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Interesting discussion on PEM. What is the range of time before PEM do you recognise its coming?

I have heard from patients that experience immediate PEM such that they describe this red flush that starts in the face and spreads. I am particularly interested in the concept that a mild patient may experience a delay but if they were to become more severe with time they notice their PEM has...

The illness process is a broad term to cover many aspects of difference. I believe that part was initially a lot longer and shortened down. It's effectively meant to represent differences between females and males. We do have a growing interest in the neuroendocrine role in ME/CFS and long...

Yes it's well underway, recruitment ends very soon and data analysis will begin. Yes protocol paper took a while to get published but we persisted for simplicity, there will probably be 5+ papers from this. Yeah it would be good to have more data on the age of onset to see if the peaks hold...

That would be interesting to know. The delay differs between people (see DOMS as an example) but I think the fact that people say the delay in PEM becomes immediate when they become severe. That's an interesting piece of knowledge. Is there a paper on this or is this from your experience in...

I'm not sure if many people know this but myself and Rob Phair developed the itaconate trap hypothesis. We were looking for pathways to explain why amino acids may be preferentially used by ME/CFS patients and why this occurs rapidly as a stress response in all animal cells, especially more...

HRV is typically shown to be lower during stress, so the idea that people have been using is that low HRV is predictive of feeling worse. We are looking to do some similar work here but a little different than single morning HRV measures. It's encouraging to see that it was accurate. The...

The delay in PEM is very likely related to RNA, there are many processes in the body that take 24-48 hours to alter path. The exacerbation that occurs in response to this new path is of course interesting.. what is biologically happening.

Depends on the study, certainly severity matters if you were to develop an objective marker for clinical trials. It remains an important need for this disease. In terms of studying the pathology of the disease or developing a diagnostic. It may not matter but it also may matter, the cause of...

Hypertension is in reference to ongoing elevated blood pressure at rest. Orthostatic hypotension is the dramatic drop and sustained drop of blood pressure upon standing outside of a normal range. POTS is the dramatic rise and sustained rise of heart rate upon standing outside of a normal range...

We also managed to get a US Defense grant for this project. We're excited about this project, had to set it up as a clinical trial, so a lot more regulations than anticipated but we begin recruiting in Feb 2025.

It's possible that people said they were diagnosed but had since improved to a significant degree while still holding the CFS diagnosis. There will of course be misdiagnosis, as there will be in vast majority of studies. The point is capturing a large enough scale of people to form a reliable...

Yeah the supplementary files are loaded with data, worth perusing. A lot of work went into them but couldn't present them all in the main paper. The comorbid conditions chosen were those that were most common in those that identified as having me/cfs in the dataset. We required a minimum for...

Yes we've been patiently waiting for this publication to come out for a long time! We submitted almost a year ago but felt it was important to get ME/CFS research in to a nature journal. We showed a lot of great things in this publication. A pathway to a differential diagnostic marker is the...

Well adrenaline doesn't create energy, it pushes you to use more though it makes substrates of energy (like glucose and fatty acids) more readily available.

[ Through the usual grant process you wouldn't need this outcome measure, though ME/CFS research goes up against cancer and many other researchers with historically large projects funded to back then up. The grants we apply for show us as a group looking to do a clinical trial with little...

It's hard to capture a one-size fits all survey I think. I think any development of this type of outcome measure is going to need interviewing hundreds of patients to capture the diversity and determine value.

Excellent post. Thank you. This will help me a lot. I think develop I financial survey will have to be very well-considered. May only strategically bring it out in those already employed part-time or the severe with carer help. Certain demographics. Don't want to undersell the life...

So would have to capture potential to work, not actual process of being employed.

Double-blinded