Could existing data from large-scale Covid / physical trauma studies show the biology of how ME/CFS develops from those triggers?

Maybe one way to get started is to run a project where primary care providers are asked to approach patients in the early stages of suspected postviral fatigue syndromes, and ask if they'd like to engage with a study on it?

If not, would they be willing to allow their doctor to submit anonymised data about age, sex, co-morbidities, a note of the suspected trigger, geographic location to city level, and how long they take to recover?

If it was done over a large enough area it might produce incidence figures at least. An imaginative government (assuming such a thing exists) might even want to give it their backing, given concerns about levels of sickness in working age adults.

A clearer idea about incidence might help researchers with designing prospective studies.

 

I wonder if that would be too late? Whether the switch would already have been flipped?

 

It is hard to know given there is such variation in reports of what happens around onset. Some people with onset associated with viral infection report a gap between the acute phase of the infection and then the emergence of the chronic condition, but others report an apparent continuity between the two. Further does it make sense to talk about a switch in relation to people who experience a gradual onset.

 

I might be repeating myself but it must to be possible to copy what Ascherio did for MS-EBV for ME/CFS-EBV. There will be complications surrounding less reliable diagnostic criteria that might require even larger cohorts (Ascherio already required more than 10 million participants) but if there is a true positive signal the rewards are possibly also bigger than they are were for MS-EBV (because the development of MS only happens decades after EBV infection, whilst the process for ME/CFS is assumed to be much quicker).

If no one can be motivated to do this work purely for ME/CFS perhaps one can have ME/CFS included in those studies that are already doing all this work but for other illnesses (be it MS-EBV, RIS-EBV, cancer-EBV or something else)?

A different alternative would be to begin researching family histories in ME/CFS properly, maybe combined with genetic work or something (and somehow ensuring that the prevalence your witnessing isn't just a result of higher chance of diagnosis). If one could know whether first degree relatives of ME/CFS patients carry a significantly higher chance of developing ME/CFS, the necessarily required gigantic study setups mentioned above could potentially be reduced significantly. Perhaps that would make it possible to better understand risk factors associated with ME/CFS. If DecodeME was able to identify some strong risk genes that would also be a possibility to reduce the necessary samples.

 

Quite possibly, and very probably in some. But the suggestion was more about gaining hard data about incidence and age at onset from large populations.

If there was nothing more in place than a reporting system from primary care, which began with a wide capture but only continued to follow people until they recovered (or didn't), we'd know a lot more than we do now.

It's still a significant project, though, because it'd need a reporting system that's easy and quick to use. That's probably where the idea falls apart altogether, because computers innit.

It might only work if there's something already in place that could have a new code or category added to it.

 

The key point about such a study focusing on long-term outcomes of surgery, or population based studies in general is the incidence of ME/CFS is fairly low (and I suspect surgery-associated) is low too. Any surgery association itself may be due to confounding factors such as infection exposures - so numerous additional factors need to be considered in such a study.

This means the sample sizes have to be very large, even potentially up to the hundreds of thousands of people and need to be followed up long-term, which means they're expensive.

For it to capture ME/CFS, such studies need to be designed for it from the outset and almost never are. That said, I would like to see some single long term 'study-everything' type studies, even if they cost billions of dollars.

Basing it purely on diagnosis rates is a flawed/biased approach too - this isn't an IT problem, it's a medical doctor problem - patients going undiagnosed or not even turning up in the medical system.