An idea for a new approach to research

[Hoopoe]

Normally patients are tested and investigated when it's possible and/or convenient for both patient and staff. This might not work well if the illness is associated with symptom flares. By the time testing is done, it might be far too late to discover what actually happens during a flare. The 2-day CPET turned out to be useful precisely because of this.

We might be able to make new discoveries about the illness by doing things differently than they are normally done. An alternative approach would be to let time pass until the patient has some sort of change in their condition.

Looking back at my last 9 months, I've had at least 3 notable changes in health status (and some less notable ones). One was an exertion related crash, one appeared to be an episode of inflammation of the tendons in the legs (especially the knees), and one was a change in sleep patterns (longer sleep, more daytime napping) which was accompanied by an apparent reduction in the severity of dysautonomia.

What if we had a lab ready to investigate these changes in symptoms while they are still occurring? We could take blood samples for later use like metabolomics and do any other relevant investigations.

 

[Kitty]

I agree that studying changes of status is likely to be useful, and we'll be able to do at least some of this much more easily in the near future. Various researchers have been working on wearable technology that might be able to pick up changes of signal – e.g. in sweat. This might not only help us avoid exceeding our energy envelopes, but also to offer long-term data to researchers from which meaningful patterns might emerge.

 

[Trish]

It would be hard, and too stressful and expensive having to have blood taken every time there's a change in symptoms.

It occurs to me that it might be possible for individuals to be supplied with a year's worth of date labelled urine sample bottles to collect a urine sample at the same time every day along with records of things like resting heart rate, step count, sleep and symptom diaries and diet diaries. The samples could be kept in a domestic fridge or freezer until collected by someone from the research centre at intervals.

I say take samples daily, because it may be worth capturing the evidence of change in biochemistry before the patient notices a change in sympoms.

Edit: Crossposted with Kitty. I agree the sweat sampling might be useful too.

 

[Hoopoe]

It would be hard, and too stressful and expensive having to have blood taken every time there's a change in symptoms.

It would have to involve a nurse coming to the patient's home to take blood and/or arranging transportation to the lab if the patient felt too unwell for traveling on their own. Depending on what is being investigated.