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I don't think Jaime Seltzer reads this forum now, so if you want to get a message to her about this you probably need to contact her via MEAction or whatever means the MEPedia editorial managers use to communicate with editors.

Given that this project is supposed to be providing resources for implementing the NICE guideline, surely they should be using terms as defined by NICE in the guideline: https://www.nice.org.uk/guidance/ng206/chapter/recommendations#post-exertional-malaise NICE also defines these related...

Feel free, the draft letter is there for anyone to agree, disagree, make suggestions etc. If the committee does send another letter, I expect we will try to remove repetitions, consider any comments anyone makes on this thread, and add a section on the latest questionnaire when more of our...

As you know, the S4ME committee wrote to the MEA about our concerns about this project and received a short response from the chair of trustees saying forum posts are being read, and he agrees with some of our points and disagrees with others, but reiterating full support for the team and...

This reminds me of a parallel situation with household energy. I recently had gas and electricity smart meters fitted. This included providing a small plug in device showing constantly updated cost of energy used so far for each day. I found myself obsessing about looking at it in an unhealthy...

I think one more to come that is intended for service evaluation.

That's very interesting, Ravi. I haven’t used HRV as my Fitbit only does HR and steps. I find HR useful as an adjunct to symptom contingent pacing, for example, it gives me objective permission to stop and rest part way through a task when I might be tempted to push on. I don't have a signal...

Yes, Bobbler, I agree with all of that.

I have no idea of the motivation of therapists who might use this questionnaire. I would hope they intend to be helpful. But there is huge opportunity for misinterpretation of the data from this questionnaire. I think it would help this discussion if Sarah Tyson or Peter Gladwell were to join...

I think it should be up to the pwME to decide what information about their activity levels they want to divulge. I find questionnaires like this that are very lengthy, include lots of activities I can't do, and at the same time ask for it in a way that doesn't provide realistic information can...

It occurs to me that the clinician would learn a lot more about what a person can and can't do by asking them to list their activities on an average day and whether the following days were PEM or not. Back to the old activity diaries.

I agree. There is a world of difference between being able to shower daily, though a bit more slowly than a healthy person, and using a shower stool when hair washing and showering once a week or less with aids and assistance, with hair clippered short to make washing and drying manageable...

@sarahtyson, if you are reading this, perhaps you would share that talk publicly so we can all see what your latest thinking is on the progress of the project and how you envisage it being used in practice. As you can see, some of us here are struggling to see the purpose of the resources...

In my case it was because I didn't know about it. Edit: Also it was the day after the Unite to Fight two day marathon conference, so I had no energy left to follow this one. Also, not being on Twitter, I couldn't follow the posts there about it. Will the talks be published on YouTube?

They seem to be aimed at replacing the questionnaires much beloved of therapists in the old CBT/GET clinics. That is the Chalder Fatigue Questionnaire, SF-36 Physical Functioning and various others. We all agree those two in particular are useless for all sorts of reasons, but at least they have...

I suspect the few in the research team design the questionnaire first, then ask for suggested amendments. I can't imagine a group of pwME of varied severities thinking this wordy and lengthy document with ambiguities, and trying to cover practicallly every activity any of them could think of, is...

I think they do have some people with ME/CFS giving them feedback before they finalise and send the questionnaires out.

To facilitate discussion, I am copying a few of the questions from the questionnaire here. Each section starts with this sentence, which I've usually forgotten by the time I'm part way through the questions in that section: Each question states an activity and often specifies what sort of...

Very pretty, Tom, a proper old fashioned tea party. I hope you have a lovely time with your family.

Good point. I'm level 4 physically and probably level 2 cognitively. I've never been level 1 even when working part time. I agree there needs to be more levels for severe very severe and extremely severe. I think, apart from the questionnaire being far too long, the choice of responses...