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

Thanks. I didn't go poking around in the tables so missed that. Labelled like that doesn't really give me confidence in whether or not those 8 people had ME/CFS or not.

 

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.

 

A blog about the brainstem in relation to ME which also touches on CCI surgeries etc. I complained about it on Twitter that it didn't mention any of the negative outcomes of the surgeries. He was so kind to add it. Sorry to see he has a friend who didn't benefit from the surgeries either...

https://synergies.substack.com/

 

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.

 

Abstract

 

Edited by Ruhoy, reviewed by Bolognese.

 

Hypermobility of the spine: Ehlers Danlos and neurosurgery, the route forward in the UK?

A 2023 editorial on the problem but it doesn't say much.
(11) (PDF) Hypermobility of the spine: Ehlers Danlos and neurosurgery, the route forward in the UK? (researchgate.net)

 

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.

 

Also noted this paper where Alan Hakim is senior author.
Presentation and physical therapy management of upper cervical instability in patients with symptomatic generalized joint hypermobility: International expert consensus recommendations - PubMed (nih.gov)

 

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:

Comment on "Quantitative measures of tissue mechanics to detect hypermobile Ehlers-Danlos syndrome and hypermobility syndrome disorders: a systematic review" - PubMed (nih.gov)

 

Roundtable about the "Mechanical Basis Model/brain stem. Key to understanding ME.

With Jeff Wood, Michael Vanelkzakker, Brayden Yellman and Thomas Varley...

https://twitter.com/user/status/1839691162770120885

 

Jeff Wood 'says_that" Whole thread with 70 messages in point form
https://twitter.com/user/status/1842267036308639969

 

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.

 

Oh I do, preferably by Julia, the buxom dental hygienist.