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Amazing post. Thank you very much for all this information. I think you highlight that it could work at the mild end where people can increase employment and it could work at the severe end where people require reduced care. But the middle moderate part is unlikely to alter in financial...

Right, for some the improvement might be enough to consider increasing employment. For most, we're likely looking at reduced assistance costs and perhaps other medication and supplement costs. I think these are all signs of improvement, just wanting to know how to best capture it with questions.

Well the care model for patients we have built up in our head is about energy preservation and we see pacing and medications to help curtail uncontrollable energy dumps as critical to that. If you reframe the perspective around energy conservation like we do then it becomes clearer. Energy...

I think a financial outcome measure will be important for getting governmental funding support for bigger trials and making a case for future treatment subsidies. So it should be considered an outcome measure of improvement. There are several factors, these are 3 that spring to mind: -...

Great point and definitely something to consider. We're really trying to transition as much research to the home as possible because of these types of reasons. Of course CPET or imaging based studies still can't unfortunately. Very interested in trying to get telehealth and home visits as being...

There is very little research on it at this stage. What you've described means it's not simple and likely multi-factorial, which I appreciate and is likely true. Patients currently control exertion of skeletal muscles, some thinking and sensory processes (dark room, reduce noise, etc). But...

I think a focus on understanding PEM is the best funding direction. I think you need to know when patients are close to it. Knowing that accurately would be a key test to timing different intervention strategies. It's critical. Detailed analysis of patients going through it and recovering back...

Definitely interested in looking at the Decode data. Have a few things we're interested in. Sneaky value of this type of resource is providing data for short projects to get masters students interested in this research area to perhaps do a PhD.

I went, the conference was good. Was interesting to hear about some new research and some large projects just beginning.

The childhood trauma question is interesting for biological research too. Developmental changes can happen to many biological systems. All manner of things happen from it as a risk factor to a lot of disease. But it's also inaccurate because a lot of people can point to traumatic things in...

Well I completely disagree with that. People deserve control of their data.

Excellent input from all of you. I wonder if the psychologists are aware of the harm they've created by trying to treat in such a way that has resulted in ME/CFS patients distrusting CBT and other psychological therapies that would be needed to help anyone with the mental toll of dealing with...

You can ask your data to be deleted at any time if you participate in research. And it will be adhered to. This should be in all consent forms Reviewing some scales may not be possible because of impact on the test itself. It can also be quite lengthy to review. It's not really about sneaking...

Harm is an important issue. Unfortunately, almost every study on patients causes harm. Even a blood sample or the energy to fill a survey. Do you think researchers do a good job explaining all the dangers of being involved in research broadly? It is difficult to assess because it varies from...

No there isn't detailed psychological surveys for the teenagers to my knowledge. There are scales for cognition, quality of life, pain, fatigue. There are behaviour surveys for guardians. Closest thing to what you are asking that is used is the HADS I think. Which investigator used a question...

Yeah we have submitted protocol for publication. This is an NHMRC funded study, the point was to build a lot of biological information on teenagers with ME/CFS. ME and HC go to the clinic for a blood draw, urine samples, cognitive tests and MRI. Blond draw is for extensive omics (metab...

Do ME/CFS with orthostatic intolerance remember if they had OI symptoms before ME/CFS?

There isn't any really though, it's a serious need to have validated 'right now" scales

I should add that Aspartate has one N atom. This N atom in Aspartate is actually the N in NO. I don't think a lot of people realise how simple this is even in metabolism field. But 99%+ of Nitric Oxide molecules gets the N from aspartate.

I think the nice thing about FUNCAP is the split into domains that you could focus on in a shortened survey. I am wanting to get wearables, FUNCAP right now, symptoms tracker and biofluid collectors to capture patients on a good day, a bad day, entering PEM and during PEM where possible. I...