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

Thanks again. It's indeed very sad to see. I have to admit though that the whole CCI stuff is not as alive anymore. There were also very few discussions or complaints online when I replied on Twitter when I posted the letter by Forward ME and an article showing the complications after surgery. I hope that even though that these videos are very irresponsible, that people will just move on as the science of long-covid will as well.

 

Don’t know if this was shared..
https://www.patreon.com/unraveledpo...0jsI2u1XWdBVxpwQvzVllokLvI-NTVFMSfMSCOu5-9IE0

Drs Ruhoy and Kauffman charging people to listen to them talk about CCI etc. I didn’t listen, but saw patients online expressing concern about how unilaterally positive they are about surgery, glossing over risks.

 

I haven't yet been able to catch up on the 75 pages of posts in this thread (!), as well as the related threads. Obviously a contentious area with little evidence, and as noted we're talking fairly major and life-committed surgery with risks and likely very limited benefit to a patient group as a whole.

Despite poor evidence, I try to keep an open mind and recognise that our knowledge is growing, including for things we thought we understood pretty well over a long time. If there were to be a link with impaired CSF flow, perhaps that might be in the form of a last straw on top of an immunological pathology, that tips the patient out of homeostatic recoverability; where conceivably its correction could allow return back to the physiologically happy zone (or at least its subclinical, essentially symptom-free part). But that's just conjecture. There are lots of people with impaired CSF physiology for many reasons and they don't appear to have the cardinal symptoms of ME/CFS.

As far as ME is concerned, I would prefer to see research focus (and funding) on the presumed foundational immuno-metabolic pathology, rather than any potentially contributory mechanical aspect.

But, I've recently posted a few papers on some of the newer thinking around CSF physiology generally, as well as new findings and identified knowledge gaps regarding the spinal cord and canal in particular. So, posting in this thread for reference —

A Brief Overview of the Cerebrospinal Fluid System and Its Implications for Brain and Spinal Cord Diseases (2022)
Direction and magnitude of cerebrospinal fluid flow vary substantially across central nervous system diseases (2021)
Spinal CSF flow in response to forced thoracic and abdominal respiration (2019)

 

I personally also try to keep an open mind about it as much as possible, but I just have real issues with the surgeries with so little to no evidence base in regards to it also treating ME symptoms.

Although those who have been advocating for CCI and such now say that the surgeries aren't for treating ME (symptoms) perse, these surgeries would've never been as popular if it wasn't for the full remission stories of 2 known advocates.

 

I agree we are such in a mess now because patients who have heard about the miraculous recoveries have asked for the same kind of assessment, and convinced practitioners to look into it, without much supporting evidence. This means that for at least some practitioners, there has been the lure of money and business so they are now catering to the patients who are believers. And I don't necessarily mean surgeons, but there are now chiropractors and others who got involved. Since chiropractors are not part of the mainstream health care system here, if patients get rejected in mainstream, they will knock at the door of private care.

And so now desperate Long Covid patients have heard about this from the rumour mill and are now discussing it or even declaring themselves as having CCI.

An absolute mess.

There are contributors to this mess- beyond the rumour mill and bad science. The fact that there is little research money circulating and good science is so slow are in my view factors.

 

Circulating miRNAs as diagnostic biomarkers for adolescent idiopathic scoliosis (2018, Nature Scientific Reports)

 

This looks inherently unlikely to be a useful finding but if it is it ought to be presented a different way.

Adolescent idiopathic scoliosis is defined as a condition in which adolescents have and unexplained scoliosis of a typical pattern. No amount of studying RNA is going to change whether or not an adolescent has an unexplained scoliosis of that pattern. So the test is useless.

Unless, they can show that particular RNA findings in children who have not yet got a scoliosis later reliably develop one. So this would be a prognostic test, not a diagnostic one. I have not read the full paper but I don't think they have evidence of that sort.

 

I just started having a look at later cited-bys and a 2022 paper made reference to finding a decrease in miR-30e in a 2019 paper. That paper is Incidence of scoliosis among junior high school students in Zhongshan city, Guangdong and the possible importance of decreased miR-30e expression (2019). Not prospective but reasonably large numbers showing a significant difference.

This caught my eye as the Prusty 2022 Nature paper identifies the mechanism of herpesvirus-induced down-regulation of the miR-30 family, so while we wait for his ME biomarker announcement, I have been wondering about some of the potential overlap disorders. (I've noticed in my practice a seemingly increasingly busy "EDS pathway" needing bone age x-rays for evaluation of adolescent eating disorders, that seems to have more than its share of scoliosis, so was wondering about possible links beyond simply an association with low BMI, hormonal imbalance etc.)

---
The team that published the paper on AIS in comment #1491 also published Identification of circulating miRNAs differentially expressed in patients with Limb-girdle, Duchenne or facioscapulohumeral muscular dystrophies (2022, Orphanet Journal of Rare Diseases). I'll cross-post in the relevant thread.

 

I suspect that simply reflects the current fashion for calling everyone with slightly loose joints 'EDS' following the hype generated by people like Rowe, Grahame and Hakim.

 

And presumably, nor will it link scoliosis with ME-like symptoms?

 

Fatigue is a common symptom seen in adolescent idiopathic scoliosis. It's usually attributed to "the body having to work harder to compensate for the abnormal biomechanics." I think that's simplistic, similar to a cardiologist looking at a POTS patient and saying "yes you'll feel tired because your heart is beating faster and working harder."

Hence the field of chiropractics, which gives you —

What else is seen in scoliosis? Breathing disturbance. Sleep disturbance. Again, attributed to the scoliosis and abnormal mechanics, chest wall deformity. No doubt a factor once a significant curve has developed, but what about in early scoliosis? See trial reg: Idiopathic Scoliosis Progression and Sleep-disordered Breathing in Children

There are unanswered aspects in relation to pain too, see eg review Back pain in adolescent idiopathic scoliosis: A comprehensive review (2023) although caution, the review of articles leads to inclusion of some of our favourite words: "biopsychosocial factors" and "catastrophizing".

 

You don't need much more than a tiny curve to get dysfunction. I have a hardly perceptible scoliosis secondary to a trivial leg length discrepancy and I was aware of its impact as a teenager.

I am not quite sure what you are trying to imply in your post. We get the BPS people saying 'oh-oh lots of psychosocial causal factors to unravel here'. You seem to be saying 'oh-oh lots of biomedical microRNA type factors to unravel here' - with just as little basis? I had fatigue as a teenager - mostly after EBV but my bent back was also a hindrance. People with established AIS are in pretty big trouble in a world in which looking good on Facebook is 90% of the day. We all know that fatigue is a very non-specific entry point for a medical consult and even more non-specific as an accompanying finding.

Or to maybe echo Kitty, is any of this of any interest at all to PWME? Doesn't it take us down the Knoop and Bragee road that is all too ready to pick up on the B part of the BPS?

 

So do I! Except I had no noticeable effects and didn't realise until my mid 20s. I had a pre-employment TB chest x-ray before starting as a house officer that showed an incidental trivial thoracic curve. At the same time I bought some new trousers ready to look tidy on the ward. I must have skimped on costs, as when they did the measurements to adjust the legs, they only pinned one side (the short one as it turned out). On arrival my new trousers had the other leg way too short. Hilarious - but the penny dropped.

But yes, in regard to your question on whether this is a) at all sensible b) relevant to pwME: absolutely, I am being highly speculative in referencing these papers. Certainly not about to put out a hypothesis paper!, but I thought it was of potential interest for this thread on possible connections between spine and ME/CFS. At 75 pages already, and it being contentious enough with CCI and tethered cord etc, perhaps I should leave this thread alone

 

Just read that Jeff Wood now works as Data Collection and Screening Coordinator for the Chiari EDS Center where Paolo Bolognese, MD is Surgical Director

https://chiariedscenter.com/contact/

 

And I see also that

Ilene S. Ruhoy, MD, PhD, a neurologist who I thought was in a medical practice with Dr. David Kaufman MD is now Medical Director for the EDS/Chiari Center at Mount Sinai South Nassau Hospital.

https://chiariedscenter.com/ilene-s-ruhoy-md-phd/

I don’t see where Dr. Kaufman has landed though