Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

GloriaDG said:
"According to Rosario Maugeri, MD, PhD, of the University of Palermo, “Cervical spine involvement in RA is often a silent condition. Even in the presence of severe cervical spine damage, many patients may be asymptomatic.”

So, purely basing epidemiological studies on the prevalence of spinal issues in the ME community on the comparison of measurements between patients and healthy control, like it's being suggested here, would not be enough, as we don't understand yet why some people are asymptomatic and some not having the same spinal presentation.
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Yes, the quote from Maugeri is what we all know for RA. But that is not relevant. Physicians have looked after thousands and thousands of RA patients with cervical problems of all levels of severity and when they have symptoms they are not in any way confusable with ME. They fit with the anatomical pathology. I have no idea how the ME picture could fit with the anatomy of cervical lesions, particularly in terms of time profile.

Epidemiological studies would of course not be enough but without them you have no reason even to think there is a real association. Establishing cause needs more than correlation but with no correlation cause is pretty hard to argue. The fact that some people are more symptomatic than others evens out in a properly controlled study so I don't see the relevance of that argument.
 
I realise that the terminology for upper cervical problems may be ambiguous and I may have confused people, including myself.

I have read CCI to indicate problems from occiput to C2 (axis), maybe because this is the segment fused in most surgery and occiput-C1(atlas)-C2 (axis) tends to be seen as a single pathology domain in RA.

However, in RA the critical problem is nearly always C1-C2, which is Atlanta-axial instability (AAI) rather than Atlanta-occipital. I think when people contrast CCI with AAI they may use CCI to mean just C1-occiput.

So that got me thinking about CCI in this limited sense. It is known to occur in major trauma. I might well occur where there is bone dysplasia or erosion. However, nobody has suggested that any of the images on patients with a diagnosis of ME involve traumatic change or bone dysplasia or erosion. Ligament laxity from bone erosion from inflammation would show up like a sore thumb on both plain x-ray and MRI and nobody has mentioned even a hint of such inflammation of scans.

So I am wondering if CCI in this limited sense, in the absence of bone pathology, is ever a real cause of clinical problems. I don't know. I have no experience of any such cases but may be there are some. Or maybe there aren't. I wonder if anyone knows?

The reasons I raise this is the chin on chest business. If cervical flexion is normally limited by muscle reflexes and chin hitting chest why would ligamentous laxity be a problem except in high impact trauma?

Has this been discussed in the spine groups and does anyone know if we know that such a problem exists?
 
Jonathan Edwards said:
The reasons I raise this is the chin on chest business. If cervical flexion is normally limited by muscle reflexes and chin hitting chest why would ligamentous laxity be a problem except in high impact trauma?
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A question. You talk about flexion, but what about extension. Is that similarly limited by the back of the skull hitting the back, or does it need to be stopped before that by ligaments, or is that irrelevant. Is the so called 'bobble head' I've heard mentioned referring to the head tipping too far forward, or too far back?

Edit: I don't want to test this by seeing how far back I can tip my head.
 
Trish said:
A question. You talk about flexion, but what about extension. Is that similarly limited by the back of the skull hitting the back, or does it need to be stopped before that by ligaments, or is that irrelevant. Is the so called 'bobble head' I've heard mentioned referring to the head tipping too far forward, or too far back?

Edit: I don't want to test this by seeing how far back I can tip my head.
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Yes - and people with this type of CCI say that it’s the tipping the head back which is causing them problems. Jen B says her condition got worse following intubation. Jeff says it got worse following dentistry. I notice @Jonathan Edwards you only ever mention the head tipping forwards. But it’s always going backwards that these patients complain about. Even for example doing the upright MRI scan and worsening after pushing their head back. Ive been thinking about this for a while. Can you think why? What is a possible mechanism there? And how could that fit into ligaments around the neck?

I think the theory is tipping the head back puts pressure on the brainstem.
 
Trish said:
A question. You talk about flexion, but what about extension. Is that similarly limited by the back of the skull hitting the back, or does it need to be stopped before that by ligaments, or is that irrelevant. Is the so called 'bobble head' I've heard mentioned referring to the head tipping too far forward, or too far back?
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lunarainbows said:
Yes - and people with this type of CCI say that it’s the tipping the head back which is causing them problems.
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Very good point. For AAI it is forward that is the problem. Backwards the abnormal AA gap closes to normal position. I had assumed that the surgeons were also worried about forward slip for CCI because that is what the CXA seems to me to measure - excessive forward tilt.

Lots of normal people get unpleasant symptoms putting their head back. This has been blamed on kinking of the vertebral arteries - which for some bizarre reason run up through the sides of the vertebrae. But it may be a vestibular signal that is normally there to prevent falling backwards.

But maybe the problem for CCI is compression because of backward slip of the occiput on the atlas. But I got the impression that traction moved the head back from the resting position - at least as judged by CXA. And I have seen no reference to backward slip of occiput on atlas in imaging studies as far as I can remember.

It is simple things like this that we need to be clear about. Whenever I have tried to raise issues about the mechanics with those who promote the CCI idea I get no specific answers. Maybe everything will suddenly become clear.
 
Jonathan Edwards said:
The puzzle for me is why people should want to keep trying to find reasons for thinking CCI might be important in ME when we have absolutely no published evidence of any value that indicates that. The onus is on people developing such ideas to present some evidence in support.
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This is what I was thinking. It’s fine for there to be a theory but why haven’t the surgeons published the evidence? No, seriously, why, when it’s been decades for some of them? This is what, more than anything, makes me feel the most sceptical.

Why do we still not have one blinded study with a large sample with the measurements between healthy people and those who the surgeons diagnose with CCI? We get told: these are the cut off measurements for sick patients, these are the cut off measurements for healthy patients, what good evidence is that based on? If there is, genuinely I’m asking someone to post it. It’s actually really easy for the surgeons to get this data. They must know as they’re basing it on something.

How about MRIs comparing healthy vs CCI/structural issues, and just all the data the surgeons have so far.

Or if we are only talking about symptoms, as some say symptoms are more important than MRI and now it’s about traction. Then why are they not showing what exactly traction does and what dose, in dose dependent trials? I’m sure the surgeons are really smart so they surely know to do this. Dr Bolognese says “if you feel better after traction come back to see me”. What does that mean? I’m not even talking about ME but about CCI in general.

Just something other than case studies of their own patients who they’ve diagnosed using their own criteria and done surgeries that other surgeons don’t do. The reason the onus is on them to do this is because they are diagnosing and operating in this way. Maybe there’s something to it and they really have found something in hypermobile patients, EDS and now with ME. Let’s say they do know something the rest of the world doesn’t and only they can do it. In that case why isn’t it out there?!

The thing is, no one ever answers this question. I keep asking it. I only ever see J Brea saying that they’ve only had a few years to do it. No they’ve had decades. Or she says they’re artisans.
 
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Jonathan Edwards said:
Physicians have looked after thousands and thousands of RA patients with cervical problems of all levels of severity and when they have symptoms they are not in any way confusable with ME.
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I've just replied to you about that in another thread - have these studies ever included people with both RA and ME? Because if they never included ME patients, of course these patients never presented with an ME clinical picture.

Jonathan Edwards said:
The fact that some people are more symptomatic than others evens out in a properly controlled study so I don't see the relevance of that argument.
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I included this information because you earlier suggested that EDS neurosurgeons are making up the theory that CCI shouldn't be assessed solely on measurements, as the clinical picture is probably more important, to bypass the need to justify surgical decisions in patients with the same measurements as healthy people. I just wanted to clarify that this concept is not new in mainstream medicine, as the statement from Maugeri confirms that measurements don't determine necessary the clinical picture and therefore the surgical decision.
 
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GloriaDG said:
I've just replied to you about that in another thread - have these studies ever included people with both RA and ME? Because if they never included ME patients, of course these patients never presented with an ME clinical picture.
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I am not talking about studies, merely about clinical experience and the point is that if people had RA and symptoms of ME they would need to be seen by somebody.


GloriaDG said:
I included this information because you earlier suggested that EDS neurosurgeons are making up the theory that CCI shouldn't be assessed solely on measurements, as the clinical picture is probably more important, to bypass the need to justify surgical decisions in patients with the same measurements as healthy people. I just wanted to clarify that this concept is not new in mainstream medicine, as the statement from Maugeri confirms that measurements don't determine necessary the clinical picture and therefore the surgical decision.
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Sorry but this does not make sense to me. Clinical features are paramount much of the time. But the surgeons are doing a bait and switch because they are using symptoms that are not diagnostic of CCI but rather diagnostic of ME.
 
Jonathan Edwards said:
But the surgeons are doing a bait and switch because they are using symptoms that are not diagnostic of CCI but rather diagnostic of ME.
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Unless the CCI literature we been relying upon up until now is actually incomplete and therefore outdated, as I mentioned in my previous comments. Also, they don't base their diagnosing criteria on ME symptoms, it just happened that those symptoms are the same of ME. They've been diagnosing patients with CCI in the EDS population using those symptoms way before Jeff and Jen entered the picture.
 
lunarainbows said:
This is what I was thinking. It’s fine for there to be a theory but why haven’t the surgeons published the evidence? No, seriously, why, when it’s been decades for some of them? This is what, more than anything, makes me feel the most sceptical.
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What surgeons have been operating on CCI in ME for decades?
 
lunarainbows said:
I didn’t say CCI in ME for decades. I said CCI. Infact I even wrote in my post “I’m not even talking about ME but about CCI in general.”. Dr Bolognese has been operating on patients for decades, and giving diagnoses to patients that other neurosurgeons don’t.
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The post you directly responded to was talking about "[finding] reasons for thinking CCI might be important in ME." I don't understand what kind of relevant information you want from surgeons who have been operating on CCI in general for decades. I don't think anyone is calling into question the appropriateness of operating on patients with CCI from trauma, and I doubt the surgeons doing that are operating based on patients' feelings during traction (happy to be told otherwise if that's not true). Bolognese is one person--who are "the surgeons" who've been doing this for decades?
 
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Jonathan Edwards said:
I know. This is part of the problem.
I am sorry to say that PWME have been served badly in that a number of physicians who have moved in to the field are pretty uncritical about what they believe in. I never practiced in the field and when I started getting involved in the ME research scene I recognised maybe three or four competent groups - really no more than that. Almost the whole academic scene in ME has been 'fringe' for too long. We need some proper science.
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Your comment "PwME have been badly served" reads as if your statement applies to all those authors. Is that your intention?

PwME have no standard of care. In all cases, it is up to the patient to decide what information is relevant in the care of one's own body and to do so critically - whether diet, medication, surgery or otherwise.

I do not know what you define as 'proper science' but as a patient, collaboration with relevant patient population is important.
 
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Jonathan Edwards said:
Dear @Bjorn Bragee,
...
That may sound harsh but ...
If you are as concerned as I am about unwarranted surgery, I would make a plea to withdraw this paper. It may do untold harm and lead to deaths. Jennifer Brea is almost certain to capitalise on it.
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I've not read the paper yet, but given what I've seen of academic culture, asking for a paper to be withdrawn because it could be misused to promote a surgery that the authors have not promoted themselves seems a bit of a stretch! If it is that it's already made clear these results are just preliminary, and should not affect patient care, then imo it makes sense to focus on trying to prevent them being misused rather than calling for them to be retracted.
 
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Please keep posts in this thread at least somewhat focused on the Bragée et al paper.
More general discussions related to spinal issues and ME, especially those related to how ideas are communicated and promoted should be made elsewhere so that conversations aren't repeated.

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

Structural spinal problems and ME - blogs and social media. Members Only thread
 
That screenshot by Michael van Elzakker is too small for me to read. Is there any way of enlarging it?
 
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