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I'm very sorry to hear about your son and the negative experience you've had with clinicians. This disease is awful and the lack of knowledge around it has meant that tough decisions need to get made without the information to make that decision. I am just spending time with my kids now and...

Wouldn't we be providing bias by targeting the removal of specific questions I don't like the sound of from a standard scale? The paediatricians are in charge of caring for patients and are across what was done in this area, I don't think me (a biochemist) should be over ruling their decisions...

Some studies have provided evidence to cortisol dysregulation but I wouldn't say it's strong evidence. Perhaps relative to other evidence in the field it's stronger but not definitive.

This was a collaborative study between clinician researchers at the local children's hospital and us. The pics aspect is quite distinct but we will see if there is any value in combining the data. I am interested to know your perspective on diseases like anxiety and depression. Do you see them...

These are conducted with neuropsychs and feedback reports are provided to families. This all works closely with the paediatricians at the hospital who continually look after these patients. It's not simply 'hey do this study" and then "thanks, see ya", which some of you may be used to doing...

This is a collaboration between us and neuropsych researchers that work with children. Their expertise put together the decision on scales to use as it pertains to neurocognitive testing, behaviour tests and mood tests. These tests are used broadly across children research for all manner of...

Lack of evidence for cortisol is similar to most other findings. We have threads that we have to pull on a little more to get that evidence. Is it real information or is it not? The scales are standardised way to get information on behaviour and mood from this population. These standard scales...

There appears to be a lot of confusion around the language we used, that sounds like we failed to communicate in a simple way and will do better in the future. Yes a student wrote the draft but we all reviewed and edited the writing as well as peer-reviewers. So this isn't a reflection of the...

Yes it would be a way to observe some of the exertion that isn't just walking (step count) or being upright (up time). I think at the very least it would be interesting data to monitor to see if it is useful. Most continuous data collection devices are flawed but their value comes from being...

We were just listing all the types of information that can be collected to interpret understanding of an individual or a disease. It wasn't targeted at something specific to ME. Relevant information to ME could be hiding in places we don't suspect. But just to give an example, there are phone...

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-024-05915-z Machine learning and multi-omics in precision medicine for ME/CFS Katherine Huang, Brett A. Lidbury, Natalie Thomas, Paul R. Gooley & Christopher W. Armstrong Journal of Translational Medicine volume 23...

Well there seems to be a expected spread along the x-axis for Cardiac Output, which is what you'd expect as heart just doesn't instantly pump more. There are a couple little jumps that are not expected. The main split is in CBF (y axis).

AI seems to have acquired the unfortunate human trait of sounding extremely confident even when obviously wrong.

Yes I pushed back about a lack of evidence and they agree there is a lack of evidence but added that the research to produce evidence hadn't been done. I feel like they think the theory were like the sunken titanic, "we know it's real and it's valuable but we don't have the time or money to...

Yes agreed. Not stuck to the concept of PEM and energy or capacity. It does seem like the most often discussed connection but best to keep the mind open.

I think the failing in the definitions of ME/CFS is that the clinicians and advocates defined the disease around symptoms in such a way to be inclusive of a large range of patients from outbreaks. A focus on the most consistent objective observation or pathology would have been more helpful even...

I've had it explained to me by those that propagate GET and CBT that they think that it's kind of like central sensitisation but with fatigue instead of pain. The exact mechanism isn't known but it's the sickness behaviour of fatigue upon acute infection that continues chronically because...

If we were to say PEM is caused by energy being expended beyond a certain level then this would make sense. Patients discuss limiting exertion but what they refer to is limiting exertion they control, most energy is used outside of our control to keep us functioning day-to day. Beyond that, it...

I think syndrome is probably right for the collection of symptoms presented. Postural Orthostatic Tachycardia is present in healthy people, that disease requires the Syndrome to be POTS. Irritable Bowel Syndrome is the same. So while CFS has the Syndrome part down, what should be the defining...

So do you think the nervousness precipitated the PEM or did the nervousness create the insomnia and being awake for so long precipitated the PEM?