Discussion in 'General ME/CFS News' started by melihtas, Jul 29, 2014.
Sounds really good.
I'm not so sure about this though:
I have personally used two apps in the past that have let me monitor both symptoms and activity levels to see if I can pick out a pattern. Perhaps the app is quite different to those I have used, but I certainly wouldn't say it was 'the first of its kind'.
This was mentioned at the Invest in ME Conference (in a session which I haven't yet got round to writing up in an article). It's iPhone only I believe, which is a shame as I'd be really interested in checking it out but I don't have access to an iPhone at the moment. I presume it's on iPad as well though, which means I'll get a chance to look at it soon.
It's the first targeted at ME/CFS patients, as far as I'm aware, so that's probably what they mean. I'd be most interested to hear about how it differs from other such apps and what it offers that is especially relevant to ME/CFS patients, so if you've used some others, it'd be great if you could check it out and report back.
I don't have an iphone either. Here is the screenshots from itunes.
That is a great idea! Any such app that would work on kindle?
am in the same situation Mark (android phone) and hell will freeze over before I put iTunes onto a PC....
They say it will be available as an android app soon, but haven't been specific about a date as far as I can see.
It looks reasonable in theory, but one obvious question springs to mind... How can I compare myself to similar patients if we all have our own definition of what 40% means, 100% on that scale is clear, 0% is also clear, everything else seems too vague for effective comparison to me.
What does everybody else think?
I can't find the app....?
I think this is it, on iTunes:
Maybe it's something to do with me but there's only a blank screen when I follow the link, and if I search the App Store for clinihelp it doesn't find any results...
Perhaps it's because I'm living in NZ?!
Maybe. I'm not sure if it's officially launched yet:
I have problems with questionnaires, or in this case a record-keeping app, that asks me to scale my symptoms. I really have no sense of scale. My parents taught me that if I'm not dead I'm well enough to go to school or work, so I never learned to judge slightly ill from moderately ill. I've also been sick so long I don't remember what 100% feels like. It's been brought home to me many times that what I think of as "pretty good" is what a healthy person considers "pretty damned awful". To me, these percentage scales are closer to random guessing than anything else. Even trying my hardest I'll probably rank the same condition differently different weeks. Subjective measures are close to useless to me.
I certainly can't usually tell if I'm better this week than last week. The changes are usually so slow. I know I'm better than 6 months ago, and a year ago, but last week? Yes, if I PEM myself and crash then I can tell I'm worse than last week, but that's about it. For me it's more like I'm functioning or I'm not functioning. Levels of functioning (or not) are much harder for me to judge.
Give me something I can measure -- how many hours I slept, how far I walked, HR, BP, and so on. That's when I'll feel like we're getting any genuine measure of my condition.
that's kinda what I meant. I want to see each point clearly defined.... say each 10% to guide the responses....
have you seen this thread @SOC http://forums.phoenixrising.me/index.php?threads/collecting-data-from-users.31376/page-3
It is not the first targeted specifically at CFS/ME patients. There is ActiveME (an NHS app) and also ME/CFS diary pro (I do not recommend this app if you are using iPhone as the writing is TINY, though I imagine it is okay on iPad).
So I am using the app now. There are some issues. One such issue is the introduction survey assumes you live in Australia, so it asks for a postcode using all number that I couldn't fill out. It also asks if you got ill in Australia or abroad.
Another issue is that the introductory survey asks how severe my ME was at onset and gives me a rating from 1 to 10. It doesn't say whether 1 is severe or 10 is severe. Also, as SOC points out, it gives no guides to other measures of severity, instead just offering a rating scale.
The way it differs from the apps mentioned above is that those apps ask you to fill out an hourly thing of how much energy you have been using. The idea is to see if you are driving a boom and bust cycle. I couldn't really use them. It takes a lot of commitment to fill them out all the time, though I imagine they might produce some halfway useable data if kept consistently as the data can be put into an email format to look at on your computer.
This app just tries to get a snapshot of your illness each week and I guess you can chart it over time. The problem with this is that your view of what percentage you are might change as your baseline does. I remember when I got ill my CFS/ME service asked me to rate how tired I got with 0% being essentially dead and 100% being hugely energetic. I put 20% because I had never experienced fatigue like it, but I was still only mild/moderate at the time. Now I would put that rating at maybe 70%. How do I know I have my own consistent rating scale?
Also the tolerances are too small. When you're dealing with severe CFS/ME you want to be able to play about with +/-5%. This only gives you 10%. I do not typically have such large swings in my energy. If I do then I am not pacing properly, and I have gotten very good at pacing.
It does ask some questions such as average hours slept or what symptoms you have experienced and so on that might be more useful. The real test will be to use it regularly for a period of say 3 to 6 months and then to look back and see if it outlines any changes in functioning that you hadn't noticed. I already keep a diary that I fill out on the first of each month though for this specific purpose. Change can be so slow its sometimes useful to be able to look back so that you know you have gone forward. Perhaps this is more scientifically rigorous than my diary because it asks the same questions each time. If I can keep it up (and remember) I will report back in a few months and let you guys know if I have found its information useful.
Plus its also asking for my height in the weekly survey. I am not planning on changing height every week!
The app seems like it could be good, but like so often with these things it has a lot of peculiarities and oddities that need to be ironed out for it to really maximise its worth.
Looks like too much effort for me. I haven't even balanced my bank account in three months.
So what would happen if I printed out a report and sent it to the doctor? Nothing...
Anonymised data from all the installed apps is automatically sent to the uni - They're using the aggregated data for research.
What I meant was, what would my doctor do with it? I'm not really being treated, so more data would change nothing.
I don't have a smartphone anyway, so all those Magical Apps are not available anyway. I know I'm just a curmudgeon. But you have to understand, I wrote software for a living, starting in the 1970s, and ending with this illness.
What folks are describing sounds, frankly, appalling. They have obviously never bothered to have any sick people test it first. It's probably a prototype, meant only for demonstration purposes, then some big shot saw it, and said, "Send it out now!". I've seen this so many times, throughout my career. The recent Magic Health Insurance Exchange debacle was completely normal, predictable, and predicted.
You can also try a Google Site Search
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