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

AMRC’s principles of expert review
AMRC members must use a rigorous expert review process to inform which research to fund.
This is listed under headings:
Proportionality, Independence, Diversity, Rotation, Impartiality, Transparency:

There is also a section on the website about bullying and harassment. I'm not sure whether it applies to a researcher being funded insulting patients and others providing feedback as part of the research.
https://www.amrc.org.uk/Listing/Cat...ng-and-harassment-in-the-research-environment

 

The response is posted on the letters thread.
No apology or any other communication from Sarah Tyson.

 

Which patients are not allowed to attend. I asked. See the BACME thread.

 

And they can't even get their information right. The TIMES questionnaire on symptoms was the first one they had people filling in.
This new one is the third one and is about activity levels and adaptations.

 

This is the link to the survey:
https://www.qualtrics.manchester.ac.uk/jfe/form/SV_4GBQxvdf3mgdW1E

The survey introduction says:
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 includes people whose ME/CFS was triggered by a covid infection (i.e. long covid).

This is the 3rd 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 help people with ME/CFS and services 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. We would like you to complete the questionnaire so we can check that the questions make sense and produce good quality information. We will also explore sub-scales for people with very/severe ME/CFS so they do not have complete the whole questionnaires, all of the time.

There are 97 questions in total. We realise this is a lot, but we want to capture the full range of people with ME/CFS’s abilities. We anticipate that the final version will be shorter and have separate scales for people who are mild, moderately and severely affected.

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 of 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.

It takes 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 and wherever 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.

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 if you have any other questions, please contact Sarah on sarah.tyson@manchester.ac.uk.

A couple of weeks after you have completed the survey, we will send you a link to repeat it. This is so we can test how the answers change over time and how well the MEAQ picks up any changes.

 

This seems unreasonable. Why are they asking for regulatory authorities to be allowed to look at my data? What regulatory authorities?

 

I decided to tick the boxes so I could see the survey, and completed it.

As with the last survey, I have significant criticisms.

I wrote my immediate reactions in the box at the end, but will go back over it and consider whether to make a more detailed comment. Not that they will take any notice, if past experience is anything to go by. I've kept a copy of the questions for my own use to help me think about what I want to say.

I'll say no more for now, apart from it being far too long.

 

It is ridiculously long. And I kept forgetting the instruction at the beginning of each section so had to go back and redo the first section. I was helped by the last section being all questions about going out, and since I don't go out it was easier, once I'd settled on which of 3 ambiguous options to choose for all of them.