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

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Yes, I trust that they knw what they are doing since they are "our" researchers. Maybe their fancy Harvard MRI will pick up something that other machines can't.

Polybio seem to be very into the machine they intend to use, and are very knowledgeable about ME.

I don't equate them with other more random researchers who could be more poorly informed.

You can send them an email at their web site and just ask them.
 

wabi-sabi

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I don't equate them with other more random researchers who could be more poorly informed.
Neither do I. That's the point I was trying to make, if rather clumsily.

I know it's not a popular opinion, and I don't really mean to be condescending, but I get so frustrated when patients think they know more about research and science than the actual researchers and scientists who are trying to help us and then go around criticizing said researchers.

I know there is really nothing of value I can tell a scientist about science and I am eagerly waiting for them to come up with answers.
 
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I know there is really nothing of value I can tell a scientist about science
its a valid concern, as we have been told to use upright MRIs to evaluate CCI.

I m assuming they have specific reasons this machien will work for the questions they are evaluting which might not be =to evaluating for CCI surgery.
 

SNT Gatchaman

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Upright MRIs are (to my knowledge) limited in field strength to 0.6T. The researchers are using a very high field 7T (supine) MRI which gives much greater spatial and contrast resolution, along with other tricks such as advanced blood and CSF flow evaluation. I believe the researchers are beyond the point of trying to demonstrate a position-variable cranio-cervical relationship and looking more at what effect this has on the brainstem. This can not be done with an upright MRI.
 
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Polybio seem to be very into the machine they intend to use, and are very knowledgeable about ME.

I don't equate them with other more random researchers who could be more poorly informed.

You can send them an email at their web site and just ask them.
All I'm saying is theres a methodological problem in the planning of their study. I'm not criticizing the researchers, if anything polybio is one of the orgs I trust the most. Anyone can mess something like this up. I did send them an email. I dont know if they respond to those.
 
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Upright MRIs are (to my knowledge) limited in field strength to 0.6T. The researchers are using a very high field 7T (supine) MRI which gives much greater spatial and contrast resolution, along with other tricks such as advanced blood and CSF flow evaluation. I believe the researchers are beyond the point of trying to demonstrate a position-variable cranio-cervical relationship and looking more at what effect this has on the brainstem. This can not be done with an upright MRI.
But the thing is, there hasn't been a single study that has demonstrated a "position variable craniocervical relationship." We aren't beyond the phase of needing basic studies that show stuff like Clivo axial angle , etc. We still need studies that establish the most basic structural problems and whether they exist with ME/CFS at all. A) that hasn't happened yet and b) to happen it requires upright MRI according to most studies.

Also while there are many benefits to higher resolution mris to truly show blood flow changes I'd think youd want an fmri. And michael van elzakker was already doing studies looking at inflammation and blood flow in the brainstem, eg the stuff you're saying they're moving towards and doing instead of looking at basic structural alignment in this study. So then this study would be redundant if that was true. Except they said its specifically to look for whether cci exists in an ME/CFS cohort. Which requires upright mris. I realise those are lower resolution, but they show structural issues better. I mean people even do x Ray's or fluoroscopy which are far lowerresolution, while upright , to show these issues, bc dynamic imaging and showing the effects of gravity on the problem is more important than high resolution.
 
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its a valid concern, as we have been told to use upright MRIs to evaluate CCI.

I m assuming they have specific reasons this machien will work for the questions they are evaluting which might not be =to evaluating for CCI surgery.
I think its valid to actually press the researchers on why they made this choice. Patients can know as much as researchers. It was patients who requested and reanalyzed the data of the PACE trial and got it to be seen in a very different light.
 
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I know it's not a popular opinion, and I don't really mean to be condescending, but I get so frustrated when patients think they know more about research and science than the actual researchers and scientists who are trying to help us and then go around criticizing said researchers.

I know there is really nothing of value I can tell a scientist about science and I am eagerly waiting for them to come up with answers.
It may be a popular opinion. I see it a lot here.

But I dont think its healthy. I dont mean that to be overly critical. But science is not inherently based on expertise. It's a process that can involve non experts. In the PACE trial, non credentialed patients were the ones who foia requested the original data, and submitted a reanalysis which got the trial to be seen in a dramatically different light. They were published in journals.

This forum is in part for laypeople to share their scientific ideas and theories. Often these theories and experiments end up leading to as much progress as any scientist has made. If you look at what Jeff Wood has managed , he figured out his underlying diagnosis, found a surgeon , and got cured. Patients may have brain fog and not much cognitive energy but we have often contributed very important things scientifically, as a group.

I dont like the idea of downplaying it. I think this forum exists partially to help people with emotional support but at least partially for scientific research by patients, and to share ideas. @Hip is an exemplar in this area. He compiles thorough observations about many people's amateur experiments with this or that supplement , but also reads deeply into the existing literature on this disease and the comorbid ones. I think that's the spirit we should all be approachingthis. We may need patient work, not researchers alone, to find a cure.
 
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Again folks, read the studies for yourself. But I'll post tidbits as I have energy. These are fluoroscopy measurements comparing supine, upright and upright with invasive traction!

View attachment 44792 View attachment 44792 View attachment 44793 View attachment 44792 View attachment 44793
This is just from one of the studies. The other one has lots of similar diagrams and figures , but this alone shows why upright imaging is superior for picking up problems. I'd rather we address this than just assume that it's impossible for a layperson to see a problem in a scientific study bc they're not credentialed. That's not how science works... again , the pace trial received the most potent criticism from laypeople with ME/CFS that got the data and did a reanalysis of it.
 
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I remember Dr. van Elzakker talking about this somewhere, but I just can't remember where now. Stuff to the effect that we need to move the research along.
Okay, I just think that everyone with cci and ME/CFS, and every doctor or researcher in that field, as far as Iknow, has pointed toward the intense lack of research into this. I just had a surgery for it and nobody involved has studies that show a link btwn cci and ME/CFS, bc they dont exist. That's a really important link to establish bc thousands of people are having that comorbid diagnosis and serious surgeries and before we can study the effect of a treatment we should study if theres even more incidence of cci in the /ME/CFS community. But like I said those studies dont exist. So we cant "move past it" , since we haven't even established those basic things.

In scientific terms , theres either no literature or almost no literature on this connection.

On personal terms , I'm upset by the idea that we would not address and "move past" a very basic and important part of understanding ME/CFS and cci, when we haven't even gotten any research on it, years after the most sensational cases that should be formal case studies , happened. I mean at some point its unethical to not do basic research looking for a connection between these two problems. If patients are already getting upright mris in the thousands, I dont see how we cant at least do some kind of population based study and find a control in general population...

It's not as if this kind of imaging is totally inaccessible. People get it for diagnosis for any of the major five cci neurosurgeons except for dr bolognese. So if someone's seeing Patel or henderson or Gilete or sandhu they're already getting this imaging. I dont see how this csnt be turned into a formalized study.
 

SNT Gatchaman

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But the thing is, there hasn't been a single study that has demonstrated a "position variable craniocervical relationship." We aren't beyond the phase of needing basic studies that show stuff like Clivo axial angle , etc. We still need studies that establish the most basic structural problems and whether they exist with ME/CFS at all.
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.

Also while there are many benefits to higher resolution mris to truly show blood flow changes I'd think youd want an fmri.
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.

Except they said its specifically to look for whether cci exists in an ME/CFS cohort.
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.

I mean people even do x Ray's or fluoroscopy which are far lowerresolution, while upright , to show these issues, bc dynamic imaging and showing the effects of gravity on the problem is more important than high resolution.
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!
 
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wabi-sabi

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autonomic dysfunction, cerebrospinal fluid flow problems, brain blood flow issues, intracranial pressure evidence, and metabolic impairment."
I'm curious how an MRI can show autonomic dysfunction or metabolic impairment. I have a vague understanding from seeing presentations that it can show changes in blood flow.

Are we inferring metabolic impairments or dysautonomia from the blood flow changes? Or something else?