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

bobbler said:
Just adding because it might be useful to add a general description of what the SF-36 questions approx include for physical function

These are just from the AI at the top of the search engine, so I hope that they are suitable to paste?

"The SF-36 questionnaire assesses physical functioning through a series of questions, primarily focused on daily activities and the impact of health on those activities. These questions explore limitations in activities like walking, climbing stairs, and engaging in vigorous activities, as well as the ability to perform basic tasks like bathing or dressing.

Specific questions in the Physical Functioning domain of the SF-36 include:

Vigorous activities: How much difficulty do you have with activities like running, lifting heavy objects, or participating in strenuous sports?

Moderate activities: How much difficulty do you have with activities like moving a table, pushing a vacuum cleaner, bowling, or playing golf?

Lifting or carrying groceries: How much difficulty do you have with this activity?

Climbing several flights of stairs: How much difficulty do you have with this activity?

Climbing one flight of stairs: How much difficulty do you have with this activity?

Bending, kneeling, or stooping: How much difficulty do you have with this activity?

Walking more than a mile: How much difficulty do you have with this activity?

Walking several blocks: How much difficulty do you have with this activity?

Walking one block: How much difficulty do you have with this activity?

Bathing or dressing yourself: How much difficulty do you have with this activity?

These questions help to gauge the extent to which physical health problems limit a person's ability to participate in various activities of daily living."



It seems the questions come with a scale of 'limited a lot' to 'not limited' to select from

and from what I can gather the questions are indeed phrased over different 'recall periods' depending on the research: Short Form 36 - an overview | ScienceDirect Topics



so either fronting each question with “over the last month …” or “in the last week…”
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Lou B Lou said:
What junk is this? These activities are not in the least bit comparable.

"Moderate activities: How much difficulty do you have with activities like moving a table, pushing a vacuum cleaner, bowling, or playing golf?"
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This is not new information. The SF-36 physical functioning questionnaire is the old one that's been used for most ME/CFS GET and CBT trials as an outcome measure, including PACE.

We have multiple threads on it, including:
Members only Explaining the SF-36 questionnaire
What do people think of SF-36?

If you want to discuss it further I suggest going to one of those threads.



 
I'm trying to get my head around where this project is up to.

Here's a copy of information about who is on the team running the project:
The project is led by Prof Sarah Tyson from the School of Health Sciences, University of Manchester, who has ME herself. Dr Peter Gladwell (North Bristol NHS Foundation Trust and BACME), Dr Keith Geraghty (University of Manchester), Dr Mike Horton (University of Leeds) and Russell Fleming (ME Association) are also on the research team.
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https://www.s4me.info/threads/uk-me...fs-specialist-services-2023.33221/post-535585

Here's the most recent article I could find on the MEA website:

Clinical Assessment Toolkit

The ME Association is funding a study led by Prof Sarah Tyson of University of Manchester (who also has ME) to develop a clinical assessment toolkit in collaboration with people with ME (PwME) and clinicians in NHS ME/CFS specialist services.

This is because her work with other long-term disabling conditions has shown that an assessment toolkit can help to identify patient difficulties and needs. This understanding will be the basis for priority and goal setting, which in turn supports discussion and planning management programmes.

To achieve this, the assessments in the toolkit need to be carefully developed to ensure they cover the full range of symptoms and disabilities, are easy to use, and produce accurate and useful information.

People with ME/CFS have been testing these new assessment tools and recruitment is continuing via the ME Association E-Newsletter. This phase of the study is scheduled to be completed by the by the end of April 2025 when we aim to make the five assessment measures available to clinicians. Phase II will focus on publishing the methodology in respectable journals and making the toolkit available as a digitally accessible resource for both clinicians and patients.

If you want to ask Professor Tyson a question, please email: sarah.tyson@manchester.ac.uk

FREQUENTLY ASKED QUESTIONS​

What is a clinical assessment toolkit?​

A clinical assessment toolkit is a series of assessment tools used to support clinical assessment. When you first see a health professional, there is an assessment process to gather information to understand your difficulties and history. This can be used to make a diagnosis or develop a management plan. There are many different types of assessment tools; blood tests and scans could come under this broad definition. In this case, our priority is the key aspects of ME/CFS – i.e. symptoms, post-exertional malaise and disabilities/activity limitations.

There will also be a clinical needs assessment, which asks about what you want and need to get from the service. It helps to identify your priorities, which is the vital step in developing self-management strategies. Finally, we include a patient reported experience measure (or patient satisfaction survey) which is for services to evaluate the care they are providing, and see how /where it could be improved.

How is a clinical assessment toolkit used?​

The main use is for assessment. ME/CFS causes such range in the type and severity of difficulties that it can be very hard to explain, or understand people’s experience. The assessment tools assist with this, by standardising and quantifying the straight forward things that can be (relatively) easily described or defined. This leaves more time and energy for more intangible, personal issues that cannot be measured such as relationships, or management strategies.

A great advantage for people with ME/CFS is that the tools can be completed in your own time and pace, outside the healthcare appointment. So, it gives you time to think about your answers, to pace the demands of the assessment process, and gives a tangible record for your own use in addition to clinical notes.

In addition to the assessment, the information from the tools will help identify your main problems and difficulties, and what you most want to address. This is referred to as prioritising and goal setting. It can be a challenge when multiple body systems are affected and all aspects of your life are impacted. The tools can help with that and initiate discussions about and what you want/ need to do about it (i.e., management approaches).

How have people with ME/CFS been involved?​

A key, unique aspect of the toolkit project is that it is a co-production between people with ME/CFS and specialist ME/CFS services. This is to ensure that the toolkit provides information that is important and relevant to both people with ME/CFS and clinical services, and is easy to use. Ensuring the ‘patient voice’ is heard is front and central to the project. It is led by people with ME/CFS, and the work is being done by people with ME/CFS. In addition, we convened an advisory group of people with ME/CFS, who volunteered in response a request in MEA newsletter, who comment and advise at every stage of the research. This project is truly patient-led.

Why are professionals from clinical services involved?​

As well as the ME advisory group, there is a clinical advisory group. This includes people who work in ME specialist services from a range of professional backgrounds and types of service. An important factor influencing whether a new innovation is taken up in clinical practice is whether it is ‘fit for purpose’. That is, whether it is easy for clinicians to use, provides the information needed, in a way that is needed, and supports (or at least, does not distract from) all the other aspects of care and practice that clinicians needs to provide. The clinical advisory group have contributed to every stage of the project. We realise that some people with ME will consider it controversial to work with clinical services. Our view is that one has to engage with people, in order to influence them or change practice.

SURVEYS​

Why not use objective measures such as activity monitors or heart rate monitors?​

Technology such as activity or heart rate monitors have a great deal to offer people with ME. They are great for measuring an individuals’ day to day variability and to monitor longer term changes, or outcomes. However, they are a non-specific or proxy measure.

For example, a step counter will tell you how many steps you have taken that day, but it won’t tell you what you were doing, where you were going, how you had to adapt other activities to do those steps, or the consequences of doing them. This is information needed to a) detail your activity levels, what you are, or are not able to do, and b) support conversations about how to manage them.

In the future, I envisage the assessments in the toolkit will be combined with technological objective measurements to get the best of both worlds. However, there needs to be a lot more research into the best parameters to measure, the best way to measure them, how accurate and reliable they are, and to develop inexpensive and easy to use formats, before recommendations can be made for use in clinical practice, or for research.

Why are there so many questions?​

The initial surveys tend to be long. This is because we are trying to cover a wide range of abilities and severity of ME. Part of the analysis involves reducing the number of questions as much as possible, using a data-driven approach, rather than our pre-conceptions about what is important, or needed. The final version of each assessment tool will be as short as possible. We will also explore whether separate scales can be produced for specific issues. For example, people with severe ME/CFS. This will mean that people will not have to complete the whole questionnaire, all the time.

​

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This is because her work with other long-term disabling conditions has shown that an assessment toolkit can help to identify patient difficulties and needs
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This is really the fundamental problem underneath the insane psychosomatic project, and the massive failure that is so-called evidence-based medicine: judge us not by our outcomes, but by our intentions, and only by our intentions. Also: how dare you judge us? Worship us. Agree with us, always and forever, for we are noble and good.

You can rephrase this in support of Theranos:
This is because decades of clinical experience have shown that reliable blood testing technology can help to identify patient difficulties and needs
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And, yes, sure, if you could do what you intend to do, you would achieve the thing you intend to do. But this has literally never been done this way. Not once. Unlike the technology Theranos was claiming to be developing, which was a significant upgrade on existing technologies, the health care technology equivalent of how a modern smart phone can replace any of: a computer, a music player, a mobile phone, a calculator, a scanner, a camera, and so on.

But in the case of psychobehavioral evidence-based medicine, literally nothing like this has ever been achieved. Even today it's still discussed for its potential, forever promising, for the intentions behind the attempts at developing them. But no one has ever achieved anything useful out of this process. Not for other long-term disabling conditions, or anything like it.

All of this is aspirational, and it will forever remain aspirational, because always they judge themselves on their intentions, while we criticize them for the total lack of useful outcomes, and they just always stick to their positions that their intentions are noble and we are big bad meanies for not seeing it. Or whatever.

Fundamentally it's the same problem as taxation without representation that led to democratic revolutions against monarchic rule. We remain completely unrepresented, have zero meaningful influence on what the medical aristocracy does to us, about us, in secret, behind closed doors. This is why they fail. They pursue their goals, detached from our needs, are never held accountable for anything, never actually have to deliver anything, because they all judge each other based on implicit intentions, which must always be noble and good.
 
I was writing this with something else in mind but it seems apt here..

The best I’ve been is when doing less than the limits this disease imposes on me allow. Not pushing or being pushed.

I don’t need advice on how to do this. I don’t need an app to track things. I am the expert here and I have never met a health or social care professional who is close to starting to understand what we live with.

I need people to do the things I cannot. To accept what I say I can and cannot do. To listen and learn and adapt how they work and support me.

It is not my understanding of where my limits are that is the problem. It is other people’s. I don’t see how any of this helps change that. It’s busywork.
 
Just to add, one reason often given for these measurements is to measure outcomes of treatments. And we hopefully will need measures of those.

But this level of detail would only seem useful for interventions which have minimal impact (so ones which basically don’t work). And seem completely useless for people who are more severely affected. I can’t speak for those who are milder.

Something much more blunt and brief would seem more appropriate. And what is possible/good/bad for different people as well as different severities will be different so can’t all be captured and compared side by side. But it should be pretty simple and brief and clear for anything that really works.

Apologies of this has already been covered. I haven’t been through the full thread.
 
hotblack said:
I was writing this with something else in mind but it seems apt here..

The best I’ve been is when doing less than the limits this disease imposes on me allow. Not pushing or being pushed.

I don’t need advice on how to do this. I don’t need an app to track things. I am the expert here and I have never met a health or social care professional who is close to starting to understand what we live with.

I need people to do the things I cannot. To accept what I say I can and cannot do. To listen and learn and adapt how they work and support me.

It is not my understanding of where my limits are that is the problem. It is other people’s. I don’t see how any of this helps change that. It’s busywork.
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Agreed. However, and I've had this a long time so it covers different severities and situations here too, I'd have and still would benefit from having proper knowledgeable professionals eg. proper OT and/or nurse that are listening and understanding our limits and then advocating/backing up rather than questioning this cage and all its quirks in which I'm having to struggle along to 'live'.

And could then be a liaison for things such as services we need to access or purchases we might need to make so that we aren't left as people too ill to have the normal level of conversation being lumbered with explaining the unbelievable when we all know people are more likely to believe from a third person that if it comes from yourself, particularly when certain people have made a career out of telling those services specifically we are deluded or whatnot.

And that doesn't seem to be impossible, when you look at other conditions that are taken seriously when they have good people (I think the bps pushes into all areas, and you can always get the odd person who believes in 'motivating' and doesn't even see their own ideology blinding them from seeing/hearing).

But I can't see how these measures will prevent cherry-picking, will be used to get people to educate themselves on the nuances of a condition they fail to get etc. and won't be used for dodgy retrospectives in the same way we've had dodgy ones in the past. Instead of proper longitudinal measures. And someone working to develop what is it that can be measured to show when we are in a crash etc.

I have a feeling we yet again won't be measured in any medical 'good intention' sense. But it will be data held for behavioural purposes and leave people incredible vulnerable.


Its such BS that this was trying to be inferred early on that it was ever about assessing the crap staff and ideologies at clinics - the bit that needed to open its eyes and change.

I feel like now it might turn into something where human rights lawyers need to get involved. Even criminals released with ankle tags I'm pretty sure have laws to ensure it is only capturing if they step over the threshold after curfew and no other data.

And yet coercion has been the mainstay of 'treatment' for ME/CFS for the last few decades and it feels like the same individuals who enjoyed that position of coercion have not stated any intention to change that inappropriate, unjustified sets of powers they somehow got allowed to implicitly have over patients. And we've added this in. Our own body data going back to people who haven't even said sorry or acknowledged harm or it not working but instead got abusive when people tried to flag the impact of their treatment.
 
hotblack said:
I don’t need advice on how to do this. I don’t need an app to track things.
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hotblack said:
I need people to do the things I cannot...To listen and learn and adapt how they work and support me.
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Yes, yes, but that's no good to academics, is it dearie? How are they supposed to bring in grants for their expertness if you already know? What are they going to write in their papers—that you need social care? Tut tut, a child of five could work that out.

Honestly, people don't even seem to want to understand what it's like being an expert these days.

(Sorry! It's just what went through my head.)
 
hotblack said:
I was writing this with something else in mind but it seems apt here..

The best I’ve been is when doing less than the limits this disease imposes on me allow. Not pushing or being pushed.

I don’t need advice on how to do this. I don’t need an app to track things. I am the expert here and I have never met a health or social care professional who is close to starting to understand what we live with.

I need people to do the things I cannot. To accept what I say I can and cannot do. To listen and learn and adapt how they work and support me.

It is not my understanding of where my limits are that is the problem. It is other people’s. I don’t see how any of this helps change that. It’s busywork.
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Yes, yes, yes, a thousand times yes. Very well said, hotblack.

Edit:
I would add that for me the wearable tracking is about making me take more notice of my symptoms and recognise when to stop and to give myself permission to stop. Not everyone needs this.
 
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