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

Also
The Chiari EDS Center also now employs:
Anne Maitland, M.D., Ph.D.
Allergy and Immunology Director MCAS Center

“Dr. Maitland has now joined Dr. Paolo A. Bolognese, MD, director of the Chiari Neurosurgical Center, and Dr. Ilene S. Ruhoy, MD, PhD, the Medical Director for the EDS/Chiari Center at Mount Sinai South Nassau, as an Immunologist, who will be involved in pre-and post-operative patient care, of those impacted by a debilitating triad of EDS, Autonomic Dysfunction and Mast Cell Activation Disease.”

https://chiariedscenter.com/anne-maitland-m-d-ph-d/

It doesn’t say ME/CFS from what I can see, but that is still the impression many PwME have
 
vsou said:
It doesn’t say ME/CFS from what I can see, but that is still the impression many PwME have
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I don't know if dr Bolognese's website mentioned ME/CFS before or not. However, I remember dr Gilete's did but after a while everything about it just disappeared from the website (MCAS is mentioned though). Maybe due to some backlash? Just speculating.
 
Not sure if this is the right thread but Cort Johnson posted a blog about CCI with Kaufman and Ruhoy. It's awful! Really awful. Full statements for which we have no evidence whatsoever. It's so painful to read this stuff. How many more need to be harmed by these surgeries before mentioning that there's a lack of evidence base for the whole CCI, surgery, OTC, ME connection? I don't have the answers for any of this, who knows it might be relevant for some or even many people, but without the evidence this all feels highly irresponsible!

Oh and if you're skeptical it's important to watch a video instead of publishing articles that show actual evidence for the claims that are being made.

Sorry rant is over...

https://www.healthrising.org/blog/2...ervical-instability-chronic-fatigue-syndrome/
 
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After my complaints Cort now added this to the blog. Still making it sound a lot better than what it is, but a slight improvement I guess...

"Please note, though, that while there have been some remarkable recoveries, some people have not done well at all with surgery, and some people have had much more moderate results. This is a work in progress."
 
I agree it's irresponsible to write about it with so few caveats and no evidence to support any of it. They now even seem to be saying POTS is an indication of CCI, which will confuse a lot of people with ME/CFS who also have POTS that is nothing at all to do with CCI.

There are some odd sounding bits, like this:
Humans, he noted have a very heavy brain sitting on a little neck. The brain is held in place by the most mobile joint in the body which allows us to turn our heads in all sorts of directions.
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Most of the weight of the head comes from the skull, CSF, other tissues etc. A human head weights 4.5 to 5 kg, and the brain only contributes 1.4 kg to to that, and is mostly composed of fat so it floats in the CSF. The brain is held in place inside the skull, and floats in the CSF, it doesn't sit on the neck.

It's also incredibly irresponsible of the doctors involved to be selling this as an ME/CFS treatment when there's no evidence to support that, and lots of people they have treated have got worse.

I haven't watched the video. If anyone has watched it, do they say anything about doing a clinical trial?
 
I found this comment by Kaufman particularly depressing and offensive without evidence:

“Then there’s the profoundly disabled, mostly bedbound, group. Dr. Kaufman noted all the drugs in the world, all the titrations, all the treatments for mast cell, bacterial overgrowth, their autoimmune problems – which can otherwise work in their case – do not get them better – because he cannot fix a damaged brainstem”.
 
In the absence of any kind of data coming from these doctors and surgeons (which is a big read flag by itself), I think it would be great if someone approached this question as an investigative journalist and tried to actually pull together something on how many people are actually improving, seeing no difference or getting worse, what the different groups have in common or how they are different, how people feel about their choice to have surgery a year or two down the road, how many patients show purported structural problems on MRIs versus healthy people, and so on.

But just repeating the claims of proponents is not helpful.
 
dave30th said:
Since the initial stories, I haven't read/seen many reports either way--a few, I guess. Have there been lots of self-reports either way, for those who have been more focused on this issue? It still seems like a handful of personal stories.
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I know of several people who are getting the imaging and tests done for CCI and of a few others who have recently had the surgery.
I also know some people who have measurements that would qualify them for surgery but have chosen not to do so (at least for now).

As with so many things, lots of people jump on the newest bandwagon each time another one comes around but somehow it turns out not to be "the magic cure"....
 
SNT Gatchaman said:
Circulating miRNAs as diagnostic biomarkers for adolescent idiopathic scoliosis (2018, Nature Scientific Reports)
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Here's another paper on adolescent idiopathic scoliosis and circulating micro-RNAs (+/- within extracellular vesicles) —

Investigating the Differential Circulating microRNA Expression in Adolescent Females with Severe Idiopathic Scoliosis: A Proof-of-Concept Observational Clinical Study (2024)
Raimondi, Lavinia; De Luca, Angela; Gallo, Alessia; Perna, Fabrizio; Cuscino, Nicola; Cordaro, Aurora; Costa, Viviana; Bellavia, Daniele; Faldini, Cesare; Scilabra, Simone Dario; Giavaresi, Gianluca; Toscano, Angelo

Adolescent Idiopathic Scoliosis (AIS) is the most common form of three-dimensional spinal disorder in adolescents between the ages of 10 and 18 years of age, most commonly diagnosed in young women when severe disease occurs. Patients with AIS are characterized by abnormal skeletal growth and reduced bone mineral density. The etiology of AIS is thought to be multifactorial, involving both environmental and genetic factors, but to date, it is still unknown. Therefore, it is crucial to further investigate the molecular pathogenesis of AIS and to identify biomarkers useful for predicting curve progression.

In this perspective, the relative abundance of a panel of microRNAs (miRNAs) was analyzed in the plasma of 20 AIS patients and 10 healthy controls (HC). The data revealed a significant group of circulating miRNAs dysregulated in AIS patients compared to HC. Further bioinformatic analyses evidenced a more restricted expression of some miRNAs exclusively in severe AIS females. These include some members of the miR-30 family, which are considered promising regulators for treating bone diseases. We demonstrated circulating extracellular vesicles (EVs) from severe AIS females contained miR-30 family members and decreased the osteogenic differentiation of mesenchymal stem cells. Proteomic analysis of EVs highlighted the expression of proteins associated with orthopedic disease.

This study provides preliminary evidence of a miRNAs signature potentially associated with severe female AIS and suggests the corresponding vesicular component may affect cellular mechanisms crucial in AIS, opening the scenario for in-depth studies on prognostic differences related to gender and grade.

Link | PDF (International Journal of Molecular Sciences)
 
Craniocervical instability in patients with Ehlers-Danlos syndromes: outcomes analysis following occipito-cervical fusion
Henderson, Fraser C.; Schubart, Jane R.; Narayanan, Malini V.; Tuchman, Kelly; Mills, Susan E.; Poppe, Dorothy J.; Koby, Myles B.; Rowe, Peter C.; Francomano, Clair A.

Craniocervical instability (CCI) is increasingly recognized in hereditary disorders of connective tissue and in some patients following suboccipital decompression for Chiari malformation (CMI) or low-lying cerebellar tonsils (LLCT). CCI is characterized by severe headache and neck pain, cervical medullary syndrome, lower cranial nerve deficits, myelopathy, and radiological metrics, for which occipital cervical fusion (OCF) has been advocated.

We conducted a retrospective analysis of patients with CCI and Ehlers-Danlos syndrome (EDS) to determine whether the surgical outcomes supported the criteria by which patients were selected for OCF. Fifty-three consecutive subjects diagnosed with EDS, who presented with severe head and neck pain, lower cranial nerve deficits, cervical medullary syndrome, myelopathy, and radiologic findings of CCI, underwent open reduction, stabilization, and OCF. Thirty-two of these patients underwent suboccipital decompression for obstruction of cerebral spinal fluid flow. Questionnaire data and clinical findings were abstracted by a research nurse. Follow-up questionnaires were administered at 5–28 months (mean 15.1).

The study group demonstrated significant improvement in headache and neck pain (p < 0.001), decreased use of pain medication (p < 0.0001), and improved Karnofsky Performance Status score (p < 0.001). Statistically significant improvement was also demonstrated for nausea, syncope (p < 0.001), speech difficulties, concentration, vertigo, dizziness, numbness, arm weakness, and fatigue (p = 0.001). The mental fatigue score and orthostatic grading score were improved (p < 0.01). There was no difference in pain improvement between patients with CMI/LLCT and those without.

This outcomes analysis of patients with disabling CCI in the setting of EDS demonstrated significant benefits of OCF. The results support the reasonableness of the selection criteria for OCF. We advocate for a multi-center, prospective clinical trial of OCF in this population.

Link | PDF (Neurosurgical Review)
 
The patients in the study reported improvement, but on average, not the spectacular remission/recovery that has been reported in the ME/CFS community. Karnofsky scores changed from 50 to 60 and here are for example the changes in orthostatic intolerance:

upload_2024-1-4_9-50-0.png

Because there was no control group we don't know if the improvements were due to treatment (and they might simply be response bias or a placebo effect). These reports do indicate that the average expected improvement from CCI surgery is likely not bigger than reported here.
 
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