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

Trish Davis
Perhaps it will help you understand where I'm coming from with PEM if you read the S4ME fact sheet on PEM. https://www.s4me.info/threads/science-for-me-fact-sheets.43310/post-606969

Trish Davis


Sarah Tyson

Trish Davis The results of the PASS gives fascinating and detailed description of PEM in ME/CSF and I look forward to sharing and discussing the details in due course.



Sarah Tyson
Trish Davis If you don’t mind me saying, I think you have not grasped (or maybe are unwilling/unable to accept) that the point of the MEAQ is to ask about what people do, rather than the full detail of how they do it. There will be a multitude of different ways in which people perform tasks, make adaptation or other compromises to get through life. And that is fine. The issue is whether they do it, however they do it. Whether someone else may do it differently, or whether the person can do it in a certain way is irrelevant. We are not attempting to standardise the activities, we are asking if people do the activity, however they do it.

You ask about the scoring system and analysis approach. It is pretty hard to summarise as it is a large section of my life’s work! However, you really want to get your head around these issues I recommend the seminal texts by Anne Bowling. Luckily some of it appears to be available for free now-a-days. This is a good intro (Chapter 2) Measuring Health - Ann Bowling - Google Books
The analysis which focusses on a really thorough examination of the construct validity using Rasch analysis. The Wikipedia page is pretty good introduction. Rasch model - Wikipedia


Trish Davis
Sarah Tyson Thank you for the information about how you analyse the data. I'll take a look.
You say: "If you don’t mind me saying, I think you have not grasped (or maybe are unwilling/unable to accept) that the point of the MEAQ is to ask about what people do, rather than the full detail of how they do it."

My response to that is that I'm sorry to say I find this response patronising and missing my point. As I said earlier, I find FB particuarly difficult to use for in depth discussion, but I've tried to convey the central factors of cumulative effect and how often one can do an activity to gauging key factors of severity and need for care, which are presumably an important part of care planning. However good the mathemeatical/analytical instruments used, any summary statistic is too easily skewed by the sort of data this will provide. I think I'll have to leave it there. I have no energy left for arguing against someone so convinced their knowledge is superior to anything I might say.
 
On the topic of using the word 'avoid'

Sarah Tyson
as I said in a reply to another post, this has nothing to do with the DWP or benefits system. Period. The results of the MEAQ would not appear in anyone's records unless the individual chose to share it.

Trish Davis
Sarah Tyson any information in our clinical records, including our responses to PROMS and care plans based on them, are likely to form the basis of clinicians reports to DWP used as part of our evidence in benefit applications. I can easily see a clinician copying the wording in both care plan and benefit report, and listing activities the pwME 'avoids'. And you say we need to move past the old PACE approach and reclaim language such as 'avoid'. That sounds all very fine until we are faced with the all too common judgements made by a large proportion of clinicians we encounter who do still believe we avoid activity out of fear or laziness. Why feed their prejudices?
 
They could usefully steal a leaf from the PIP book here, and use "cannot do" in the sense of meaning "cannot do without significant adverse consequences".

I think it means the same as what is intended (but left wide open to misconstruction) with "avoid".

Using "cannot" makes it clear that it isn't a choice. When removed from context, the numerous meanings of "avoid" include "can never be bothered to do that, it's so boring".
 
Kitty said:
They could usefully steal a leaf from the PIP book here, and use "cannot do" in the sense of meaning "cannot do without significant adverse consequences".

I think it means the same as what is intended (but left wide open to misconstruction) with "avoid".

Using "cannot" makes it clear that it isn't a choice. When removed from context, the numerous meanings of "avoid" include "can never be bothered to do that, it's so boring".
Click to expand...
I remember the mantra with WCA..
Can you do XYZ?
Yes, I may be not Repeatedly, Reliably Safely....
 
Kitty said:
They could usefully steal a leaf from the PIP book here, and use "cannot do" in the sense of meaning "cannot do without significant adverse consequences".

I think it means the same as what is intended (but left wide open to misconstruction) with "avoid".

Using "cannot" makes it clear that it isn't a choice. When removed from context, the numerous meanings of "avoid" include "can never be bothered to do that, it's so boring".
Click to expand...
If the goal was to actually do this well then sure, as we can point out there are a variety of ways to fix this to avoid the biased language and to address the diseases unique challenges in activities. Having the answers include the impact on other activities for example would drastically improve it and remove the need for explanations, rather than trying to contort with adapation to mean something it doesn't. That doesn't appear to be the goal here, it appears to be to introduce and use this biased language and poor measures intentionally.
 
Sarah Tyson said:
The results of the PASS gives fascinating and detailed description of PEM in ME/CSF and I look forward to sharing and discussing the details in due course.
Click to expand...

I can hardly wait...

Given our detalied critique of the first version, if whatever version they analysed was as badly designed, I'm afraid it will be garbage-in-garbage-out. Not the fault of the efforts of all the pwME who used their precious energy to try to decipher the questions and did their best to fill in the lengthy questionnaire, but of such a badly designed questionnaire it can't possibly achieve valid or useful results.

Prove me wrong, Sarah Tyson...
 
bobbler said:
It will also support goal setting,
Click to expand...

Does any other condition get asked to set goals for their condition?

This is such a rehab mindset; if all you have is a hammer, everything looks like a nail

My goal is simple; regain full health

Doesn't need 3 questionnaires of 90 questions each.

I imagine most other patients with most other conditions have the same goal, but don't get asked epic quantities of pointless questions
 
Amw66 said:
I am not sure that I agree all activities lead to symptoms
Click to expand...

I am not sure that you should be asking pwME questions about it in that case.

Amw66 said:
I assure you it is completely tailored for people with ME
Click to expand...

This reminded me of the Victoria Wood sketch about the woman carrying out a survey on Hellman's mayonnaise.." of course it's totally bona fide - totally fona bido"

I'm always extremely wary of people who say "trust me"

If it is completely tailored for people with me, why are so many people with me pointing out the ways it doesn't work for them and their symptoms..?
 
As a foggy-brained and not at all scientific person, I think the statement about PEM not being cumulative must be the the biggest glaring clanger she has stated (in public, on Facebook)

I’m not going to attempt to argue the minutia, I think this one thing should be taken forward and highlighted.

Does CS agree PeM isn’t cumulative activity?
 
The information from a PROM is used, along with the rest of the assessment to identify the patients’ main symptoms, impairments, activity limitations, and in conjunction with the patient, decide their priorities and goals and devise a treatment plan. That is the point and process of clinical assessment. The effect of the treatment plan needs to be evaluated and monitored – to see if it working and thus whether to continue to whether to change tack.
Click to expand...

Cargo cult stuff. We'll act as if there are treatments, and if we keep acting it out for long enough, maybe the effects of a treatment will happen.
 
The effect of the treatment plan needs to be evaluated and monitored – to see if it working and thus whether to continue to whether to change tack.

Yet again the deep lack of understanding shows through. How does anybody know if the treatment had an effect or whether the patient might even have done better without it. There is no control manoeuvre. So you cannot see if it is working.

You may change tack but the justification for that has to be some sort of measure falling below expectations from controlled trial data that show expected effect magnitudes. (You don't know whether it didn't work but you have some probabilistic indications.) We are nowhere in that ballpark.
 
MrMagoo said:
Bit of a political nightmare isn’t it, who wants to publicly call out the ME A and NHS?
Click to expand...

It is, and that's partly what makes me so hacked off about the direction the MEA has taken and the frankly amateurish work it's now funding.

It puts anyone talking sense into a difficult position. I guess the best they can do is hope the whole farrago is overtaken by events, then fades rapidly from memory.
 
You must log in or register to reply here.
Back
Top Bottom