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

[ukxmrv]

When I was in a bad crash I wondered to myself if someone could put me in an induced coma for a while to let me not have to experience the crash. Purely hypothetical of course.

There were UK and Australian clinics drugging various patients

Chelmsford deep sleep therapy: Exposing systemic failings that denied justice - Justice and Equity Centre

We represented the victims of lethal 'Deep Sleep Therapy' at Chelmsford Hospital.

jec.org.au

William Sargant - Wikipedia

en.wikipedia.org

This doctor was 'treating' ME patients and tried to get me into his private one in London

Preying on Hope | DuncanCampbell.org

www.duncancampbell.org

The ME patients I met or spoke with who had seen him were all worse. One went from his clinic into a psych hospital.

 

[Utsikt]

It is purely a guess but I think it quite likely that as few as 10% or less of ME/CFS cases might be amenable to this approach on its own. And not that many of those will have had five hour operations.

Fluge, Mella and Tronstad in 2021:

In our model, clinical symptoms of ME/CFS are related primarily to the inadequate autoregulation of blood flow yielding tissue hypoxia on exertion, but are also influenced by the compensatory adaptations from increased sympathetic output and from metabolic shifts. We speculate that cognitive techniques, which are reported to help subgroups of patients, might act by modulating the sympathetic output. If so, one would expect a greater benefit for patients with less ongoing immune activation and less vascular dysregulation, but with main symptom contributions from the secondary autonomic adaptations.

https://www.s4me.info/threads/pathomechanisms-and-possible-interventions-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-2021-fluge-mella-tronstad.21485/

 

[Grigor]

Wouldn't it be just as likely that these rare remission responses are due to the long anaesthetic rather than the surgery? These procedures are 4-5 hours duration.

Several surgeons, including Dr. Gilete, use dexamethasone post-surgery to reduce inflammation. If the brain is affected and neuroinflammation is present, it's possible that reducing this inflammation could contribute to symptom remission in some patients? Dexamethasone was also used in severe COVID-19 cases, primarily to manage systemic inflammation, and may have had secondary effects on neuroinflammation.

 

[Jonathan Edwards]

it's possible that reducing this inflammation could contribute to symptom remission in some patients?

Steroids have been tried before and the effect is temporary, as it usually is in chronic conditions. I don't think that can fly. And we don't have evidence of inflammation causing the symtpoms. The euphoriant effect of dexamethasone is slightly more plausible but not much.

 

[poetinsf]

One is a sales pitch for a private clinic and the other an information sheet from an advocacy group for a condition where misinformation is rife?

Any specific "misinformation" in "since the vagus nerve runs very close to the C1-C3 vertebrae, it can easily be affected by upper cervical malrotations from instability"? I brought the links up only because you stated that is anatomically not possible. It would be simpler just to rebut rather than impugn the motive.

As I said before, we used to send patients to have their vagus nerves cut completely through for stomach ulcers and nobody got ME/CFS. Isn't that a fairly conclusive piece of evidence against tickling the vagus making people bedbound?

Cutting may be different from irritating: one may attenuate while the other amplify. But that probably belongs in anything-is-possible category, which the pondering role of vagus nerve irritation is at the first place. Btw, I'm not speculating it as ME/CFS as I said before. Only as rare cases mimicking ME/CFS symptoms caused by hypersensitivity either from intracranial hypertension or nerve irritation.

 

[poetinsf]

Wouldn't it be just as likely that these rare remission responses are due to the long anaesthetic rather than the surgery? These procedures are 4-5 hours duration.

I'd be for investigating those cases as well if there are verified cases. I still think we can learn more from the exceptional cases rather than forever rummaging through cohorts. As for CCI/IH cases, there are enough reports that intracranial hypertension can cause neurology/neuroimmunology to become hypersensitive. Relieve the pressure and the symptom disappears. All speculation at this point till somebody actually look into it closely.

 

[Jonathan Edwards]

Any specific "misinformation" in "since the vagus nerve runs very close to the C1-C3 vertebrae, it can easily be affected by upper cervical malrotations from instability"?

Yes, it is a misleading statement. Being close to vertebrae isn't enough - Hutan's analysis is very good.

Btw, I'm not speculating it as ME/CFS as I said before. Only as rare cases mimicking ME/CFS symptoms caused by hypersensitivity either from intracranial hypertension or nerve irritation.

I am not sure what the difference is since there is no other 'real ME/CFS' pathway that we know about for it to be not. If it mimics then for the present it is a cause of ME/CFS, at least until it is separated off as a known cause.

I am not sure where intracranial pressure comes in - it is not the reason for photophobia in either meningitis or migraine and has no relation to CCI. The clinical features of intracranial hypertension are well known and they do not look like ME/CFS. As indicated above, one minute people blame high pressure then they blame low pressure from 'leaks' and the random permutations of the story continue.

We know irritation of the vagus doesn't do it because people have used that deliberately as a therapy for arthritis (and it doesn't work).

 

[Jonathan Edwards]

I'd be for investigating those cases as well if there are verified cases.

We are talking about the same cases - but that it was the anaesthetic not the surgery that was relevant.