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.
 
It's on the MEA website:

Clinical Assessment Toolkit Project - The Final Survey - The ME Association

The ME Association is funding a study led by Prof […]
meassociation.org.uk meassociation.org.uk

Clinical Assessment Toolkit Project – The Final Survey​

September 1, 2025
The ME Association is funding a study led by Prof Sarah Tyson (who also has ME) from the University of Manchester (as pictured), to develop a clinical assessment toolkit in collaboration with people with ME and clinicians in NHS ME/CFS specialist services.

2025 Update from Sarah Tyson:​

Many thanks to the thousands of people who have supported the clinical assessment toolkit project. We have completed work on the first four assessments (measuring PEM, symptoms, clinical needs and patient experience) and are planning the launch to make them available for ME/CFS specialist services and people with ME to use.

In the meantime, we are working to finish off the final assessment – the ME Activity Questionnaire (MEAQ). You may remember, there was a survey to test out a draft version several months ago. We have made revisions based on our analysis and your feedback and need a second survey to check out the changes made.

The MEAQ is now shorter and simpler, although there are still quite a lot of questions, as we need to be comprehensive. However, one of the things we will be looking at in this round of analysis is how we can arrange the final items to make it less effortful to complete – more on that if it works! The questions are split into short sections, and the answers are in a standardised format to minimise the cognitive demands of completion. You can also take a break at any time so you can pace.

Please could you help by completing the survey?​

Survey

It takes about 10-15 minutes to complete.

We need a smaller number of participants for this analysis (‘just' 250) so we will close the survey once we have reached this number, which will probably be in a couple of weeks.

If you would like more information about the toolkit project and some frequently asked questions (FAQs) please click here: Clinical Assessment Toolkit

If you have any questions or comments, please contact Prof Sarah Tyson, the Chief Investigator at Sarah.tyson@manchester.ac.uk


Further Information:​

List of previous surveys (closed):​

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Developing a clinical assessment toolkit for people with ME/CFS and clinical services.
Stage 3: The ME Activity Questionnaire (MEAQ)​

We are asking adults in the UK, who have been diagnosed with myalgic encephalomyelitis (ME), which also known as chronic fatigue syndrome (CFS) to complete this online questionnaire. This is the final stage of a research study to develop a clinical assessment toolkit for ME/CFS.


We are working with people with ME/CFS and clinicians in ME/CFS specialist services to co-produce a series of assessments. The aim is to identify, understand and quantify people’s symptoms and disabilities. It will also support goal setting, treatment planning, and monitor changes. The work is led by Prof Sarah Tyson (University of Manchester), who has ME herself.


The aim of this questionnaire is to measure activity levels, and ask about the adaptations you may make to manage your symptoms and/or energy levels. You may have completed an early version of this questionnaire. We have revised it in response to your feedback and our data analysis. We now need you to complete the revised version so we can check it produces good quality information. You will see that it is shorter and the response format (the answers you choose) is simpler than the first version. However it is still quite long because it needs to capture the full range of people with ME/CFS’s abilities.


It takes about 15 minutes to complete the survey in one go. but you can take as long as you want to complete it. Your answers will be saved automatically so you can take a break whenever you like. You will come back to same place when you return. There is no ‘save’ button or confirmation of the save as it is contained in the inner workings of the survey tool, but please trust us that it will be saved. If you need help from another person, or another person to complete the survey on your behalf, that is fine.


If you would like more information about the toolkit project please read our patient information sheet here

If you would like to progress to the questionnaire, please tick the consent questions at the bottom of this page.

Further details about what you are being asked to do in this survey, and the answers to some frequently asked questions are found below.


We realise people’s activity levels vary. Rather than trying to record every detail, the idea is to take a snapshot of how you are ‘at present’ (i.e. on an average day over the last month). This can help you and others understand what you are able to do, how you adapt, and start discussions about how to manage your activity levels.


The assessment starts with some questions about you and then has sections about different types of activity and finally, an opportunity to tell us anything else about your activity levels, and the questionnaire.


Each section asks the same questions in same way. There is a ‘% Completed’ marker at the top of each page so you can keep track of how far you have got. There is a ‘back’ button so you can go backwards and check your answers if you wish. Usually, it is at the bottom of the screen, but sometimes it appears at the top. If the back button does not show, it may appear if you try on a different browser or device, or if you delete the cookie cache.


If you would prefer a paper copy or complete the survey by phone; that is fine. To arrange this or any other accommodations or if you have any other questions, please contact Sarah on sarah.tyson@manchester.ac.uk.


Consent (you must select all fields below to proceed)
  • I have had opportunity to read the participant information sheet (PIS v4 23rd Jan 2024) and to ask questions and had these answered satisfactorily.

  • I understand that my participation is voluntary and that I am free to withdraw at any time without giving a reason and without detriment to myself. I understand that it will not be possible to remove my data. I agree to take part on this basis.

  • I understand that any anonymised data collected may be made available to other researchers.

  • I understand that data collected during the study may be looked at by individuals from The University of Manchester or regulatory authorities, where it is relevant to my taking part in this research. I give permission for these individuals to have access to my data.

  • I agree to take part in this study.
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Section 1 About you
Diagnosis, ME/CFS, Long Covid, location, gender, age, duration of illness, severity

Section 2 physical activity

Over the last month, have you done this activity on an average day (rather than a good/best day)? (Choose one answer)


8. Sit up in bed for approx. 30 minutes (NB. less than 30 minutes = an adaptation)
  • Not applicable. This activity isn’t relevant to me.

  • Yes, I usually do this. It is not a problem.

  • Yes, but with adaptations (e.g. using a method that needs less effort, aids and equipment, or help from others)

  • Not really. I limit or avoid doing this so I can do other things or because it makes my symptoms worse/ triggers post-exertional malaise.

  • No, I can not do this
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The same options for each of the following:

9. Get out of bed for approx. 30 minutes (NB. less than 30 minutes = an adaptation)

10. Sit in an upright chair, e.g. dining chair, or a gaming chair, with feet on floor for approx. 30 minutes (less than 30 minutes, or having breaks with your feet up, or leaning back = an adaptation)


11. Stand up and sit down from a chair, using the arms if available
12. Bed mobility (e.g. getting in and out of bed, moving round in your bed)


13. Go to the toilet (NB Having help = adaptation)


14. Eating and drinking, i.e. biting, chewing, swallowing. (NB. An adapted diet e.g. soft food, or someone feeding you = adaptation. Alternative feeding methods e.g. naso-gastric or PEG tube = I can not do this)


15. Stand for approx. 5 minutes, e.g. while queuing or cooking (NB Being only able to stand for a shorter time, e.g. while brushing teeth = adaptation)


16. Washing and grooming (e.g. bath/shower, brushing/ styling hair, shaving, etc.) NB flannel wash or equivalent, or sitting down = adaptation)


17. Get dressed in your regular clothes


18. Stay in a room with normal lighting, without sunglasses, for approx. 30 minutes (NB less than 30 minutes = an adaptation)


19. Activity that would increase your heart rate significantly and/or make you 'out of puff'. NB A short period = limitations


20. Is there anything else you would like to tell us about personal activities of daily living?
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Trish said:
Section 1 About you
Diagnosis, ME/CFS, Long Covid, location, gender, age, duration of illness, severity

Section 2 physical activity

Over the last month, have you done this activity on an average day (rather than a good/best day)? (Choose one answer)
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A gaming chair?! That most common of seating choices for pwME.. (happy to be corrected and hear that you all have them).
 

SECTION 3: COGNITIVE ACTIVITIES​

For each numbered activity you are asked to pick one of these 5 options

Not applicable. This activity isn’t relevant to me.

Yes, I usually do this. It is not a problem.

Yes, but with adaptations (e.g. using a method that needs less effort, aids and equipment, or help from others)

Not really. I limit or avoid doing this so I can do other things or because it makes my symptoms worse/ triggers post-exertional malaise.

No, I can not do this
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Over the last month, have you done this activity on an average day (rather than a good/best day)? (Choose one answer)

21. Read a short text e.g. a note or text message



22. Listen to something e.g. an audiobook or podcast for 30 minutes (NB less than 30 mins or taking breaks = adaptation)



23. Have a conversation (face to face, phone etc) for approx. 5 minutes (NB less than 5 mins, or taking breaks = adaptation)


24. Read and understand longer text e.g. a A4 page (NB less than 1 page of A4, or taking breaks = adaptation)

25. Use social media (or emails, letters etc) to stay in touch with others for approx. 30 minutes (NB less than 30 mins, or taking breaks = adaptation)


26. Participate in a conversation (in-person or online) with three or more people for approx. 30 mins (NB less than 30 mins, fewer people, or taking breaks = adaptation)


27. Cope with stressful situations e.g. an argument


28. Focus on a cognitive task for approx. 30 minutes e.g reading, watching TV or screen time. (NB Less than 30 mins, or taking breaks = adaptation)


29. Take care of household business, e.g. ordering items, paying bills or organising repairs


30. Is there anything else you would like to tell us about cognitive activities?
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SECTION 4: HOME LIFE​

For each question you are asked to pick one of the standard 5 options as before

Over the last month, have you done this activity on an average day (rather than a good/best day)? (Choose one answer)


31. Walk short distances indoors e.g. from one room to another (NB using mobility aids e.g. a frame or walking stick = adaptation. Always using a wheelchair = ‘I cannot do this’)


32. Prepare a hot drink and/ or snack



33. Prepare and cook a meal (NB Sticking to simple meals = adaptation)



34. Walk up and down stairs (NB. taking breaks = adaptation, using a stair lift = 'I cannot do this')

35. Go to appointments, e.g. doctor, dentist, or hairdressers (NB Using alternative transport e.g. a mobility scooter = an adaptation)



36. Shop and do errands (NB Using alternative transport such as a mobility scooter = an adaptation)



37. Light housework, e.g. dusting, laundry, (un)loading the dishwasher, ‘light’ gardening



38. Take care of a pet e.g. a dog (NB less demanding pets e.g. a cat or rabbit = adaptation)



39. Heavier work, e.g. vacuuming or cleaning floors, changing sheets, heavy gardening (eg digging or weeding) or DIY for at least 30 mins.
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40. Is there anything else you would like to tell us about ‘home life activities’?
 
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