Jen brea. Interesting interview

Murph

Murph

:)
Messages
1,805
junkcrap50 said:
I thought her cranocervical/tethered cord surgery ended up only providing temporary relief and she regressed back to ME/CFS.
Click to expand...
she's not doing running but she does seem to be cured. she says she does a lot of hiking and weight lifting. There was a weird event last year where she went missing following some sort of mental health event in a airport, I wondered if her and Omar were still together but seemingly they are.
 
junkcrap50

junkcrap50

Senior Member
Messages
1,408
Murph said:
she's not doing running but she does seem to be cured. she says she does a lot of hiking and weight lifting. There was a weird event last year where she went missing following some sort of mental health event in a airport, I wondered if her and Omar were still together but seemingly they are.
Click to expand...
Thanks. Yeah I sort of remember her mental health episode at the airport. But I remember she "regressed" or had to have another surgery or something that she announced. Maybe it was a really temporarily short thing and not a real regression. Glad to hear she's cured. I assume cognitively cured too.

EDIT: Ignore paragraph below. I see John Jeff has a new "Theory" page on his website that explains his hypothesis and
So is there any hypothesis from her or others how the surgery cured her & John? Is it just that in CCI subset patients's spinal cord/brain stem compression is causing all their CFS (with no viral persistence/something in the blood doesn't effect them)? Or is it still totally unknown with no ideas?
 
Last edited:
O

Oliver3

Senior Member
Messages
977
Johns theory is scarily possible. And I hope there's other subgroups of m.e cos surgery is not an option for many of us
This is never an option for the NHS...not a surgical route.
The regenerative aspect I've mentioned is gonna be the way out surely for those of us with no access to surgery...smthg that regrows and supports those structures
 
Last edited:
JES

JES

Senior Member
Messages
1,380
I'm none the wiser about the CCI outcome. This was a hugely debated topic on this and the other ME/CFS forum back in 2018. By now probably several hundred ME/CFS patients at least have had this operation done by one of the three neurosurgeons who were supposedly the only ones able or willing to do it.

If this was the root cause to ME/CFS we should have a lot of success stories shared online by now. Instead most of the CCI-related social media groups vanished and the discussion almost died out completely since then.
 
JES

JES

Senior Member
Messages
1,380
Furthermore, if CCI was really the issue you would think just staying in a vertical position in bed rest would resolve or at least improve most symptoms. I haven't seen any evidence that head position is the aspect that makes ME/CFS worse rather than exercise itself.
 
You must log in or register to reply here.
Back