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

Sean said:
With that usual caveats about subjective reporting and the potential for such measures to be misleading and open to manipulation, there might be some value in a general measure of patient satisfaction with the clinical encounter, separate from actual therapeutic benefit.
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I don't argue with that - but I thought when this project was first advertised that they made it sound like the reason for it and purpose of the measure was what they are now calling 'PREM'

And on that basis the entire 'PROM' should pretty much only be the 'PREM' if it is about assessing the service?
 
MrMagoo said:
It’s all a bit much for me just now, but there was discussion with Sarah Tyson about some question having an answer along the lines of some, moderate, massively, etc and posters worried that those terms mean different things to different people, so it wasn't an objective or clear question/answer option. The response was that it’s “what it means to the person answering” which annoyed posters.
Gladwell criticisms of the CFQ reminded me of that.
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I think it is definitely worth us switching to that thread and looking through his criticisms in detail

I'm minded they went into that knowing perhaps they wanted to get rid of the 'physical function' measure years ago

SO I don't know whether this was a tick-box exercise of 'any old excuse' to say the measures don't work to bring in one that can claim the excuse of 'it's how some physios delivered it wrong, not the rehab/what itself'

But I'm minded that 13 people in a single room with a psychologist doing an individual intense interview is also open to a lot of influence, particularly after a certain amount of minutes when you'd be so exhausted someone would be putting words in your mouth because you can't think given the interview techniques look for how you would test cognitive exhaustion by asking direct, specific questions and watching people conk out.
 
bobbler said:
I don't argue with that - but I thought when this project was first advertised that they made it sound like the reason for it and purpose of the measure was what they are now calling 'PREM'

And on that basis the entire 'PROM' should pretty much only be the 'PREM' if it is about assessing the service?
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I don't think that's right. I think it is intended to be a whole suite of new resources as a toolkit for clinical care, providing information on which the clinician can base that care. The service evaluation aim is just a part of the package.
 
MrMagoo said:
It’s all a bit much for me just now, but there was discussion with Sarah Tyson about some question having an answer along the lines of some, moderate, massively, etc and posters worried that those terms mean different things to different people, so it wasn't an objective or clear question/answer option. The response was that it’s “what it means to the person answering” which annoyed posters.
Gladwell criticisms of the CFQ reminded me of that.
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I think you might be referring to the first item in the reply Trish received:
Trish said:
Sarah Tyson has replied to my email:

  1. As the individual is the focus of this assessment, then the level of activity (mild, mod, severe etc) refers to whatever is mild/mod/strenuous for them. The fact that the amount of activity that others would consider in those categories is not relevant
  2. All the assessments in the project are designed as clinical assessment tools, not research outcome measures. At no point have we made any claims about their use in research.
  3. The PASS assesses post exertional malaise, the FUNCAP measures functional capacity. They are two separate constructs. The next assessment tool we will be testing out is a measure of activity/disability/ function
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which I found and still find absolutely bonkers.

I've been trying to follow this topic in the last days, but it turns out it's a bit too much for me as well. (Although I think I do understand the basic gist of it - it looks like the new PROMS might be a tool to keep the "CFS/ME" clinics running pretty much on the same basis as they have so far, yes?) I'm glad you are looking into this and putting things together @Maat and @bobbler . And indeed it will be interesting to go back to Sarah Tyson's answers in this thread, like the ones above and e.g. her repeated insistence that it is technically impossible to do objective measures/activity monitoring.

Good luck digging up more relevant info.
 
Arvo said:
I think you might be referring to the first item in the reply Trish received:

which I found and still find absolutely bonkers.

I've been trying to follow this topic in the last days, but it turns out it's a bit too much for me as well. (Although I think I do understand the basic gist of it - it looks like the new PROMS might be a tool to keep the "CFS/ME" clinics running pretty much on the same basis as they have so far, yes?) I'm glad you are looking into this and putting things together @Maat and @bobbler . And indeed it will be interesting to go back to Sarah Tyson's answers in this thread, like the ones above and e.g. her repeated insistence that it is technically impossible to do objective measures/activity monitoring.

Good luck digging up more relevant info.
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Yes-that’s it thanks.

edit to add
-point 2 of Sarah’s reply “at no point…research outcome measures”
In the MEA news item yesterday, I think it said the PROMS can be used in research as a secondary function?
See yellow underline


Also in green- can be used as evidence for benefits/workplace adjustments. Well, so can anything. Unless the DWP or CIPD are backing these as a viable evidence source, so what?
 

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Arvo said:
I think you might be referring to the first item in the reply Trish received:

which I found and still find absolutely bonkers.

I've been trying to follow this topic in the last days, but it turns out it's a bit too much for me as well. (Although I think I do understand the basic gist of it - it looks like the new PROMS might be a tool to keep the "CFS/ME" clinics running pretty much on the same basis as they have so far, yes?) I'm glad you are looking into this and putting things together @Maat and @bobbler . And indeed it will be interesting to go back to Sarah Tyson's answers in this thread, like the ones above and e.g. her repeated insistence that it is technically impossible to do objective measures/activity monitoring.

Good luck digging up more relevant info.
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1. Activity pacing (like the APT arm of the PACE trial found to have no beneficial effect on it's own). In 2011 Bath was offering activity pacing and Mindfulness CBT. Part of the method for the patient to establish their own baseline was to keep an activity diary. In it each day is sectioned into slot of time. You record in the diary for each time slot during the day what activity you did, e.g. 1hr work, 30 mins complete rest, then 1hr socialising or engaged in a hobby, something that you enjoy, then 1hr rest; then 1hr preparing a meal and so one. This is called switching, between physical/menta/emotional well-being. You grade each activity by the amount of energy it takes and when I was in clinic that with either high, medium or low intensity. At the end of the week you can see how many self rated high intensity activities you have completed and what they impact has been for you. So, for example are most of your high intensity activities bunched up at the beginning of the week and you spend the rest of the week not being able to do anything. That is 'boom and bust', so you re-adjust your diary schedule and keep doing it until you reach a stable baseline. From there you can start to see if you can gradually increase your activity. If you can't maintain any increase without going over your energy envelope and crash, then you go back to your baseline and start again. If you find your baseline is unachievable without relapse, then you reassess and if necesassary reduced activity until stable again and only then can you re-attempt to increase.

2. So when Sarah says in her numbered answer:
MrMagoo said:
Statement by Sarah Tyson
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1. "As the individual is the focus of this assessment, then the level of activity (mild, mod, severe etc) refers to whatever is mild/mod/strenuous for them. The fact that the amount of activity that others would consider in those categories is not relevant"
​
that aligns with what they were doing in 2011 although the words are slightly different. For example, for me currently a high intensity activity is typing this answer. In order to do this I shan't be able to watch Eastenders tonight. (Cognitive) Since I enjoy watching Eastenders (don't hate!) this high intensity activity is also impinging on my quality of life enjoyment. So I swapped that for watching the live letters post for 10 mins, Laughed my head off.

It's about achieving a balance. So others writing this might be a low intensity activity and cooking a meal a high intensity avtivity. For me cooking is an unachievable activity both physically and cognitively, even with aids, perching stool and breaking the task down. I end up doing silly things such as stiring the pasta in a pan of boiling water, and forgetting to use an implement! That's why I have a carer who also helps me with personal care, sometimes that even has to take place while I'm lying down.

3. Because, I suppose, the fact that each individual's activity is graded personally to how they experience the impact of energy use, i don't understand how they can compare activity across the service, because high intensity or (severe/strenuous, she uses two different terms) for one person may be cleaning their teeth, and for another may be cooking a meal, or not achievable at all, no matter how small a task it's broken down to through the day. They can't group them altogether and say that overal high intensity activity causing relapse has improved, but its' improved from what level, surely?



​
 
Arvo said:
I think you might be referring to the first item in the reply Trish received:

which I found and still find absolutely bonkers.

I've been trying to follow this topic in the last days, but it turns out it's a bit too much for me as well. (Although I think I do understand the basic gist of it - it looks like the new PROMS might be a tool to keep the "CFS/ME" clinics running pretty much on the same basis as they have so far, yes?) I'm glad you are looking into this and putting things together @Maat and @bobbler . And indeed it will be interesting to go back to Sarah Tyson's answers in this thread, like the ones above and e.g. her repeated insistence that it is technically impossible to do objective measures/activity monitoring.

Good luck digging up more relevant info.
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cont'd

4. Access to work, totally separate from clinic and available to all, help with changes in the working environment, such as ground floor office, a quiet area for rest periods, taxis to travel to work, as I was unable to drive by that stage. I had that all lined up and arranged independently with work, ready for when I returned to work. I was never able to take advantage of it, as I never walked into the office again. Access to Work: get support if you have a disability or health condition: What Access to Work is - GOV.UK (www.gov.uk)

5. In Sarah's comment numbered 2. she states:

2. All the assessments in the project are designed as clinical assessment tools, not research outcome measures. At no point have we made any claims about their use in research.​

Yesterday's statement:

"The assessments in the toolkit could also be used as outcome measures in clinical trials, but this is a secondary purpose. " Patient Reported Outcome Measures (PROMs) in ME/CFS - The ME Association
 
Maat said:
cont'd

4. Access to work, totally separate from clinic and available to all, help with changes in the working environment, such as ground floor office, a quiet area for rest periods, taxis to travel to work, as I was unable to drive by that stage. I had that all lined up and arranged independently with work, ready for when I returned to work. I was never able to take advantage of it, as I never walked into the office again. Access to Work: get support if you have a disability or health condition: What Access to Work is - GOV.UK (www.gov.uk)

5. In Sarah's comment numbered 2. she states:

2. All the assessments in the project are designed as clinical assessment tools, not research outcome measures. At no point have we made any claims about their use in research.​

Yesterday's statement:

"The assessments in the toolkit could also be used as outcome measures in clinical trials, but this is a secondary purpose. " Patient Reported Outcome Measures (PROMs) in ME/CFS - The ME Association
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Thanks, I’m not great with the quotes but this is what I was saying.

Anything can be “evidence” a photo of my unmade bed can be evidence. Not “good” evidence. Not “accepted” evidence, but sure, submit it. It’s hardly a good reason for these questionnaires/PROMS to exist. Gilding the Lily (or polishing a…)
 
Maat said:
1. Activity pacing (like the APT arm of the PACE trial found to have no beneficial effect on it's own). In 2011 Bath was offering activity pacing and Mindfulness CBT. Part of the method for the patient to establish their own baseline was to keep an activity diary. In it each day is sectioned into slot of time. You record in the diary for each time slot during the day what activity you did, e.g. 1hr work, 30 mins complete rest, then 1hr socialising or engaged in a hobby, something that you enjoy, then 1hr rest; then 1hr preparing a meal and so one. This is called switching, between physical/menta/emotional well-being. You grade each activity by the amount of energy it takes and when I was in clinic that with either high, medium or low intensity. At the end of the week you can see how many self rated high intensity activities you have completed and what they impact has been for you. So, for example are most of your high intensity activities bunched up at the beginning of the week and you spend the rest of the week not being able to do anything. That is 'boom and bust', so you re-adjust your diary schedule and keep doing it until you reach a stable baseline. From there you can start to see if you can gradually increase your activity. If you can't maintain any increase without going over your energy envelope and crash, then you go back to your baseline and start again. If you find your baseline is unachievable without relapse, then you reassess and if necesassary reduced activity until stable again and only then can you re-attempt to increase.
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I'm beginning to think we need another study.

So: Group A uses up however much of their available resources are required to fill in all this paperwork, whilst Group B does it the old-fashioned way—assessing and reassessing the constantly-moving target that is their functional capacity by guesswork, intuition, and experience.

Then we remove all the activities that don't qualify for inclusion, because they're not optional and therefore can't be 'activity managed' by any method.

We'll find out which group managed their capacity most effectively, which group was able to do more things they enjoy, and what percentage of an ME patient's daily life is actually amenable to 'activity management'.
 
Arvo said:
I think you might be referring to the first item in the reply Trish received:

which I found and still find absolutely bonkers.

I've been trying to follow this topic in the last days, but it turns out it's a bit too much for me as well. (Although I think I do understand the basic gist of it - it looks like the new PROMS might be a tool to keep the "CFS/ME" clinics running pretty much on the same basis as they have so far, yes?) I'm glad you are looking into this and putting things together @Maat and @bobbler . And indeed it will be interesting to go back to Sarah Tyson's answers in this thread, like the ones above and e.g. her repeated insistence that it is technically impossible to do objective measures/activity monitoring.

Good luck digging up more relevant info.
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I think the papers that I’ve been mentioning recently show that the comment about it not being used in research are a bit disingenuous and a flase separation given the conclusion of Crawley eg al (2013)
 
Kitty said:
I'm beginning to think we need another study.

So: Group A uses up however much of their available resources are required to fill in all this paperwork, whilst Group B does it the old-fashioned way—assessing and reassessing the constantly-moving target that is their functional capacity by guesswork, intuition, and experience.

Then we remove all the activities that don't qualify for inclusion, because they're not optional and therefore can't be 'activity managed' by any method.

We'll find out which group managed their capacity most effectively, which group was able to do more things they enjoy, and what percentage of an ME patient's daily life is actually amenable to 'activity management'.
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The real cost of living
 
Kitty said:
I'm beginning to think we need another study.

So: Group A uses up however much of their available resources are required to fill in all this paperwork, whilst Group B does it the old-fashioned way—assessing and reassessing the constantly-moving target that is their functional capacity by guesswork, intuition, and experience.

Then we remove all the activities that don't qualify for inclusion, because they're not optional and therefore can't be 'activity managed' by any method.

We'll find out which group managed their capacity most effectively, which group was able to do more things they enjoy, and what percentage of an ME patient's daily life is actually amenable to 'activity management'.
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Yep :banghead:

I remember stating in group after week one, that planning and filling in the diary (whilst actually trying to work reduced hours and fit in the all homework)on top of daily life events outside of my control and which weren't manageable, plus the additional 2hr per week session at the clinic, was actually reducing the amount of energy I had before I arrived at the clinic! 6 weeks later I couldn't lift a pen.
 
It’s the mystery of the “baseline” isn’t it.

According to Visible app, and the workwell foundation paper it’s based on, my baseline is far lower than I would have imagined. The BPS GET model of do what you’re doing now but add a 2k walk on top (because life is the same every day, of course it is, you expend the exact same energy no matter what happens in your daily life/s) it’s cuckoo. Their model isn’t even a model.
 
MrMagoo said:
It’s the mystery of the “baseline” isn’t it.

According to Visible app, and the workwell foundation paper it’s based on, my baseline is far lower than I would have imagined. The BPS GET model of do what you’re doing now but add a 2k walk on top (because life is the same every day, of course it is, you expend the exact same energy no matter what happens in your daily life/s) it’s cuckoo. Their model isn’t even a model.
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and that's because it's based on the fact that the only thing stopping you from improving is your fear of returning symptoms and deconditioning. "The Glass Cage" 1994.
 
I once used hypnotism to cure a phobia, and calmly chanted myself into actual danger whilst not being “afraid” of something relatively harmless, failing to look at the world around. I’ll stick with my fear, thanks.
 
Dr David Putrino is using Visible data for research. Apparently Visible has become the largest dataset in the world for biometrics, symptoms and interventions for Me/CFS. Imagine that, a whole big ME dataset. Just floating about for anyone to research.
 

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