The ME Association Clinical Assessment Toolkit (ME-CAT) and app (autonom-e)

Trish said:
Why are professionals from specialist NHS ME/CFS services?
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why are they what? included, involved.................so useless?

Trish said:
I gave up. It kept telling me I could view my ticket and giving me one time codes which took me back to asking me if I wanted to view my tickets. Nothing for how to use the damn things to watch the webinar,
Click to expand...
"please email c19-yrs@elaros.com for access to the recording"

The launch of the MEA Clinical Assessment Toolkit for Clinical Services

Attend to learn more about the development and launch of the ME Association Clinical Assessment Toolkit available to clinical services
www.eventbrite.co.uk www.eventbrite.co.uk
 
Copy of the first page of the survey:

THE ME Association’s Clinical Assessment Toolkit (MEA-CAT)

Measuring post exertional malaise, disability and work status


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 survey.

This is part 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 questionnaires. The aim is to identify, understand and quantify people’s symptoms and disabilities. It will support goal setting, treatment planning, and monitor changes. The questionnaires could also be useful as outcome measures for research, or to develop and improve clinical services. The work is led by Prof Sarah Tyson (University of Manchester), who has ME herself.

The aim of this survey is to test out three measurement scales. You may have been involved in earlier stages of the MEA-CAT project to develop these scales. We have since revised them in response to your feedback and the results of our analysis, and we now need to test out the changes made to double check they produce accurate, reliable information.

The three scales we would like you to complete are the Post Activity Symptom Scale (PASS) measures post-exertional malaise (PEM), the ME Disability Scale summarises activity/disability levels, and the ME Work Status Scale (MEWS) measures the level of work/study an individual is able to undertake. We will also ask you to complete the ME Severity Scale, that was presented in the 2021 NICE Guidelines for ME/CFS and the physical function section of the SF36 (which measures overall function). These will be as a comparison with the new scales. We would also welcome any additional comments or feedback you might have.

It will take about 20 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.

Two weeks after you have completed the survey, we will contact you again to repeat it. This is so we can test how scores change over time (called test-retest reliability). This is an important issue when one is using a scale to assess outcome (i.e. whether a treatment is effective, or not), or to monitor change over time.

If you would like to progress to the questionnaire, please tick the consent questions at the bottom of this page. If you would like more information about the toolkit project please read our participant information sheet which is found at the bottom of this section.

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

Answers to frequently asked questions
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.

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.
Your answers will be saved automatically but this will not be shown on the screen becuase itis embedded in the survey tool's structure. Please be assured that your input will have been saved and if you return to the survey, it will restart where you left off.

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.

The full Particpant Information Sheet is found here

PIS v3 13th Oct 2023.pdf

Consent (you must select all fields below to proceed)

The tick boxes cover agreeing you've read the information sheet and had any questions answered satisfactorily; that it's voluntary and you can withdraw at any time but it's not possible to remove your data; that you agree for your anonymised data to be made available to other researchers, and that Manchester Uni and regulatory authorities may access the data; and you agree to take part in the study.
 
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It will support goal setting, treatment planning, and monitor changes
Click to expand...
Just curious - has anyone ever asked MEA to explain the rationale and the evidence base for "goal-setting" in ME/CFS, and ask them what treatment, precisely, is being referred to here?

I would love to see their answers to those questions. It would be most illuminating.
 
A few excerpts from the patient information sheet:

Who will conduct the research?

The project is led by Prof Sarah Tyson from the School of Health Sciences, University ofManchester, who has ME herself. Dr Peter Gladwell (North Bristol NHS Foundation Trustand BACME), Dr Keith Geraghty (University of Manchester), Dr Mike Horton (University ofLeeds) and Russell Fleming (ME Association) are also on the research team.

What is the purpose of the research?

Our aim is to co-produce a series of patient reported outcome measures (PROMs) withpeople with ME/CFS (PwME/CFS) and clinicians in ME/CFS specialist services. This will helpPwME/CFS and services identify, understand and quantify people’s symptoms anddisabilities; support goal setting and treatment planning, and monitor changes.

Working with the PwME/CFS’s and clinicians’ advisory groups we have produced draftversions of the PROMs, which have a questionnaire format. They measure people’ssymptoms; activity/ disability levels; post-exertional malaise; mood; clinical needs, andsatisfaction with services (also known as a patient experience measure or PREM).

We have tried to make sure the PROMs capture the issues that are important to PwME/CFSand the forms are easy to complete, and to use in clinical practice (ie it fits in with otherclinical processes and systems).

What if I have a complaint? If you have a complaint, please contact Sarah in the firstinstance on Sarah.Tyson@manchester.ac.uk.

If you wish to make a formal complaint to someone independent of the research team orif you are not satisfied with the response you have gained from the researchers in the firstinstance then please contactThe Research Ethics Manager, Research Office, Christie Building, The University ofManchester, Oxford Road, Manchester, M13 9PL, by emailing:research.complaints@manchester.ac.uk or by telephoning 0161 306 8089.
 

SECTION 1: ABOUT YOU​


1. Have you been diagnosed with Myalgic encephalomyelitis (ME, also known as Chronic Fatigue Syndrome (CFS)?
  • Yes

  • No
2. Have you been diagnosed with Long-Covid OR was your ME/CFS triggered by a Covid infection?
  • Yes

  • No

3. Where do you live?
  • England

  • Wales

  • Scotland

  • Northern Ireland

  • Other Islands and Crown Dependencies

  • Somewhere else

4. Email. Please add your email address. This is so we can send you the link for the retest survey in two weeks time


5. Gender.
  • Male

  • Female

  • Other

  • Would rather not say
6. Age


7. Time (in years) since diagnosis of ME/CFS or long covid

8. Severity of ME/CFS or Long-Covid
Please pick which of these levels best describes how ME/CFS affects you at the moment.
  • Mild ME/CFS: People with mild ME/CFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week.

  • Moderate ME/CFS: People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.

  • Severe ME/CFS:People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.

  • Very Severe ME/CFS:People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.





9. The following questions are about activities you might do during a typical day. Does your health limit you in these activities? If so, how much?[

Options for each activity:
Yes, a lot,
Yes, limited a little,
No, not limited at all


Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports

Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf

Lifting or carrying groceries

Climbing several flights of stairs

Climbing one flight of stairs

Bending, kneeling, or stooping

Walking more than a mile

Walking several blocks

Walking one block

Bathing or dressing yourself


10. During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of your physical health?
Options for each
Yes
No

Cut down the amount of time you spent on work or other activities

Accomplished less than you would like

Were limited in the kind of work or other activities

Had difficulty performing the work or other activities (for example, it took extra effort)

11. During the past 4 weeks, how much of the time has your health interfered with social activities?

All of the time

]Most of the time

Some of the time

A little of the time

None of the time
 
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Section 3: The ME Association's Clinical Assessment Toolkit Scales

3a. Post Activity Symptoms Scale (PASS)

The following questions are about the worsening of symptoms people with ME/CFS get when they exceed their baseline, or ‘energy envelope’. Other terms you may come across are post exertional malaise (PEM), a crash, flare up, payback, setback, or relapse. It is most commonly experienced as an increase in symptoms, but it can also involve the onset of different symptoms to your usual baseline, so we refer to a ‘worsening of symptoms'. Overall, we want to capture how things get worse or are more of a struggle when you overdo it (i.e. trigger PEM). We know this is very variable, so the idea is to take an overall snapshot of how it is affecting you at present, rather than trying to record every aspect, and the whole history. This can help you and other people understand the impact it is having and start discussions about how to manage it.


12. Do you experience a worsening of symptoms when you overdo it?
yes no

13. Triggers
Which of the following have triggered a worsening of symptoms (ie PEM) over the last month. Yes or No options for each:

Physical activity

Cognitive activity

Social activity

Emotional activity/stress

Other illnesses e.g. a viral infection

Sensory stimulus (e.g. bright lights, loud environments)

Allergies / intolerances (e.g. foods, smells)

Pain

Sleep problems

Change in the weather/ seasonal changes or temperature extremes

Hormonal changes e.g. menstrual cycle or (peri)menopause

Something else (please state)


14 Symptoms:
Which symptoms have worsened when you have ‘overdone it’ (i.e. triggered PEM) in the last month? Yes or No options for each:

Fatigue

Cognitive symptoms: difficulty with thinking and memory (brain fog)

Sleep disturbance (e.g. difficulty getting to sleep, or staying asleep, sleeping during the day)

Pain

Musculo-skeletal symptoms. (e.g. weakness, stiffness, clumsiness)

Neurological symptoms (e.g. headaches, migraine, sensitivities to sound, light etc, altered sensation, tinnitus)

Digestive symptoms (e.g. nausea, stomach pain, bloating)

Heart, lungs and circulation (e.g. palpitations, breathlessness, cold hands and feet, poor temperature control)

Orthostatic intolerance (increased heart rate, breathlessness, dizziness etc) when being more upright (i.e. sitting or standing) for a while)

Allergy symptoms (e.g. sore throat, tender glands, chills, runny eyes, rashes, wheezing, flu-like symptoms)

Emotional symptoms (e.g. increased irritability, anxiety, tearfulness)

Something else (please state)

15. Level of activity triggering a worsening of symptoms / PEM
This question refers to what is strenuous, demanding or stressful activity for you at present. Essentially, we are asking for a ballpark figure about how much you can do without triggering a worsening of symptoms. This indicates the size of your ‘energy envelope’, which is an important issue when it comes to managing energy and activity levels, and pacing. We are not asking about a comparison with other people with ME/CFS, healthy people, or how you were before you became ill. We understand that the baseline levels of symptoms fluctuate, which will impact on how much you can do

15. Overall, in the last month what level of activity has typically triggered a worsening of symptoms when you overdo it?

Strenuous or stressful activity (for you)

Moderately demanding or stressful activity (for you)

Mildly demanding or stressful activity (for you)

16. Frequency:
Over the last month, how often have you overdone it and triggered a worsening of symptoms/ post exertional malaise?

Occasionally (less than weekly)

Weekly

Daily

Constantly

17. Delay:
In the last month, has the worsening symptoms (i.e. onset of PEM) typically been delayed after you have overdone it?

Immediately, delay of less than an hour
Yes, delay of an hour or more
Yes, the next day or more
The changes involve both rapid and delayed

18. Duration of the change in symptoms:

In the last month, how long does the worsening of symptoms typically last/ take to recover after you have overdone it / triggered PEM?

A day or less

Several days

A week or more

19. Impact on daily life:
In the last month, what impact has worsening symptoms when you overdo it / post-exertional malaise typically had on your day-to-day life?

Significant issue

Major issue

Very major issue

20. Is there anything else you would like to tell us about the PASS questionnaire ?
 
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Trish said:
Copy of the first page of the survey:

THE ME Association’s Clinical Assessment Toolkit (MEA-CAT)

Measuring post exertional malaise, disability and work status


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 survey.

This is part 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 questionnaires. The aim is to identify, understand and quantify people’s symptoms and disabilities. It will support goal setting, treatment planning, and monitor changes. The questionnaires could also be useful as outcome measures for research, or to develop and improve clinical services. The work is led by Prof Sarah Tyson (University of Manchester), who has ME herself.

The aim of this survey is to test out three measurement scales. You may have been involved in earlier stages of the MEA-CAT project to develop these scales. We have since revised them in response to your feedback and the results of our analysis, and we now need to test out the changes made to double check they produce accurate, reliable information.

The three scales we would like you to complete are the Post Activity Symptom Scale (PASS) measures post-exertional malaise (PEM), the ME Disability Scale summarises activity/disability levels, and the ME Work Status Scale (MEWS) measures the level of work/study an individual is able to undertake. We will also ask you to complete the ME Severity Scale, that was presented in the 2021 NICE Guidelines for ME/CFS and the physical function section of the SF36 (which measures overall function). These will be as a comparison with the new scales. We would also welcome any additional comments or feedback you might have.

It will take about 20 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.

Two weeks after you have completed the survey, we will contact you again to repeat it. This is so we can test how scores change over time (called test-retest reliability). This is an important issue when one is using a scale to assess outcome (i.e. whether a treatment is effective, or not), or to monitor change over time.

If you would like to progress to the questionnaire, please tick the consent questions at the bottom of this page. If you would like more information about the toolkit project please read our participant information sheet which is found at the bottom of this section.

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

Answers to frequently asked questions
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.

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.
Your answers will be saved automatically but this will not be shown on the screen becuase itis embedded in the survey tool's structure. Please be assured that your input will have been saved and if you return to the survey, it will restart where you left off.

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.

The full Particpant Information Sheet is found here

PIS v3 13th Oct 2023.pdf

Consent (you must select all fields below to proceed)

The tick boxes cover agreeing you've read the information sheet and had any questions answered satisfactorily; that it's voluntary and you can withdraw at any time but it's not possible to remove your data; that you agree for your anonymised data to be made available to other researchers, and that Manchester Uni and regulatory authorities may access the data; and you agree to take part in the study.
Click to expand...
What a short, brief “to the point” intro.
 
Section 3b. The ME Disability Scale (MEDS)

21. Please choose which level best describes how ME/CFS affects you ‘at the moment’
NOTE: Activities can be physical, cognitive, social, emotional etc.
  • Level 1: Adapting activity.You can do the things that are important to you, but may need to adapt how much you do, or how you do them.

  • Level 1-2:In between levels 1 and 2.

  • Level 2: Prioritising Activities.You can do the things that are most important to you, but you limit or avoid other activities to prioritise them. For example: stopping hobbies to prioritise work (or vice versa)

  • Level 2-3: In between levels 2 and 3.

  • Level 3: Limited independence.You can carry out some light/ non-strenuous activities with rests. You will need help with some activities (including having someone else to do them) e.g. domestic chores.

  • Level 3-4:In between levels 3 and 4

  • Level 4: Essentially housebound. You need help with many activities such as domestic chores or personal care (including having someone else to do the chores). Mobility is probably severely restricted so that it is challenging to travel outside your home. You will probably need a wheelchair (or similar) and/or to travel by a vehicle (eg car) if going outside.

  • Level 4-5: In between levels 4 and 5.

  • Level 5: Essentially bedbound. You will need help with most activities. At the more severe end of this level, it could include difficulty eating and/or the need to be artificially fed, environmental adaptations to accommodate hypersensitivity to sound, light and/or touch, or support for severe cognitive impairments.

23. Is there anything you would like to tell us about the ME DIsability Scale?

Section 3c: ME Work Status Scale.

24. What is your current work/study situation? NOTE This refers to both paid and unpaid work.
  • I am not seeking employment (e.g. retired, homemaker)

  • I am working/ studying without any accommodations for my ME/CFS.

  • I am working/studying with accommodations (e.g. extra equipment; flexible hours; ‘light duties’; extra time)

  • I am working but adapted or changed job to reduce demands (e.g. self-employed, part time, less demanding role)

  • I am working but have concerns about keeping my job, or my ability to continue in the job (job instability)

  • I do flexible, unpaid work (e.g. volunteering/ informal education)

  • I am currently on sick leave (or other type of leave) and would like to return to work /study

  • I am currently not in work (paid or unpaid) but would like to return to work / study

  • I am unable to work/study because of ME/CFS (including early retirement on health grounds)


25. Is there anything you would like to tell us about the ME Work Status Scale?

End of questions.
 
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Nightsong said:
Just curious - has anyone ever asked MEA to explain the rationale and the evidence base for "goal-setting" in ME/CFS, and ask them what treatment, precisely, is being referred to here?

I would love to see their answers to those questions. It would be most illuminating.
Click to expand...

We did ask Sarah Tyson, on a thread here. She was dismissive of all queries and ended up being openly abusive about people with ME/CFS in general. I raised this with Charles Shepherd but he defended her, which, in view of what she wrote, was quite extraordinary.

We got no straight answers then but the straight answers are there now. This is a device to provide evidence of benefit of rehab therapies, which of course it will not do but the NHS thinks it can judge treatment success by audit.
 
As with the previous questionnaires in this project, I had all sorts of difficulties filling this in, as many of the questions, my answer would be 'how long is a piece of string'. I just took a guess at what they might be intending to find out. The only ones that seemed sensible to me were the simple lists in the SF36 questionnaire, the severity levels where there was a simple option to choose one. Everything else was too ambiguous so I could have justified any of the answers, or in the case of the PEM one, still seemed to confuse PEM and fatigability.

I thought of writing to Sarah to spell out my concerns, but to be honest I think the whole project is misguided as its purpose is to prop up the BACME clinics and give them data they can use to pretend they are being useful. I don't want any part in that. I only did the questionnaire so I could copy the questions here so others could make up their own minds without having to do it if you don't want to.
 
If anyone wants to explore further the whole project output so far, the MEA has worked with the app company ELAROS to produce an MEA app which consists of links to assorted MEA booklets, and the Tyson PROMs which you can fill in on the app and it keeps a record of your answers for your own use.
It's called Autonom-e and is available free in app stores. If you want it to calculate your 'scores' on the Proms, you have to pay a monthly or annual fee. Don't waste your money.
 
Jonathan Edwards said:
We did ask Sarah Tyson, on a thread here. She was dismissive of all queries and ended up being openly abusive about people with ME/CFS in general. I raised this with Charles Shepherd but he defended her, which, in view of what she wrote, was quite extraordinary.

We got no straight answers then but the straight answers are there now. This is a device to provide evidence of benefit of rehab therapies, which of course it will not do but the NHS thinks it can judge treatment success by audit.
Click to expand...
I know that, and you know that, but I would still love to see the trustees of the MEA try to explain why they're funding research by someone who believes that pwME need therapists to help them set goals, what the evidence base for goal-setting in ME/CFS is, and which "treatments", precisely, Tyson is referring to.

Like I said, it would be most illuminating. I'm sure many of their ordinary members would have questions.

Another good question would be: who are the "clinicians' advisory groups"? I think I know the answer to that one, but, again, it would be good to have it on the record.

"Physician-led services" is a red herring. MEA have long said they're in favour of that. Some of the psychobehavioural clinics have a physician who is either responsible for diagnosis or nominally in charge. The real problem is the psychobehavioural / rehabilitationist model of care. If you demand "physician-led services" without fundamental changes to that then what will happen is the existing psychobehavioural clinics will find a token physician to head them on paper; it will make no difference to the care that patients actually receive.
 
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