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

[bobbler]

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.

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'

May 9, 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

• sarahtyson

• 

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.

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'.

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)

 

[Trish]

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.

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?

 

[bobbler]

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

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

Nov 14, 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.

• Nightsong
• Replies: 276
• Forum: UK clinics and doctors

• 

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

Feb 18, 2026

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...

• Jonathan Edwards
• Replies: 211
• Forum: Open Letters and Replies

• 

 

[Amw66]

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.

I queried goal setting on Facebook in the PROMS debacle and was effectively told it was an inherent aspect of " treatment" by Sarah Tyson . It seemed so fundamental that she seemed peeved it was questioned .
With a rehab model goals seem built in .

 

[bobbler]

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?

I'd go as far as saying the risk of this is that it will remove any ability to do anything that might ever have been useful in any such clinic.


Goodness knows, other than her clinging to an irrelevant book on old people as her bible, why when the issue with everything having been harmful in their care of pwme because of ... you know not basing anything on the illness or even adapting anything to its core feature of an envelope and PEM

My example is that at least if someone did something sensible and short there is the possibility of someone using common sense and asking a new patient who has gone on the basis of wanting actual help what are the main things they have to do that could be made less exertion

And nearly everyone probably noting showering - because after all most of what any more well people might list as 'activities' would even implicitly involve showering before/after too. How can anyone be of use in a clinic if the survey doesn't really get some of the implicit 'compound tasks' involved eg with visits and public transport

and a decent OT who works with equipment and facilities approach being used for that. SO bathboards/chairs, equipment, carers and looking into the bathing facility itself maybe needing changing as well as advice on alternatives like wipes and hoists for those more ill. But also of course having less 'other stuff' putting someone beyond their envelope and/or ill (and vice versa)

It is no use telling someone in a job/education that isn't remote about pacing, even if you were a clinic with staff who actually 'get it' and know that reducing overall exertion is needed without eg then doing something to address the workplace expectations that would dictate how much and when you'd need to bathe and taking seriously the above - it's not an activity where people are 'overdoing their showers and need teaching' or can be broken up-, you can only make it less exerting and showering less often.

So even if it was just on an activity level, the very fact that I'm not sure / familiar with what level of illness she is talking about or what % that would include where showers don't affect or become hard when one is in PEM or you have to wait until you feel up to it, and yet it is a potential daily chore one can only avoid on certain days makes that 'belief' of what they think PEM is/the concept of the illness rather strange.

And very much makes me think of the classic game of getting people people to do a short course where they go temporarily part-time and/or stop going grocery shopping in order to be able to attend the clinic on a workday afternoon and do daily handstands. And someone just measures 'recovery' as how long they can hold a handstand for