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

Jonathan Edwards said:
Surgical trials can be blinded using sham procedures. That has practical difficulties and major ethical difficulties but it has been done in the past in some situations.

But I am not sure that a trial of surgery is needed. If the surgical immobilisation goes ahead on the basis of there being a relief of symptoms with traction, which I understand is the routine here, then the obvious ting to do is a blinded trial of traction and sham traction - which could include dose response features with partial traction. There are devices that ensure traction 24/7 for extended periods I believe.

Before there is any talk of a trial the clinical and radiological evidence of CCI should be made public in a publication. In fact that evidence should have been public long ago and there should have been a trial of prolonged traction, not surgery.

If an ethical review board (IRB) had ever been involved in this we should have the relevant information now. It looks as if it never was. Why not?

A worrying question is why other neurosurgeons have not called this out. I fear the answer is because neurosurgeons operate without good reasons all the time. I have had one neurosurgical operation that in hindsight I realise I should never have had. Recently I was offered another one but I concluded that there was no good justification for that either. And this was in area of routine surgery of the sort done by the tens of thousands.
Click to expand...
Would people not be able to feel whether or not they were experiencing traction??
 
Hutan said:
Another sort of trial might be to have three groups- 1. healthy controls, 2. people with diagnosed ME with self-reported high level of a list of CCI symptoms/neck trauma history, 3. people with diagnosed ME with self-reported low level of CCI symptoms and relevant history.

Give them all standing MRIs. Then, in a blinded assessment, see if anyone can find any differences.
Click to expand...
But if it is only a small subset of ME-diagnosed people who have these abnormalities on MRI, then you'd need a rather large sample of PWME in order to be sure to catch them.
 
Ron Davis recently asked pwME who were going to have CCI surgery to get in contact, I think with a view to doing before/after blood tests(?) ie nanoneedle. Hopefully if he does this it will be in addition to the original proposed testing with other illnesses (eg MS). Also recently JD on twitter said that they were sending WDs MRI to a neuro surgeon to look at (?). It could be a game changer one way or the other.
Hopefully, whatever the results, they will be a bit more responsible in how the information is disseminated to the ME community.
 
Sarah94 said:
Would people not be able to feel whether or not they were experiencing traction??
Click to expand...

Not necessarily. It would probably be quite easy to break down the effects of traction into different components - restriction of rotation, restriction of flexion, distraction of the CC junction, etc etc. You then need to show that relief of symptoms correlates with some specific aspect. This is the sort of thing that drug studies routinely do before anyone takes them seriously. You compare closely related drugs to see what features of the molecule are necessary for an effect. You do a dose response and require that effect correlates with some particular level. All those sorts of things can be done with something like traction. They are routinely done for testing children's car seats and things like that. I suspect that there are people who would have no problem devising suitable control sham procedures in bionic limb research departments.
 
Sarah94 said:
But if it is only a small subset of ME-diagnosed people who have these abnormalities on MRI, then you'd need a rather large sample of PWME in order to be sure to catch them.
Click to expand...

That is why it would be telling to include the MRIs of those who have had surgery.
And if a high proportion of MRI scans are reported as showing CCI by the private radiologists involved in referral for surgery then there is no need to search for hundreds more. You simply mix these MRIs up with normal people's ones and show them to radiologists blind - both the private radiologists who reported them to begin with and some others.
 
Sly Saint said:
Ron Davis recently asked pwME who were going to have CCI surgery to get in contact, I think with a view to doing before/after blood tests(?) ie nanoneedle. Hopefully if he does this it will be in addition to the original proposed testing with other illnesses (eg MS). Also recently JD on twitter said that they were sending WDs MRI to a neuro surgeon to look at (?). It could be a game changer one way or the other.
Hopefully, whatever the results, they will be a bit more responsible in how the information is disseminated to the ME community.
Click to expand...

This is the crux here, it is about responsibility - and clarity. Always.
 
Jonathan Edwards said:
I think you are talking about a situation where the spine is just very mobile. As far as we know this causes no problems at all. Circus contortionists do all sorts of strange things with their spines and do not suffer as far as we know. If there was a problem Olympic gymnastics would be banned.

Hypermobility in itself, as far as I can discover from the literature, does not cause any problems unless there is frank distortion of the anatomy as in a dislocation.
Click to expand...

I feel that your response is very in accurate. How many American football players suffered post concussion syndrome before it was recognized?

I was told by my former rheumatologist that she knew I have hEDS from the beginning of the many years I spent misdiagnosed under her care. I continued to get progressively worse. When I finally saw a neurosurgeon, I was diagnosed with Cervical Myelopathy. I have many, issues with my vision, one sided weakness, gait problems. I have an dx of hEDS from a geneticist. The rheumatologist still had the audacity to say that hEDS is no big deal and I am making too much of it. The spinal instability from hEDS has caused my myelopathy and likely most of my symptoms. Her careless attitude that it was no big deal because she had not seen any research echoes your statement here. Football has not been banned even though it is now known that it can cause brain injury. I do not expect gymnastics to be either. Further more, how many contortionists do you suspect have a wide reaching public audience and can spread the news world wide that they have spinal issues?
 
Jonathan Edwards said:
I see no reason to think the cord would suffer with stretching alone in the context of a hyper mobile spine
Click to expand...
hEDS can have an issue with the filum not being elastic, and then stretching of the spinal cord can cause injury.

Starting at about 4:25, Dr Patel addresses this issue and also mentions that twisting of the spinal cord causes symptoms and that the spinal cord os not supposed to be stretched.

 
rel8ted said:
Starting at about 4:25, Dr Patel addresses this issue and also mentions that twisting of the spinal cord causes symptoms and that the spinal cord os not supposed to be stretched.
Click to expand...

If neurosurgeons treating EDS actually have evidence for things like this then they should publish it. The most recent review by Henderson, Bolognese, Patel and others in 2017 says:

This report also discusses increased prevalence of migraine, idiopathic intracranial hypertension, Tarlov cysts, tethered cord syndrome, and dystonia, where associations with EDS have been anecdotally reported, but where epidemiological evidence is not yet available.

That is to say they do not actually know whether EDS is associated with these things. I have worked alongside surgeons for a long time and they often say they find things without any reliable evidence. They tend to assume nobody is going to question their expertise.

Responsible medical practitioners make sure their evidence is solid before applying it to patients. I don't see that here.
 
Nasim Marie Jafry said:
For example, the surgeons embracing fusion surgery as 'curative' for CFS - which criteria are they using for CFS?
Click to expand...

I'm guessing it's the referring doctors who determine the criteria for CFS and not the surgeons? How would a surgeon even begin to understand a patient with ME/CFS history when it's most likely the first or second time they've actually seen the patient?
 
Mij said:
I'm guessing it's the referring doctors who determine the criteria for CFS and not the surgeons? How would a surgeon even begin to understand a patient with ME/CFS history when it's most likely the first or second time they've actually seen the patient?
Click to expand...

Yes, of course. That is not what I mean though. Sorry not to be more clear! We do not even know if the doctors who originally diagnosed these 15 patients with ME/CFS are the same ones who referred them for CCI evaluation, do we? My point is, those surgeons, such as the team in Spain, who are now saying the CCI surgery is resolving CFS symptoms in some patients - do they have any idea of the differeing criteria, I would think not, so essentially I am agreeing with you!
 
[Not a recommendation]

I have noted more disclaimers on the Medium blogs, such as this one posted November 9, though I think the Disclaimer text

Read this disclaimer. Crucially, surgery carries risks and it’s important to remember that in medicine, the same exact symptoms can have multiple, different causes. We have no idea how prevalent CCI is in our community and there’s been no research into its relationship with ME. We do know that it is more common among patients with EDS.
Click to expand...


needs to go at the top of the posts:

Code: 
https://medium.com/@jenbrea/how-infection-can-damage-the-cervical-spine-d43d3dac5734



How infection can damage the cervical spine

How could post-infectious ME result from pathologies like CCI or cervical stenosis? There are precedents. Here are three examples from elsewhere in the medical literature of how infection can damage the cervical spine and cause brainstem compression


And recent suggestions I have made via Twitter that Jen's frequent references to "our cohort" and "we are finding" need qualifying have resulted in:
Yeah, “we are finding” means “we patients are finding.”
Click to expand...

Jen has also started spelling out within Twitter posts that "our cohort" is a [self-selected] closed support group.
___________________________

Moderator note: This post has been copied to this thread:
Medium Blogs by Jennifer Brea, 2019
https://www.s4me.info/threads/medium-blogs-by-jennifer-brea-2019.11138/page-16#post-214698
 
Last edited by a moderator:
Given that JenB is including cervical spinal stenosis in her list of structural neck pathologies in her 'statistics', I thought it would be interesting to find out how common cervical spinal stenosis is.

I found this paper that carried out measurements on 469 adult skeletons.
Here are the key results on prevalence of spinal stenosis:
cervical stenosis was present in:
4.9% of the adult population,
6.8% of the population fifty years of age or older, and
9% of the population seventy years of age or older.

In other words, spinal stenosis is very common and often asymptomatic. If that is what is being found on some of the ME patients' scans, then it may be entirely irrelevant to their symptoms, whether ME or not.
 
Trish said:
In other words, spinal stenosis is very common and often asymptomatic. If that is what is being found on some of the ME patients' scans, then it may be entirely irrelevant to their symptoms, whether ME or not.
Click to expand...
Yes, there could be many other conditions people likely have concurrently with ME, but with no correlation whatsoever. Science is about seeing past apparent correlation / causation.
 
You must log in or register to reply here.
Back
Top Bottom