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Hi @JenB Thanks for responding to questions on this forum. I just wanted to briefly point out that the concerns I had about CCI haven’t been fully addressed. As I understand it, you will be posting new articles on your CCI diagnosis, fusion surgery and recovery process on Medium. Some of...

Yes, perhaps I should repeat this one more time as I'm signing off from this subject. The discussion I've been having was NOT about whether CCI can cause ME/CFS symptoms, whether CCI surgery can alleviate ME/CFS symptoms or what the recovery stories of Jeff, Jen and others mean for the rest...

There’s one more thing I would like to say before I retreat from this subject to rest. Jen, on Twitter you said one of the reasons a disclaimer was not necessary was that “CCI is primarily based on objective testing.” Yet as I understand it, the imaging isn’t like a test that univocally says...

Well, it is certainly possible that patients with CCI have symptoms that patients with ME/CFS also have. Such overlap is probably possible in all medical conditions. The thing is that the symptoms that are characteristic of a disorder and that clinicians use to recognize and diagnose the...

Hi @Jeff_w, Thanks for responding. This was a response to Stewart who wrote about the 'new' symptom cluster' neurosurgeons speculate is caused by brainstem compression, by which I assumed he meant cervical medullary syndrome. I mentioned Dr. Batzdorf presentation because Stewart linked it to...

That brings me to another point. @Jeff_w and @JenB you both said you cannot in good consciousness agree with the following statement "Patients with CCI/AAI suffer from symptoms that are clearly distinct from the symptoms of ME/CFS" because you believe to be inaccurate or simply untrue. Yet when...

Thanks for sharing your story Stewart. In just want to pick into this because you keep saying that there is an overlap between ME and these symptoms, but I haven't seen this in any publication or even video. The cervical medullary syndrome consensus definition from 2014 that Henderson uses in...

I would argue that if a story flies in the face of our current understanding, that is precisely a reason to provide some scientific background to the story. If ME/CFS patients want to write blogs about their remission following rituximab (which could be interesting) then it would be advised to...

This comment you are referring to was about the MEpedia article on CCI and does not suggest that people aren't taking this seriously. If I understand correctly, MEpedia is meant to be an encyclopedia and these normally reflect scientific understanding, not anecdotes and speculation. I'm more...

With all the respect Alvin, but whose statements are you criticizing here? I don't think there is anyone on this forum who does not take Jeffs and Jennifer's remission seriously, in fact, that's the reasons why we have these long threads - to discuss it in depth. I don't think there's anyone...

Thanks for pointing this out Mattie, will change this in the text. I agree but that was sort of the point of my blog post: that readers didn't get all the information to make their own informed decision. Nowhere was there a description of what a typical case of CCI looks like and how that...

Hi @JenB, Since you plan to write more blog posts on Medium about your CCI diagnosis and treatment, is it possible to add a disclaimer at the beginning of those articles as suggested at the beginning of this thread? Many thanks in advance, Kind regards. Michiel.

I do not quite understand what subclinical IIH is. If patients, for example, do not have an elevated lumbar puncture opening pressure (⩾250 mm CSF in adults) or papilloedema then why would one think that common symptoms such as (severe) headache and vision problems are caused by this rare disorder?

Hi Jennifer (@JenB) I'm looking at the MEpedia references right now. I have some concerns about the clinicians in the United Kingdom you referenced (Higgens and colleagues) . In this paper from 2017, they speculate that chronic fatigue syndrome is merely the "most common and least severe"...

This article is mostly about intracranial hypertension. Haven't done a literature search but it seems like the main symptoms of (idiopathic) intracranial hypertension (IIH) are headaches and visual problems. Almost all IIH patients have what is called ‘papilloedema’, a swelling of the optic...

Merged thread New blog post by Jennifer Brea on Medium: Path to diagnosis (Part I: An empty sella). Twitter post:

Thanks for the info @mango, very helpful. This seems interesting, let's hope this will be research of high quality. It can be a good thing to have a researcher from outside the field who presents with new ideas but the 90% figure makes me a bit suspicious, to be honest. Also a bit weird that...

I've collated some info about craniocervical instability (CCI) surgery in a blog post on the S4ME forum. I have some concerns about this surgery in ME/CFS and hope that the text will help patients to put things into perspective...

My text is not focussed on whether CCI/AAI could cause ME/CFS symptoms or not, but on what the current evidence says; what is known and written down in scientific publications. This is not a matter of belief. So unless one provides scientific literature that suggests otherwise, one will have to...

Thanks Jeff. I appreciate you having a look at my concerns. I'm glad that some neurosurgeons are trying to decrease the complications of this type of surgery for example by no longer using rib harvest. I do not think however that it's best to eliminate the information about these complications...