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And they have symptoms strongly suggestive of specific neurological deficits And they have an abnormal clinical neurology exam And they have abnormal imaging And they have measurements that change during traction And they have an abnormal ICP bolt test Family history, signs of connective tissue...

Yeah, but a lot more has been said and shared than this, both here and in my Medium posts. I think this gets back to @Hip ’s earlier point. Is this all only worth discussing when we have a clinical trial or systematic evidence in our patient population? Or can we also discuss the literature on...

Totally! I think that’s something we need to find out.

I don’t think that was the topic of Hip’s post... It depends on the context, Michiel. The context. Doctors recommend these things to patients who need them all the time. I’ve seen some people who have craniocervical junction problems have worsened symptoms after an upright scan. I have seen...

I did but something went wrong with my test so I need to redo it. I’ll only have a “post” test, so it doesn’t tell us much. There is at least one person who had done a “pre” test and has since had surgery. She is doing well and is planning to go back to work in January. I have no idea what her...

That there is no evidence that CCF is relevant to ME. Someone unnamed source at the NIH saying so doesn’t mean anything. It is self-evident. There have been no studies. There is no literature. No one has even thought about this much at all until a few months ago. (The conversation around...

Patients here in the US do travel identical distances to participate in studies at Harvard and Stanford, and to seek care. It will obviously exclude the severely ill and include those who voluntarily participate. Some people who are moderately affected will choose to undertake this travel, for...

I mean there is zero evidence. But that doesn’t really mean anything at this stage. And obviously, this surgery is relevant to CCI. The question is how many people who meet ME/CFS criteria have CCI? And if it is a significant number, how they hell did they get CCI?

Is this what you meant? Yes you are right that the consensus statement and these ligaments come out of an EDS context and are meant to describe situations where the bone is intact but the ligaments are lax. Re: physical signs, I do know some people have changes in their neurological exams...

Sorry I must have missed it! Let me look.

I had pretty dramatic ICP fluctuations, however this was related to my apnea (was the interpretation): https://link.medium.com/NQnApxNKL1 Other people have elevated pressure, I believe, for reasons that have to do with overt blockage of blood or CSF flow. Let me dig in a little bit re: some of...

It’s because during surgery, they do intraoperative traction before fixation. If you don’t have symptom relief from traction when you are conscious, then you are unlikely to have symptom relief after waking up from surgery, is the logic. Re: publications, some of this has been described but...

These surgeons are made of tougher stuff

How would you go about testing this?

What do you mean by “there is no actual vertical instabilty.” What gets worse with traction? The BDI?

This is pretty much what happens. If this doesn’t happen, I don’t think you are offered surgery ;) (We’ve heard stories in our group of people grinning, crying. It’s a clouds-parting moment. I know that sounds weird but see: sudden normalization of intracranial presure and/or relief of...

I mean, I think the Henderson diagrams indicate this pretty well (what happens in surgery). During traction, the abnormal measurements are meant to reduce...CXA becomes less kyphotic.

My understanding is patients w/ cranial settling can often have very different measurements in traction v. out. The delta of their BDI (“dynamic BDI”) is quite high. This can, at a minimum, be associated with elevated intracranial pressure, as diagnosed via ICP bolt test. The idea is that this...

I couldn’t help but laugh reading this as I am not sure what surgeon would ever do surgery based on a patient’s DIY radiology analysis!

Yeah exactly. I don’t think this is the most important question right now, though. What’s clear is that there are people in our community with treatable neurosurgical conditions and it is important that we find them, because they are our friends and “neighbors.” And they have PEM. So, we can...