Dissertation Research: Looking for ideas

Hi All,
I am 23 years old and was diagnosed with ME/CFS/Fibro when I was 15. Over the years I have got a 'little' better, perhaps more with management of the condition than anything else.

I am currently undertaking a computer science masters course (struggling greatly with my health but trying to get through it!) and I am about to start my dissertation. I've decided I want to do something, however small, to help chronic condition suffers and thats where I need your help. Do any of you have any ideas of day-to-day applications, or wearable devices, that would help you manage your condition? The point is less to find a 'cure' than self management of the condition itself- I know personally I really struggle with getting to doctors appointments etc as it is so exhausting. It could be related to problems you find in every day life (like travelling/ making meals/ stress).

An example would be using the spoon theory (give it a google if you aren't familiar!) whereby I would create a wristband device to record energy consumption, every half hour activity would illuminate a red light and once the wristband was fully lit that would be a signal to rest for the day so you do not overdo it and suffer payback over the forthcoming days.

I would love to hear any ideas you have, and anything you really struggle with regarding the condition (this could be triggers or certain activity) which I could then cater my dissertation research towards. Perhaps you have found ways of dealing with the condition that could be translated to a technology platform?

Thanks for your help- I'm hoping once I get started some of you might be interested in answering further questionnaires for me and maybe trailing a product/app (I will make sure nothing is too challanging- I think it helps that i have first hand experience of the condition so have an idea of what we can manage!)

Tabby
X

Hi Tabby --

While I admire your inspiration to help others with CFIDS, I have a bit different take on what you suggest. What you propose adds more complexity to someone's life in having to learn how to use a device, not to mention having the constant reminder of limitations on one's wrist. Some sufferers are so overcome that they might have difficulty remembering to use such a device regularly for it to have any possible benefit.

And how would such a thing be programmed, with many individual threshold fatigue points amongst individuals? It would be impossible to create a device tailor-made for each person. And even within individual cases, fatigue is not reached at the same point each day...all things being equal.

I think it's critically important not to "embrace" ME/CFIDS and make it first and foremost in one's thoughts each and every day. Yes, it is there, but it's much more important to focus on living than limitation. What you suggest is somewhat like the proverbial flea in a glass jar with a lid. The flea learns not to jump against the lid to try to escape, and once the lid is removed, the flea has been trained not to jump any longer and remains in the jar. (Probably not what would really happen, but the illustration is helpful.)

Many people with ME/CFIDS have been helped with LDN. I think that's a much more positive way to manage the condition, both as a practical matter, and also in terms of one's mental health.

I don't mean to dampen your enthusiasm -- but there might be a direction you could take your thought to help others that could reach more folks.

Best wishes.

Bruce

LDN: www.healingwell.com/community/default.aspx?f=15&m=3786777