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

Andy

Andy

Senior Member (Voting rights)
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".
 
Andy said:
Hooper is described as "ME patient advocate" and "Emeritus Professor of Medicinal Chemistry"
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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.
 
RoseE said:
Does anyone have access to BMJ and know whether this guidance recommends GET and CBT and/or pacing?
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BMJ Best Practice: Myalgic encephalomyelitis (Chronic fatigue syndrome) - treatment algorythm - first line
Extracts
The concept of an 'energy envelope' is useful to teach so that patients do not exceed their exertional tolerance. The energy envelope refers to the amount of energy that the patient has available to perform all of his or her daily activities.[186] The patient and practitioner can work together to recognise personal energy limits and set reasonable limits on activities. 'Pacing' refers to dividing activities into smaller parts with interspersed rest intervals in order to remain within the limits of the envelope; exceeding the energy envelope depletes energy reserves and leads to post-exertional worsening of symptoms and of cognitive and physical functioning.[35][186][187]
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Graded exercise, which uses fixed incremental increases in physical activity or exercise, is not recommended as a treatment for ME/CFS by the 2021 National Institute for Health and Care Excellence (NICE) guidelines, due to reports of harm in the qualitative evidence, as well as the committee's experience of the effects when people exceed their energy limit.[189] However people with ME/CFS may benefit from an individualised physical activity or exercise programme designed for people with ME/CFS, for example if they feel ready to progress their physical activity beyond their current activities of daily living, or would like to incorporate physical activity or exercise into managing their ME/CFS.[189] Any exercise programmes should be low-intensity, be individualised to the patient and his or her personal activities, and allow for variation in effort based on each day's symptoms in order to minimise the risk of iatrogenic post-exertional malaise (PEM). This is sometimes described as a 'paced' approach to treatment.[199][200][237]
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Multidisciplinary rehabilitation treatment:

This has been defined as 'cognitive behavioural therapy (CBT)' and, depending on the individual analysis, elements of body awareness therapy, gradual reactivation, pacing, mindfulness, gradual normalisation of sleep/wake rhythm, and social re-integration'.[207]

Body awareness therapy: coached by a physiotherapist, this aims to establish an increased awareness and consciousness of healthy bodily symptoms and their relation to physical function, psychological wellbeing, and social interaction. Unlike in conventional CBT, immediate feedback is provided. The intent is to increase self-awareness and self-acceptance, reduce reactivity to passing thoughts and emotions, and improve the ability to make adaptive choices.
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Orthostatic intolerance: treatment of orthostatic intolerance, where present, is focused on mild, gradually increasing levels of exercise to overcome deconditioning, and to rehabilitate the dysfunctional perceptions of instability. Patient education, vestibular rehabilitation, and CBT reduce morbidity
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CBT may help in dealing with a new diagnosis of ME/CFS, improve coping strategies, and assist with rehabilitation. CBT should be offered not as a ‘cure’ for ME/CFS, but to support people manage their symptoms.[189] Note that a recommendation in favour of CBT does not reflect the belief that ME/CFS is psychological in aetiology; CBT has been shown to be beneficial in other chronic physical conditions.

CBT should be planned by the practitioner as 'brain re-training sessions' to improve attention, working memory, and organisation of daily routines (e.g., going to social events, shopping, and other outings) to take advantage of periods during the day where fatigue is felt the least. Family sessions can help educate and inform spouses, children, parents, and other significant people about the disabling nature of ME/CFS.[219]
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The more things change, the more they stay the same.

This is just the CBT and exercise crowd trying to hang onto their empire, via a superficial rewording and toning down of the same claim they have been making for decades. It remains CBT and exercise all the way down, despite the lack of evidence for it.

Not in the slightest bit surprised this is coming from the BMJ.
 
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Haveyoutriedyoga said:
BMJ Best Practice: Myalgic encephalomyelitis (Chronic fatigue syndrome) - treatment algorythm - first line
Extracts
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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.
 
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It is the same old shit, just with a superficial layer of NICE compliant language pasted over the top.

They clearly still think that it is all about our misperceptions and dysfunctional responses, and a lack of structure and routine in our cognition and behaviour, and that imposing their versions under their 'expert guidance' is the answer.

The characterisation of pacing and that it is about making a plan for our day is a dead giveaway. They either have no clue, or just don't care.

Their sense of entitlement remains as distended and disturbing as ever. They think they own us, and that nobody, least of all us, has any right to say otherwise.

Love the bit about us needing to develop 'self-awareness'. Not us that needs to find some self-awareness.
 
bobbler said:
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 sbd attitudes brought yo you generally by the same people who watched patients being hurt fir tears and instead told themselves it was the patients being whingers and when they got worse it wasn’t action-consequence but in their fugsusting heads distorted reality to bland the patients’.


I’d say this is s demonstration why tge sane old people can’t be safe to be near those patients of any similarly vulnerable and needs de snd re programming and increased oversight. If you can’t self monitor gif being moral and seeing reality even if it doesn’t fit with your agenda that’s a major character flaw but also a show-stopper in thinking you can be trusted or heard in relationships eheee you’ve chosen to work with people in s different power differential.

how many times in a row do these people have to put in writing ‘showing the works who they are’ (Marie Angelou) and what their intentions are to us - using us safe s you they will fi harm to as they care not whether their Guinea pigs they are making stuff up based on their own bigotries sbd calling their disgusting attitude disorders ‘psychology’ or ‘therapy’ basically kill people - and if you take enough of a person all their health they might have gif anything independent or nice or tgat they deserve as human rights then tell the world they did it to themselves because you are a deluded liar and gaslight them, brainwash then to hurt them and deliver programmes tgsf Nash’s their health worse sll because it what you fancy doing that day oh and remove all their freedoms snd rigged just in case they tell anyone isn’t that what you are doing
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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.
 
treatment of orthostatic intolerance, where present, is focused on mild, gradually increasing levels of exercise to overcome deconditioning, and to rehabilitate the dysfunctional perceptions of instability.
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GET for OI is contraindicated in ME/CFS because GET is contraindated for ME/CFS. Why can't they understand that.

CBT should be planned by the practitioner as 'brain re-training sessions' to improve attention, working memory, and organisation of daily routines (e.g., going to social events, shopping, and other outings) to take advantage of periods during the day where fatigue is felt the least.
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I've not heard of CBT being described as brain retraining before, and the claim that it helps to improve attention, memory etc seems completely made up nonsense.
And it would nice to be able to do activities at some mythical time of the day when 'fatigue is felt least' but the effect is the same - whatever time of day I do a more demanding activity it still contributes to the cumulative effect of the day's activities and leads to crashes.
 
In his entry on ME Pedia there’s a reference to 2018 BMJ update article he wrote so presumably this is an update which might explain some of the more outdated wording.
 
“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.
 
ME/CFS Skeptic said:
Is anyone able to help me get the most recent version of the BMJ best practice on Myalgic encephalomyelitis (Chronic fatigue syndrome)?
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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.
 
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