A body–brain circuit that regulates body inflammatory responses 2024 Jin et al

[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.