Inter
I don't think Jen ever claimed fusion surgery was necessarily curative for ME. I reckon she has only stated she is currently in remission from the condition she had, which was diagnosed as ME. We don't have a clue about the actual cause or disease process is in ME, which means we cannot rule craniocervical instability or any other structural brain condition out. This is how Ramsay describes a typical onset of ME/CFS in his
diagnostic criteria:
This is how Jen Brea describes her 2011 onset in her newly released
blog post:
I think it's too easy to simply dismiss this case and claim Jen didn't have ME to begin with now the she recovered. I spoke with my doctor recently and he was well aware of this "CCI meme" going on and was going to discuss it in some upcoming conference. I think we will all be a lot wiser regarding this matter in a year or two.
I agree, yes, we do not understand the mechanism of ME, but I think we can be fairly confident that Ramsay and Behan were not looking at CCI. And I will simply never understand how fusion surgery can resolve RamsayME, nor put it in remission, whatever you want to call it, Jennifer is clear that surgery has reversed all aspects of her illness
Yes, low grade fever is referenced by Ramsay - and also Dr E Dowsett in a table in Ramsay's book describes Coxsackie B4 - which Jennifer thinks was her onset virus - as being associated with low fever, less than 101 - yet Jennifer has frequently described her 'triggering' fever as v high - 104 F. I believe she also attributes her illness to previous exposure to black mould, which she has described elsewhere. Dowsett table below.
Also, in an earlier Medium post, Jen wrote: '
It is now clear that all of my symptoms had a mechanical mechanism: brainstem compression (likely with altered cerebrospinal fluid and cranial blood flow) due to cranial settling and craniocervical instability (CCI), in combination with tethered cord syndrome. Given my remarkable improvements, the centrality of those structural mechanisms is, in my case, undeniable. What remains elusive is the root cause.
I know that CCI caused my PEM and other ME symptoms. I can never know why I developed CCI in the first place. (I do have some conjectures!) And I have good reason to think that so long as my fusion holds and my spinal cord does not re-tether, my PEM and other symptoms will never come back.'
I am confused as here she says she can never know why she developed CCI in first place, but in the more recent Medium piece quoted above, she says
she knows the postviral damage to ligaments in her neck caused CCI. This is what concerns me, these kind of inconsistencies.
Edit: And just to reiterate, the ME Association in UK has Chiari listed under differential diagnosis of ME. I do know CCI is not same as Chiari, but my very simplistic understanding is they both cause brainstem compression issues.
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