Thanks for your post Cheesus on this.
Below is some things people can consider on how well this will work for all ME people.
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.
I couldnt even give me onset of ME a rating even if I knew that 10 was severe. My onset was a classical one of sudden flu like symptoms which sent me to bed (high fever, sore throat, muscle aches and pains and lethargy). Thing is my body could fight whatever ME is at first and hence I recovered after about 5-7 days and
then was completely well till another bout of this hit me 2-3 months later.
Over time these bouts of being hit by what I know now were ME (but for 9mths doctors kept on saying "you must of got another virus") become with shorter and shorter times in between and lasting a little longer. Till I got this illness full time a year later (when it went near full time or full time, that was when the post exertional stuff came in for me, when my body stopped obviously being able to fight this illness off or stopped being able to correct whatever goes on in ME).
So my onset was bad symptoms.. it really hurt to walk due to my muscle pain/whole body pain, feeling very sick like I was going chuck (couldnt really eat), ear ache, very high fever (I used to run a 39-40 degree Celcuis fevers with these bouts so higher then normally happens in ME), bad sore throat (not quite like when I had severe EBV but almost), and swollen throat glands. On one of these early flares, weirdly around my eyes swelled up so I looked like a bullfrog so much to the point I could hardly see out from my eyes (could there be some connection to CMV for me? I do carry it and reactivation hasnt been ruled out).
But would one rate ones onset high if these bad onset symptoms of the ME flares which put me in bed went for less then a week? and then I was well for the next 2-3 mths, no residue tiredness (I didnt even have post exertional fatigue, I didnt get that till my symptoms become full time). How does one rate severe symptoms but with short term crashes? (I had a sudden severe but slow onset).
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.
umm. Applications which show bust and boom I personally think would better show just how ill I are as its the only way one sees just how ill I am. When one sees that a little amount of of doing something makes me worst and flares things. How would how Ive been be rated in a week? if Ive had to be ambulanced to hospital to be given 2 bags of saline that week (set off by trying to make myself a dinner)
but then had no symptoms the rest of the week as I didnt do hardly anything and just stayed laying or on my butt? .. and thankfully for the saline IV for being in my body for a couple of days.
Whats a worst week, the week I had to be ambulanced to hospital? or a week where I didnt do meals at all to avoid issues and then didnt get any crashing or symptoms? What rates worst?
I honestly can not see how any application can rate my health for a week if it isnt including my activity levels too.
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?
yeah. and you probably not have your own consistent rating scale, if you try to play with these for a while you probably will see you give worst ratings when you arent as emotionally strong then you may at a time when you are happy (even thou you are at same level of sickness which can be told by how or not how much you can do without causing issues).
It does ask some questions such as average hours slept or what symptoms you have experienced and so on that might be more useful.
Does it allow one to note if one too anything for sleep on individual nights? My sleep program really various and various day by day if Im having trouble sleeping. So saying one slept 9hrs one night but not adding in it was cause one took a benzo for that one night, wouldnt be much help (I used to take benzos twice a week and cycle my sleep meds and things with some working better then others).
Does one track actual sleep times too - as one may of had 8 hrs sleep but one may of not got to sleep till 3am in the morning.
[/quote] 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. [/quote]
I tend to monitor what my ME is about every 3-4 months as when Im in decline it will often be a slow one so not noticed week by week but if one compares several months with the previous several months, it makes it far easier to see if process/decline or the same has been made.
What i use to judge if Im getting worst is things like How many times has the ME put me into hospital in that period? and what are I having to do with my drugs? (have I had to increase them, were I able to stop taking some? are they the same?).
I also go by my wheelchair use which also helps me to easily see what things are doing or what is happening at my shopping trips eg 2 years ago I used to collapse at the supermarket once in every 12 grocery shoppings. Late last year just before I got the wheelchair, that had gone to once every 3 shopping trips. Now I need the wheelchair every time I go out shopping as I would probably collapse and would need an ambulance most of the time if I didnt have it.
I dont find it hard at all to judge if Im worsening, improving or stable if I compare things from 3-4 month periods. As ME is so up and down anyway, I dont think one can tell if one has an altered ME baseline in one month from the previous month, it could just be an ongoing crash one isnt quite out of yet. I think longer time periods are needed for comparision as this illness is too fluctuating.
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.
I will be interested to hear how you go.
So anyone who uses the app because they think they have CFS since they're more tired then usual will get their data included in research data. That's just what we need -- more screwed up sample sets showing no particular pattern. Or worse, a completely wrong pattern because more people with simple fatigue are using the app than people with ME/CFS -- which is quite likely. And it's all subjective, so even more ways to get a frighteningly poor data set. We have enough trouble with research using people who are self-diagnosed or diagnosed according to ridiculously broad criteria. We don't need more.
