Polybio (small org founded by michael vanelzakker and amy proal) has announced first cci study in ME/CFS

[frozenborderline]

I'd like to know too, so hopefully they may respond.

I"m having alot of laptop issue with typing. So I'll try to send a question to them maybe tomorrow.

Cool. I dont know if they are checking the email but its worth a try. If they dont respond eventually I'll make a twitter account and ask them online but I hate social media so that's a last resort for me.

 

[frozenborderline]

Agree. If it were shown to be even modestly common, that would be a very important clue. We would still want to try and understand the mechanism better. If we knew the mechanism it might indicate a common factor with affected patients who do not have CCI. Also, for those patients with CCI, understanding the mechanism might lead to a more simple treatment, that does not require the extreme of surgical fusion.



Apologies if I misunderstand your point. fMRI refers to the technique, not the machine. A higher field strength machine can produce higher spatial/contrast resolution imaging (or same resolution, faster). The blood flow changes that represent the brain functions under evaluation in fMRI will be demonstrated: at all / better / 'fully' at higher field strength.



From the Polybio website: "With our planned sequences we can, in a reliable and replicable fashion, detect a range of potential symptom mechanisms such as structural abnormalities (e.g., CCI), autonomic dysfunction, cerebrospinal fluid flow problems, brain blood flow issues, intracranial pressure evidence, and metabolic impairment."

This suggests structural abnormalities (CCI) are just one aspect of their evaluation, but they want uniformity of imaging evaluation. They would seriously compromise evaluation of all other aspects if they were compelled to use low-field upright MRI.



Radiographs have the highest spatial resolution in medical imaging (but modest contrast resolution). X-rays and dynamic fluoroscopy are good methods to image the patient in any position, including standing. Possibly, a good study to evaluate the incidence of CCI in ME/CFS patients would actually use standing dynamic radiographs/fluoroscopy.

CT and MRI can complement these imaging techniques and while lower in spatial resolution, have high contrast resolution. The problem is that CT and MRI are very limited for upright imaging, with our current technology, so won't show what they want to see. Additionally, it is harder for the patient to keep still while standing than lying down. (In)voluntary and respiratory motion are the enemy of MR imaging and would negate the high field benefits.

I'm sure Michael and his team would love to be using an 11T upright MRI for CCI evaluation!

I agree with most of this and think we are starting to get to the same page.

Usually when they are using fmri especially though they specify that and they didnt here so I'm guessing they aren't doing that. And its fmri that would show more specifically changes in blood flow etc .


Again, this study could show some very interesting things and be high resolution, but if you look at the bolognese/milhorat studies I posted, the results of supine imaging aren't just a little bit worse in terms of what they tend to show structurally, they are almost entirely negative in cases where upright imaging shows huge differentiation between controls and sick patients.

You could show a brainstem in incredible high resolution and okay, maybe with that level of resolution you could find something downstream in the ligaments or the brainstem to show the damage from cci (I doubt it bc there will be inflammation and glial activation but that wont show up on a regular mri, I doubt there would be lesions), or like a ligament pannus. But if it's not upright it wont show an average difference in the measurements that matter.
I feel like some otherwise smart people may be supporting this study nonetheless bc they realize some people do have abnormal supine measurements and are diagnosed that way ... but the rarity of that means that I doubt they will find a statistically significant difference between controls and patients if they do that.

I'm fine with them getting a negative result with the right study , but if they do a supine , not upright imaging study and dont find evidence of more patients with cci in me/Cfs group, in my opinion that's almost evidence of nothing

 

[frozenborderline]

This is a table from the other bolognese/milhorat study. So the great thing about this is it includes healthy controls. Tbe labeling may be confusing to some. So it has the groups: healthycontrols, people with connective tissue disorder (who I believe have symptoms of cci , clinically, but pre study haven't been diagnosed), and people with connective tissue disorders who've already been diagnosed with chiari.

I don't think theres another group besides that. Regardless the supine measurements tend to not show major difference btwn controls and sick patients but the upright do.