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

The CCI study that Michael VanElzakker is recruiting for

https://www.youtube.com/clip/UgkxEujY3nxq-JOA_VuGFaFKUjhNaJRxMARj

 

The latest thing being marketed to people with ME by Drs Ruhoy and Kaufman.. abdominal compression syndromes or iliac vein compression. Seems like lots of hospitals happy to diagnose based on MRIs and stent patients. Reports of no effect on symptoms and sometimes pain from stents.

https://www.patreon.com/posts/11270...UF-1KbulhV_1ET2elw_aem_OUC-K_f67YpwK__SdVkpUA

 

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?

 

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.

 

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!❤️”

 

Time the sideshows closed down I think.

 

“In patients who underwent CCI surgery, we recovered Brevundimonas genomes from the C1 ligament,” says Dr. DuPont, who is studying the role of persistent pathogens in #complexchronicillness. “These patients have undergone microbiome translocation from the intestine to ligament.”
https://twitter.com/user/status/1870960862674252034

 

2/ PolyBio is dedicated to helping build tissue biobank infrastructure for complex chronic illnesses associated with pathogens. PolyBio is partnering with Dr. DuPont & his team on the “Tissue Analysis Pipeline,” an ongoing project you can read more about here:
polybio.org/projects/the-organism-identification-pipeline/
https://twitter.com/user/status/1870960869427089543

 

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?

 

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

 

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?

 

Article about a woman with ME/CFS and diagnosed CCI and tethered cord.

https://www.thesun.co.uk/health/32671565/mum-skull-spine-daughter-nursery-glandular-fever/

 

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.

 

I haven't looked but it is very curious that, when both conditions are rare, everyone in this story has both CCI and tethered cord.

 

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.