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

[Jonathan Edwards]

I wonder if the CCI cases imitating ME/CFS was caused by compressing or stretching vagal ganglia nerve (signal malfunction)

I don't think we have any reliable evidence for CCI mimicking ME/CFS. CCI has been handled clinically for decades without any suggestion it mimics ME/CFS. It produces weakness and numbness in the limbs. Compression of the medulla where the vagus nerve enters produces other serious neurological disturbances but not ME/CFS. I have yet to see any images of people with ME/CFS type presentation that actually show CCI.

 

[poetinsf]

I don't think we have any reliable evidence for CCI mimicking ME/CFS.

I didn't mean all CCI cases present ME/CFS symptoms. But there are a few documented cases of recovering after CCI surgery from what they thought was ME/CFS. Were they coincidences? Maybe. Having a few makes it worth looking into those cases though. Since the paper implicates vagal ganglia nerve in body/brain immune communication, and vagal ganglia nerve gets effected by CCI, it makes it worth inquiring even more. There isn't much reliable evidence for anything anyway, and this line of inquiry is as good as any as far as I'm concerned.

 

[Jonathan Edwards]

I didn't mean all CCI cases present ME/CFS symptoms. But there are a few documented cases of recovering after CCI surgery from what they thought was ME/CFS. Were they coincidences? Maybe. Having a few makes it worth looking into those cases though.

I have spent a lot of time looking into those cases and find no credible evidence for symptoms of ME/CFS being related to CCI. There are all sorts of reasons why people get better when they do, which is why we do trials.

In fact it seems that many of these people did not recover after CCI surgery but needed another operation for so-called 'tethered cord' before they 'recovered'. The evidence I see is on a par with taking bleach to stop Covid. There were never pictures of this 'CCI' that I was aware of.

I may appear over-sceptical but when it is so easy on social media to spread memes about procedures that are likely to cause unnecessary deaths in a few and major loss of function in all cases (neck immobilisation) I think it is best to err on the side of caution.

 

[poetinsf]

I may appear over-sceptical but when it is so easy on social media to spread memes about procedures that are likely to cause unnecessary deaths in a few and major loss of function in all cases (neck immobilisation) I think it is best to err on the side of caution.

You are taking the clinical view while I'm suggesting research. I don't think anybody in their right mind would suggest CCI surgery as a solution for ME/CFS. But exceptional cases often shed light on intractable diseases, and I suspect will be the case for ME/CFS research which has been forever rehashing downstream symptoms.

The fact that Jenn Brea went on to TCS surgery does not make it comparable to Trumpian Clorox injection for COVID. She already went into remission after CCI surgery, and TCS or hypermobility probably was a red herring. So CCI's effect on brainstem, and now on vagal ganglia nerve, might be worthwhile looking into. Or Melissa Wright's case of recovery after the surgery for intracranial hypertension. I certainly think that would be more productive than again chasing the viral cause as Iwasaki seems to be doing over at Yale. If nothing, it could at least lead to the elimination of neural hypothesis of ME/CFS.

 

[Jonathan Edwards]

But exceptional cases often shed light on intractable diseases

You are taking the clinical view while I'm suggesting research.

I am actually discussing this in the research context of what might tell us something useful - but the costs to people's lives are always relevant in research.

I don't think these cases are that exceptional in the broad context. With an illness so poorly understood and managed as ME/CFS I think it was totally unremarkable that some people should report feeling better after neck surgery and that others should follow them. People have reported feeling better after a whole range of other implausibly related events. As far as I know we have absolutely no neurological confirmation of any biological effect of the surgery in any of the cases - unsurprisingly since there were no neurological problems recorded beforehand.

You can trace back the meme for this for a couple of decades and it follows the usual pattern of nothing actually adding up when you look at it carefully.

 

[poetinsf]

As far as I know we have absolutely no neurological confirmation of any biological effect of the surgery in any of the cases - unsurprisingly since there were no neurological problems recorded beforehand.

Has anybody looked into CCI's effect on vagal Ganglia nerve? Or Intracranial pressure on neuroimmune system? Feel free to point me to them. We are not going to have any confirmation till we look. And you can't say there were no neurological problems beforehand since we don't know if ME/CFS is neurological or not.

You can trace back the meme for this

I don't know why you keep calling it meme. There are only 3 cases that I'm aware of. What other cases are there?

 

[Jonathan Edwards]

vagal Ganglia nerve?

There is no vagal ganglia nerve. There is a vagus nerve that connects proximally to grey matter areas in the medulla that may sometimes be called ganglia, although more often nuclei, and distally to cell groups known as ganglia around the gut etc.

neuroimmune system?

There is no neuroimmune system other than the nervous system and the immune system and the way they interact. Pressure from CCI is on the lower medulla where it joins spinal cord. The pathology has been known for over a century, as has have clinical signs and symptoms. What more are you wanting to look for?

And you can't say there were no neurological problems beforehand since we don't know if ME/CFS is neurological or not.

I am referring to neurological problems attributable to CCI, as document for the last 100 years as above. None of these cases as far as I know had any evidence of what patients with CCI had in my clinic or in the textbooks. Things like upgoing plantar responses or sphincter failure.

 

[Jonathan Edwards]

I don't know why you keep calling it meme. There are only 3 cases that I'm aware of. What other cases are there?

There are way more than three people who have been referred for this surgery. They surface on social media crowdfunding for support. Most of them we hear nothing about afterwards.

 

[Kitty]

The was also one person who said they supplied information about "CCI" and enabled communication between interested patients and surgeons, in return for a consultation fee.

I don't know how long they continued with it, or whether it's still happening.

 

[DMissa]

Relevant to discussions raised in DecodeME thread https://www.s4me.info/threads/initi...2025-decodeme-collaboration.45490/post-646493

 

[Jonathan Edwards]

Relevant to discussions raised in DecodeME thread https://www.s4me.info/threads/initi...2025-decodeme-collaboration.45490/post-646493

In the absence of any evidence of medullary impingement or other neurological signs I can't see that putative CCI can influence immune responses. I still do not understand what is supposed to occur in these people, whose bones are in the right place and spinal cord undeformed but are supposed to suffer from perhaps intermittent medullary trauma from sudden uncontrolled movements or something? I just don't see any coherent story. People I have managed with CCI who get medullary trauma on sudden movement have episodes of unconsciousness and in between have neurological signs and radiological abnormalities. I have probably looked after scores or even hundreds of RA patients with milder CCI. None of them had ME/CCFS.

 

[Eddie]

In the absence of any evidence of medullary impingement or other neurological signs I can't see that putative CCI can influence immune responses. I still do not understand what is supposed to occur in these people, whose bones are in the right place and spinal cord undeformed but are supposed to suffer from perhaps intermittent medullary trauma from sudden uncontrolled movements or something? I just don't see any coherent story. People I have managed with CCI who get medullary trauma on sudden movement have episodes of unconsciousness and in between have neurological signs and radiological abnormalities. I have probably looked after scores or even hundreds of RA patients with milder CCI. None of them had ME/CCFS.

Is it possible that the spinal cord is unaffected but instead some other nerve in the neck is getting compressed? Do we have any idea if repeated compression of something like the Vagus nerve could cause ME/CFS like symptoms? I really have no idea just thinking about if this surgery could be having some other unintended effect.

 

[Jonathan Edwards]

Is it possible that the spinal cord is unaffected but instead some other nerve in the neck is getting compressed? Do we have any idea if repeated compression of something like the Vagus nerve could cause ME/CFS like symptoms? I really have no idea just thinking about if this surgery could be having some other unintended effect.

No, all the cranial nerves pass through soft tissues and enter the brain through holes in the skull. The bit of the cervical spine that is supposed to be unstable doesn't affect them. The vagus enters through the jugular foramen. Someone I know has recently had a fracture of the jugular foramen with compression of the vagus nerve. They cannot speak or cough properly because it supplies the larynx. Surgeons used to cut the vagus nerve (a bit lower down) as a treatment for stomach ulcers. It did not cause ME/CFS.

I do sometimes get things wrong but all this stuff seems to me like complete nonsense based on lack of understanding of neuroanatomy at a student level.

 

[poetinsf]

There are way more than three people who have been referred for this surgery. They surface on social media crowdfunding for support. Most of them we hear nothing about afterwards.

I'm afraid you are keep missing the point. We are not talking about the surgery as a solution to ME/CFS. The three cases I'm talking about did not come about because they were referred for the surgery to fix ME/CFS. They happened unexpectedly and that's what makes those cases worthwhile looking into. Some people taking advantage of it subsequently does not make those cases illegit.

 

[poetinsf]

There is no neuroimmune system other than the nervous system and the immune system and the way they interact. Pressure from CCI is on the lower medulla where it joins spinal cord. The pathology has been known for over a century, as has have clinical signs and symptoms. What more are you wanting to look for?

In all three cases, ME/CFS symptom disappeared after relieving that pressure. Can that pressure make neurology/neuroimmunology hypersensitive to peripheral inflammation? That's a natural question to ask given the cases.

I am referring to neurological problems attributable to CCI, as document for the last 100 years as above. None of these cases as far as I know had any evidence of what patients with CCI had in my clinic or in the textbooks.

That's how scientific progression is typically made, by someone looking into what's not looked at for the past 100 years in the textbooks.

 

[Jonathan Edwards]

I'm afraid you are keep missing the point. We are not talking about the surgery as a solution to ME/CFS. The three cases I'm talking about did not come about because they were referred for the surgery to fix ME/CFS. They happened unexpectedly and that's what makes those cases worthwhile looking into.

I don't quite follow. These were people with ME/CFS presumably, if their ME/CFS got better. If they had some other reason to have neck surgery they ought to have had some fairly serious neuropathology. Relief of that might well make the ME/CFS seem better, surely? Having cord compression on top of ME/CFS would make things even more difficult. I am unclear who these cases were supposed to be.

 

[Jonathan Edwards]

In all three cases, ME/CFS symptom disappeared after relieving that pressure. Can that pressure make neurology/neuroimmunology hypersensitive to peripheral inflammation? That's a natural question to ask given the cases.

No it doesn't. We know that from having looked after thousands of cases of CCI.

That's how scientific progression is typically made, by someone looking into what's not looked at for the past 100 years in the textbooks.

But we are talking about people not bothering to look at what has been in the textbooks for 100 years. Science does not get far that way.

None of these comments of yours actually address the point I was making that none of this makes sense in terms of the science we already have and there is no public evidence to suggest we should take these cases seriously as pointers to ME/CFS pathology. Where are the pictures that even show these was compression? I haven't seen any.

 

[Hutan]

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.

As others have said, we are aware of people with ME/CFS-type symptoms who were going to have the surgery who either did not improve or who dropped out of social media. Some of these people raised funds for the operation on social media, so, if the surgery had fixed them, I would have expected that they would have publicised the success a lot.

There are red flags around the key providers of this surgery for people with ME/CFS symptoms. The evidence we have isn't stacking up to support the surgery as a credible treatment. So, I don't think it's useful to be trying to join the dots between the surgery and possible causes of ME/CFS.

 

[poetinsf]

No it doesn't. We know that from having looked after thousands of cases of CCI.

They probably said same thing about ME/CFS about 100 years ago when they called it a hysteria: no infection or physical stress can cause ME/CFS, after looking at thousands of cases. But what if one in 10,000 cases does? Not all infections trigger ME/CFS. Similarly, not all intracranial pressures may result in ME/CFS symptoms. But the ones that do may shed some light on ME/CFS, if they indeed exist.

 

[Jonathan Edwards]

Similarly, not all intracranial pressures may result in ME/CFS symptoms.

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.

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?