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

No not really. Sadly!!

 

Yes, I had assumed that as surgeons they were thinking of doing some surgery - surgeons tend not to be interested in anything else much. Otherwise all it seems they can do is measure necks and say they do not need surgery. But then they will just get a reputation for being stuffy and conservative with the referring physicians currently sending people to Spain. OrBolognese wills that they are not studying the right people. Maybe they can gather some useful data but as long as physicians want to refer to active surgeons I see the problem continuing.

 

I'm not sure why he's considering it either. He did operate on 4 people a year ago who had clear abnormalities. 3 of them had no significant improvements so far. Maybe after operating on them he is having second thoughts on conducting that study as a whole?

 

Merged thread
In my opinion there is not enough existing research that allows us to conclusively reject or confirm the theory that ME/CFS (or a subset) is caused by mechanical or structural problems.

However, the fact that mental PEM occurs in many pwmer's makes me think these theories might be wrong. Namely, mechanical theories can explain exercise induced PEM as an effect of movement affecting the problematic joints, veins, structures, etc. However as we all know many people get PEM from 100% non-mechanical activities, such as socialising, studying, strong emotions, mental stress, etc. So if a person gets this kind of PEM how could it be explained by a mechanical problem?

It seems to me that the existance of mental PEM points to a problem that's rooted at a smaller scale, i.e. at a molecular level.

Then again who knows, there might be some very complicated mechanism / pathway that explains how a mechanical problem can cause people to experience mental PEM, we simply need more research.

What do you guys think? How could the existance of mental PEM be explained by a mechanical problem?

 

A line of research that I've been interested in for awhile is pretty well described in this article (with a very cool animation):

Quanta Magazine: Sleeping Brain Waves Draw a Healthy Bath for Neurons

Basically, one might speculate that the failure of brain flushing while sleeping could be due to various causes, or a combination of those causes, such as blood supply problems, CSF-pressure problems, blockage of the newly-discovered, glymphatic, drainage system or something less mechanical. But whatever the inefficiencies might be due to, they could all lead to poor sleep and therefore to your "mental PEM" (and just persistent, mental fatigue/fog). Obviously, sleep failure is a huge thing in ME/CFS. It's a plausible idea to me, as an untrained person, but if there is a good argument against it, I'd like to hear about it.

 

I think we can be 99% certain that ME/CFS symptoms are not due to mechanical spinal problems simply because physicians and surgeons have looked after hundreds of thousands of people with such problems, some much much more severe than anything seen on an MRI in a person with ME and these patients do not have ME symptoms.

The stuff about sleep removing toxins through lymphatics sounds pretty half-baked to me. Some researchers have measured something and want it to sound important and new but the idea that 'toxins' build up can are 'washed out' seems pretty much a fantasy.

What I think might make more sense is that changes in nerve cells that hold short term memory need to be cleaned out every night - or turned into long term memory if wanted. That would be a bit like taking the pieces off a Scrabble board at the end of the game so that you can play a new game tomorrow.

This would not really be a molecular level. It certainly would not be washing toxins. It would be at a 'polymolecular' level - a little bit like genes, which are not just single DNA bases but strings of them. The difference would be that short term memory would be laid down in 'stacks' of protein molecules, like the Tau protein of relevance to Alzheimer's. DNA isn all one long poly molecule. These would be weakly polymerised chains of separate protein molecules - which is what amyloid is. More like the letters in Scrabble or houses built with Lego bricks.

I have just published a paper in Journal of Consciousness Studies making use of this idea. It links in with why anaesthetics make our mental pictures disappear.

 

Good point.

While popular magazines do like to bandy the word "toxins" about, metabolic waste products are a thing, as I understand it. As is this "glymphatic" system, even if it is yet to be well descibed.

As someone who has been trying--and consistently failing--for years to stow the latch on my door when I go out, to leave it unlocked, before I go out the doorway, I appreciate your efforts to wrestle with the big question of memory. How sleep is involved with memory being a very open question does leave the door open to the question of how it may be disrupted in ME/CFS so I appreciate all the work going on in the CSF Dynamics field.

 

When a person wakes up from CCI/mechanical "ME" surgery and knows instantly that they no longer have PEM (mental or physical), then that is a pretty good indication that it's not the PEM I'm suffering from.

 

I am sure the brain lymphatic system is real. I am a bit doubtful that anyone ever said there was none - people like to sound new.
But lymphatics have nothing to do with removing waste products as far as I know. Waste products are removed by molecular exchange with blood vessels, just as nutrients are. Lymphatics are involved in traffic of policing leucocytes and tissue water content.

 

Opioid-Free Anesthesia Plus Postoperative Management Focused on Anti-
Hyperalgesia Approach in Patients with Joint Hypermobility Syndrome Undergoing
Occipital-Cervical Fixation: A Narrative Review and Authors' Perspective.

By Gilete et al.

 

(This comment is not in response to anything posted above, I just wanted to report some stuff and now that this thread is front page again, I figured that I will do so now.)

As a patient in the USA, and as someone who is still trying to figure out what is wrong with my body, this ongoing CCI topic is continuing to be really frustrating for me.

I have a clinician who mainly focuses on tick borne infections, who I have been seeing for a long time. I was surprised to hear that he is now “screening” patients, so to speak, for CCI/AAI/Chiari/whatever we are calling these issues.

From my conversation with him, it seems like these ideas are continuing to gain steam with some ME/CFS clinicians, despite the fact that we still don’t have any evidence beyond just a theory.

From what I hear there is some ongoing collaboration between clinicians focused on ME/CFS and Dr. Bolognese, the neurosurgeon.

on a personal level this frustrates me because if these ideas have credence, I would like to be able to be assessed so that I can rule in or rule out the possibility that I have some “mechanical” aspect to my illness. But as it stands, I would not trust a diagnosis that can apparently only be given by like 3 neurosurgeons in the world.

On a broader level, i am annoyed that important steps of scientific inquiry are skipped over.

 

I would hope that they are 'screening' patients to r/o CCI/AAI/Chiari? I knew a women who was dx with ME for 10 years and later dx with Chiari, she had surgery and recovered completely.

 

I think the process is traction -> upright MRI -> send scans to Bolognese.

My practitioner noted that one should always be careful when asking a surgeon whether or not surgery is indicated. But they also said that since Bolognese is already in such high demand, he wouldn’t need to over-diagnose.

I’ll need some better logic, personally. I didn’t even want to bring up the lawsuits etc

 

@5vforest I feel exactly the same. I have an upcoming appointment with a new doctor, and was concerned when I recently read a PwME’s account of her first appointment with this doctor because among the recommendations was an mri to screen for cci.

I’ve decided I am not going to do anything on that issue until more research is done. The theories about cci and me have huge gaps in logic, and I definitely am not going to put my life in the hands of Dr Bolognese.

It’s worth noting that business has increased for Drs Bolognese, Gillette, and Kaufman (and the other doctors in his practice). A lot of people are making a lot of money.

 

You wouldn’t have a link to that thread, would you?

 

were these related to ME or other things?

 

@vsou I suspect we might be talking about the same docs. There definitely seems to be an “in-crowd” that has formed.

 

Good question. I know one had an accident at some point. The others I don't know. They were all (severe) ME patients though.

There's now criticism on the technique he's using. He doesn't do any in operative traction and doesn't fix the C1. I have no idea how much of a difference it makes.