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

If you had significant impaction on the spinal cord from CCI you would almost certainly have 'chronic fatigue' just from that. Spastic weakness in the legs is a tiring thing to have.

There is also the problem of referral bias since the story linking EDS to fatigue has been around - at least since 2010.
 
Hmm. I started reading but gave up. It seems to be a hypothesis from a non scientist based on cobbling together anecdotes, blogs by other non scientists, and the odd bit of poor quality research and untested hypotheses.
 
Grigor said:
Co-occurrence of tethered cord syndrome and cervical spine instability in hypermobile Ehlers-Danlos syndrome.

https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2024.1441866/full

Haven't read it yet so I can't comment on it.
Click to expand...

Abstract
The Ehlers-Danlos Syndromes (EDS) represent a group of hereditary connective tissue disorders, with the hypermobile subtype (hEDS) being the most prevalent. hEDS manifests with a diverse array of clinical symptoms and associated comorbidities spanning the musculoskeletal, neurological, gastrointestinal, cardiovascular, and immunological systems. hEDS patients may experience spinal neurological complications, including cervico-medullary symptoms arising from cranio-cervical and/or cervical instability/hypermobility, as well as tethered cord syndrome (TCS). TCS is often radiographically occult in nature, not always detectable on standard imaging and presents with lower back pain, balance issues, weakness in the lower extremities, sensory loss, and bowel or bladder dysfunction. Cervical instability due to ligament laxity can lead to headaches, vertigo, tinnitus, vision changes, syncope, radiculopathy, pain, and dysphagia. TCS and cervical instability not only share clinical features but can also co-occur in hEDS patients, posing challenges in diagnostics and clinical management. We present a review of the literature and a case study of a 20-year-old female with hEDS, who underwent surgical interventions for these conditions, highlighting the challenges in diagnosing and managing these complexities and underscoring the importance of tailored treatment strategies to improve patient outcomes.
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From the link posted above:

The importance of a multidisciplinary approach to these patients with rheumatology, physiotherapy, and pain management cannot be overstated.

Unfortunately, many patients experience disjointed care within the NHS, and long delays in diagnosis and treatment

Due to the developing knowledge base and the relative rarity of the condition, it is unlikely that the average neurosurgeon, rheumatologist, or physiotherapist without a sub-specialist interest will have sufficient expertise in managing this condition.
 
It simply illustrates how muddled and ill-informed doctors who are supposed to be experts on a special topic often are. The authors clearly have no understanding of the problem but simply regurgitate poor quality information from the literature.

The route forward is to train doctors to know what they are doing and to understand how to evaluate evidence.
 
That is a weird paper - especially when entitled international expert consensus recommendations.

The authors appear to consist of a large number of physiotherapists in the USA, Australia, etc. and one private practice physician - Alan Hakim. He gives himself as affiliated to UCLH but I cannot find any site on the web indicating a current affiliation. He trained at UCLH.
 
Rodney Grahame himself highlighted CCI in this paper with Henderson:
We draw attention to another measure of tissue mechanics that of the measureable hyper-extensibility of craniocervical ligaments causing "floppy head syndromes" in this population. To address the differentiation of pathological hyperextensibility from benign hypermobility, a consensus conference was sponsored jointly by the Office of the Medical Commissioner of the National Health Service, Bobby Jones Chiari Syringomyelia Foundation, the Ehlers-Danlos Society and Lady Trish Malloch-Brown. Lectures and arguments were put forward to address the presentation and diagnosis of craniocervical instability and ventral brainstem compression in the EDS population
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Comment on "Quantitative measures of tissue mechanics to detect hypermobile Ehlers-Danlos syndrome and hypermobility syndrome disorders: a systematic review" - PubMed (nih.gov)
 
Point 61. Keep in mind traction can worsen symptoms. The change in the structure is not always a positive and can trigger PEM

 
Point 50. PEM has a headache as a very prominent feature which may be primary or amplified

Never
 
If it were me, just having the traction on would trigger feeling ghastly.
If we are in to making random unsubstantiated claims here I might make the unsubstantiated claim that getting involved in the CCI business can lead to all sorts of absurd fantasies.
Cervical traction might even cause hurricanes in Georgia.
 
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