Suggestion Box



  • I can’t seem to tell the difference between the sections “Managing your ME/CFS” and “Living with ME/CFS” ... to me, managing it is living with it and vice versa. There must be a difference, but I’m struggling to identify it. Maybe it would be a good idea to think about changing the name of these sections so that they’re easier to differentiate? I’m not sure what to, just uh, pointing out that I’m confused.


  • Global Moderator

    Many thanks for your feedback @RatsAreFluffy - that's a very good point and we'll give it some thought 🙂



  • @Daffy_Dave yes I nearly brought this up myself - never sure which section to put stuff in. Is the "managing" section more for advice and tips while the "living with cfs" section is for general discussion, sympathy etc?



  • Great points @RatsAreFluffy and @river

    The original idea was to have 'medical stuff' and 'general life with ME/CFS stuff' but then someone didn't want 'medical' so it got toned down to 'management' and now we have 'managing your' and 'living with' which, as a number of people are now pointing out, is basically the same exact thing...!

    So, I think the questions would be -

    1. Do we want a specific place for 'medical chat'? and if we do then what should that be called?

    2. Do we want a separate place for 'just generally living and sort of talking ME/CFS'? So this is distinct from 'the lounge' where we're not really talking about ME/CFS at all?



  • @EmergeAustralia I think it would be good to differentiate between more medical-specific discussion (e.g. medications, therapies etc) vs living with ME/CFS. I'm not sure what the medical side could be termed, but hopefully a few topic titles would make it clear what the section relates to.

    However, there's going to be overlap. I think pacing belongs in the 'living with ME/CFS' because I consider it a management strategy, but others might think it should fit more under medical. I think living with ME/CFS will end up being the broadest section, because it's kind of the 'catch-all' section. And I think it should definitely be separate to 'the lounge'.



  • @EmergeAustralia I've been trying to think up an alternative name to "medical" and all I can come up with is "health" which feels way to broad in this context. Hmm 🤔



  • What about a title of 'Diagnosis, symptoms, pharmaceuticals and management strategies' - with a few starter topics underneath? When I think of 'medical stuff', these are probably the key things that spring to mind. I thought about including the word 'treatments', but since for Centrelink and NDIS purposes, we generally write 'there are no treatments', I didn't think it's suitable. And contrary to my previous comment, pacing could fit under this topic, rather than living with ME/CFS.



  • Suggestion: can the forum be made to allow uploading images without resizing them first? It would be great if it could do the compression/resizing automatically. I can't upload photos from my phone because they're too big, I have to send them to the cloud then resize on my computer before I can upload them. That's bad for my brain fog 😢


  • Global Moderator

    Thanks for the feedback @river - I'll pop it on the list and see what we can come up with 🙂


  • Global Moderator

    Hi @river 🙂 I've had a look at the file settings and increased the max size limits a bit (hopefully files up to about 3.8MB will load, and be automatically resized for people viewing them (but also be able to be clicked on to be viewed full size). How large are the files your phone makes? It's possible to increase the limits beyond 3.8MB, but that'll take a bit more forum-fu to arrange.



  • @Daffy_Dave my phone photos are about 4.8mb I think. These damn high definition cameras! 🤦🏻



  • Hmm, it seems to vary actually. I have some that are 6mb and others under 3mb. I just tried to upload one that's 3.3mb but it wouldn't let me.


  • Global Moderator

    @river Thanks, that's very useful info 🙂 I'm afraid I think I've pushed things about as far as 'tinkering with the settings' will let us, but there is room to look into it further - it'll just take a bit more time.

    One more question, if that's alright - do you know what file types you're trying to upload (eg, .jpg, .png, .tiff, etc.,)?

    I'm a little perplexed as to why it won't let you upload a 3.3mb image - I tested with a 3.8MB image and it allowed that - so will do some more thinking on that front. In the interim, and as spoons allow, there may be apps available that can resize images on your phone, getting around having to move it to a computer to resize it - but we haven't given up, and hope to be able to make the forum a bit more 'phone-image-size-friendly' 🙂 There's just bit involved in that than I'd hoped.



  • @Daffy_Dave thank you for your efforts! They are all jpgs.



  • Testing again

    PXL_20201225_050303819.jpg



  • This is not so much a thought/suggestion as a question: Is it OK to create a post seeking suggestions via private messaging of medical practitioners on the east coast (especially Sydney) who have been helpful with diagnosing and treating ME, in particular for adolescents? I understand people cannot be named, but can these recommendations be sent privately?



  • @Elizabeth-S absolutely! We're very happy for people to do this. It's just the public naming that gets awkward. Thanks for checking!



  • @EmergeAustralia Thanks so much!


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