Event: Grand Rounds: Pathophysiology of Exercise Intolerance in Chronic Fatigue Syndrome Event Date: May 5th, 2020 David Systrom, MD

https://oshercenter.org/oc-event/gr...cise-intolerance-in-chronic-fatigue-syndrome/

 

Event Details
Date/Time: Tuesday, May 5 | 8:00am – 9:00am

It sounds interesting. Was anyone able to attend?

 

yes, it does sound very interesting. Sadly, I do not think Mestinon is going to solve the problem.

 

From 2018, David M. Systrom interviewed by Llewellyn King.

https://www.youtube.com/watch?v=FMaKfv8peww

 

For me, the most interesting part was toward the end (starting at 36.05).

https://www.youtube.com/watch?v=Q335NFTSZno

If I understood this correctly, there's a particular group of patients (the high blood flow group) that has the highest impairment of oxygen extraction. In other words, when their blood returns to their hearts, it has too much oxygen in it - showing that insufficient oxygen was extracted by the cells.

One explanation would be that oxygenated blood is bypassing the cells at a very local level, being "shunted" around the cells from the arterial system to the venous system. This may be happening at the level of the second smallest vessels - the arterioles and venules. He uses the term "arteriolar dysfunction."

An alternative explanation might be that the mitochondria in the cells are dysfunctional and aren't using enough oxygen. He says they have preliminary evidence to suggest that.

So the poor oxygen extraction could be caused by arteriovenous shunting, mitochondrial dysfunction - or both.

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If this has something to do with the next to smallest of blood vessels, the arterioles and venules, it wouldn't be the first time that they have been implicated in ME/CFS.

One of the historic outbreaks of ME occurred in 1975 at the Mercy San Juan Hospital Medical Center, located in a suburb of Sacramento, California. It was attributed to "infectious venulitis" - an inflammation of the venules.

http://www.oocities.org/sezar99q/MECFSInfectiousVenulitis.html

 

The description of the 1975 outbreak is very interesting, he describes very well many symptoms that most of us have.

 

Thank you for transcribing the video @Forbin.

At 40:45, Systrom shows that his patients are on average taking 234mg +/- 83mg of Mestinon. That's about 4x60mg pills per day. Wondered if he bumped it up at some point? From a blog post or two from some of Systrom's patients, I recall he was using 3x60mg.

ETA: It's pleasant to see a presentation with tons of hard data/evidence.

 

Thanks for posting this video. Does this suggest that people may be born with these sorts of vascular/cardiac issues?

What I found most interesting about Mona's testimony was that she never used the words PEM, or malaise. Also, when our family member was on the mestinon, aside from the side effects, the medication did stimulate the system. However, after 6 months, such a spectacular crash ( from exercise, I guess)took place that it was frightful to look at, and it would last for a year or more, and then there was always a more permanent down turn.

The use of Ritalin also worries me. Dr Teitelbaum used to suggest this too (as well as mestinon). The treatment proposals are not really new from the list that was in the video. These stimulants push the body, but a horrific crash can ensue many months down the line. As for anti depressants, well, most ME patients have been proposed these, and many have taken and tried them, and many have said they made them feel worse. I did find the work that was done by Dr Systom to be very interesting; it seems thorough, though other doctors many decades ago have suggested these problems. And I wonder if there is anything other than Mestinon that could help with these vascular/cardiac issues.

I just want to add that all the research really just adds to so much confusion: this is wrong that is wrong, the immune system, the endocrine system, collagen, cardiac system, GI function, and something in the blood, and viruses, metabolic trap, Dr. Naviaux's theory, etc , etc., and everyone finds some problem in the body, and there are all these pieces of a puzzle lying on a table and no one can seem to put the puzzle together. Very discouraging all this.

 

Yes, Trish, imagine walking 3 miles!! I am well, and I cannot at this point walk 3 miles!!! So many sick folks can't even walk around their houses adequately, some stay in bedrooms in the upstairs parts of their houses--never able to come downstairs for years at a time. I wish we could hear a bit more about the whole spectrum of patients who were being treated by Dr Systrom--would be very interesting.

 

A complete (preload) failure
Paolo Maccallini

https://paolomaccallini.com/2020/11/24/a-complete-preload-failure/