The brain tissue abnormality analysis, 2020, and other proposed studies, Polybio Research Foundation, van Elzakker, Proal, Fobes

Ravn

Ravn

Senior Member (Voting Rights)
https://polybio.org/portfolio/case-study-2/
The Project will bring together two Harvard teams to analyze autopsied ME/CFS brains for a range of potential abnormalities. These include collagen density, Virchow-Robin perivascular spaces, and amyloid deposition. Brains will also be analyzed for organisms capable of persisting inside neurons and glial cells, including bacteria, fungi, and viruses (including enteroviruses).
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They will apply to ME/CFS brains the same bacteria, fungi, and virus detection tools tools they use in Alzheimer’s brains.
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A separate study will involve analysis of ligaments and bone marrow obtained from ME/CFS patients during surgery. We are working to obtain ligament, bone marrow and muscle sample obtained during cervicocranial instability (CCI) surgeries. We plan to analyze these samples for collagen issues, mast cell activity, the presence of certain organisms, and potential mycotoxin damage.
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Involved: VanElzakker, Proal, Fobes
 
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More snippets from the different projects described on this site.

A lot of use of the term cutting-edge but no mention of financing (except for a donate button).

A hugely ambitious project - can it be real?
The Project will use novel and innovative tools to measure neutrophil activity in patients with ME/CFS, chronic lyme disease, and other related chronic inflammatory conditions. Neutrophils are white blood cells that play a central role in allowing patients to manage persistent bacterial, viral and fungal infections. The Harvard team who will perform the study has developed advanced microfluidic devices capable of measuring essential neutrophils functions tied to this antimicrobial activity – including how fast neutrophils obtained from a given patient can “swim” towards pathogens in the blood and successfully kill them.
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https://polybio.org/portfolio/neutrophil-activity-analysis/
This Project is a carefully conceptualized series of coordinated MRI and fMRI brain scans using ultrahigh resolution 7-Tesla imaging. With our planned sequences we can, in a reliable and replicable fashion, detect a range of potential symptom mechanisms such as structural abnormalities (e.g., CCI & Chiari malformation), neuroinflammation-related markers, autonomic dysfunction, blood/cerebrospinal fluid flow dynamics, intracranial pressure evidence, and metabolic impairment.
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https://polybio.org/portfolio/case-study-5/
The Project will use customized, cutting-edge computerized tools to identify communities of bacteria and viruses capable of persisting in the blood and cerebrospinal fluid of patients with ME/CFS and multiple sclerosis (MS). The analysis will be performed by a team at University of California, Berkeley who are characterizing global viral communities with the ambitious Uncovering the Earth’s Virome initiative.
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https://polybio.org/portfolio/case-study-4/
The Personalized Genome Project will run in the background of all PolyBio research projects. Acting much like a hydrogen bond in DNA, this project will connect genome data to complementary data found in our ongoing research.
This project will utilize cutting-edge tools and strategies for analysis to identify common genetic patterns across phenotype cohorts as well as individualized rare genetic markers in genes that could share similar phenotypes. Identification of both common and rare genetic markers will allow us to create more personalized research approaches that translates into more actionable data for the clinicians and patients that need it.
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https://polybio.org/portfolio/case-study-1/
The Project will analyze ME/CFS blood for a range of markers and abnormalities indicative of chronic inflammation and persistent pathogen activity. It is intended to build on the recent Jackson Laboratory study which identified a chronically activated immune response in patients with ME/CFS. This suggested “potential chronic infections or microbiome dysbiosis” in patients with the disease. It may also add specific details to Ron Davis’ finding that there appears to be “something in the blood” of patients with ME/CFS.
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https://polybio.org/portfolio/case-study-3/
 
Jonathan Edwards said:
I am afraid this looks very amateur and disorganised.
Projects of this sort, to be done properly, need big infrastructural funding.
It sounds like some people crowdfunding for their salaries rather than a serious scientific proposal.
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I think also that N=1 or 2 or 3 will be a problem as well. Did they represent the disease? how long were they sick for? Is aging involved in the pathology?
 
Well as a lay person I think that it Looks fantastic. I just hope they can get funding. I think that Michael VanElzakker is one of the compassionate commited and high end, connected, new generation we need. I must admit I was disappointed as I initially thought it was all funded and the age old question of “how” seems to uncertain .

I note in the imaging project its written that

In many cases, even basic techniques have barely been used to study patients with chronic neuroinflammation-related illness. Our programmatic approach systematically applies the most cutting-edge neuroimaging techniques to characterize potential central nervous system-based abnormalities in patients with understudied conditions such as ME/CFS, chronic Lyme disease, and EDS.
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Community Q&A with Polybio, October 26. Details and registration here:
https://www.meaction.net/event/community-qa-with-polybio/
Current PolyBio projects include:
  • A collaboration with top pathologists and virologists to characterize pathogens, immune activity, mycotoxins, and collagen abnormalities in skin biopsies and brain, muscle, and ligament tissue samples from patients with an ME/CFS or EDS diagnosis.
  • A collaboration with the world’s top ultra-high resolution imaging experts to perform cutting-edge 7-Tesla MRI field strength scans to investigate brain, spinal cord, neuroinflammatory, mitochondrial, blood vessel, vagus nerve & other potential issues in patients with ME/CFS.
  • The first-ever project to search for known and novel viruses, bacteria, fungi and associated immune activity in ME/CFS cerebrospinal fluid.
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Sounds impressive but... funding.
PolyBio is currently seeking funding for their collaborative projects. Even small donations can make a huge difference in getting the projects off the ground. Donors capable of making larger tax deductible donations can request a slide deck with additional information on study design and specific costs for each project.
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Why reserve the additional info on study design etc. for those "capable of making larger tax deductible donations"?
 
Just watched the stream. Was pretty impressed. Also a little confused at the current state of funding, since at times they seemed to indicate that some of the studies were already underway. (Edit: yeah they have no funding as of yet :( )

You can watch the replay of the stream here:


Ravn said:
Why reserve the additional info on study design etc. for those "capable of making larger tax deductible donations"?
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Based on what they were saying, I believe what they are getting at here is that they value the transparency of the funding, and want to allow larger donors to be able to fund certain aspects of the work selectively if they would prefer. I'm sure you could request the same thing as a small donor if you would be interested. That was my interpretation at least.

Also I believe they mentioned that each project would cost in the neighborhood of $500k-$700k USD.

One unrelated question I had was that Amy mentioned reading "dozens" of studies linking pathogen activity to connective tissue issues. Is this link really as well understood as that statement seems to suggest?
 
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berban said:
Just watched the stream. Was pretty impressed. Also a little confused at the current state of funding, since at times they seemed to indicate that some of the studies were already underway. But maybe I was misunderstanding.

You can watch the replay of the stream here:



Based on what they were saying, I believe what they are getting at here is that they value the transparency of the funding, and want to allow larger donors to be able to fund certain aspects of the work selectively if they would prefer. I'm sure you could request the same thing as a small donor if you would be interested. That was my interpretation at least.

Also I believe they mentioned that each project would cost in the neighborhood of $500k-$700k USD.

One unrelated question I had was that Amy mentioned reading "dozens" of studies linking pathogen activity to connective tissue issues. Is this link really as well understood as that statement seems to suggest?
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That seems like an awful lot. I'm not sure they can get there privately funding. Did MVE mention the PET study he was trying to do, I feel like I read that got funded a few years ago.

Edit: apparently this was never fully funded via another thread.
 
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Welcome to the forum Berban. :)

berban said:
One unrelated question I had was that Amy mentioned reading "dozens" of studies linking pathogen activity to connective tissue issues. Is this link really as well understood as that statement seems to suggest?
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In short, not that we are aware of. I'd also highlight that many studies linking pathogen activity to connective tissue issues doesn't necessarily mean that any link is well understood or actually there - after all there are many studies that 'show' that GET and CBT are useful treatments for ME...
 
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