Survey: online input sought for ME app design (Center for Solutions for ME/CFS at Columbia Uni)

https://cumc.co1.qualtrics.com/jfe/form/SV_0MnOSIauQP1MA05

The survey is just ticking boxes from 'not important' to 'very important' which makes some questions awkward to answer, and no text field for additional comments. But worth doing the survey if you know what you would want, or not want, from an ME app.

 

https://twitter.com/user/status/1096346432557248512

 

Afraid I can't get the survey to load.

 

Do you have a Javascript blocker, or anything similar to that?

 

It was Ghostery wot stopped it - just in case anyone else has the same problem. Thanks @Andy.

 

I'm not sure how useful that would be, frankly. The data would be unreliable for many reasons and just keeping track is a burden in itself for a patient population that struggles with basic necessities.

It aims to fill an important gap caused by low funding, replacing a process that is expensive precisely because of the need for accuracy and verification, with an unstructured process. Reporting on symptoms is problematic when there are fundamental vocabulary issues that have never been resolved, forcing the use of inadequate terms because the more accurate ones are rejected (e.g. transmogrifying the "sickness" of flu-like symptoms into some undefined fatigue even though "sick" is precisely the word people use when they have the flu).

Reading the summary doesn't really explain the fundamental question of what information this would give us that we don't already have. I'll fill it and see where it leads but it just seems like trying to fix a $20M problem with a $500 solution. The need is there but I'm not sure this solves it.

Also wasn't precise.ly given a NIH grant to do sort of the same? No details yet but I seem to remember the initial details included a symptom tracker like this.

 

Indeed.

They also need to recognise that resting is a different thing than 'relaxing'. It asks if you'd find it helpful to record time you spend relaxing but not asleep "eg watching tv". This makes me think it's written by healthy people with little to no understanding of the realities of life with ME/CFS..... for healthy people there is either being active, being asleep or 'relaxing - ie tv, music -"chillin". They arent aware of the reality of having to lie still for hours on end in silent darkness, while not being asleep.

Healthy person -"oh I'd fall asleep if i laid still in the dark because I'm so tired" .... yeah thats because you're not in too much pain, too much nausea, too much vertigo, too much weird proprioceptory activity (eg your senses telling you you are hanging upside down or legs bent underneath you when you know for a fact you are laying flat), too much pins & needles & muscles twitching & spasming, too much shivering & then sweating & then back to shivering again, too feeling so ill that you are spending everything you have within you on enduring the next 10 mins... You dont sleep through that.

edited - to remove an unnecessary snarky comment born of grief & frustration

 

If it's made well, I think it could be very useful - especially for people undergoing diagnosis and new to the illness. Making some sense of your own patterns and how your body now responds. And beeing able to show this to your doctor and/or others caregivers. It wasn't until I did something similar manually on paper, that my doctor really got how impaired I was. Even if it's not totally perfect, my experience is that having 'something on paper' makes the impacts of the illness more real and easier for others to both grasp and relate to.

There will be years until actual useful treatments. While we wait, if some tools can be developed with little effort, that can help patients both understand their own illness and help in communication, I'm all for that. If it somehow can inform research, bonus point.

There are so much research beeing done now, by people that don't really understand the illness. New people that might not have much experience with patients at all, just read the 'standard descriptions' all papers have, that don't really have indepht understanding of how ME actually appairs in patients lifes. That makes them often ask the wrong, or slightly wrong research questions. I'm not aware any research that describes and have actual data on how the illness fluctuats, how symptoms change over time etc?

If the app, as I think was suggested, is combined with information from 'fitbit/activity trackers, there could by useful data coming out from this.

 

If the idea of such an app is for it to be regularly asking me to rate my symptoms against some scale I wouldn't use it. The thought processes involved in that, (should I tick more than or very much more than, etc) for me, seem to be exactly those that drain my energy very fast. I would imagine that using it would have to be at the expense of some other activity.

 

Just completed the survey but found it very difficult to answer these questions in a meaningful way. For example, how important a feature is would depend on what purpose an individual uses the app for. Also, there is likely to be a discrepancy between how often records should be entered to be create useful data and how often records will be entered due to time/energy constraints.

I can see three main purposes of the app, the first two are mentioned in the survey intro.

1/ Create records to take to doctor.

Only of any use if you actually have a doctor who would look at it and know what to do with it -not exactly a given. Probably the most useful application here would be to zero in on specific symptoms like pain or sleep and measure response to treatment. Though you wouldn't need an ME-specific app for that.​

2/ Create a large data set for scientists.

This has the potential to be very useful... in theory... but there are a lot of big buts. Just some examples:
It would require very careful definitions/descriptions of symptoms so everybody understands them at least roughly in the same way. Somehow overlapping co-morbid symptoms would need to be accounted for separately. Data entry would need to be frequent and consistent (and lack of data entry must not be interpreted as lack of symptoms) and all symptoms would need to be recorded. This would lead to selection bias excluding the more severe without the necessary energy, and - tongue in cheek warning - conceivably would select for perfectionist type A personalities. Probably the most feasible application here would be in conjunction with a patient registry* where scientists approach patients to record a specific range of symptoms for a limited time for a particular study. Data security and patient control over what studies data is being used for is important.​

3/ For personal tracking of symptoms and triggers (this doesn't appear to be the purpose of this particular app).

Many patients already do this in one way or another. The challenge here would be to create an improved system that's very flexible on the one hand and very simple on the other. I've tried the odd symptom tracker app in the past but never found any satisfactory ones allowing me to easily track what I wanted to track in the way I wanted to track it. For example, taking a question from the survey, the total amount of time spent per day on a certain type of activity is mildly interesting but not very informative: I can spend half an hour/day total standing or walking, no problem, but only if I break that down into much shorter periods spaced throughout the day, whereas half an hour all at once is a guarantee for PEM. All the apps I've tried were either easy to use but perfectly useless, or they required a lot of work inputting data for still only minor useful output, so not worth the effort (disclosure: I'm not very patient with any form of record keeping).​

All in all this whole app idea sounds good in theory but strikes me as difficult to make work in a meaningful way in reality. But if there are any app developers out there looking for a big - no: huge - challenge, here's your chance. In case any such person is reading this, good luck with combining the following features:

• Ability to track all known ME symptoms (frequency, intensity, variation throughout day), with the option of selecting some individual symptoms only.
• Facility to enter additional symptoms not traditionally associated with ME (to see if they are linked).
• Ability to mark and analyse separately any symptoms that may, or may not be, due to comorbidities.
• Ability to track common PEM triggers and link them to symptoms.
• Facility to enter and analyse additional triggers a patient suspects of triggering symptoms.
• Ability to analyse cumulative triggers.
• Ability to analyse multiple interventions.
• Compatibility with all sorts of activity and HR trackers.
• Quick and simple data entry.
• Allow for both short-term (or on-off) and long-term tracking of specific symptoms/triggers/interventions.
• Present all the records and analyses in nice, clear graphics.
• And more I can't think of right now.

*Isn't Solve ME/CFS planning on doing something like that, patient registry and possibly even an app to go with that?

 

Yes, exactly this. Patients can pre-register for that here, https://solvecfs.org/you-m-e-registry/

 

Snark can be cathartic. It doesn't help, but it still feels good.

If there's any place for that it's here

 

Snark for ME, the forum where patients can really vent?

 

Indeed but i just felt it was unhelpful to snark at people who are at least trying to do something useful for us, & seem to be on our side.

I just do get so frustrated at the gross lack of understanding of the practical realities of living with ME. There is plenty of info out there, if they bothered to properly read & listen or engage with any but the mildest sufferers. But this app seems developed by people who think we are very tired with a lot of aches and pains & stuff, we have 'good days' and 'bad days'. Oh, if only it were that simple.
If those who are actually on our side don't fully understand, what hope is there? And it just caught me on a day where i'm feeling raw.

I am heading towards a milestone birthday which are always difficult when you've had this thing for 'a few' years, and when i did the survey I'd just been on the receiving end of a medical professional describing me with words to the effect of 'she's in good health' (- having just pushed me up the corridor in my wheelchair!) .... really? why do you think i am in this wheelchair? Do you think i like it?

I try not to think about what life would be if i were actually in good health, because the agony of the comparison with reality is just too great, but the cruelty of that description, when i cant think of anything i wouldn't give to make it true, when i, like so many others, have lost so much & am merely existing

But at the same time i'm aware that, for so many with very severe ME, my life is like a wild fantasy

 

For what it's worth, the link to this thread has been passed to the team at Columbia working on this. I can't guarantee that they will look at, or take on board, what is said here but at least they are aware of somewhere they can come for feedback on the survey.