The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

[poetinsf]

I'm not sure what cases you are referring to @poetinsf, but the high profile ones I am aware of were rather complicated. It was not clear what the person had wrong with them and nor was it clear that the CCI surgery resulted in any real improvement.

Jenn Brea, Jeff Wood and Melissa Wright. Sure, they all could be coincidences. Nobody is questioning that. I'm only suggesting that it's worthwhile looking into the possibility of the intracranial pressure mimicking ME/CFS symptoms. I brought it back up since 2024 Jin et. al. paper implicates vagus nerve, which can be compressed by CCI, as the nexus for the communication between peripheral inflammation and the brain.

There are red flags around the key providers of this surgery for people with ME/CFS symptoms.

It's unfortunate that dubious people are taking advantage of desperate people. It would be equally unfortunate if we let such dubious people stop us from looking into what could be a legit possibility.

 

[poetinsf]

So eating bananas might cause ME/CFS in one in 10,000?
You need to have some rational basis for bothering to speculate about something.

You think suspecting intracranial pressure making neurology/neuroimmunology hypersensitive in some people is about same as suspecting eating bananas? Doesn't certain headache make some people light-sensitive?

If people want to speculate, that is fine, but why pick something peddled by fringe surgeons and all over social media? Why not something original?

I'd rather keep my eyes on the prize rather than getting distracted by unscrupulous people.

 

[Trish]

We had yet another discussion of this topic earier this year when Jeff Wood, who makes money out of promoting this surgery, published a preprint which claimed successes, but even after several years the only 'case studies' they included where himself and Jen Brea. @poetinsf, you raised all the same points on that thread as you are raising again here. As far as I can see the preprint is just a sales pitch, not a scientific paper.
https://www.s4me.info/threads/hypot...vid-2025-jeff-wood-kaufman-et-al.44557/page-3

There seems little point pursuing discussion based on speculation until and unless the surgeons involved publish a decent study of all the cases they have treated on the basis of the so called ME/CFS connection. The fact that they have published nothing, not even a case series, tells me they have nothing new to report that supports using CCI surgery unless people have classic CCI symptoms, signs and imaging.

 

[Jonathan Edwards]

implicates vagus nerve, which can be compressed by CCI, as the nexus for the communication between peripheral inflammation and the brain.

As I pointed out earlier, the vagus nerve goes nowhere near the cervical canal so this is just anatomically wrong.

Doesn't certain headache make some people light-sensitive?

Meningitis does but that is not CCI. All I hear are attempts to make connections that are based on lack of basic knowledge of neurology.

Maybe it's a cultural thing but I find it hard to understand how anyone can take this sort of bogus medicine seriously.