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

Right, as I said. However, there’s a lot more that went undiagnosed because the symptoms of these conditions were interpreted by their doctors as ME/CFS symptoms.

I hope what I’ve been trying to say is at least clear now...

 

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


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!)

 

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.

https://www.youtube.com/watch?v=8WOIVp4qCCM

 

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.

 

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.

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.

 

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.

 

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?

 

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.

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.

• Henderson video 2012
• Henderson video 2018 ⬅︎ Tells you how common the CMS symptoms are in CCI patients
• Henderson 2010 paper
• Henderson 2018 paper (table 1)
• Gilete's website
• Pain Relief Foundation website

 

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...​

 

Gosh, that's awful. Let's hope she improves as she recovers from the surgery.

 

There is a feeling of inevitability about this. It was not necessarily this patient who would be reporting in such terms, but, sooner or later someone was going to.

 

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."​

 

Oh no!

 

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.)

 

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.

 

I'm so sorry to hear this.