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

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Here's the tweet announcement.


I expect lots of discussing about this , its very exciting news , but I am concerned they are not using upright mri if I read btwn the lines. (Upright mris in 7Tesla dont exist I think, not even in 3 tesla)

Anyway I will post my thoughts about this in a second post but I want to alert everyone to this study.

Do michael can elzakker and Amy proal have accounts on this forum ? Can we only contact them on twitter ? It would be good for them to engage with the science. I'm not on Twitter but if anyone wants to let them know we are interested in dialogue about how the projects should be executed, thatbwould be great.

@jeff_w @Hip @rpapen77 @sb4 @Murph @ChloeC @Wayne @pattismith
 
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Here's the email I sent to the publicly available email forpolybio, which I believe was "info@polybio.org or something like that, I'll check. I'm up way too late , actually fairly ill from cci and recovering from the surgery and need sutures out tomorrow but cant sleep so decided to try and take on this problem while I cant sleep.


Anyway :

"
Hi, it's cool to see you have a cci imaging study. However, if you look at some of the literature of imaging in people who have any kind of connective tissue disorder, it seems that often supine mris, even very high quality, miss a lot, and that upright dynamic MRI's show a lot that doesnt show up on supine imaging.


Bolognese and milhorat have at least two studies that you can look at that show this phenomenon where the measurements for cci would look normal on supine imaging and then controls and the sick group would differentiate on the upright imaging.


I know that bolognese NOW uses supine imaging to diagnose. But he doesnt solely use it. he also goes on symptoms and a traction test, with fluoroscopy. Between that and the imaging he has lots of confidence of diagnosing cci especially with clinical symptoms , but that is a singlesurgeon, and you guys are probably not using traction diagnostically , so I would recommend you do upright MRIs. This means a lot to me to get the science right. Michael, I read your review on brainstem imaging and alignment and how these things have been done incorrectly in the past in ME/CFS patients so I know you are conscientious about this type of thing. So please reconsider if you are going to do a study with no upright mri arm. It may give inaccurate data. Many of us look normal in a supine mri. There are stats on this.



--Censored Name
 
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There are multiple studies by bolognese and milhorat which would indeed show the upright imaging to be far preferable and the most accurate, ironic as his practice tends to not use it now... but anyway I am quite I'll and busy. In terms of , I need to rest actively, sleep 14 hours a day or so, and then do a spot of pt. So I'm not in the best position to do my usual arguments and polemics, but I have skin in the game and I'm hoping someone who does have the time and energy can enlighten polybio why it would be very important to use an upright MRI even if dr bolognese doesnt anymore.

Can people post this thread on twitter , I'm fine with public discussion ?
 
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I am concerned they are not using upright mri if I read btwn the lines. (Upright mris in 7Tesla dont exist I think, not even in 3 tesla)
It's hard to believe patients know more than researchers about which machine and test will work. Researchers are going to invest their reputations and other peoples money using the wrong test?
 
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It's hard to believe patients know more than researchers about which machine and test will work. Researchers are going to invest their reputations and other peoples money using the wrong test?
I wouldn't have expected this kind of cynicism about patient knowledge from you--a lot of your posts seem to be about how patients can be experts on their own diseases by researching.

Regardless. The only reason this is a debate is I didnt link the two studies by bolognese and milhorat bc I'm revent post surgery and dealing with a bunch of urgent and nightmarish issues... getting sutures out too late at an urgent care ... dealing with unimaginable pain.

I promise to myself and you and others I will link the papers that show that upright MRI works better to find instability than supine.

But I dont know why you think a researcher couldn't mess this up or a patient couldn't know more about a specific imaging thing.

Jeff and jen, two patients, knew more than most of their doctors and more than most researchers about this issue.

From memory. The bolognese and milhorat studies results showed that people with connective tissue disorders and cci symtpo.s often showed normal measurements , similar to controls, in supine mris. In upright mris, especially with flexion and extension, they differed a lot from controls.

If you look at any of those studies warning, some are behind paywalls, but you can find on scihub, you will see the same thing).


By the way, I respect polybio more than most me/cfs research orgs. I have said this in my videos. I'm excited about their research. But this is a major methodological concern. 7Tesla mris are impressive quality , but for structural issues , youd rather have lower resolution and an upright and dynamic imaging that actually shows the movement that gravity causes , than the other way around.

What about this is hard to believe?

Look, the studies show this
..
I promise I will grab them when I have time, I am in pain post surgery with many appointments and issues , like getting my sutures out or just dealing with pain surges and pt , so I am not up to my usual level of research etc. I would expect that someone else could find the studies I'm talking about , to help the discourse , but if not... that's okay, I'll do it eventually. But I'm not making 5his up.
 
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Please everyone support them if you can! There approach is very promising!
I agree they seem promising as an org In general, and I've urged people to support them instead of bigger orgs , bc michael vanelzakker I'd very impressive researcher , and so is amy proal ... but I do have concerns about the methodology of this single study. I dont know if they check their email, or just respond to complaints on Twitter. I hope they check their email. Bc I think thos is a methodological issue they should solve before they start the actually study.
 
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Not the study I'm talking about, but MEPedia says "
Imaging[edit | edit source]
CCI is typically diagnosed via a cervical MRI, whether supine or upright. If supine, a 3 Tesla MRI is preferred over a 1.5 Tesla. Most neurosurgeons prefer upright MRI with flexion and extension.[42] According to Henderson FC, “ventral brainstem compression may exist in flexion of the cervical spine, but appear normal on routine imaging.”[5]"
And link to that Henderson study https://www.omicsonline.org/open-ac...ive-disorders-2165-7939-1000299.php?aid=71754
 
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Okay, heres ONE of the two studies I was talking about. But not the full text. For reference , if you have time , unlike me atm, you can find full text of a study like this easily on scihub by entering title or doi number.
https://pubmed.ncbi.nlm.nih.gov/18074684/

It doesnt discuss the details of upright imaging , but it does in the full text I've read. I recommend trying to find the full text.
@Hip , @jeff_w , you two have read many studies about appropriate imaging for these issues , do you happen to have full text of the bolognese milhorat studies ??
 
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This is the other study, I believe. Covers lots of thr same ground. But some differences.

https://drive.google.com/file/d/196P5QHby-9BqPjOw-gaYK3RtA733rSH9/view?usp=drivesdk


It's sort of ironic that bolognese did some of the great studies that showed upright imaging was more accurate for diagnosis and now he doesnt use upright imaging. Regardless, I think that the orthodox solution for diagnosis or studying this issue should be upright MRIs.

I will send these to polybio when I get a chance.

Michael can elzakker impressed me when he did a thorough review of neuroimaging studies in me/cfs. Often for neuroinflammation, and how they failed by aligning poorly or whatnot. So I would assume hed be attuned to details like this. Even if structural issues isnt his bread and butter.
 
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Researchers are going to invest their reputations and other peoples money using the wrong test?
Researchers have never spent people's money and their reputation on a poorly designed study before ? Pace was 1 million. Granted, I have more faith in polybio, but even the smartest scientists can mess up. It's possible that they are aware upright mris are better but either cant access one for a study (they're widely available for diagnosis but at private clinics, idk how that would work for research. Universities and their hospitals dont have them . I dont know If people doing a study can rent private equipment like that ). Its also possible they're concerned about how hard on patients thr upright MRIs are. But people do them for diagnosis even when very severe , and the surgeons dont seem to share those concerns. If it was really that unethical ,wouldn't someone have stopped them using it for diagnosis regularly? Idk
 

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Not sure if this is sarcastic or not.
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.
 
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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