Australian You+ME Registry Opens

  • Australian You+ME Registry Opens 🎉
    Emerge Australia is delighted to announce that the first Australian ME/CFS patient registry is now officially open! We have partnered with Solve M.E. in this landmark undertaking, which will help create the largest possible dataset and harness the power of big data to understand ME/CFS.

    The You+ME Registry, an initiative of Solve M.E., is an online clinical study of individuals committed to identifying a cure for ME/CFS and other post-viral illnesses. Created by and for the people who use it, the Registry consists of people with ME/CFS and control volunteers – collectively providing the research community with critical insight into the lived experience and genetics of ME/CFS and post-viral illnesses.

    ✨What Does it Mean? ✨
    Australian ME/CFS patients and healthy control volunteers can now sign up to participate in the Australian registry by completing an online survey on medical history, co-occurring conditions, medications and symptoms.
    Participants will then receive a link to the You+ME app which works as a symptom tracker, recording ongoing symptoms and activity and how they affect everyday life – in contrast to the snapshot that might be reported to a healthcare team during an office visit. The initiative is the first, critical step to the launch of the Mason Foundation-funded ME/CFS Biobank in Australia. 🎉🎊

    👀 Read the full story here:

  • Community Moderator

    This is sensational news 🙂 Also, for MEEPs worried about online surveys, it's set up** in a way that it can be saved and gone back to at pretty much any point - so as soon as one gets tired, they can stop and go back (so there's no need to finish a whole section or anything like that), and it looks like this can be done as many times as necessary - it's a very ME/CFS-friendly set-up 🙂

    ** I've signed up, so am working my way through the surveys myself - am just saying this as I'm well aware of the dangers of 'long' (they don't need to be too long for us) online surveys being impractical.

  • @Daffy_Dave worth pointing out there is a deadline to complete at least the initial sign up though. I'm part way through it atm and really hope I will have the energy to get it done on time 😬🤞🏻

  • Community Moderator

    @river Yikes, sorry, I'd forgotten that bit - how long have we got? (I'm also part-way through)

    Edit: Sorry - it's actually in the email - 30 days by the look of it. Hopefully long enough, although I'd prefer a couple of months myself. Good luck at your end 🙂

  • Community Moderator

    Also - as best I could tell, there's no "save" option between the end of the last survey (MFI) and end of the list of treatments/conditions - I found this quite hard-going. I think it's possible to adjust list of treatments and conditions after finishing all the surveys (and it may have said this and I just missed it), but would recommend unless you've got more endurance than me not doing the MFI test until I've confirmed this (I've just shot off an email to their "more information" email address), as to do it right (or even, like me, to do it wrong 😞 ) it looks like a bit of a long slog.

  • @Daffy_Dave

    Today's health rising has Cort talking up the you and me registry in Australia. He is emphatic about the benefits

  • Community Moderator

    @iris Oh aye, it looks very good - I've gone through all of it myself (although I still have a few treatment options to put in). I'm just a bit concerned about the lack of a save option between the MFI test and the end. It's far from clear in the survey that it's alright to leave everything until afterwards (although it is possible), and I've emailed them to check. It's very well set up, but not surprisingly for something so complex, there are a few bugs/wobbles that could do with ironing out (and, also not surprisingly, the stuff at the end of the process usually isn't as thoroughly tested as the stuff at the start).

    For people doing it, it is possible after the MFI survey to click through to the end and then fill out treatments/conditions at your own time - I just don't want to recommend this if it's not what the people running the survey want. Without that, there's potentially a large block (over an hour for me, although I'm not the fastest person in the world) in one hit to be done at once, which is enough to induce mild PEM at my level of functioning, and I'm only about half-way down most ME/CFS scales (ie, there are plenty of people who are more impaired than I am, that would likely find it far more difficult).

    Up until that stage, the save and reload options are very good, so most of it can be done one question at a time with no worries.

  • Community Moderator

    I haven't heard back from the You & ME people, but as best I can tell, it's possible to skip through the last section if it's too much in one go, and finish the rest in your own time from the dashboard. I figure they'd have gotten back to me more quickly if they wanted people to do different, although this is a bit of a guess - but I don't want to discourage people from going through the survey.

    In case it helps (it may well be fairly obvious, but it confused me briefly, noting I'm very easy to confuse!) that the website for people already signed up to the registry is different from the 'main' registry website with the information about the registry - the one for people finishing surveys is:

  • How is everyone going with this? I admire the amount of detail they are collecting but hoooo boy it's exhausting on this end! Especially the treatment section. Like you @Daffy_Dave I didn't realize you could fill that in later. It also isn't very flexible in terms of specifying your medication schedules and doses, so I've e-mailed them about that. I have quite a few meds that I have to take different amounts of at different times of day, or that are only "as needed" and I wasn't sure how to enter that.

  • Community Moderator

    @river Great work at sending them feedback 🙂 I managed to get through it, but I did most of it in my week off work (ie, now that I'm back at work, I'm taking my time finishing off the treatments in dribs and drabs).

    I got a very nice email from one of the researchers involved today thanking me for the feedback I sent in, so they are reading the emails (and they do seem very responsive/open to ideas). Totally agree with it being a big job that needs pacing out. Also agree with the medications that's not "always on" being a tricky to enter (and have mentioned that to them as well, although I hadn't got down to my 'discretionary' stuff yet, - but I cycle through antihistamine types, two months on, two months off, and there's no way to add things like that either.

  • They told me to put in the total amount of the medication I take in a day (e.g. 75mg 1xday if I take 50mg morning and 25mg afternoon). Unfortunately I discovered that once you've added a medication you can't change the dosage info. Makes sense I guess, as they need to have consistent data to work with, but also very stressful because you can't fix mistakes! So I've asked them what to do about this, too...

  • 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?

Log in to reply