United Kingdom: BACME Guidelines for Severe ME, 2019 and 2024 update

https://twitter.com/user/status/1090687376777715719

https://twitter.com/user/status/1090707822373978113

https://www.dropbox.com/s/19mw8x1aarchi33/BACME_Severely_Affected.pdf?dl=0
https://twitter.com/user/status/1090709233035853832

 

Tom, is that comment referring to difficulty accessing the guidelines talking about accessing it from my earlier post do you know?

 

Yes, it is. That's why I made the Dropbox link.

 

Ok, thanks, I guessed that to be the case but wanted to be sure.

@Adrian , would non-members potentially have trouble accessing files uploaded to posts do you know? I think I remember now we had the same/a similar problem with the PACE briefing document?

 

I have read the assessment bit and it is not bad. There is a lot of work put into emphasising how seriously they take things. It reads like treacle but no harm done. Starting the management bit I agree there is an implicit presumption that it is all about getting people to do more.

The way it is written made me think that there is a double-think going on.

The objective is to do more - (right, that makes sense)
So
The treatment is to do more - (wrong, conflation)

The end is not the means.

The assumption is that there is an analogy with athletic training.

In athletic training the objective is to do more. The baseline is normality.
In ME the objective is normality. The baseline is not normality.

The two situations are not comparable. But I suspect therapists find that hard to absorb.

 

Ok, thanks for clarifying.

 

I have read as much as I can manage.

Some of the management material probably reflects realistic experience with severe cases and what seems to work. Reference to sensitivity to sound and people talking is obviously worth including etc. However, the whole thing is written based on the assumption that it is known what the best thing to do is for theoretical reasons. But we have no meaningful theory so there is no theoretical basis. Advice has to be based on reliable evidence in terms of what leads to better outcome and the trials don't do that.

The basic problem is the therapist mindset - they are taught that they can know what to do. They are told that after educational courses they will know what to do. It has to be made clear that this is not how medicine is supposed to work these days.

 

I’ve managed one skim through, my thoughts....


Basically whilst there’s some welcome sensitivity to many of the challenges caused by severe ME, imo this is undermined by the constant “recovery” focused language even in the context of setting minute goals to people unable to possibly do anything and the message throughout of universally instilling optimism to the severe ME situation where the simple truth is that approach might be inappropriate and could lead to pressure and tensions etc within families if the patient is stuck or deteriorating set against this framework.

It seems to assume people with severe ME have devoted 24 hour care where someone can be there as you need, to stroke your head etc and doesn’t at all acknowledge the challenges of living with resentful or patchy family care, paid care or inpatient care.

It’s trying to apply micromanagement , 2 minutes of this type rest, 3 minutes another, to symptoms that can be unpredictable and in control of the sufferer. This would be really difficult to manage in therapist led intervention way. It could also make life more miserable.

It totally understates the risks of Hospitals and seems to only have taken patient evidence from those who got out of severe ME , so the patient advice is one sided. Is a patient who can have light gradually reintroduced just naturally getting better to allow that process , rather than it being an effective desensitisation treatment as suggested. I don’t think theres evidence supporting assertions that sensory sensitivity can be rehabilitated unless the person is generally improving, sure they can subside but that’s different. I also don’t think there’s evidence increasing sensory stimulation can facilitate other improvement. It writes that inpatient admission could have as a goal significant improvement, but that’s a massive ask and that wasn’t acknowledged. The typical bps sleep curtailing advice seems highly risky, I’m speaking from friends needing 22 hours per day and getting worse if they don’t have that.

Whilst it recognises the myriad potential for symptom exacerbation and need for great care with everything, It doesn’t seem to recognise potential underlying pathology much or that this in itself might be a barrier to attempts at rehabilitation. It’s suggested laying down is bad, causing symptoms in itself but ME Itself might necessitate that, thats the vicious trap, ME is like a trap. As @Jonathan Edwards said treating an inability to do activity with that activity as treatment is a problem. It doesn’t, as many severe who aren’t getting better do, place any hope on emerging treatment or research.

I feel it’s largely been written by a person/people who’ve had, people with experience with short term, steady rising severe ME, well cared for who’ve learnt a lot but think that their pacing, grading, rehabilitation, desensitisation etc be generalised across the board to all sorts of other severe ME presentations/circumstances. It seems to expect with intervention the illness can be stabilised and improved, which It can be but the only narrative seemed to be in this document that it likely WILL be, that’s a huge problem. The bps have buried CFS in their good news with exercise narrative and I fear this document will still too much put the ball in patients court to diy , as is also the case with other CFS medical literature out there. This reinforces in the medical profession’s mind the idea of CFS sorted by behavioral interventions.

Whilst there’s loads of good stuff, some possibly taken from the late Emily Collingridges book, it’s not helpful to me because it would stimulate lots of interference and a bigger prodding stick from those who read it, people easily convinced that all with ME can be put on this supposed recovery ladder/path, no matter what stage or severity.

With tweaks, some cuts and a change of tone the document could be helpful but I don’t think bacme Would do that , just as they continue the good news of Pace.

 

I think I find this the most irritating aspect. The sense that they have something useful to say in a situation where they really have (so it would seem) taken no time at all to grapple with the complexities via direct experience of being with people who are severe.

They just make stuff up in an academic head in the clouds place. If they were sick they would realise the futility of their carefully crafted minute by minute advice on how to deal. I can't imagine any patient giving that kind of input or managing in that way. So where do they dream this s*** up? How is it they think they know? And why are very sick people tasked with such an exhausting management strategy.

 

This,
and this,
and this.

 

I don't disagree that you may have a point as regards their thinking. But I think also it's sometimes quite simple. They have been given a task to do. They want to feel that this task is valued and that they are competent to carry it out. The problem is there is nowhere to go for good reliable info except where they are told to find it in the BPS narrative. Actually spending time with patients and thinking it through for themselves isn't really a viable option for whatever reason.

So we end up with what might be (at least some) well meaning people doing harm. They have managed to take on board some understanding of severity (that it's not just fatigue they're dealing with) but when it comes to management they can't get past the idea that some sort of 'active' strategy is required simply because they are tasked with 'helping' us. It's the refrain of the healthy. To be actively involved in improving our health.

In other words, again, it's about them.

 

I’ve only just seen this. I’ll have a read and get back to you.

 

Way back in January, @Sly Saint asked for my thoughts on the BACME guidelines on severe ME. I initially intended writing a short response here, but it became too long and I decided to make it a blog post. However, life threw several major challenges at me in the first half of the year, and it’s taken till now to complete.

This is the first of a three part series discussing the guidelines. I’ve aimed to make my writing as accessible as possible to those who are ill. Each section contains a summary at the end, for those unable to read the full text.

An extract from Part 1:

“Unhelpful and even damaging treatment doesn’t always come in the form of overt disbelief. Harm can also be caused by professionals who display compassion but who nonetheless have fundamental misconceptions about the illness. A clinician can be sympathetic and appear supportive, but still be wrong and still cause harm. The BACME guidelines are the embodiment of this paradox.”

I hope it was worth the wait!

https://alifehidden.com/2019/09/19/beneath-surface-1/

 

Thank you @Trish

 

Colin Barton's Sussex ME Society still lists Professor Esther Crawley as a Medical Advisor:

https://measussex.org.uk/about-us/medical-advisors/