MrMagoo
Senior Member (Voting Rights)
Rehabilitation and pacing (up)
Of course there is treatment which produces positive outcomes, otherwise why is the NHS running all these clinics?
UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023
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Of course there is treatment which produces positive outcomes, otherwise why is the NHS running all these clinics?
In case they take my comment down, I have just posted this on the MEA FB post abou the questionnaire:
Trish Davis
I'm sorry to say I think this questionnaire is very badly designed. It's far too long, the options don't make sense, adjustments can be slight or major, and all actiivities contribute to symptoms, so how do we pick which answer to choose? And it takes no account of the cumulative effect of all activities over a day and longer, or how often we are able to do each activity. Using this as the basis of some sort of scoring system will lead to distortions and clinics are bound to misuse the scores to pretend their 'treatment' works. And this is just one of several long and badly designed questionnaires included in the clinical toolkit. I think it's a recipe for perpetuation of all that was worst in the pre 2021 NICE guideline clinics. Why is not the MEA fighting instead for doctor led clinics that deal with all severity levels properly.
Trish Davis
I'm sorry to say I think this questionnaire is very badly designed. It's far too long, the options don't make sense, adjustments can be slight or major, and all actiivities contribute to symptoms, so how do we pick which answer to choose? And it takes no account of the cumulative effect of all activities over a day and longer, or how often we are able to do each activity. Using this as the basis of some sort of scoring system will lead to distortions and clinics are bound to misuse the scores to pretend their 'treatment' works. And this is just one of several long and badly designed questionnaires included in the clinical toolkit. I think it's a recipe for perpetuation of all that was worst in the pre 2021 NICE guideline clinics. Why is not the MEA fighting instead for doctor led clinics that deal with all severity levels properly.
Fainbrog
Senior Member (Voting Rights)
I guess maybe many have them but never knew that was their purpose/origin.
It just stuck out though as symptomatic of the sort of things might be wrong with the surveys (I’ve not fully read them and was put off by Tyson’s outburst on here).
Whilst likely not with malice, more, just a ‘not getting it’ choice of wording (gaming chair) suggestive of stuff that pwME, especially at the more severe end, would clearly not be doing. Can you get out of bed (for a bit of intense gaming?)
Maybe I’m being overly sensitive and reading too much into a choice of two words .
alktipping
Senior Member (Voting Rights)
the whole form reads like a D W P interrogation in order to catch you out and deny your lived experience in order to stop or deny your benefits . Who at the MEA thought this would be a useful tool to help patients .
While it remains predicated on the rehab notion of' establishing a baseline' it will fail.
If they started with the concept of a ceiling, and how to avoid running into it, they might get further.
obeat
Senior Member (Voting Rights)
This is just wrong. I have deteriorated over 35 years but this is not because of poor management or lack of goal setting or all the other rubbish terms they use. It's the nature of the illness for some of us and it should be acknowledged by MEA.
I agree. The MEA seem very reluctant to admit that none of the so called "specialist support" causes improvement, and much of it is harmful. And that however carefully we manage our lives, many of us deteriorate over the years.
Someone has posted this comment on the FB post. I had been thinking the same thing and forgot to say it, so I'm glad they did. How on earth could Sarah Tyson and her advisors think it in any way appropriate to word the option like this? And they really rub it in by using the same options for every question, so pwME are being invited to tick multiple times that they avoid activities...
Response to @Trish from Sarah Tyson
Discuss...
Trish Davis Hello again Trish
I take your comments and would like to understand more about your thoughts. I will address the issue of the length of the MEAQ in my response to Ann West’s post to avoid duplication.
I am interested in why you feel the options don’t make sense. In any assessment it is important to be very clear about the objective/aim. In this case it is to identify the activities that people may be struggling with, the degree of that struggle and how they are managing it. (I.e. no problem; yes but adapting; yes but limited; no cant). We are not asking about the size or nature of any adjustments, just whether they are made. Finer detail about the nature of the adjustments, cumulative effects, etc would be addressed in the discussions with clinicians that follow from the assessment.
I am not sure that I agree all activities lead to symptoms, certainly the activity means that one exceeds your PEM threshold they do, but it if the activity is within the energy envelope it would not. We have separate assessments in the toolkit to assess symptoms and PEM.
One of the reasons we are collecting data in MEAQ2 is because we adjusted the response format based on our analysis of the MEAQ1 data – we split adaptation and limitations into sperate answers. A large proportion of the analysis is examining the response format to ensure all the options work as they should and contribute to the total score, so it avoids any distortions and works equally for all groups (e.g. people at different levels of severity).
I hope this allays your concerns. If not, perhaps you could add some detail about what you feel the problem is, so I can look into how we can do anything about it.
Discuss...
Trish Davis Hello again Trish
I take your comments and would like to understand more about your thoughts. I will address the issue of the length of the MEAQ in my response to Ann West’s post to avoid duplication.
I am interested in why you feel the options don’t make sense. In any assessment it is important to be very clear about the objective/aim. In this case it is to identify the activities that people may be struggling with, the degree of that struggle and how they are managing it. (I.e. no problem; yes but adapting; yes but limited; no cant). We are not asking about the size or nature of any adjustments, just whether they are made. Finer detail about the nature of the adjustments, cumulative effects, etc would be addressed in the discussions with clinicians that follow from the assessment.
I am not sure that I agree all activities lead to symptoms, certainly the activity means that one exceeds your PEM threshold they do, but it if the activity is within the energy envelope it would not. We have separate assessments in the toolkit to assess symptoms and PEM.
One of the reasons we are collecting data in MEAQ2 is because we adjusted the response format based on our analysis of the MEAQ1 data – we split adaptation and limitations into sperate answers. A large proportion of the analysis is examining the response format to ensure all the options work as they should and contribute to the total score, so it avoids any distortions and works equally for all groups (e.g. people at different levels of severity).
I hope this allays your concerns. If not, perhaps you could add some detail about what you feel the problem is, so I can look into how we can do anything about it.
MrMagoo
Senior Member (Voting Rights)
“…certainly the activity means that one exceeds your PEM threshold they do, but it…”
Eh? I know what she is trying to say is wrong but she doesn’t even make sense saying it
I wouldn’t even reply to her, she won’t take it in
Sarah has responded to my comment.
I'm about to dash out the door for a client meeting but will consider it and respond later .
Posting here as it offers a glimpse into stats scoring
Hi Anne
This has turned into a rather long post, but I have tried to address the issues you have raised thoroughly.
Well, as explained in the introduction, we are developing an assessment to examine people’s activity levels, and this data collection enables us to complete that development by analysing the revisions we made from MEAQ1 and making further revisions as necessary.
I assure you it is completely tailored for people with ME.
I agree that it is important to be concise, but not at the cost of comprehensiveness. As the aim of the MEAQ is to highlight issues that need to be addressed, comprehensiveness is clearly important. Our intention is to make it as long as it needs to be, but not more.
A large section of the analysis focusses on performing the item reduction in a manged and data-driven way, rather than relying on individuals’ opinion, which has not worked well in the past. In the analysis of MEAQ2, we will investigate whether we can use the hierarchical scaling structure to further minimise the number of Qs that need to be answered. This is novel and rather exciting for assessment geeks!
I will explain when we have the results. However, I would welcome a better understanding of your expectations and preferences. How long is too long? What is the optimal length? Which activities should be dropped to make it shorter?
We have wrestled with this issue of cumulative effects. We felt it was covered by the ‘limitations’ response options. If one can do something once or twice a day but not multiple times, then the answer is “I limit or avoid doing this”. If someone can do something but limits it so they can do other things as well then, again the answer is the ‘limitations’ option.
As I explained in my reply to Trish Davies above, our aim is not to cover every aspect of activity levels (that would be really, really, really long). Rather, the aim is to highlight the activities that are an issue which enables further discussions about the ins and outs of the difficulties faced and what one might do about them.
We have also added comments boxes throughout the assessment so people can add that detail as they go along, if they wish.
As far as I can tell, it is nigh on impossible to measure cumulative effects because they are totally individualised and vary all the time. Do you have any suggestions about how one could go about it?
We used a standardised response format to minimise the cognitive demand of completion.
We tested this quite a bit in the piloting stage of the toolkit and most people liked the predictability as they don’t have to read it so closely every time.
Another big section of our analysis is to examine how the response format works. As a result of the analysis of MEAQ1 we split the original (very broad) adaptation answer into separate ‘adaptation’ and ‘limitations’ answers. The results of our initial piloting of MEAQ2 is that both options are used and appear to differentiate different levels of ability, but we will not know until we have completed the full analysis. If necessary, we will revise the format further.
In the introduction, we address the issue of fluctuations. We are asking for an overall indication of people’s level of activity– which is the level of detail needed to address the aim of the assessment. We have added comment boxes at the end of each section, where people can add further detail if they wish.
I do not understand why you think goal setting and treatment planning are insulting. Could you explain? They are fundamental part of clinical practice. Clinicians would be struck off if they did not do it. So, it is kind of non-negotiable. Our aim is to produce tools which make it easier for both people with ME and clinicians to do this effectively, easily and to ensure the patients’ voice is heard.
For the record, the toolkit and digital app we are working on have absolutely nothing to do with the DWP. Period.
Yes, we are aware of FUNCAP. It is a perfectly good assessment of the impact of activity in a limited number of activities. If you prefer that, then use that.
The MEAQ focusses on what people can/cannot do, and how they manage a broad range of activities. It is a different assessment doing a different job.
ETA highlights by me for consideration later
I'm about to dash out the door for a client meeting but will consider it and respond later .
Posting here as it offers a glimpse into stats scoring
Hi Anne
This has turned into a rather long post, but I have tried to address the issues you have raised thoroughly.
Well, as explained in the introduction, we are developing an assessment to examine people’s activity levels, and this data collection enables us to complete that development by analysing the revisions we made from MEAQ1 and making further revisions as necessary.
I assure you it is completely tailored for people with ME.
I agree that it is important to be concise, but not at the cost of comprehensiveness. As the aim of the MEAQ is to highlight issues that need to be addressed, comprehensiveness is clearly important. Our intention is to make it as long as it needs to be, but not more.
A large section of the analysis focusses on performing the item reduction in a manged and data-driven way, rather than relying on individuals’ opinion, which has not worked well in the past. In the analysis of MEAQ2, we will investigate whether we can use the hierarchical scaling structure to further minimise the number of Qs that need to be answered. This is novel and rather exciting for assessment geeks!
I will explain when we have the results. However, I would welcome a better understanding of your expectations and preferences. How long is too long? What is the optimal length? Which activities should be dropped to make it shorter?
We have wrestled with this issue of cumulative effects. We felt it was covered by the ‘limitations’ response options. If one can do something once or twice a day but not multiple times, then the answer is “I limit or avoid doing this”. If someone can do something but limits it so they can do other things as well then, again the answer is the ‘limitations’ option.
As I explained in my reply to Trish Davies above, our aim is not to cover every aspect of activity levels (that would be really, really, really long). Rather, the aim is to highlight the activities that are an issue which enables further discussions about the ins and outs of the difficulties faced and what one might do about them.
We have also added comments boxes throughout the assessment so people can add that detail as they go along, if they wish.
As far as I can tell, it is nigh on impossible to measure cumulative effects because they are totally individualised and vary all the time. Do you have any suggestions about how one could go about it?
We used a standardised response format to minimise the cognitive demand of completion.
We tested this quite a bit in the piloting stage of the toolkit and most people liked the predictability as they don’t have to read it so closely every time.
Another big section of our analysis is to examine how the response format works. As a result of the analysis of MEAQ1 we split the original (very broad) adaptation answer into separate ‘adaptation’ and ‘limitations’ answers. The results of our initial piloting of MEAQ2 is that both options are used and appear to differentiate different levels of ability, but we will not know until we have completed the full analysis. If necessary, we will revise the format further.
In the introduction, we address the issue of fluctuations. We are asking for an overall indication of people’s level of activity– which is the level of detail needed to address the aim of the assessment. We have added comment boxes at the end of each section, where people can add further detail if they wish.
I do not understand why you think goal setting and treatment planning are insulting. Could you explain? They are fundamental part of clinical practice. Clinicians would be struck off if they did not do it. So, it is kind of non-negotiable. Our aim is to produce tools which make it easier for both people with ME and clinicians to do this effectively, easily and to ensure the patients’ voice is heard.
For the record, the toolkit and digital app we are working on have absolutely nothing to do with the DWP. Period.
Yes, we are aware of FUNCAP. It is a perfectly good assessment of the impact of activity in a limited number of activities. If you prefer that, then use that.
The MEAQ focusses on what people can/cannot do, and how they manage a broad range of activities. It is a different assessment doing a different job.
ETA highlights by me for consideration later
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MrMagoo
Senior Member (Voting Rights)
Quite right, you make a better point than I did!
I hope someone can ask her what she actually means by "goal setting" and "treatment planning". Professional jargon is a slippery thing.
(Neither my GP nor the ME service nor the Long Covid clinic have tried to get me to "set goals", so I'll look forward to hearing that they've all been struck off...)
BrightCandle
Senior Member (Voting Rights)
The thing is we know what it means and they know what it means but they also know they can't say it because it gives the game away. The entire point of all this slimy language is to get around the NICE guidelines and still be doing the same thing to patients justified with different language.
Jonathan Edwards
Senior Member (Voting Rights)
This makes it clear that Sarah really doesn't understand - anything much.
You cannot set a goal and plan treatment if there is no treatment.
Clinicians should be struck off not for failing to set goals but for offering invalid treatments.
It least it is transparent that this project hasn't a clue.