and unconvincing argument about whether PEM should be included in the diagnostic criteria for the guideline, and in trials included in the evidence review was their description of PEM. Despite the lead and corresponding authors (White and Chalder) having worked with pwME for over 30 years, they still think PEM is the same as post exertional fatigue and say it's present in many other conditions. So that's 30 years of not listening to patient then. Why am I not surprised! They haven't a clue.
Just reading the first page it's as full of holes as a sieve.
One thing that particularly struck me in their lengthy and unconvincing argument about whether PEM should be included in the diagnostic criteria for the guideline, and in trials included in the evidence review was their description of PEM. Despite the lead and corresponding authors (White and Chalder) having worked with pwME for over 30 years, they still think PEM is the same as post exertional fatigue and say it's present in many other conditions. So that's 30 years of not listening to patient then. Why am I not surprised! They haven't a clue.
Charles Shepherd's response is fine. It's the Tweet that's the problem. I agree their comms people need to get the message straight. This Tweet is not helpful.
InitialConditions
Senior Member (Voting Rights)
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.
Jonathan Edwards
Senior Member (Voting Rights)
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.
Lou B Lou
Senior Member (Voting Rights)
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
‘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
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Not sure it's fair to blame Charles Shepherd for this. He's not their media person, he's their medical advisor, and his responses to articles like this are usually very good. I agree the MEA need to get their media act together. I am not impressed by their long term chairman's efforts.
Shadrach Loom
Senior Member (Voting Rights)
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.
Charles B.
Senior Member (Voting Rights)
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!