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

Jonathan Edwards said:
The NIH note on 'tethered cord' is interesting in that it only gives two categories:
In some cases, it may be the result of improper growth of the neural tube during fetal development, which is closely linked to spina bifida. Other potential causes include narrowing of the spinal column (with age), spinal cord injury, tumors, and infection.

Spina bifida clearly involves tethering and distortion and there are radicular and/or cord problems like urinary incontinence but why hnot just call it spina bifida?

The other examples are not actually tethered cord but compressed cord syndromes - again you might as well call them what they are.

It looks to me as if NIH have felt the need to have a note on 'tethered cord' because it comes up in the literature and have cobbled together a note that does not add up to much other than spina bifida and cord compression.
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With respect to the tethered cord symptoms I described, I am not really sure what you are looking for. There are 5000+ articles that mention tethered cord syndrome. These symptoms appear all over that literature, as well as on the websites of formal medical bodies, on websites of hospitals. I know you don’t really consider the NIH a credible source. I’m not sure that individual case studies are any better. What would you consider authoritative or convincing?

Is there a specific symptom that is tripping you up?

Is something like this helpful? http://www.neurochirurgischcentruma...ploads/2015/05/tethered-cord-syndrome-JNS.pdf

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In addition to the Buddha signs and the other symptoms I mentioned in earlier posts, some adult with tethered cord have an inability to lay completely flat without provoking symptoms, restless legs, and sexual dysfunction (this affects women and men, although interesting they only catalogued male sexual dysfunction!)
 
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From a paper that i I mentioned earlier , which compares ccj measurements in ctd populations to healthy controls, the Paper i mentioned seems to have gotten lost in the backlog
 
Very long talk by Petra Klinge at Brown University. She is the leading neurosurgeon for tethered cord syndrome in the US in EDS patients. For anyone interested, she describes symptoms, diagnosis, types of tethered cord, including the ‘tight filum’ variety that people with EDS tend to have. She presents histology results (she usually resects about 1 inch of the filum terminale to prevent retethering): she found a lot of immune cells that “should not be there” in the filum, including mast cells. See at about the one hour mark.

 
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JenB said:
@Hip is in a better position to answer this question because he has actual data. Hip, are there people in your survey who tested positive for CCI who don’t have POTS?
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Sorry, I nearly missed this post, as I did not receive an alert that my name was @tagged.

Yes, of the 55 ME/CFS patients in the survey positive for CCI, 40 of them (73%) have POTS, and 15 (27%) do not.
 
Trish said:
For differential diagnosis, the important symptoms are not the ones that occur in both conditions being considered, they are the ones that differ and are more specific to that condition.

So if I were confronted with someone's symptom list and asked if I thought they had ME or CMS, I would not look for general things that occur on both symptom lists, I would look for the things that distinguish them.
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That may well be the case, but that's changing the subject.

My above post showing an overlap in ME/CFS and CMS symptoms was given in answer to @Michiel Tack's earlier comment, where he asked for some references that show the symptoms of CCI look something like those of ME/CFS. @Michiel Tack seemingly was incredulous of this similarity.

Hence I posted the overlap list to indicate similarity between CMS and ME/CFS.




Trish said:
For example, chronic neurological conditions like Parkinsons' disease and MS will be likely to overlap with a lot of the listed symptoms for both ME and cervical medullary syndrome.
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By a quick glance at this list of Parkinson's symptoms, there is not a great deal of overlap with the CMS symptoms I posted above.
 
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Hip said:
My above post showing an overlap in ME/CFS and CMS symptoms was given in answer to @Michiel Tack's earlier comment, where he asked for some references that show the symptoms of CCI look something like those of ME/CFS. @Michiel Tack seemingly was incredulous of this similarity.
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The (old) comment of mine you responded to was a little different though. It asked: "I would kindly want to ask whether Jeff or Jen could direct me to the scientific articles that do describe CCI as something that closely resembles ME/CFS."

Looking for long lists of symptoms of both conditions and then highlighting the ones that overlap isn't a very useful approach to answer that question because the symptoms probably mean very different things in each illness. I suspect that more than 10% of the general population reports IBS and chronic fatigue and almost 50% will say they have headaches. The prevalence of Gastroesophageal Reflux Disease is around 20% in the general population. So I don't see the point that those symptoms occur in patients with CCI. It doesn't mean it resembles ME/CFS.
 
JenB said:
With respect to the tethered cord symptoms I described, I am not really sure what you are looking for. There are 5000+ articles that mention tethered cord syndrome.
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I suspect most of the articles refer to spina bifida and related situations.

I am looking for some convincing clinical/neuroanatomical correlation. I realise that that may not mean much to you but lists of symptoms like the paper you cite just indicate to me a neurosurgical team trying to justify their product. Several of the items seem to be the same thing written a different way and most of them are so common you would expect to get them in a significant proportion of healthy people. I would like to see some documented neuropathology.

There is also something odd about the idea of the syndrome. If the end of the cord is tied down by an inelastic film terminale any stress on nervous tissue ought to be evenly distributed up the entire cord. The lumbosacral roots should actually be protected from shearing in their foramina. Yet the syndrome focuses on lumbosacral problems like leg weakness or wasting. As Popper pointed out a good way to test a theory is to make sure it actually makes the predictions you think it makes. The more I see of the neurosurgical literature the more I get the impression that neurosurgeons are not too good at that sort of analysis.

We are agreed that doctors are pretty poor at reporting objective findings and describing useful criteria. If one lot are bad at it why should we have faith in another lot?
 
Michiel Tack said:
Looking for long lists of symptoms of both conditions and then highlighting the ones that overlap isn't a very useful approach to answer that question because the symptoms probably mean very different things in each illness.
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That's possible I guess. But I think what you are saying applies to any disease which mimics ME/CFS, such as anemia, hypothyroidism, lupus, celiac, etc.

Is the inability to concentrate found in anemia really the same symptom as the brain fog of ME/CFS? Has anybody investigated to see if these symptoms are really identical? I doubt it, but it is still said that anemia can mimic ME/CFS, and so the CCC requires that diseases like anemia should be tested for and ruled out before an ME/CFS diagnosis can be considered.



Cheshire said:
And a list doesn't tell us how you gathered these symptoms, in which trial and how these symptoms were assessed, how common they are, what criteria were used to define the illness etc...
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Well the sources where I found these CCI symptoms are listed below. Perhaps you might like to look through those and see if you can find the info you are interested in.
 
Saddened and disturbed, this morning, to read this post-surgery update from the family of Jenny (@stroopwaffle on Twitter ).

Jenny is an EDS patient who raised in the region of £50,000 through GoFundME in 15 days for surgery and associated expenses carried out in the UK by a private UK surgeon. According to Jenny's Twitter account, she was having occipitocervical fixation (fusion) and posterior fossa release (decompression) surgery and her surgery was scheduled for January 16.

Note the page may take a little time to open:

http://www.jkrowbory.co.uk/2020/01/post-surgery-update-on-jenny/

28 January 2020

We are in a state of shock and devastation...​
 
I've been advised that Jenny had an earlier diagnosis of ME but was diagnosed with EDS in 2015.

From Jenny's GoFundME page:

"My name is Jenny Rowbory, I’m 33 years old and very much want to stay alive!

"I have been severely ill and bed-bound for 15 years after suddenly becoming ill in my first term at university. I’ve been diagnosed with very severe, multi-systemic Myalgic Encephalomyelitis for most of this time but it wasn’t until 2015 that I was also diagnosed with EDS and it wasn’t until May 2017 that I began to get overt symptoms of instability of the cervical spine and atlas, with numbness, temporary paralysis, lymphatic fluid stagnation and severely impaired blood supply to my head, neck and later, the whole body. In October 2018 I was diagnosed with AAI (atlantoaxial instability) and CCI (craniocervical instability), which have continued to deteriorate. The reduced blood and lymph circulation to the whole body has continued to diminish as a result."​
 
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I too was devastated to read the update from Jenny's family this morning.

I want to ask (this isn't aimed at anyone in particular), please, please don't turn Jenny's case into a football for the CCI debate. I imagine that that would cause her (and her family and friends) significant distress, which is really the last thing that she needs. She hasn't been involved in promoting the CCI ME theories. She has simply been pursuing what she thought was best for her. Perhaps she, or her family, will have things to say later on about what they do or do not think about it now. But please, she has never been promoting it, I don't want to see this upsetting news being used as fuel for arguments. (I am not accusing anyone of doing that - I can just foresee the possibility of it happening.)
 
Sarah94 said:
please, please don't turn Jenny's case into a football for the CCI debate.
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Absolutely.

In an attempt to offer a bit of positive info, one of the auditors at my former workplace developed involuntary jerking and twisting in her neck and head after a car accident. I can't remember the name, but it was a recognised condition. The neurologist treated it successfully with Botox injections into her neck muscles three or four times a year.

Hopefully when Jenny's body has recovered from the surgery, they may be able to look into things like this – if it's still happening, which hopefully won't be the case anyway.
 
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