OMF: Does ME/CFS Change Molecularly Throughout a Day? Jonas Bergquist & Christopher Armstrong's New Study 2022

From news email

Open Medicine Foundation

As part of our annual Triple Giving November campaign, we are pleased to highlight an additional 2022 OMF supported research initiative. This study is in collaboration between Christopher W. Armstrong, PhD, Director of the Melbourne ME/CFS Collaboration, and Jonas Bergquist, MD, PhD, Director of the Uppsala Collaborative Research Center.

High Frequency Blood Sampling
Principal Investigators
Christopher W. Armstrong, PhD
Jonas Bergquist, MD, PhD

ME/CFS is a complex disease that varies from one patient to another and even from hour to hour. It is a disease defined by its symptoms and yet these symptoms vary both between patients and within patients over time. While research in recent decades has identified many areas of dysfunction in the bodies of ME/CFS patients, we still lack comprehensive knowledge of how all the parts fit together. All people experience subtle biological changes during food digestion, stress, and both physical and mental exertion, however, ME/CFS patients can have physical changes in symptom expression in response to these. Few studies have explored how symptoms change in patients, from day to day or even hour to hour.

This study plans to use high frequency blood testing—multiple tests over a 6–8-hour period—to evaluate what changes in ME/CFS patients over the course of a day.

The study will also examine changes based on cognitive, social, and physical tasks and food consumption. Based on the latest technology in multiple fields, a wide range of test methods will be used to characterize and compare the biology of ME/CFS patients, healthy controls, and athletes over a day's time. Past research points to dysfunction in how the body creates energy in ME/CFS, so those theories will be explored.

The overall goal is to better understand the biological mechanisms that underlie changing symptoms in ME/CFS patients that occur in response to different experiences. This information will allow researchers to examine differences and to potentially identify biomarkers and diagnostic tests, as well as evaluate new treatments.

 

Healthy controls and athletes? How about some unhealthy inactive controls? Let studies of differences between normally-active people and very-active people be funded by the sports industry.

 

Perhaps this will show why some of us feel much better in the evenings?

 

Exactly what I was thinking.

 

Quite a novel way to look at ME. It's good to look even if nothing is eventually found.

 

The devil will be in the detail but using athletes as controls is not necessarily a bad idea. There have been suggestions made, I forget by whom, that some of the molecular findings in ME look similar to what you'd expect in someone who's just run a marathon, except in our case our marathon equivalent effort may just be taking a shower. Would be even more interesting if they used overtrained athletes - and used that angle to bring in funding from the sports research field.

 

I don't have an issue with athletes being included, but I do with not having inactive or unhealthy included in order that differences aren't put down to deconditioning etc.

There are some similarities I can't help but have noticed over the years to overtraining syndrome (but not in a 'it's the same thing' sense, just certain little phenomena or patterns within these that crop up) and not everyone with ME is 'unfit' - it's the PEM issue - so actually if they are testing a wide variety of things then it would be interesting to compare the ME/CFS graphs to 'the full gamut'.

Of course the issue there might be power, but if this is exploratory and might have bigger follow-ups then identifying the right methodology at this stage is the better thing to do (shame that I assume it is normally the need to get to next stage of funding that means this bit tends to be 'place your bets' rather than working out the nuance)

 

Indeed, given there indicators of it likely being systemic and perhaps affecting (if not involving) aspects that are pulsatory, but particularly how PEM works, then moving on from only snapshot data - without defining criteria for that (e.g. time of day, noting amount of exertion in preceding x days before etc) - is probably important.

 

We have needed some kind of study like this since the late 90s. I have been waiting. Maybe this isn't the absolute best possible study, but its a step forward. Real criticism (good and bad) will be warranted after we see results. They might find nothing major or they might get bombshell results. Either will advance the science, though major discoveries are of course to be hoped for.

I have suspected since the 90s, based on studies on urinary citrate if I recall correctly, that the time of day may alter the results of studies. This might tell us if that is true.