-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
Jen Brea: My ME is in remission
You were saying that CCI can't explain the gender skew in ME. All I am saying is that the vast majority of my surgeon's patients are women. At least in his practice, there is a huge gender skew where CCI is concerned. That's not to say any of this has anything at all to do with ME. I'll leave it at that.
I gotta duck out but with answer this and many other questions in future Medium posts.
Thanks, everyone!
Alvin
Senior Member (Voting Rights)
If it was not for this i might not be here typing this right now. Another poster suggested what worked for them in their N=1 situation and it helped guide me to something that i would not have tried otherwise.
Ideas build on ideas, obviously verification and testing is needed but saying lets scrap the brainstorming until we meet a specific threshold is only hurting us.
Jonathan Edwards
Senior Member (Voting Rights)
So presumably the articles are not primarily about fatigue. The fact that the word crops up somewhere in the text is not of real interest.
Jonathan Edwards
Senior Member (Voting Rights)
But we are not talking about a new idea. We are talking about whether or not CCI is associate with a clinical picture that overlaps with ME/CFS (likely to use the word fatigue. CCI has been known about for at least 100 years. The clinical picture has been in the textbooks for 100 years. Nothing new.
MSEsperanza
Senior Member (Voting Rights)
The problem to me seems that the way you report your story [edit:] online, also on Medium and elewhere, encourages people with ME to pursue CCI diagnosis. Given the considerations made in my previous post and by others, I find this distressing.
Edited to add: I don't understand why this discussion could be premature only for this forum and format, but not for other online media?
Last edited:
Alvin
Senior Member (Voting Rights)
As you said "We are talking about whether or not CCI is associate with a clinical picture that overlaps with ME/CFS"
Obviously very new since as you said
"I just did a Pubmed search on Craniocervical instability and fatigue. The result was:
No documents match your search terms"
You misunderstand me, @Alvin. I agree we can learn from others' experiences, but I don't think prominence should be given by advocacy organisations to individual cases.
Jeff_w
Established Member (Voting Rights)
Alvin
Senior Member (Voting Rights)
I get where your going
It can be hard to resist direction changes when its based on your own situation as well
Because of the norms of the forum. There has been a lot of discussion re: problems of sharing personal stories, lack of research, etc. I joined this discussion but did not post my personal story here. I think we'll all just keep going in circles until there's published research, so that seems like the right time to discuss this on S4ME.
I'm not remotely trying to encourage everyone with ME to pursue this diagnosis. In fact, I say the opposite of this in many places, many times. What I want is research. However, my change in health status isn't exactly something I can hide. The very fact that I no longer have ME will encourage people to pursue this diagnosis. But you cannot get diagnosed with CCI unless you in fact have CCI, and even then, cannot get surgery unless you meet certain other criteria. So if my sharing my story means that some folks who have CCI will get diagnosed and have surgery that could change their lives, I can't see how that could possibly be a bad thing.
Jonathan Edwards
Senior Member (Voting Rights)
The cervical medullary syndrome, also known as “craniocervical syndrome” (ICD-9-CM Diagnosis Code 723.2; ICD-10-CM Diagnosis Code M53.0), comprises those symptoms commonly attributed to lower brainstem and upper cervical spinal cord pathology, usually in the presence of a “complex Chiari” (Chiari malformation with basilar invagination or craniocervical instability) [1, 3, 4, 5, 77, 79].
In the present study, all subjects presented with headache, fatigue and dizziness, and most reported, in descending order of frequency: weakness, neck pain, imbalance, night awakenings, memory difficulties, walking problems, sensory changes, visual problems, vertigo, altered hearing, speech impediments, micturition issues and dysphagia, and syncopal episodes. In aggregate, these symptoms are reasonably described as the “Cervical Medullary Syndrome
Note that this is in the context of Chiari Malformation where midbrain and/or cerebellar tissue herniates down below the craniocervical junction. That means that neurological signs and symptoms can involve mid brain and cerebellar functions (like hearing and maybe even vision at collicular level).
This would not apply to CCI alone.
There is also a problem with lumping all these symptoms into a syndrome if some of them do not appear to fit the neuroanatomy. It is hard to see how memory problems would arise from craniocervical junction pressure. Lots of people will admit to memory problems.
In the present study, all subjects presented with headache, fatigue and dizziness, and most reported, in descending order of frequency: weakness, neck pain, imbalance, night awakenings, memory difficulties, walking problems, sensory changes, visual problems, vertigo, altered hearing, speech impediments, micturition issues and dysphagia, and syncopal episodes. In aggregate, these symptoms are reasonably described as the “Cervical Medullary Syndrome
Note that this is in the context of Chiari Malformation where midbrain and/or cerebellar tissue herniates down below the craniocervical junction. That means that neurological signs and symptoms can involve mid brain and cerebellar functions (like hearing and maybe even vision at collicular level).
This would not apply to CCI alone.
There is also a problem with lumping all these symptoms into a syndrome if some of them do not appear to fit the neuroanatomy. It is hard to see how memory problems would arise from craniocervical junction pressure. Lots of people will admit to memory problems.
MSEsperanza
Senior Member (Voting Rights)
Thank you, @JenB
I didn't say you were.
Yes and I think more caveats are needed than those you have already been making.
Edited to add: From other discussions I got the impression that people are very quick in attributing some of their symptoms to potential CCI now, and it's simply beyond your capacity to reply to all of them. Also, many pwME won't be capable to engage in an online conversation at all.
edited for clarity
Apologies again for multiple edits and clumsy wording.
I didn't say you were.
Yes and I think more caveats are needed than those you have already been making.
Please try to understand the financial, emotional and also healthwise burden that pursuing a CCI diagnosis plus the special requirements you and Jeff think are needed so that the diagnosis won't be missed by common neurologists and radiologists (I vaguely remember you were mentioning something like that) means for the majority of pwME.
Edited to add: From other discussions I got the impression that people are very quick in attributing some of their symptoms to potential CCI now, and it's simply beyond your capacity to reply to all of them. Also, many pwME won't be capable to engage in an online conversation at all.
edited for clarity
Apologies again for multiple edits and clumsy wording.
Last edited:
ME/CFS Skeptic
Senior Member (Voting Rights)
Thanks very much Stewart. I do note that all three articles are from the same person: Fraser C. Henderson. A quick search on Pubmed shows that there aren't really that many studies on this subject. Could @Jeff_w perhaps share some of the publications that made him think CCI might explain ME symptoms?
@JenB I'm also a bit concerned about what Trish said. As far as I understand the surgeries to fix CCI are no joke and can be life-threatening. Because of your high profile and spectacular recovery ME/CFS patients from all over the world will be asking themselves the question whether they have CCI and whether surgery might help. Some are desperate and willing to try everything to relieve their suffering. So I hope that in your future Medium posts there will be a clearer warning about the danger of these surgeries and the fact that the link between CCI and ME is currently not supported by scientific evidence.
Last edited:
Alvin
Senior Member (Voting Rights)
I had something similar happen when i took the train to an ME conference last year, afterwards i felt like someone put me on a roller coaster or centrifuge. Happened again when i was being driven but didn't happen when i was driving. Since then it stopped happening. No idea what it was or why but hopefully yours will also diminish or go away.
I guess the possibility that this is not the case is a big part of our worry. That's why we need blinded research as a priority.
In the meantime, a lot of people are going to be feeling uncertain and potentially are going to go to a lot of effort and cost to try to check out the possibility of CCI, facing contempt from doctors along the way. And, if it all doesn't pan out, as so many hypotheses about ME haven't in the past, then it's just going to consolidate medical skepticism about ME/CFS.
We can do a lot to speed up good research. @JenB, you are in a perfect position to push for good research, not just the publishing of case studies that won't really answer the concerns about issues with diagnosis or the questions about how prevalent CCI might be in people with ME.
People on this forum can contribute to advocating for and designing that good research.
I guess the possibility that this could be a bad thing is something we really need you to see.
People diagnosed with ME/CFS who seemed to benefit from rituximab early on might have been totally convinced that it helped and a few may well have had a condition that the rituximab genuinely did help. And maybe they shared their story and encouraged people to try it outside careful trials. That didn't work out so well. We can't keep doing that. It causes despair and hardship for people with ME and their families and it provides grist to the mill for those who want to see us a deluded hypochondriacs.
Last edited:
Jonathan Edwards
Senior Member (Voting Rights)
As indicated above, Henderson deals with Chiari Malformation cases. This is different from isolated CCI and should not be confused with it.