Incredible response. thank you all. I am new to this so am trying to be proactive and learn a bit more.
I agree about the lack of responses and the seemingly odd online EDSS score. I believe that it could be explained better that it is likely to differ. For research purposes – as long as it differs consistently, that is fine. But they don’t say that.
Overall, it seems that some of the communication with the end-users – us – can be improved.
it is an altruistic ask so people need to be comfortable and things need IMHO need to be made more explicit.
Keep replying, it is all good and all appreciated. Thanks again to everyone so far.