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

I think you will find this interesting https://www.sciencealert.com/hidden...ound-in-bones-is-totally-crazy-scientists-say

 

This is from a conversation with @JenB :




but more important -for this hypothesis- is the following :





It seems to me that a next step for Jen could be to look again at her Bile acid metabolism and if it has corrected then it raises our suspicion that her CCI may have also affected Bile acid metabolism. After the correction the Vagus nerve can send the right signals to Liver and Gallbladder to work as expected.

 

Maybe that is why my bones hurt during flares.

 

I am very discomforted by what is happening, here.

Around 10 years ago, I recall a prominent, well respected U.S. patient advocate emailing me to persuade me that I owed it to my son to get him tested for XMRV.

I had not bought into the hype around the test at the time and had many concerns about the way in which the test was being prematurely marketed in the U.S. and beyond. I wasn't prepared to invest £600* on an unvalidated blood test, that if returned as "positive for XMRV" no NHS clinician would give credence to, anyway, and for which there would be no treatment available.

The hype that is building around these accounts of neck surgery concerns me considerably more.

*I'm relying on memory for the cost of the test to UK residents, at that time. If this figure is wrong, I stand corrected.

 

a basic Google search for the last 24 hours and I get
"
Searches related to myalgic encephalomyelitis chronic fatigue syndrome me cfs
craniocervical instability symptoms

craniocervical instability surgery

craniocervical instability prognosis

virology course

tuller me cfs

craniocervical instability brace

virology blog

craniocervical instability cfs "

pleased about the virology blog, but disturbed by the overwhelming dominance of CCI searches.

 

I feel that ME is being rebranded - pun intended - as CCI. It is indeed concerning.

 

Two thoughts:
Ideas come along. If they go viral they meant something. That certainly does not always mean good (XMRV, fats causing heart disease, ME is psychosomatic, MS is hysterical paralysis, Narcolepsy is repressed memories, the list goes on of bad conclusions) but if we want no ideas then we will have no progress. Validation is critically important but if we close our eyes in case bad ideas come along then we shut out the good ones as well. That said once again validation, even a third time, validation.
I personally doubt i have CCI. If i could get tested and verify then i'm good to go. If i get tested, proven i have it and the non invasive test proves it i'm in a pickle. Then i have to decide whats more important, living like this and getting worse or going with a very unconventional treatment. Ignorance is not bliss however, if this is what i have then waiting for an ME treatment and it doesn't work on me would waste years or decades of my life on the wrong diagnosis that i closed my eyes to.
That said its a lot of money and headache to get this tested. Those who chose not to because they don't think they have this, or can't afford it etc i can completely understand.

Second, i think this is more based on worry then anything else. No one was even cured of XMRV since it did not exist. We have several improvements from this procedure. Also there is a non invasive test to see if its going to do you any good. If you don't have it and the imaging shows it then you don't have it. If you have it but its not the cause of your symptoms then the test to non invasively treat it should get you no results.
This is not akin to homeopathy. But it is scary stuff.

 

I also thought of what Ron Davies has found with the blood cells not being squidgy enough? It opens up a whole lot of questions. I have sent it to him so will wait and see what he says.

 

You are strawmanning, Alvin.

My concern is not about "ideas" nor am I suggesting suppression of "ideas".

My concern is about the way in which this small number of surgeries is being presented to the public and how some people are responding to its presentation.

Edited for clarity.

 

Jonathan Edwards expressed concern about this earlier in the thread (mentioned twice, I think?). If my memory's right.



Does anyone know if CCI surgery is done much on children? (thinking of how children grow and the rigid metal structure that's implanted)

 

Please elaborate?

 

It saddens me to see this sort of report @Tilly.

I have known about these small vessels in bone cortex since I trained in pathology in the 1980s. The peer review system is now so broken that re-inventing of wheels is almost all there is. These vessels have nothing to do with spreading immune cells either, because that is done by large vessels exiting red marrow through foramina known since Roman times.

It doesn't seem to have anything to do with mast cells.

 

I don't need to.

 

What do you think should be done about the CCI issue?

 

Agree. If I would have set up a family/friends screening they would have empathized with JB and would have concluded(secretly) that I'm the one suffering from hysteria or a psychosomatic disorder.

 

Studies and a disclaimer from those that have recovered from their ME that patients should add caution when making a decision about surgery, not to base it on ME alone and that more studies need to be made before we Link ME to CCI. I think severity needs to come to play when making a decision too.

I will interested to see what the outcome of studies would be and I definitely think it needs to be looked at.

 

I don't think anyone can argue with wanting more studies.

 

For me the problem is that we do not have any studies to have more of.

So far I have not seen even an informal public comment from anyone medically qualified endorsing the patients' account of what the diagnosis was, why it was made and its relation to improvement. I am not saying that patients' accounts of their progress are in any way invalid but the medical interpretation needs to be made by someone who understands the medical aspects.

From my perspective we need imaging studies with clinical correlates before suggesting any relation between CCI and ME.

 

IMO, a blinded study where neurologists/neurosurgeons who are not affiliated with those clinics performing surgeries on ME patients rate MRIs of ME patients and normal controls for presence of CCI.

 

I was going to leave this thread alone. But the interesting thing is,yes, while the response to traction and other clinical signs are used to recommend surgery, the imaging itself is something that many people can learn to rate. You can look up how to measure a clivo axial angle or grabbe Oakes measurement on someone’s mri. So I would say, as long as the study you’re talking about involves those objective diagnostic signs, why not have it be just any neurosurgeon. The problem is, in a clinical sense, many of these patients would get laughed out of the office because they did not have head trauma or EDS. And many radiologists don’t even use these angles, and just seem to be eyeballing the scans. So, this is something to be aware of.

I love that this discussion is happening. Debate and brainstorming are both important things and I value that each forum has a different focus.