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I would certainly advise against any do-it-yourself traction option. One of the problems with surgery in the past was that the fixation left the upper vertebrae in a worse rather than a better position - which may be why people deteriorated or died. If there is genuine instability there is no...

very much so

Diagnostic categories may have changed but the clinical problem has not changed. The new criteria look as arbitrary and 'stretchable' as the old.

That is the suggestion. But it might achieved with much less risk. By careful analysis of all the steps in the scenario. The first thing is to evaluate the evidence for CCI in the first place. Another thing is to do a much more limited immobilisation procedure.

Yes, I am thinking maybe I ought to try to do something about it. I am not that good at getting around to things like this but I have been pleased to notice that most times I say I might get round to something someone else pops up getting around to it - like the long actometry study. Still this...

I think there is an interesting aspect of the nature of psychology that psychologists have not cottons on to. Psychology is entirely an empirical science, in the way that chemistry was before quantum mechanics explained valency. That means that psychology has no means of postulating and testing...

I think they should be taken down. We have no good reason to think CCI or intracranial hypertension are relevant to ME/CFS and lots of reasons for thinking they are not. the material on the CCI page comes from the opinion of a small group of surgeons and is not the general view. There is a...

I think they should be taken down. We have no good reason to think CCI or intracranial hypertension are relevant to ME/CFS and lots of reasons for thinking they are not. the material on the CCI page comes from the opinion of a small group of surgeons and is not the general view. There is a...

@Graham, I agree with your caveats about the maths but I think my original point stands. Maybe I was not clear. The whole business of the link between 'EDS' and ME is shrouded in mystery. The ME research community is snatching around for any tiny clue yet there appears to be an elephant in the...

Dear @Sarah94, I don't want to seem unreasonable but just in case you had missed it. I was involved in the setting up the hypermobility research programme in the 1970s that led on to the new term 'hEDS'. I have looked after a large number of people with these diagnoses. When Rodney Grahame...

No, totally implausible is totally implausible. I need to explore some further arguments when I have time but I have been busy in the last 24 hrs. I agree with Michiel that it would help for Jen B to add a disclaimer, or preferably stop posting about these things until we have some evidence...

As of the moment I cannot think of a single viral infection that induces bone erosion. It is always bacteria. And the point remains that bone erosion has never been found in PWME.

I am not able to focus on the thread just now but just a quick point for @Graham. The prevalence of EDS is usually said to be 1/5000 by geneticists. However, 'hyper mobile EDS' is a diagnosis given by rheumatologists and pain specialists and only requires hypermobility and chronic pain and/or...

An important point.

If ME was capable of eroding ligament insertions in such a way as to produce laxity there would be severe cases from history with overt CCI and tetraplegia with specimens in the path museum. There is not the slightest hint of any pathology of that kind. I get the impression that some people...

Except that it also says that it is a disc - which is not CCI. And we are not told what is supposed to be the effect of the disc. Confusion as before.

You are diligent in the literature searching @Michiel Tack. But the more I hear of this the less it looks real. If rates of Chiari vary widely then I suspect the whole thing is a house of cards.

The video shows typical woolly pseudoscience. Nothing actually hangs together. It all seems to stem from this paper by Rowe. But from there it goes in all directions in a completely random way. I have listened to talks like this for years. PWME need something better than this.

Interesting that when the clinic opened Dr Bragee claimed that: The etiology of ME/CFS is unknown, but in 90% of cases an infection has precipitated the onset of the condition. Now it seems that trauma is responsible for 90%. That seems like 180%. Although my analysis might be too simple!

Is this a private clinic? The material presented looks shaky. I am trying to remember my CSF physiology but as far as I remember narrowing of the cervical canal is not a cause of raised intracranial pressure - CSF is normally absorbed through arachnoid granulations above the foramen magnum. If...