Australian You+ME Registry Opens

  • Community Moderator

    @river Very good! Aye, I noticed this as well - great work providing feedback 🙂

  • Awesome work @river and @Daffy_Dave at getting through this and getting them feedback 🙂 I just made it to the treatments sections too. I noticed there weren't any supplements in their pre-made list so was trying to understanding if they only wanted prescription medications here? Supplements make up a large part of what I take and a few I think have done a little good so thought they should be added. Did anyone else put supplements in the treatments section too?

  • Community Moderator

    @Katt Great work, you've done the vast majority of it now 🙂 I was putting my supplements in as well (as, like you say, they're an important part of the story). I'm fairly sure you can add free text in the field if it's not in the list. I'm also fairly sure it's what they want, but head's super-hazy this morning, so potential upper threshold on 'sureness confidence' not very high for anything!

  • @Daffy_Dave great, thanks! Hazy sureness is good enough for me 🙂 I'll re-read the description again too but just wanted to check what others were doing... time to go check for the cupboard for the many supplement bottles I've hoarded and tried over the years

  • @Katt yeah I put supplements in. I'm not looking forward to back filling all the treatments I've tried in the past - the list is ENORMOUS and once you've said that a treatment is a "past treatment" I don't think you can add it as a current treatment which worries me a bit because I never know when I might want to try something again.... Maybe I should just put everything into the current treatments section, just in case...

  • @river it is strange that you can edit current treatments but not past treatments, I hadn't noticed that when I was filling it out. Most of my current treatments have "I don't know" under the question asking if they are helping anyway so probably doesn't hurt to have them as current treatments if you think you might come back to them. Otherwise could be another bit of feedback for them to look into.

  • Community Moderator

    I'm working thru the questions a little at a time for the last couple of weeks, still got a bit to go but very happy the save option makes it doable. Can't believe the question that had me stumped for far longer then I care to admit was - What is your current age? 😁 Wish it was a ME/CFS thing not that's its getting harder to keep track thing.

  • Are people logging symptoms that are not caused by ME/CFS (e. g. lifelong health issues) but might be exacerbated by PEM?

    I've had chronic shoulder pain since I was like... 5, due to congenital scoliosis, and I think it flares up when I'm in PEM but it is definitely not related to ME/CFS it's just that any inflammatory process is gonna ramp up when we're extra exhausted. I don't know whether I should log it under Muscle Pain or not. I don't get muscle pain as part of my ME/CFS symptoms and I don't want to mislead anyone.

  • @river could you just list aggravates other conditions?

  • @iris this is in the You+ME app where there is a predefined list of symptoms you can select from and you rate each symptom from 0-4 every day (or on whatever schedule you choose) so I don't think that's an option. You can add your own symptoms, but I'm trying to avoid doing that as much as possible to keep the data clean.

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