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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...

I think it's a big difference. The things listed are just indicators of overall differences in capacity. Of course it's a continuum, but my life is very different in level 4 than when I was in level 3.

You're right. Though I guess they might say we can email to ask to see it... That about sums it up. They could have designed this particular questionnaire with sections to be answered by people with different severity levels. They say that will be a next step. Why? They ask at the beginning...

Given that the 2 lead researchers are physios, perhaps the Chartered Society of Physiotherapy No idea really. I hope someone reading this who can explain all the things participants are asked to agree to will explain why they are needed.

It's not you, it's the technology. The web address needs to include www for it to recognise that you are logged in. I'll amend it. https://www.s4me.info/threads/me-chronic-illness-podcast-post-exertional-mayonnaise.33695/

I don't think that's a serious problem. It might be for some social media surveys perhaps, but I can't imagine the thousand or so participants they have had for previous questionnaires including more than one or two rogue participants.

A quick note in case Sarah Tyson is reading this: I assume this is an error: 79. Take part in gentle recreational exercise e.g. walking, yoga, dancing, golf, cycling, swimming 81. Take part in more demanding recreational exercise e.g. dancing, golf, cycling, swimming

I don't think we have evidence to support that. For example, most people who get ME like symptoms following glandular fever recover within a year, from my memory of Leonard Jason's research. Most of the early recoverers probably never get an ME diagnosis, even if they fit ME/CFS diagnostic criteria.

I tried clicking on the link just now and got the message that the link had expired. I confess I didn't bother to try the link before I did the questionnaire. I assumed I'd already seen it for previous questionnaires.

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...