The ME Association Clinical Assessment Toolkit (ME-CAT) and app (autonom-e)

Nightsong said:
Just curious - has anyone ever asked MEA to explain the rationale and the evidence base for "goal-setting" in ME/CFS, and ask them what treatment, precisely, is being referred to here?

I would love to see their answers to those questions. It would be most illuminating.
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Agreed. I'm returning to the original release of this overall project to see the exact wording of aims out of curiosity and found this:

S

Post in thread 'UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023'

My hope for a project like this would be to enable symptom contingent pacing taken on board as the new status quo. I suppose if the end result turns out to be a substantial step forward from the current mishmash of some staff being more up to date and others still based on PACE mentality then it will be advantageous to have Gladwell involved to facilitate implementation.


Eta I realise this isn’t revolutionary but nevertheless reducing risk to PWME in the context of existing provision is still of some value.

Yep, thats the idea
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sarahtyson said:
My hope for a project like this would be to enable symptom contingent pacing taken on board as the new status quo. I suppose if the end result turns out to be a substantial step forward from the current mishmash of some staff being more up to date and others still based on PACE mentality then it will be advantageous to have Gladwell involved to facilitate implementation.


Eta I realise this isn’t revolutionary but nevertheless reducing risk to PWME in the context of existing provision is still of some value.
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Putting aside whether this, and its interpretation, is even appropriate, I always think it is useful to see whether people have managed to capture the Research Question they said they were aiming to with what they ended up doing.

I don't understand from the last surveys how the rather large ceiling and floor effects and then merging of options in the middle mean that it can capture any impact at all other than those who spontaneously recover - ie it can't/won't capture anyone getting worse because it doesn't capture severe and you can get so much more disabled in one function and still only have the one option to tick


So I guess the inclusion of where someone lies on the disability scale in this one is important: https://www.s4me.info/threads/the-m...it-me-cat-and-app-autonom-e.47303/post-686758

But how many of these questions will someone have to fill in before they get there?

On the other hand the questions on post-activity symptoms: https://www.s4me.info/threads/the-m...it-me-cat-and-app-autonom-e.47303/post-686755

especially question 15. asking about what level of activity caused the PEM
seem to miss the issue / understanding that a lot of PEM will be cumulative. ANd in fact you can't really start the cycle of recovery until you get to the point where you can't stop pushing through. eg that peak week at work is over/the weekend, but how much you have to keep overdoing it within that (and how much rest of an evening) adds to it. Vs 'an activity'.

Trish said:
15. Overall, in the last month what level of activity has typically triggered a worsening of symptoms when you overdo it?

Strenuous or stressful activity (for you)

Moderately demanding or stressful activity (for you)

Mildly demanding or stressful activity (for you)
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bobbler said:
especially question 15. asking about what level of activity caused the PEM
seem to miss the issue / understanding that a lot of PEM will be cumulative.
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I agree. It's also complete nonsense, as I tried to point out to Sarah on the original version of the questionnaire. What's mildly demanding for me today may be impossibly strenous for me next week, or vice versa. Do I say anything that's bad enough to trigger PEM is by definition too strenuous for me today?
 
One big question to all of this is how any of these questions aren't just as vulnerable to those who want to just carry on with thinking the issue /fix is 'reframing' ie coercing via different methods and situational pressures/perceived threats into giving different answers about their symptoms

As noone is checking that the therapists don't errantly still think they can carry on believing the problem is 'being over-sensitive to normal bodily sensations' and thinking feeling a bit tired after a workout is illness.

Which makes this performative. Particularly if what I remember about BACME's latest 'therapy' manifesto /manual is correct, in that they just thesaurused their same attitude and beliefs. Oh and new fairytales to pretend the same tropes are based on 'evidence', whilst adding no new references as those dated after 2021 weren't even based on relevant topics

Nightsong

Thread 'UK BACME ME/CFS Guide to Therapy 2025'

Moved from the News from BACME thread.

It was brought to my attention that BACME have apparently produced a new version of their "guide to therapy" (used by some of the NHS clinics) recently:

BACME Guide to Therapy - redraft 2025

I haven't been able to read through but running Adobe Acrobat's PDF comparison tool on the 2022 and 2025 versions indicates there are a significant number of changes.
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Jonathan Edwards

Thread 'An Open Letter to BACME re ME/CFS Guide to Therapy 2025'

An Open Letter to British Association for Clinicians in ME/CFS in Response to the Document ‘Guide to Therapy’, 2025

Jonathan CW Edwards, Professor in Connective Tissue Medicine*

Dr Michelle Bull, Chartered Physiotherapist

Joan Crawford, Chartered Counselling Psychologist

*Correspondence to JO.EDWARDS@UCL.AC.UK



Introduction

NICE Guideline NG206 (NICE, 2021) proposed a major change in management for ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). It judged that the use of therapist-delivered treatments such as graded exercise therapy (GET) and...
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