What research do you want to see? (study ideas)

I don't think putting anyone through a 2-day CPET to investigate diagnostic questionnaires is ethical. I'm beginning to doubt there's ever a strong enough case for it, to be honest.

 

I see that point.
But I think there’s a counterpoint in that society and medicine does not take PEM seriously at all, or even really believe it exists. And pwME are constantly forced into PEM through interacting with these two systems.

If we’re gonna have people in PEM we may aswell advance the research on it, in order for society to eventually take it seriously. Valudating/invalidating diagnostic criteria will have an enormous long term benefit until there is a reliable (non-CPET) biomarker.

Obviously though informed consent is an absolute **must**. And I like Trish’s version of the study too.

 

But CPET is neither validated nor a biomarker. That's part of the problem.

People giving detailed accounts of the symptoms they experience in PEM is as reliable as anything we have, and we don't need to expose them to the risks of CPET to provoke those symptoms.

 

I agree.

The question to me however is whether more 2-day CPET studies will really lead us to understanding anything about more pathology. Because several 2-day CPET studies have been published, thousands of patients have gone through the procedure and Workwell has data on several hundreds of patients (that for whatever reason they don't publish). So I sceptical whether there'll ever be an "aha moment" from these studies. Society/medicine doesn't take ME/CFS any more serious after those studies have been published. An argument can be made that one needs more "response to exertion" studies, for example the one by Rob Wüst.

 

I think Todd Davenport said they were planning on publishing them in the next year or two.

 

In which case it's clearly not a priority since they've been sitting on this data for years. I wonder whether they will match controls and patients, since he somehow had a problem with that and I wasn't able to understand his argument.

 

Yes I was similarly confused reading that exchange with Todd

 

RCT of Low Dose Apiprazole. Small cohort of severe people.

Follow patient made protocol. Titrate from 0.1mg - a couple mg as tolerated. Don’t increase activity levels for first 6 months.

Long trial, 1.5+ years, to measure “poop out” effect some describe.

Primary outcome measure = Fitbit activity data + FUNCAP

 

Wouldn't it make more sense for all 2-day CPET research to be done 48 hours apart instead of 24?

Correct me if I'm wrong, but most people's PEM lasts at least a few days. And while some will already be experiencing PEM after 24 hours, for many others, it's closer to 48. Doing the second test at 48 hours would ensure that most people's PEM is high without being so long that many are recovered.

 

I seem to remember that Dr Lynette Hodges from NZ was looking at repeat CPETs with different time intervals.