Well, just mildly snarky about Harvard and fancy.
I am quite sure these researchers are familiar with the research on upright MRI and CCI. They could hardly be doing the research if they weren't. Remember Dr. van Elzakker actually understands ME/CFS. He isn't going to make a little mistake about patient position. Therefore, he must know something we don't about why this is a good approach to take.
Since most of us can't get upright MRIs. maybe he is working on a way for a supine MRI to see what needs to be seen. That would be quite a step forward. I will be eager to see his results.
I really , really dislike the viewpoint that researchers automatically know more than laypeople . I really dont think michael vanelzakker would even agree withthat, hes engaged with people who are not credentialed researchers quite a lot, and learned from them. For example , Jeff and Jen surely influenced his decision to even study this structural stuff at all.
So, the speculation as to why he-a very smart researcher who knows a lot about neuroimaging-would choose the "wrong" kind of imaging. I dont think it's for the reason that you say . I think it's possible that he needs to work with neuroimaging facilities either at his place of employment or at least in the same city he is. And there are no upright MRIs in boston. However, there are workarounds for things like this. There was a swedish study which initially planned to pay for transport to London for upright MRIs for this purpose. They eventually dropped it, though.
I doubt he has come up with a way to find structural issues that is totally novel in supine imaging. This is not because I doubt michael is very intelligent, but his background isnt even structural issues, and there aren't enough studies in this area to even come up with a definitive meta analysis or anything.
But the few studies there are, some of which I have linked above , show very stark differences in upright and supine imaging.
I am troubled by the idea that we should write this off. The consensus statement on measurements to diagnose cci is a very recent document , from henderson, bolognese, sandhu, and others. And then these studies that show how these measurements differ in controls/connective tissue disorder populations in upright position but not in supine... we dont have anything that refutes that as far as I know.
Part of the reason I'm so adamant about this is we already had one study essentially show a muddled or non existent difference in this population and controls by using supine imaging only. The bragee et. Al study in Sweden or Norway I believe it was.
I dont know the exact challenges for them to get upright imaging for a study. As a patient , upright imaging is usually cheaper than supine imaging,
especially cheaper than supine imaging that is high quality.
Upright mris tend to cost about 600$, and supine ones tend to be more available at hospitals rather than independent imaging centers , and to cost over 1000$, sometimes a lot more. Even at independent imaging centers , I think a 3tesla supine mri would cost $1200 at least. So this isnt a matter of cost , it may be a matter of availability. There aren't a ton of these machines around. But there simply has to be a way to do s study with them. If you pay individuals a voucher to cover the cost of imaging, and travel to the upright mri site , you can then aggregate the individual mris and voila, have a study