The
Partipant information sheet pdf is dated 13th October 2023, so it's possible I read it when we did the first questionnaire. If so I've forgotten.
That first one, TIMES was a symptom list, so not too awful. We only realised how off beam the project was heading when we saw the second one, called PASS, that purported to be about PEM, but was an awful mess of ambiguity about symptoms after exertion. It was as a result of PASS, and Sarah Tyson's negative reaction to our comments on it, that we became seriously concerned about the project and wrote to the MEA trustees and received a dismissive reponse from the chair of Trustees.
I am intending to write up some comments on the third questionnaire when I find the energy after I've seen the second invitation to complete it which should be any day now.
From the instructions on the recent questionnaire:
If you would like more information about the toolkit project please read our patient information sheet
here.
In the meantime, I propose to copy sections of the Patient information sheet here and comment on them here:
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.
What is the purpose of the research?
Our aim is to co-produce a series of patient reported outcome measures (PROMs) with people with ME/CFS (PwME/CFS) and clinicians in ME/CFS specialist services. This will help PwME/CFS and services identify, understand and quantify people’s symptoms and disabilities; support goal setting and treatment planning, and monitor changes.
Working with the PwME/CFS’s and clinicians’ advisory groups we have produced draft versions of the PROMs, which have a questionnaire format. They measure people’s symptoms; activity/ disability levels; post-exertional malaise; mood; clinical needs, and satisfaction 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/CFS and the forms are easy to complete, and to use in clinical practice (ie it fits in with other clinical processes and systems). We now need a large number of PwME/CFS to fill in the questionnaires (online) so we can complete a statistical analysis. This is called Rasch analysis and will enable us to remove any overlap between questions, remove any questions that don’t produce good quality information, and/or revise the wording of any questions which are unclear.
We will also explore how we can produce sub-scales so PwME/CFS do not have complete all of the questionnaires, all of the time. For example, we may be able to pull out a subset of questions which are most relevant for people with severe ME. Alternatively, there may be sub-scales for specific problems such as pain, sleep problems or autonomic dysfunction.
This seems to confirm that it's intended to quantify and measure and to use those measures to 'support goal setting, and treatment planning and to monitor changes'.
If goal setting was for the clinician to have the goals of regular monitoring at the frequency the pwME wants/needs, and goals of providing accessible and suitable medical and personal care, aids, resources, support and help with employers, benefits agencies, schools, etc, fine, but if it's about the pwME being expected to make goals that involve forward planning of sustained, timetabled, or increasing activity, then it's not.
