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

Sly Saint said:
...eta: it just occurred to me that as BACME were previously closely aligned to AYME (there were also some financial ties) maybe (now AYME no longer exist, in name anyway) they (BACME) have joined up with the Sussex ME Society as a 'good fit'.
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I'll stand corrected, but I think Colin Barton's Sussex ME/CFS Society (a local group registered as a charity with the Charity Commission) was co-opted by BACME right back when BACME first launched and the group has actively promoted BACME since its launch.
 
Post copied from the BACME news thread.
2024 updated version.

Just had a look at this Severe ME/CFS Resources Archives - BACME

"Primary care would normally be the first contact for people living with severe ME/CFS. It can be difficult for patients and professionals to clarify how to best meet the needs of the individual. However, appropriate intervention can lead to significant improvement in the person’s condition, function and quality of life, enabling greater independence and reduction of burden of care. Primary care staff can provide options for ways to communicate including home visits, telephone calls, video calls and email along with liaising with formal and informal carers with the permission of the patient.

Where it is possible, patients living with severe and very severe ME/CFS should be offered intervention by a secondary or tertiary care specialist ME/CFS service that has experience of working with people who are severely affected. Where such services are not easily accessible, it may be necessary for local primary and secondary care services to seek advice from specialist ME/CFS services in other areas who may be able to provide guidance to local staff."​

So basically, if I turned up in Bath as a newly diagnosed patient for treatment, I'd be in EXACTLY the same position I was in 12 years ago, with exactly the same treatment.

Only it's actually worse,
  • taking into account the issue of 'rehab' and 're-ablement', they can come at me again as a severe patient (which they created in the first place) with the same treatment
  • now my voice is even quieter than it was before, because if I complain, what would be thrown back at me, is that this has been agreed by patient Charities who have no accountability whatsoever for harms caused, as they're not even govt arm's length organisations. With the suggestion that "you're the only one" aka The Post Office Inquiry.
  • DOLs just waiting for those who don't consent and they 'intensify' the treatment.
  • and whatever the outcome due to the bit I've put in bold, if you get worse, it's still your fault!
The DHSC have a played a blinder here and all behind closed doors. Well done! All our rights have been completely dismantled. The only way now to complain is via a legal case, because the PHSO will simply refer to the NICE Guidelines and whatever else they've concocted under the delivery plan via NHS England training.

Lost for words

ETA: For those not near a service, I notice these people mentioned earlier in the thread, now handle post viral long covid, and other 'fatigue' illnesses - they travel About us — Vitality 360
 
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Following recent concerns expressed about the BACME guide for therapists and their dysregulation model, I decided to take another look at their guide for severe and very severe ME/CFS.
https://bacme.info/wp-content/uploa...ractice-Guide.pdf.pagespeed.ce.nOV8X8U0zI.pdf

It's basically the same idea as for mild to moderate in their other documents - the focus is still on 'rehabilitation' with stabilise first using pacing, then gradually increase activity and exposure to stimuli, and standard sleep hygiene.

There are also sections on accessible home based care, hospital care, and care for feeding and nutrition difficulties, OI, sleep, use of meds etc.

Assumption of rehabilitation approach led by therapists

My main concern here is that there is an assumption throughout that a central strategy of clinical care for severe and very severe ME/CFS is rehabilitation, that this is expected to lead to improvement, and the assumption that this is led by therapists, without specifying what sort.

Some quotes:

page 16
Interventions and goals to be agreed will also need discussions regarding the priorities for the patient and the pace at which any changes will be attempted, in aflexible and collaborative manner. Showing understanding of the limitations the patient faces and negotiating an agreed approach can be crucial in making progress in the longer term.
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page 16
4.2 Overall Treatment Approach
Pacing Strategies
As indicated previously, there is no clear evidence base for the treatment of severe ME/CFS and most specialist services will adapt their approach to individual need.The initial goal is to enable individuals to find ways to better balance their activity and quality rest within their immediate limitations to establish more predictable and maintainable patterns of activity. If stability is achieved, this in due course can be followed by a slow stepwise upward grading to achieve sustainable and meaningful change, while monitoring for any change in symptoms.
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page 17
It is important to work with the person to establish a pattern that they feel they can sustain or do for a few repetitions in the day. This should be trialed, and adjustments made to make sure the baseline is stable.

Then individual components can be gradually and gently increased, it may be initially by seconds. The speed at which increases can be made needs to be judged on an individual basis. If there is an increase in symptoms or other factors impacting e.g acute illness, then any planned increases should be paused and it may be necessary to reduce back to achieve stability again.

Using this method can reduce recording as the initial plan is recorded and then just how many times the person could achieve it that day or any changes to the plan need noting.

It is important to recognise that dealing with external stimuli may also feel demanding, and ensure these are also given consideration, e.g. it may be difficult for the individual to manage listening to two people talking so it’s better for one person to take responsibility for a conversation. At the same time, avoidance of external stimuli can make matters worse in the long run and it is important that it is graded not avoided (see section on stimulus sensitivity)
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page 18 has a box of positive thinking statements, presumably intended to give to the pwME to encourage them to persevere with increments and to give 'hope'.

Note particularly:

They admit there is no evidence base for any of this, it's all base on a few anecdotes.

The whole thing is based on the assumption that pwME need a therapist to know all the details of their life and symptoms and to plan and do goal setting with them and make a record of everything.

Later in the document they say that they justify the incremental increases in exertion and exposure on the basis that they have talked to some pwME who improved after severe and very severe ME/CFS and who did gradual exposure/increases.

There is no acknowledgement that correlation doesn't imply causation, and it seems much more likely that people who were gradually improving spontaneously would have found they could gradually do more and tolerate more.

There is also no mention of or warning about pwme getting worse after trying to gradually increase activity and sensory exposure. It's only mentioned in the context of temporary setbacks that require returning to baseline before trying again. No mention that the pwME may be long term worsened by such experiments and not being able to return to their previous baseline.
 
Amw66 said:
we really need an update of patient experience at clinics as was done for NICE review given that harms are not adequately recorded ( if at all) .
If it dosn't work at clinic level then it doesn't work outwith clinics either.
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The AfME Big Survey does cover Healthcare: Q 19-31. Although it doesn't ask which service/clinic etc is local or has been attended, there is plenty of scope to add more narrative.

Survey needs to be completed by 27 Jan and is an important opportunity to get across the reality of life with ME in many ways.

The survey done for NICE was relatively simple, used Survey Monkey and I think AfME or MEAction UK could set it up again quite easily.
 
Trish said:
They admit there is no evidence base for any of this, it's all base on a few anecdotes.

The whole thing is based on the assumption that pwME need a therapist to know all the details of their life and symptoms and to plan and do goal setting with them and make a record of everything.
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I can't believe we actually have to spend energy debunking a speculative model without any evidence, as opposed to a speculative model where the evidence doesn't support the model, but it's really absurd how decades of fraudulently claiming that there is evidence for psychosomatic models and now it's basically just "here's a model" and it's happening the same way.

Just a complete top-down imposition with zero pretense that it's based on anything real, pure vibes. Which is really not much difference than the old way of pretending that failed trials support it, but this is simply dispensing with the need to even bother with evidence.

I don't even know which is worse. Obviously pushing something where all the evidence makes it clear there's nothing there is hugely problematic, and this is the natural end result of such a process, but this actually makes it clear that the process was never even legitimate, that the profession doesn't even care about being credible if it's not about biology.

It feels like a fragmentation from a dominant church into many smaller churches, all of which have to be beaten back individually, and more can simply be propped up in an infinite whack-a-mole game. Except the dominant church still rules by proxy. Nothing's changed except the whole thing has been turned phantasmagoric.

The death of expertise and the end of science, both killed by the medical profession because it can't handle admitting they don't know everything. It's like they're rolling back the whole Enlightenment with this.
 
rvallee said:
I can't believe we actually have to spend energy debunking a speculative model without any evidence being used by the NHS in 2026 as opposed to a speculative model where the evidence doesn't support the model, but it's really absurd how decades of fraudulently claiming that there is evidence for psychosomatic models and now it's basically just "here's a model" and it's happening the same way.

Just a complete top-down imposition with zero pretense that it's based on anything real, pure vibes. Which is really not much difference than the old way of pretending that failed trials support it, but this is simply dispensing with the need to even bother with evidence.

I don't even know which is worse. Obviously pushing something where all the evidence makes it clear there's nothing there is hugely problematic, and this is the natural end result of such a process, but this actually makes it clear that the process was never even legitimate, that the profession doesn't even care about being credible if it's not about biology.

It feels like a fragmentation from a dominant church into many smaller churches, all of which have to be beaten back individually, and more can simply be propped up in an infinite whack-a-mole game. Except the dominant church still rules by proxy. Nothing's changed except the whole thing has been turned phantasmagoric.

The death of expertise and the end of science, both killed by the medical profession because it can't handle admitting they don't know everything. It's like they're rolling back the whole Enlightenment with this.
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Just added bib in second line
 
there is no clear evidence base​

So, once again, they are brazenly admitting they got nothing, besides their nakedly self-serving clinical 'feels', yet are continuing to expand their empire anyway?

Can somebody please explain how this is not straight fraud and corruption. And very very cruel to the bargain.

Worst part? We are being sold out to this appalling drivel by some of our leading patient organisations. Which is about as bitter an irony and idiocy as it gets.
 
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