Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

Brian Hughes on Bluesky

https://bsky.app/profile/bmhughes.bsky.social

 

This is disappointing to see. None of the 4 authors have actually done much research on ME/CFS so I do not understand why they are commissioned to write a controversial piece like this. Perhaps some lobbying went on behind the scenes or is there someone at the BMJ who is entirely on Garner's line?

 

The piece is not 'controversial'. It is the received medical wisdom at the Royal Colleges. The great bulk of the medical profession are entirely on Garner's line. This is just a re-wording of what the Presidents of the Royal Colleges of Physicians, Psychiatrists, Paediatricians and GPs said at the NICE Round Table a week before the guideline was released.

 

I suspect they’ll keep writing papers explaining how they can contribute to care, without even breaking stride.

They’ll believe they have a vital role no matter what happens.

 

Well this looks all rather unpleasant. The mention of Leeds reminds me of when a local service seemed to be, very kindly, trying to arrange for me to be ambulanced up there. Given the impact of much shorter journeys in ambulances and a trip to a local hospital I said no. A decision I’m rather glad of with what I’ve learnt since.

I think I’ll skip further discussion and return to my happy place but hope people peddling this stuff can be sidelined once and for good, sooner rather than later.

 

I thought Leeds had closed its doors to ME/CFS rehab?

Maybe it has and none of these authors have noticed?

 

I note that Fiona Symington is a Garner clone who miraculously cured herself of ME/CFS and now tells everyone how to do it by explaining the 'pain is just the brain's opinion'.

I am beginning to think that this is a collection of people more like those people who knock on your door to introduce you to Jesus than anything else.

 

I don't think so. It closed it's doors to out-of-area referrals a few years ago.

 

OK. Interesting though that we have never heard anyone from Leeds provide any data or opinions or even their names? Why did they close to referrals if they are a star turn I wonder?

 

Because the pandemic made their waiting list even longer — 2–3 years from referral — which they felt was inappropriate.

 

I know of one patient who came out of NICPM much improved, then started volunteering, studying again, even working a bit, until they had a major relapse/crash.

 

If it weren’t a prevalent belief within the medical establishment we’d be hearing it referred to as an “alt med cult”.

 

Disgust and rage doesn't even cover this, torn between wanting to post about this everywhere or ignoring and not wanting to spread the harm, don't know which is best, using Maeve is particularly sociopathic when this is what killed her and so many others, and would be the death of me given the chance, heartbreaking for her family after all that they've been through, they don't deserve this

 

No
Incidentally, neither do certain personalities

 

Ok but still a bit strange to see an opinion piece like this that isn't based on a new study or news fact by people who have little expertise in ME/CFS research. Perhaps it was in response to the news articles about Maeve's inquest and the publication got delayed?

 

I noticed two true statements. That's it. The rest is just junk nonsense. Shameful of the BMJ to publish tripe pseudoscience like this.

True. It has been described for many years. That's also true of all other forms of alternative medicine based on pseudoscience. In some cases they have been described for centuries.

While this one is true, it's for the opposite reason they are stating it. I think their intended assertion is that it's the 2021 updated guideline that is outdated. It actually makes no sense since they know the updated guideline has not been implemented, but they never get facts get in the way of their narratives. But no country or health care system runs on anything but the same outdated nonsense they are proposing here.

What they are proposing is literally what's there now. But they pretend otherwise. Or whatever. Absolutely ridiculous of BMJ to commission this junk nonsense. They are lying to the world, little different than what RFK Jr is doing in the USA.

Also, because it's easy for additional lies to get lost in a mountain of it, but obviously it isn't true that health care in the UK, or anywhere else for that matter, is based on the biopsychosocial model. It's based on biomedical science and standards of care grounded in human biology. Its only use is for when biomedical science or current standards of care have no answer, the main consequence of which has been to delay indefinitely having those answers.

 

It is hard to be sure of the time lines involved but it may have been commissioned as a response by the Royal College of Physicians ME/CFS expert in response to the coroner's report. Opinion pieces are not necessarily by people with scientific expertise. They are often produced by 'worthies'.

 

It’s no less than an Orwellian attempt at rewriting history.

 

This is actually a very weird paragraph, as @rvallee says. It makes one wonder who approached who to say what. This does not sound like Miller, and is presumably slotted in by Pederson. But if Miller was approached why does he go to Symington, Garner and Pederson. It seems more likely that garner and Pederson wanted to make a point about the enlightened state of Scandinavia and got someone to collar Miller to write for the BMJ as the local man. Pretty much like peers advertising their crypto firms in parliament I suppose.