Review British Medical Journal: BMJ Best Practice: Myalgic encephalomyelitis (Chronic fatigue syndrome), James Baraniuk, 2023

Last reviewed: 10 Feb 2023, Last updated: 19 Jan 2022

Summary

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can be distinguished from medical and psychiatric conditions in the differential diagnosis of fatigue by the presence of debilitating fatigue for more than 6 months; combinations of cognitive dysfunction, total body pain, and unrefreshing sleep that does not restore normal function; and post-exertional malaise, where exertion or other stressors leads to exacerbation of these symptoms with onset immediately or delayed by several hours or overnight

The World Health Organization classifies (ME/CFS) as a neurological illness.

There are no objective diagnostic tests, verified biomarkers, curative medications, or treatments for (ME/CFS). The primary goals of treatment are to manage symptoms and improve functional capacity. Initial treatment should be individualised based on the patient’s most severe complaints.

The chronic but fluctuating disabilities require substantial lifestyle changes to carefully plan each day's activities, conserve energy resources for the most important tasks, schedule rest periods to avoid individuals overtaxing themselves, and to improve the quality of sleep.

https://bestpractice.bmj.com/topics/en-gb/277

 

This has been mentioned elsewhere on the forum previously but is worth a thread of it's own.

Additional 'interesting' info from the document.

"Acknowledgements

Dr James N. Baraniuk would like to gratefully acknowledge Dr Craig N. Sawchuk and Dr Dedra Buchwald, previous contributors to this topic."

Dedra Buchwald being a fully paid up BPSer.

"Peer reviewers

Alastair Santhouse
Ben Katz
Indre Bileviciute-Ljungar
Tarek Gaber
Malcolm Hooper"

They at least have a range of views in their reviewers.
Santhouse was part of the NICE committee that created the 2007 guideline and has continued to support the BPS efforts.
Katz is a regular collaborator with Lenny Jason but is also part of COFFI - The international collaborative on fatigue following infection.
Bileviciute-Ljungar is one of the authors of Preliminary ICF core set for patients with myalgic encephalomyelitis/chronic fatigue syndrome in rehabilitation medicine, 2020, Ekholm et al
Gaber seems to work at an NHS Fatigue Clinic, and was one of the authors of Multiple Sclerosis/Chronic Fatigue Syndrome overlap: When two common disorders collide
Hooper is described as "ME patient advocate" and "Emeritus Professor of Medicinal Chemistry".

 

Does anyone have access to BMJ and know whether this guidance recommends GET and CBT and/or pacing?

 

Very odd. I have had some contact with him including on the phone. I’ve never heard him say he was a patient or anyone suggest it. I think he should probably describe himself in a different way as I think most people would interpret that phrase as meaning he was a patient.

 

BMJ Best Practice: Myalgic encephalomyelitis (Chronic fatigue syndrome) - treatment algorythm - first line
Extracts

 

really confused and disturbed by this - it seems to have a frame of the ‘right information saud correctly’ which then has been used to house some sinister damaging malign and utterly made-up twists. Classic switch and bait pretend they understand and ‘just hand your vulnerable to us’ based on us demonstrating THERE that we get it. Which means they know full well the truth and they wheel it out as a tactic when it works for them so they aren’t deluded all the time which makes what they’ve done and are saying they intend to go even more mad and immoral.

This is neither medicine nor science nor safe fur a ‘profession’ to think they can just chuck in tgat disgusting ‘bodily awareness therapy’ which at its heart sounds like basically another form of their vksssic ‘teaching disability bigotry and giving it the band therapy to pretend it’s help rather than harm’ and yes utter BS on CBT snd ‘multidisciplinary’ which makes it a Trojan horse fir delivering harm.

pretending you understand the disease then using a switch and bait to say ‘and so here are our making, made-up,nonsense terrible treatments and attitudes brought yo you generally by the same people who watched patients being hurt for years and instead told themselves it was the patients being whingers and when they got worse it wasn’t action-consequence but in their disgusting heads distorted reality to blame the patients’.


I’d say this is s demonstration why the same old people can’t be safe to be near those patients of any similarly vulnerable and need de- and re- programming and increased oversight to work in areas where there are power discrepancy and therefore potential for harm at all. If you can’t self-monitor/ be moral and can't/won't see reality even if/when it doesn’t fit with your agenda that’s a major character flaw (of the level 'not of suitable character) but also a show-stopper in thinking you can be trusted or given a voice (particularly where it 'speaks over') in relationships where you’ve chosen to work with people in s different power differential. The requirement of following scientific principles was supposed to provide some sanity check or guard against this, but these people seem to have found themselves a n'new set of principles' where they can just dump untested top-pf-their-head-ideology based treatments on people and then claim their crap research is 'testing' when it isn't and when finally called on it being fake nonsense they just change the name or tweak to another way of doing their bigotry at the poor defenceless.

how many times in a row do these people have to put in writing ‘showing us who they are’ (Marie Angelou) and what their intentions are to us? The last two years have made it clear that for most of them unless 'others make them' they will 'do as they please to us' and who will stop them even if official Nice assessment of whether it is harmful or right or evidenced isn't there, and breaking down what it is based on says its just disability bigotry and likely incredibly harmful.

 

I’m so annoyed with my phone - I put the words in right and it changes then all to sometimes three non words. And it’s getting worse with time and trying to crrect things and not better (you’d expect it would ‘learn’ if you took the i effort to override its autocorrect)

Even my blinking phone takes the pi** out if the condition when I’m too ill to use an alternative and makes me look like I’m thick or less intelligent than I am and have no grammar.

 

They mention iatrogenic PEM and hit some of the right points earlier on and then they don't caveat the rest of the advice e.g. about exercise for orthostatic intolerance and CBT and activity planning, if the writer was concerned about iatrogenic PEM they would have mentioned that exceeding the envelope is always contraindicated if there is an ME diagnosis, which in this case would always be a yes because that's what the guideline is about and othostatic intolerance is there as a common comorbidity.

 

There is actually no reliable evidence that GET cures OI without PEM either. Studies in that area suffer from huge dropout rates and other problems.

 

It will be interesting to see if Fauci is associated with future efforts, seeing as he's off to Georgetown U, last I heard, with his eye on ME/CFS.

ETA: Wasn't Walitt also associated with GU?

 

“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can be distinguished from medical and psychiatric conditions in the differential diagnosis of fatigue”

A succinct summary of the approach, credit where it’s due.

 

I'm not sure about that @Ash. The statement as written doesn't make logical sense. If not medical or psychiatric, there's no group left — unless malingering I suppose.

There is an omitted but implied "other" before the "medical and psychiatric conditions".

It would have made better sense to open with "(ME/CFS) can be distinguished from other conditions in the differential diagnosis of fatigue by the presence of ...".

 

No @SNT Gatchaman they said what they meant.
Straight up. Up front. They need their busy colleagues to understand straight away where they’re coming from. No reflection no remorse, on course.

You’re right the third option is implied. The standard practice. For the wriggle room. For the deflection. Attack. Withdraw.

The third way which is an all encompassing ‘wholistic’ approach, is generally referred to as a ‘behavioural framework’ related to ‘behavioural disorders’. Whether malingering fits into this framework depends on whose asking, as well as when and where the question is posed.

 

It was last updated on: 29 May 2024.

Is anyone able to help me get the most recent version of the BMJ best practice on Myalgic encephalomyelitis (Chronic fatigue syndrome)?
https://bestpractice.bmj.com/topics/en-gb/277

Many thanks in advance!

 

And it's now called 'functional' and very popular with the neurologists and gastroenterologists!

 

I am not sure that my UCL access gets to it but I will try.

I despair at the trite wording of the summary. In comparison to Bansal's 2016 account for GPs it takes us backwards. It is completely out of touch with the clinical reality of trying to manage people with ME/CFS.