1. Guest, the 'News in Brief' for the week beginning 23rd January 2023 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

Discussion in 'ME/CFS research news' started by ME/CFS Skeptic, May 23, 2019.

Tags:
  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,823
    Location:
    London, UK
    I have not had time to read Jen Brea's story in full . However, I think some of her starting facts may be wrong. Looseness of craniocervical ligaments does not cause the skull to drop as far as I know. The skull is bone and sits on the bone of the first cervical vertebra (atlas). Since there is no gap, loosening of ligaments is not going to make the bones any nearer.

    I doubt that craniocervical fusion raises the skull up in any way. It just fixes it to the atlas and axis. During the years that I referred patients for surgery like this nobody ever suggested that the skull was raised up.
     
    TrixieStix, Annie, Cheshire and 6 others like this.
  2. Guest 102

    Guest 102 Guest

    It is truly bizarre, from where I sit, to witness all this unfold. I was diagnosed in Glasgow in an NHS neurology clinic in early 1984, my case 'classic ME', as documented by Melvin Ramsay and Peter Behan after a Coxsackie outbreak in west of Scotland. I have no idea what Jen Brea has, but I have genuinely thought from Day 1 that we do not have the same illness. Everything Jen has written since her successful fusion surgery - as curative for 'ME'- pretty much confirms that. Just to add, back in 1980s in UK, pre-Wessely, when you were diagnosed with ME, it was not referred to as RamsayME, only ME. RamsayME would have been a tautology, as it was the only ME there was. RamsayME is now a necessary descriptor as there has been such proliferation of definitions of ME since then.

    Edit - typos
     
    Last edited by a moderator: Jun 24, 2019
    Webdog, Liessa, Sisyphus and 6 others like this.
  3. Trish

    Trish Moderator Staff Member

    Messages:
    44,485
    Location:
    UK
    @JenB said:
    This doesn't make sense to me either. I think it's anatomically wrong. Ligamentous laxity causes too great a range of movements between skull and neck, (nodding and turning the head side to side) which causes compression of nerve tissue. It's not the skull sinking into the spinal column.

    I looked up cranial settling.

    https://www.ncbi.nlm.nih.gov/pubmed/7444048
    So it seems cranial settling is about degeneration of the atlas bone. Nothing to do with ligaments.
     
    sea, Liessa, obeat and 11 others like this.
  4. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
    3,113
    Location:
    Belgium
    I know little more about this. But I found this reference (Young et al. 2014) which states:
    The study you quoted is a bit old (from 1980) and in the full text it explains that cranial settling:
    So I assume weakness or disruption of the ligaments is part of the causes of cranial settling (perhaps a necessary but not sufficient cause?, I don't know).
     
    Mariaba, Barry, MEMarge and 3 others like this.
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,823
    Location:
    London, UK
    One particular ligament, and as far as I know only one, when ruptured, will cause settling of C1 on C2 with the peg of C2 passing up towards the brainstem. This perhaps the key reason for operating on RA cervical spines. But this is a highly specific problem seen in RA related to bone erosion where the ligament is attached. It is the transerve ligament of the body of C1, which completes a ring around the peg of C2.

    If this was the problem for those recently having cervical surgery in the context of ME I think we would know about it because the radiographic features are barn door and not discussed in terms of ligamentous instability. The ligament has actually failed completely and that is secondary to the fact that the bone has also dissolved away.
     
    sea, Barry, TrixieStix and 2 others like this.
  6. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
    3,113
    Location:
    Belgium
    Do I summarize your view correct as: rupture of ligaments can be part of the process causing cranial settling, but for that to occur one would see damage to the bone as well?
     
    Dx Revision Watch and Hutan like this.
  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,823
    Location:
    London, UK
    That is the situation in RA. Violent trauma might rupture the ligament I guess but I would expect there to be a fracture with it in most cases. The main point is that the position of the peg of C2 would be clearly abnormal. All the discussions I have seen in relation to CCI in the context of ME or EDS talk about a decreased angle between the anterior wall of the posterior fossa (skull base) and the vertebral column, which is something much more subtle.
     
    oldtimer, Barry, TrixieStix and 3 others like this.
  8. Guest 102

    Guest 102 Guest

    Furthermore, Jennifer writes in her Medium piece: 'It is, nonetheless, a story of which I am uncertain, that has some significant gaps, and that I will never be able to prove in my specific case, even if the scientific literature one day validates aspects of it in general.'

    But then later says:

    'What is the mechanism or ongoing damage that prevents the vast majority of us with ME from ever recovering? ... How does that mechanism cause the cluster of symptoms we call ME? I know that in my case, the ongoing, post-viral damage was damage to the ligaments in my neck since that is what caused my craniocervical instability and because treating that instability resolved my post-viral symptoms.'

    How does she *know* the ongoing postviral damage was to the ligaments in her neck? How can she be certain?

    She is contradicting herself in her article.
     
    Grigor, Liessa, oldtimer and 10 others like this.
  9. JES

    JES Senior Member (Voting Rights)

    Messages:
    207
    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.
     
    Medfeb, sb4, boolybooly and 1 other person like this.
  10. Guest 102

    Guest 102 Guest

    Inter
    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.

    fever.jpg

    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.
    .
     
    Last edited by a moderator: Jun 25, 2019
    JemPD, oldtimer, Estherbot and 5 others like this.
  11. Marky

    Marky Senior Member (Voting Rights)

    Messages:
    577
    Location:
    Norway
    Did ur doctor actually say meme haha what a champ
     
  12. Trish

    Trish Moderator Staff Member

    Messages:
    44,485
    Location:
    UK
  13. lunarainbows

    lunarainbows Senior Member (Voting Rights)

    Messages:
    2,738
    Hi, as someone who, having read Jeff and jen’s story, made myself more ill by pursuing this avenue - at great personal distress, which I won’t go into here as I’ve detailed it elsewhere, I wanted to say one other thing.

    Dr Bolognese, when you apply to be a patient, asks you to fill in a long questionnaire. This questionnaire has many symptoms and asks you to tick yes or no, presumably to see how many symptoms line up with CCI or chiari symptoms as that’s what he specialises in. As I was filling in it, I noticed I was ticking “yes” to nearly everything, and so my immediate thought was “oh my gosh, I must have CCI and I must have chiari and..” because I was ticking yes to all these symptoms that a neurosurgeon had asked us to fill in. It caused me no end of distress.

    But the problem is nearly all the symptoms were non specific. It covered nearly all the M.E/CFS symptoms (except I think the light and noise sensitivity). I think it even mentioned chronic fatigue. It covered depression, anxiety and even autism and aspergers! I even started saying to my mum that she should look into CCI because she’s waiting on an autism diagnosis (I myself have an autism diagnosis).

    I think there’s something quite strange about that. What reason would there be for us to fill in this questionnaire in the context of asking to see a neurosurgeon? It reinforces our positive bias that we must have some terrible thing wrong with us, and need surgery, because we have these symptoms?
     
    Last edited: Aug 24, 2019
    Elestar, Tobedyl, Grigor and 25 others like this.
  14. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    2,635
    Location:
    betwixt and between
    Is the questionnaire similar to this 'Brainstem Disability Index'?

    Table 1
    Brainstem Disability Index

    The following 20 symptoms may be referable to pathology at the level of the brainstem. Please indicate yes or no whether your child has any of the following symptoms on a recurring or chronic basis.

    Double vision

    Memory loss

    Dizziness

    Vertigo

    Ringing in the ears

    Speech difficulties

    Difficulty swallowing

    Sleep apnea

    Snoring or frequent awakening

    Choking on food

    Hands turn blue in cold weather

    Numbness in your arms and shoulders

    Numbness in your back and legs

    Gets tired very easily

    Unsteady walking

    More clumsy than you used to be
    Urinates more often (every 1-2 hours)

    Irritable bowel disease or gastroesophageal reflux disease

    Weaker than you would expect in your arms or hand

    Weaker in your legs



    5% for each positive response, 0%-100%


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2940090/table/T0001/

    It's from:
    Henderson FC, Wilson WA, Mott S, et al. Deformative stress associated with an abnormal clivo-axial angle: A finite element analysis. Surg Neurol Int. 2010;1:30. Published 2010 Jul 16. doi:10.4103/2152-7806.66461
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2940090/?report=classic

    Apparently, the "Brainstem Disability Index" is part of the diagnostic criteria used by Gilete (Barcelona) for CCI. Don't know who invented this index, only found the cited table.
     
  15. lunarainbows

    lunarainbows Senior Member (Voting Rights)

    Messages:
    2,738
    No, it’s not like that, it’s on his website.

    http://www.chiarinsc.com/word/New patient form2xx.doc

    It’s got some of these things but a lot more.
    Some of these I can understand being on the questionnaire. Others i really cant.

    And in most of the categories, there are usually always one or two M.E related symptoms, which I end up ticking. eg unsteady on feet (dizziness). Or palpitations. Or klutzy (ok well this is due to my dyspraxia). Concentration. Pain, feeling hot, feeling cold, autonomic issues (can inc urinary changes), then there’s all the autoimmune diseases & allergies and asthma which I don’t see why it’s relevant to CCI, then there’s MCAS and EDS...and like I said autism and aspergers. And ocd and depression. And suidocal thoughts.
     
    Last edited: Aug 3, 2019
    Elestar, rainy, ladycatlover and 5 others like this.
  16. lunarainbows

    lunarainbows Senior Member (Voting Rights)

    Messages:
    2,738
    Did you get a reply Trish?

    Personally I am happy if someone is studying this. I just want to know how they’re studying it and on what basis. Like a proper study. Because we do need more answers from proper research, and not theories. Until then, theories are taken as fact by some people, and that’s what worries me.
     
    MEMarge, JoanneS, mango and 8 others like this.
  17. Trish

    Trish Moderator Staff Member

    Messages:
    44,485
    Location:
    UK
    No.
     
    MEMarge and lunarainbows like this.
  18. lunarainbows

    lunarainbows Senior Member (Voting Rights)

    Messages:
    2,738
    That’s surprising. It’s been a month since then.
     
  19. Trish

    Trish Moderator Staff Member

    Messages:
    44,485
    Location:
    UK
    It's a pity, but it's up to them what e-mails they choose to respond to.
     
  20. Grigor

    Grigor Senior Member (Voting Rights)

    Messages:
    391
    Is there a link where you posted it? I would like to read it if that's possible. Thank you in advance.
     
    vsou and MEMarge like this.

Share This Page