Signed up, out of curiosity as much as anything, and have just completed the first part of the survey (they're sent out in monthly installments).
There were a few technical hitches:
When you tick 'other (please describe)' there isn't a field where to do the describing in.
I selected the non-gamified version and then received a couple of different-looking emails both stating rather confusingly "Some survey-takers received a link with broken code early on in the survey-taking process. If you received this email more than once, this email is the one that contains the corrected URL."
When you click on the back arrow once you're a few pages in it takes you right back to the very first page, not to the one just before the one you're on.
Also be aware that once you select an answer option (of the circle type) you can no longer change your mind should you wish to skip the question without answering after all. You can select a different option but you can no longer select no option, i.e. deselect all.
Regarding the survey questions:
They use some of the standard questionnaires about health and functioning, with all the associated problems of interpretation we've discussed on the forum elsewhere, like asking about the last 4 weeks compared to usual (what's usual?), or how you rate your health in general without specifying if that means apart from ME (pretty good) or with ME (awful), or function scales that mix up different aspects like how much daily assistance you need (a lot) and what level of medical care you need (not much).
They ask about a wide range of conditions diagnosed by a medical professional. What qualifies as a medical professional isn't specified.
There's no room to add comments about diagnoses received or not received. Apart from screening healthy controls for their actual level of healthy, it's not clear what the answers will be used for. This makes it difficult to answer meaningfully. For example:
I've been diagnosed with MS, and later was undiagnosed again. Is that a yes or a no?
I've been diagnosed with IBS and still am even though I have never ever actually met any diagnostic criteria for IBS. So strictly speaking a yes, but a yes would be misleading.
And the opposite, I very clearly meet diagnostic criteria for POT(S) but have never been diagnosed with it. So technically speaking a no, but a no would be misleading.
It may be that the intention is to look at how reported symptoms match reported diagnoses to get a handle on rates of misdiagnosis, which would make some sense, but that's not clear from this first survey.
Other questions are also too open to interpretation, e.g. they ask about being worse after a lumbar puncture. Which I was - I had nerve pain down my leg for a couple of years because of the needle hitting the wrong spot - but that's probably not the sort of worse they mean.
All in all underwhelming so far. Hope it gets better.
I would have preferred to get all the questions at once to get an overview. That often helps me answer questions more meaningfully. I know they're splitting the survey so as not to overload patients but I don't see what difference that makes since you have a year to answer everything and can save as you go and come back to it.
