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

I have been told by someone who doesn't want to identify themself publicly that a few days after submitting the survey they were sent an email by Sarah Tyson with the link to do the follow up survey. Then they received another email saying to ignore it, as it was sent in error.

I hope this didn't happen to lots of people, and they didn't waste their energy doing the whole long survey again unnecessarily.

 

I’m sorry you feel powerless @Lou B Lou

I certainly think there are issues with this project and MEA hasn’t handled it well. They need to do better I think they have done a lot of positive stuff in the past and they deserve credit for that but certainly the leadership from the trustees needs addressing as it doesn’t seem equipped to take on board different points of view.

 

And shove them down our throats.

'Twas always thus.

 

Has anyone had their email inviting them to have a second go at the activity quesionnaire that we did the first version of 2 weeks ago?

I've been looking for the first time at the patient information that was linked from the first version and wasn't, at the time I did the questionnaire, available.

 

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:

In the meantime, I propose to copy sections of the Patient information sheet here and comment on them here:

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.

 

Since there is no questionnaire we've seen so far that distinguishes whether people with LC experience PEM, as some do and some don't, this seems to mean they are muddling together pwME and pwLC who may have completely different conditions. Does this matter? I don't know, but it does add to the importance of including a way of identifying and tracking PEM as part of pacing advice, not burying it in a generalised 'symptoms after exertion' as Sarah Tyson seems to intend to do.

PASS and the activity quesionnaire are so flawed in their current form that they will be more likely just to pick up a mix of random fluctuations in the pwME's condition, random guesses about what the questions mean and which of a set of ambiguous answers to pick and not being able to summarise fluctuations over a month into a single selected option for each question.

 

I beg to differ. there are real risks that partipants will feel inadequate because they can't figure out which option applies, that they will be dismayed at the lack of understanding of PEM, that they will be horrified by the inappropriate and ambiguous options offered and so on.

As it turned out, there was also the completely unexpected risk that the researchers would turn on and insult forum members.

There is also the major risk that these questionnaires will be misused to prop up and perpetuate a failed model of therapist led rehabilitiation clinics practicing pacing up, etc etc.

 

I think 2 weeks after I filled it in. Not sure now you ask.