Notes from Avindra Nath Webinar


Founder of Health Rising and Phoenix Rising
Staff member
Cites Rituximab study as reason for study

Notes that fatigue is most disabling aspect of multiple sclerosis. Had seen ME/CFS patients before.

Infection triggers immune mediated brain dysfunction.
  • Phase I - Deep phenotyping - intramural program best at studying small sample sizes extensively...
  • Phase II - First identify biomarkers and then study them over longer period of time
  • Phase III study will target interventions for biomarkers that make it out of phase II
Phase I

Get a history - Gives them a decent understanding of the kinds of symptoms patients are experiencing
Then look at the brain =structure of the brain, functional - oxygen uptake and blood flow during tasks
Will put patient in metabolic chamber - quite unique - metabolism, kidney etc over night
Trans cranial magnetic stimulation - stimulate different parts of the brain and see if impulses travelling through the brain are - have world class experts - many of whom have developed this technology at the center
Autonomic nervous system functioning - more world class experts :)))


Founder of Health Rising and Phoenix Rising
Staff member
Immune System

Spinal Fluid and Blood - Centralized center of immunology - 1500 chemokines and lots of functional tests -
CSF - cell cytometry - analyse day of study- very very good at it, lots of data from other diseases we can compare too.

Depending on the finding from the first part - then can go deeper into specific cells such as B-cells
Largest immunology program of any place in the world; if they find something he can find an expert to assess it
Autoantibodies - Nath's lab - very good at accuracy, no false positives. Proteomics - spinal fluid - another area of expertise

Microbiome - send samples to expert in the field / missed stuff


Founder of Health Rising and Phoenix Rising
Staff member
Another aspect he believes is very critical that no one has approached before

Pluripotent stem cells - transfer immune systems to - developed in lab - cannot study neurons in humans - but new technology allows them to make neurons - if there's an inherent microglial problem we can identify it and do all sorts to tests on it

Can transfer blood to neurons and identify if they work abnormally ?

Voice keeps fading out for me.

Reproduce the phenotype - HIV - took many years and much laboratory work to show HIV was cause of AIDS
Technology today very different - can take person's cells - inject into mice - if cells have some abnormality in them can reproduce phenotype in mice.

Missed a lot


Founder of Health Rising and Phoenix Rising
Staff member
Study Population

Patients with clear infectious process

Reeves criteria - just wanted to use quantification method = his questionnaires had quantifications they could use
Bring patients in here and demonstrate they develop post-exertional fatigue using very rigorous criteria
Never have perfect criteria, not worried about heterogeneity, will find and identify outliers - can exclude them and add more patients, outliers can add a lot.

Say he finds 10 patients with certain phenotype - can focus on them - many ways to be able to handle heterogeneity and they have a lot of experience

Want to identify pathophysiological abnormalities
Nice cohort of Lyme patients - clear infectious onset - but cured


Founder of Health Rising and Phoenix Rising
Staff member
Last Slide
  • Nath - from neuroinfectious background
  • Hopes to find something that other experts can run with
  • Study design - very flexible at intramural center - never know what you want to do until you start testing the patients. Expects the study to evolve.
  • Advantages of intramural - world class experts / Disadvantages - can't do large studies;
  • Study members - 150 people giving variable amounts of time to the study, because controversy, some people said don;t want to mention my name, don't want to have anything to do with it...don't want to have their name out there - worried about criticism - push back from - can't force people to study the disease. We are on the same team, we want to help.
  • Comments - biases - if you have a large team; you can't do a litmus test for everyone....AIDS litmus study - never make advances, shouldn't worry about it. Goal is to get to the bottom of the disease.
  • Communication - are communicating, emails need to be short, never learned to type - types with one finger - we do the best we can.
  • Webpage - give answers to common questions.
  • Timeline - had to modify it to take on control group - had to go back to IRB approval - trying to hire coordinator - by the summer will start enrolling - will start with healthy volunteers to get it right and then the patients will come.


Founder of Health Rising and Phoenix Rising
Staff member

What steps are you taking to ensure that the researchers are not displaying biases

Got many questions like this. Cannot eliminate everyone's biases - cannot reach into their brain. We've designed the study so it's not a problem - the patients are coming from experts in the field - we will look at them and make sure they meet all the criteria. We are going to do very deep study - and we will quickly know if we're having outliers; we will see, for instance, if we have depressed people who do not have ME/CFS - they will stand out quickly.

He has designed his study to uncover immunological problems and that's what they have. Even if they have biases he should be able to design the study so those biases do not have an effect and he believes he has done that.

Two Day Exercise Testing Protocol - will they do the full Stevens Protocol? Major goal is to study neuroimmunology. Sounds like he really doesn't know about exercise testing. Sounds a bit peeved. He has received names of hundreds of people he should talk to....not going to change his career... will bring in experts....that will talk to the team...

Rituximab Studies - Spoken to Fluge/Mella - anyone who publishes their paper - you expect me to go and talk to them? Sounds really peeved...He has studied their papers - will do much more extensive studies.. not the way they do Science....doesn't make science

Adrenergic autoantibodies - he's found autoantibodies that no one else has been able to find....not going to look for specific autoantibodies - if there is something there he will find out?

Analyzing their samples - how often - most before and after exercise

Timeline - probably two years

All for communication with patients - values that very much - not sure of mechanism...

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