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Thank you for welcoming here and providing such useful feedback. I agree that patient discussion in project design of inception is really important, especially in this disease because it's really defined by patient experience. I will say though that patient advisory work on research generally...

We are working with her lab on 2 separate projects on ME/CFS and POTS already. And yes both are looking at PEM so I assume she'd be assessing this. Kegan Moneghetti is who we mainly collaborate in her group. https://baker.edu.au/research/staff/kegan-moneghetti Kegan was initiated in to working...

Have you used visible app to predict your day? Does it do a better job than you at predicting your day?

Yeah I'm aware of visible. I think they try estimate capacity in the morning right? Sleep data i think. I'd be looking broad symptom data but it's not a bad idea to test their process out.

Thank you, we have made a more concerted effort in the space of developing tools needed to improve research on ME/CFS. I think FUNCAP is an example of how researchers are needing these tools, that has spread like wild fire, many researchers are using it already and it's not yet officially...

Yeah you can track symptoms as many times s you like over the day. I was just using an example in my description of day to day. But certainly it would be great for people to track over day. I find this area fascinating. We are interested in developing a morning questionnaire that is predictive...

Yeah Braincheck but any tests that assess executive function or processing speed are fine.

Yes it will be free for others to use once ready for release. We will beta test with patients very soon. Because of it's novelty we are actually making it fit to track any disease and putting in a research portal. We think this is a good opportunity to link in research from other disorders. I'd...

Very good points you raise. The slider isn't set 1-10, it is more like 1-100, so you could describe something at 55 and describe the other at 57 if you wanted. All 3 options of anxiety, wired, dwellingthoughts would be options to use at the discretion of the person tracking. You could start with...

It's not the features, it's the way they are tracked. We have the problem of reliability of a symptom experience being accurate based on a scale of 1-10 or existing scales. So that's the part we altered. We made a symptom tracker where each individual creates their own scale. When you first...

Do you mean how they feel? FUNCAP looks the best to use right now because it captures the patients perception of their functional capacity. Combine with function al information like from wearables seems like the best at the moment. Yes wearables are actually a cheap way to produce a lot of...

Imagine if everyone with ME on this site had a significant work up before each treatment they tried during their journey so far and were tracked during the trying of that treatment to monitor outcome. Now imagine that this work up and monitoring was conducted the same way and was targeting...

There will be significant variance. It's relying on the treatment journey of hundreds of people. There will likely be a lot of overlap of treatments tried because of the network of GPs we will use, they at least have some idea of what ME/CFS is and they aren't pushing exercise. So it's not a...

Yes this is a large scale project that we expect to take another 2-3 years to complete. The idea is to build an initial large dataset for a predictive model in this heterogenous population. And then continue to refine he model as its used. Will keep data scale large initially but will cut out...

I really like the FUNCAP. I think it's important to point out that they validated its use for a two week period. It is also really about perception of functional capacity. It's not asking "when you did this", it's asking "if you did this"

Yes this is very much in the space we are looking. Urine output, urea cycle (nitrogen metabolism), hormone production, blood flow, energy metabolism. That's where we think the answer lies and nearly all our projects are looking at these in different ways. This little trial came out a while ago...

Thank you. I agree with you on the role of B cells in the disease. I'm more interested in their unusual behaviour, which may be due to the underlying problem or a reflection of that problem.

I have a couple questions for you regarding the B cell work.. - CD38 is known to degrade NAD+, removing the NAD+ pool would reduce the speed of ATP production, do you think Daratumumab may have potential by simply removing cells that are more likely to reduce the NAD+ pool? - CD24 seems to have...

Have previously measured NFL in ME/CFS patient serum vs controls. Found no difference. Didn't measure GFAP though.

Always appreciate input like this. Thank you