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

I googled Compression Syndrome but only came up with Compartment Syndrome

Compartment Syndrome:
Compartment syndrome is a condition in which increased pressure within one of the body's anatomical compartments results in insufficient blood supply to tissue within that space. There are two main types: acute and chronic. Compartments of the leg or arm are most commonly involved

Are they the same thing?
 
Mij said:
Are they the same thing?
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No. A compartment syndrome is where a body compartment has an enclosing structure that fixes its maximum volume. The common example is a muscle compartment bounded by a non-stretchable epimysium or fascia. If the tissue swells new blood cannot get in at all. A compression syndrome is where a band or bar presses on a vessel and stops normal flow.
 
Braganca said:
https://x.com/janetdafoe/status/1848483821395816468?s=6
“This is going to be a great podcast series with Dr. Kaufman and Dr. Ruhoy. You might want to subscribe so you don’t miss any!❤️”
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I've glanced through the transcript. There seems to be a lot of telling each other what wonderful doctors they are and how exciting it is to be working together. Lots of stuff about MCAS and connective tissue and CCI/AAI/tethered cord which I think Dr Ruhoy is involved with.
I don't think I'm going to watch their future podcasts.
 
Brevundimonas spp. have been isolated from multiple environments, including soils [9–21], deep subsea floor sediment [22] activated sludge,[23] black sand, [24], deep subsea floor sediment [25] numerous aquatic habitats [26], purified water [27] and also from the condensation water of a Russian space laboratory [28].

Maybe the surgeon washed his hands with purified water?
 
Jonathan Edwards said:
Brevundimonas spp. have been isolated from multiple environments, including soils [9–21], deep subsea floor sediment [22] activated sludge,[23] black sand, [24], deep subsea floor sediment [25] numerous aquatic habitats [26], purified water [27] and also from the condensation water of a Russian space laboratory [28].

Maybe the surgeon washed his hands with purified water?
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Just so I can get my head around this and I'm clear in what you are implying that "Maybe the surgeon washed his hands with purified water?". I hope they wore gloves when they operated. So would that mean if we tested others who have had different surgery's that this would also end up in the C1 ligament?

I asked the question on x to see if they had studied as a control, who in the general population had Brevundimonas different areas as the group are building it would seen a "Tissue Analysis pipeline" for EDS, Lyme, Long Covid and Lyme. Be interesting to find out if they respond to my question and how they respond
 
Tilly said:
Just so I can get my head around this and I'm clear in what you are implying that "Maybe the surgeon washed his hands with purified water?". I hope they wore gloves when they operated. So would that mean if we tested others who have had different surgery's that this would also end up in the C1 ligament?
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The sample of ligament will have been cut out with surgical instruments, put in a specimen bowl or bottle, moved to a pathology container, taken out and sliced by a pathologist, maybe transferred to fixing and embedding solutions, sectioned and so on. What is reported here is DNA sequence from the organism. If this organism is everywhere, in water and dust, then a few bits of DNA could easily get into any sample. It need not mean that it was ever there in the patient. Moreover, if the primers used to pick out DNA sequences for the organism were not so specific it might just be a false positive.

The problem is that it is vanishingly unlikely that this organism has anything to do with a problem with someone's neck and certainly nothing to do with EDS. It is a thousand times more likely that this is a contaminant. And even if there was some DNA there, and it turns out bits of the organism, having been eaten (we probably all eat some of it every day) got to a tissue via the blood there is no good reason to think it means anything. All sorts of junk from micro-organisms can be extracted from human tissues if you use techniques that are ultra-ultra-sensitive.

I am afraid that my reading of the 'science' put out by the Polybio people in the past (I forget details) has led me to think that they have no understanding of how to put findings in context. I suspect that we will see all sorts of claims of persistent infections that nobody will be able to replicate. What on earth have EDS, Lyme and Long Covid to do with each other anyway?
 
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I started reading the article but found the advertisements so objectionable that I decided not to read on. (objectifying semi naked women). I hate click bait articles. I doubt the article was medically accurate anyway.
 
She was diagnosed with ME by her GP. Amy was eventually diagnosed with a condition that means her skull isn't securely attached to her spine. She came across Jen's TED talk and how she went into remission from having surgery. She has put up a GoFundMe to pay for the surgery in Spain.
 
Amy tried "every diet, supplement and medication" she could before stumbling across a TED Talk by American filmmaker Jennifer Brea, who claimed she had put her ME into remission through neurosurgery.
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"I cannot explain the excitement I felt when I thought that there was a cure – even if it meant going through major surgery," she said.

"I would have done anything at that point to get my life back."
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The first is a procedure that takes stem cells from bone marrow and injects them through the throat and into the ligaments at the back of the skull.

The second is a “brutal” neurosurgery using hardware to fuse the skull and the cervical spine.
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Amy said the latter would only be available to her in Spain at a cost of £80,000 or America for upwards of £200,000.

She added she must also have an operation to release her tethered spinal cord, which could cost between £17,000 and £20,000.
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There have been quack surgeons selling placebo surgeries for a very long time, since at least the time of William Arbuthnot Lane, but preying on pwME like this is the worst kind of exploitation of the vulnerable.

ME Action is culpable in this. So are the other ME organisations that have enabled or promoted this.
 
"The high cerebrospinal fluid MMP levels in the first cluster suggested that the tissues in their central nervous system were getting hit hard. Inflammation, a weakened blood-brain barrier, problems with nerve function, and, interestingly, conditions such as craniocervical instability could all be associated with excessive MMP activity."
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Abnormal associations with fractalkine and eotaxin suggest that the degradation and inflammation was “localized” and could be causing or be the result of issues like craniocervical instability.
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If there’s anything we want to see in this puzzling disease, it’s clusters that can guide treatment. Time will tell if this study was able to capture a craniocervical instability/spinal subset in ME/CFS. Hopefully, it will lead to a greater focus on connective tissue problems, MMPs, fractalkine, eotaxin, cerebrospinal instability, and other spinal issues, as well as ways to combat connective tissue damage.
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www.healthrising.org

Did a Lab Study Just Uncover a Craniocervical Instability Subset in ME/CFS? - Health Rising

A cerebral spinal fluid study finds a cluster of ME/CFS patients who may have spinal issues including craniocervical instability.
www.healthrising.org
 
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