I think a financial outcome measure will be important for getting governmental funding support for bigger trials and making a case for future...
Great point and definitely something to consider. We're really trying to transition as much research to the home as possible because of these...
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...
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...
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...
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...
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...
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...
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...
No there isn't detailed psychological surveys for the teenagers to my knowledge. There are scales for cognition, quality of life, pain, fatigue....
Yeah we have submitted protocol for publication. This is an NHMRC funded study, the point was to build a lot of biological information on...
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...
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,...
The variation in the day is why I'd like to use it "right now". I think the FUNCAP might be influenced by how someone is feeling "right now"...
The guidelines for the history of the disease in Australia have pretty much been that a diagnosis of CFS requires 6 months of fatigue. That might...
Well done Simone! :thumbup:
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