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As someone whose BDI used to be lower and who is vastly better at a “moderate” BDI, I do think the BDI should have a lower bound. It just has not been conceptualized this way and there’s no research to tell us what the lower bound should be.

Michael Flanagan is speaking your love language @Hip! “Because of this, the author has also long maintained that the perivascular spaces serve as the lymphatic system of the brain and that sluggish CSF flow may play a role in pathology of neurodegenerative diseases and the increase in the...

This paper seems to contain a fair amount of new knowledge and speculation but is a great review with lots of references...I will be digesting this for some time. What a great find @debored13 “Researchers have also argued and shown that a significant amount of CSF flows into the capillary veins...

This is a really interesting paper. Thank you. This outlines a lot of what we have been discussing here: “malformations of the base of the skull and Chiari malformations that can block CSF flow resulting in hydrocephalus [61–65]. Connective tissue disorders, such as rheumatoid arthritis and...

And not just normal fluid dynamics, but what happens in various pathological states. I tried reading about what happens after TBI, for example, because a lot of researchers have noted the similarities between some aspects of TBI and some aspects of ME, but I gave up. Everything is conditional...

Unfortunately, I think that there are a lot of paradoxical things happening at the same time. Thinking solely of my case: I did have intracranial hypertension. I did feel worse when I was laying completely flat. However, I also felt worse when I was standing upright. There were two main reasons...

My money is on sudden restoration of normal blood flow. I base that on nothing but my own subjective experience, and knowing what the metabolic & neurological consequences of hypoperfusion are. Hypoperfusion is something I think we can pretty confidently say *is* happening in ME patients...

I love how polite the study authors were. “You told these people their symptoms had psychosomatic explanations but maybe their brains slipping out of their heads when they stand have something to do with it.”

WHOA. I just found this really interesting study on whiplash and Chiari: https://www.tandfonline.com/doi/abs/10.3109/02699052.2010.490512 I have heard several clinicians speculate that there seems to be a post-trauma or post-infectious trigger in people who are later observed to have Chiari...

A lot of people have measurements of greater tonsillar herniation when upright v. supine. You’re saying that is largely a function of radiology error or misinterpretation? Why do surgeons use cine MRI to determine if a Chiari Malformation/tonsillar herniation is actually causing a problem? I’m...

I mean, we do have reason to think CTD cases are relevant to this study at least, as they identified hEDS in 20% of cases. That is actually one thing I find confusing about the study, that we get no sense of the correlation between hEDS and the other findings. Again, I don’t know if it is...

Right, and my understanding is that 10% will *also* be imaged in Sweden. I think a part of the goal is to compare how observations (measurements) change between supine and upright, and with dynamic v. static imaging. There’s already some literature on this but very little systematic data in this...

Agreed. And this is likely the tip of the iceberg. What is unusual about these cases is how visible they are. I imagine very few lawsuits actually wind up in the press. We don’t know the frequency of lawsuits brought against any of these surgeons. We know very little even about these public...

And among neurosurgeons, spine surgeons are most likely to get sued. “Elective spinal surgery cases constitute the majority of litigation.” https://thejns.org/view/journals/j-neurosurg/106/6/article-p1108.xml That of course doesn’t tell you anything about these particular cases, just that...

Have you read the references on the MEpedia page? The people working on this in EDS and ME/CFS have discussed some of the issues you have raised.

I think a part of the problem is there have been very few large-scale brain imaging studies on ME patients. Scratch that—have there been any? And no cervical MRI studies as far as I am aware. The work just hasn’t been done. I know I am just one case but I saw seven ME experts in the US and had...

Blindness is not an inevitable part of intracranial hypertension. “approximately 1-2% of new cases of IIH are likely to become blind in a given year.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3722545/ However, I have seen discussion that papilledema may be less common in people with...

Yup, I have permission. The person isn’t a member of the forum. Not sure why they didn’t want to create an account or post, they just said they didn’t want to, so I asked them if I could repost. It’s definitely not true that they are flying everyone in and out in one day, at the same time...

A Norwegian patient helpfully offered a slightly different perspective on the document, which I am pasting here. I obviously can’t read the original document so make no claims as to the accuracy of the comments below. (These comments were in response to a discussion of the study posted on a...

Sounds like you made the right choice for your care!