Graphic for the Research 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 end of 2024. Phase II will look at effective ways of gathering patient data and allowing clinicians to access it. Phase III will launch the toolkit to patients and NHS ME/CFS specialist services in 2025.

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

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.

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.

Why won’t it accept my email?

The survey tool is very pernickety about this! It will not accept the email address if there is a space before, or after the address. Removing any spaces usually fixes the problem. Or, sometimes so many people are trying to complete the survey(s) in the day or two after the project is advertised in the MEA newsletter, that the survey tool cannot cope. It can be worth trying again in a few days’ time.

What has been done to make the survey(s) easy to complete?

We have followed the British Dyslexia style guide as far as possible make the format of the surveys accessible. We have also been advised by the 25% Group (a charity for people with severe ME).  Also:

  • The questions in each section are asked in same way to reduce the cognitive demands.
  • 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 check your answers if you wish. Usually, the button is at the bottom of the screen, but sometimes it appears at the top. If the back button does not show, it may work if you try a different browser or device, or delete the cookie cache.   
  • Your answers are saved automatically so you can take as many breaks as you like, and come back to same place when you return. However, there is no ‘save’ button or confirmation of the save as it is contained in the inner workings of the survey tool. Please trust us your work has been saved.
  • If you need help from another person, or another person to complete the survey on your behalf, that is fine.
  • If you would prefer a paper copy or to complete the survey by phone/video; that is fine. Or, if there are another ‘accommodations’, that would make it possible, or easier to complete the surveys, please contact Sarah on sarah.tyson@manchester.ac.uk
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