lassesen 8:28 am on December 22, 2019

The CCI thing and ME/CFS

A reader has asked me about CCI because of this post on Facebook

CCI – Craniocervical instability – Read me-pedia.org article on it too

Back to strict scientific method…

If I said, “ME/CFS – has blood diagnose, have not found a single patient whose does not have blood, not a single one” people would look at me a little strange. Why? Because it is known that everyone has blood.

What is needed is simple and needs some numbers done in a proper study:

Is this specific for CFS or common across many conditions?
- What percentage of people without CFS has CCI
- What percentage of people with IBS but without CFS has CCI
- What percentage of people with FM but without CFS has CCI
- What percentage of people with Alzheimer’s have CCI
- What percentage of people with Physical Brain Trauma have CCI
What percentage of people is recommended treatment 100% effective for?
- Spontaneous remission is well know in ME/CFS with people assigning their last attempt to be the cause. It’s typical human association

Reading the up to date, with extensive documentation on ME-Pedia article on CCI I am left with the impression that it will be found in many patients and that this would be implied by the name of ME which means myalgic encephalomyelitis. Encephalomyelitis is inflammation of the brain and spinal cord. This was the original name and accurately describes typical findings of MRI and SPECT scans (see this post). ”

My take is that the inflammation is primarily caused by metabolites from the microbiome. I say primarily, because parts of the brain may react to those metabolites and proceed to dump other signalling chemicals/metabolites into the body. A feedback loop. A feedback loop with a viable simple point of interruption — the gut microbiome.

Bottom Line

Remission from CCI is theoretically possible and has probably happens. Some chiropractors will likely claim that appropriate adjustment may be sufficient. A surgery impacts the spinal cord and may easily interrupt some feedback mechanisms. Below is the results of people who have had CCI

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6821667/

Published 2019, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6821667/

The problem is that there is not a single multi-patients study on ME/CFS patients have been published on it. Looking at the multi-patient study with five years of follow up, show above- yes! It can result in improvement: totally expected because of its impact on the inflammation of the spinal cord. As a universal (or even common) method to full remission — the evidence does not support it.

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Dan 9:37 am on December 22, 2019

Here’s a study where “findings of obstruction of the cervical spinal canal were found in 100 of the 125 patients (80%) with cervical scans” in patients with ME/CFS. Not 100%, but still surprisingly high.

https://osf.io/qwn5h/
lassesen 2:15 pm on December 22, 2019

The issue is whether this is a cause or a symptom. With a disease that was very early identified to Encephalomyelitis, inflammation of the brain and spinal cord. It means that a certain percentage may be more inclined to have CCI once the inflammation starts. It may be similar to the smaller heart size seen in ME/CFS that is well documented. These pre-existing states PLUS whatever caused ME/CFS results in things like CCI being more common.

Cause and Effect direction has not been estabilished.
- Dan 2:22 pm on December 22, 2019
  
  I agree. It’s worth noting as well that at least in Jennifer Brea’s case, she spent the last 4-5 years basically bedridden, and made a lot of the documentary ‘Unrest’ from her bed — her head propped up with pillows to support it. That may have put some pressure on both her spinal cord and spine itself, possibly contributing to her cranioservical instability.
  
  It would also be interesting to study if this happens with other conditions like MS, ALS, etc.
Bridget Copley 7:33 am on December 23, 2019

There have certainly been people in the group that have not passed the initial screening for various surgeons. I don’t know what Ivan Watson is talking about.

Can you point to who said it would be “a universal (or even common) method to full remission”? I suspect this is a straw man argument. If you look at Jen Brea’s disclaimer page (https://medium.com/@jenbrea/this-is-a-disclaimer-ad6149599755) she says, “there is no systematic evidence that if you have both CCI and ME, as I did, that a fusion will resolve your ME symptoms.”

You say that propping your head up with pillows may contribute to craniocervical instability. Evidence please, or is it just a speculation?
Ivan Watson 8:05 am on December 23, 2019

Ken, nobody said surgery was a universal method to full recovery, actually unless VERY severe cases I don’t think surgery is worth the risks and possible bad outcomes.
Jen B 7:55 am on December 24, 2019

It is a shame you used Ivan’s comment to motivate your post. According to self-reports on three online polls, the diagnosis rate among ME/CFS patients who chose to get imaging and be evaluated (a self-selecting group) is around 70-79% *for all neurosurgical conditions* associated with EDS: Chiari, CCI, AAI, tethered cord syndrome, cervical stenosis, subaxial instability, spinal fluid leaks, vascular stenosis and a few very rare things like Eagle’s Syndrome. Intracranial hypertension is very common. I have no idea how many people in our Facebook group have been diagnosed but it’s definitely not 300. We do have a poll that tracks diagnosis, but you cannot simply add up the number of people who have been diagnosed with X, Y, Z because most people will have 2-4 diagnoses (of about 8 possible). The overlap just between CCI and AAI is probably 90%.

This is too important a topic to be handled like this.

As for being bedbound causing my ME, typically the symptoms of a pathology cannot precede the pathology. The effects generally comes after the cause. Tethered cord syndrome I have had my entire life. Some people think it might increase the risk of developing CCI/AAI.

I do think if you can get MCAS/inflammation under control, self-healing of ligaments or dura to a great degree may be possible, particularly if there is no mechanical damage from physical trauma or genetic connective tissue disorder. This was very much Julie Rehmeyer’s experience with mold avoidance, until a very bad mold exposure sent her reactivity through the roof. (She just had a craniocervical fusion his week.) It also depends on the pathology. You cannot widen a narrowed spinal canal. You can, through anti-inflammatories, potentially reduce symptoms, as suggested by Andrew Holman’s work.
- lassesen 8:25 am on December 24, 2019
  
  This post was forwarded to me with the person considering abandoning their current treatment course.
  
  I checked ME-Pedia views and then proceeded to find what else is known from published studies on CCI.
  
  My standard is to work from published studies. Polls and support groups are too likely to be bias (as a professional statistician in a prior career, they are very low grade evidence… bordering on “fake news” too often.)
- Dan 9:05 pm on December 24, 2019
  
  Hi Jen,
  
  Thanks for your reply. I appreciate your clarifying certain points.
  
  “As for being bedbound causing my ME, typically the symptoms of a pathology cannot precede the pathology. The effects generally comes after the cause. Tethered cord syndrome I have had my entire life. ”
  
  I wasn’t suggesting that being bedbound caused your ME, but that perhaps the way you had to prop your head up and lay in one position for years may have contributed to the spinal issues and/or CCI.
  
  I didn’t know you were diagnosed with tethered cord syndrome prior to your ME diagnosis. Or did a doctor tell you he thought you probably had it from birth?
  
  Anyway, glad to hear you’re doing better!