My Experience at the Stanford Genome Center and w/ Ron and Janet

[Empi]

Ha difficult question, maybe a 7

It would seem to be a good sign that it’s almost September and they are still working on the metabolic trap hypothesis.

 

[ebethc]

We then talked about the metabolic trap and speculated about its potential causes and treatments, most of which have been covered publically (so I won't rehash here).

I've never seen specifics on metabolic trap, I've just seen it referenced... Has anyone ever explained what the metabolic trap actually is, or which pathways are affected? thx

 

[Learner1]

They are still testing it.

 

[ebethc]

They are still testing it.

but what is the hypothesis?

 

[JES]

but what is the hypothesis?

Basically all we know as of now is what is described in this article. It may be that this is related to the Norwegian researchers' findings about impaired pyruvate dehydrogenase.

 

[Sushi]

Thanks so much @Jesse2233 -- beautifully written, very inspiring!

 

[dreampop]

Good to hear from you Jesse. It'll be interesting to know how your blood, since you have improved dramatically, if it still shows the classical ME/CFS impedance signature.

 

[hmnr asg]

@Jesse2233 thank you for sharing,
I also went there and gave samples (I live 15 minutes from Stanford). I wasnt told about them sharing anything with my family doctor though. In fact they didnt even ask me who is my family doctor. In my case it would have been easy since my family doctor is also at Stanford.
Should I email Anna about this?

Also i did not get to meet Ron and Janet
I am going to the OMF symposium at the end of the month, so at least I will see them there.

 

[Gingergrrl]

It'll be interesting to know how your blood, since you have improved dramatically, if it still shows the classical ME/CFS impedance signature.

Do you know @dreampop (or Jesse) if Ron has tested patients with other conditions like POTS, MCAS, or various autoimmune diseases and if they have a different blood impedance signature than the ME/CFS patients? (Sorry if "blood impedance signature" is not the right term and I hope my question makes sense)?!

 

[wigglethemouse]

Do you know @dreampop (or Jesse) if Ron has tested patients with other conditions like POTS, MCAS, or various autoimmune diseases and if they have a different blood impedance signature than the ME/CFS patients?

Doesn't look like it yet @Gingergrrl according to the recent OMF Science Wednesday article.
https://www.omf.ngo/2018/08/22/rahim-esfandyarpour/

Since then I have spent many days and nights running experiments with the nanoneedle and studying the disease because I strongly believe there is always a way to find a solution if you try hard enough. Having that in mind and using our new technology, I spent months re-designing and micro-fabricating many more new sensors, and characterizing and calibrating them for this specific application. Then, for the first time, it was experimentally observed that ME/CFS blood cells display a characteristic impedance pattern when subjected to hyperosmotic stress that is significantly different to that of the healthy controls. The impedance pattern differences between ME/CFS and healthy blood in response to hyperosmotic stress suggest that the technology can potentially provide us with a unique indicator of ME/CFS. It’s very encouraging that the results thus far indicate that the technology can potentially establish a rapid and accurate diagnostic platform for ME/CFS while also providing insights into the biology of this complex disorder. Additionally, using this technology as a drug-screening tool, several small molecules have been tested to see how they can help ME/CFS cells to return to healthy cell behavior. These promising results suggest that the technology can potentially be used for rapidly screening candidate drugs and/or substances for ME/CFS.

Now, we are aiming to perform further experiments to understand the exact mechanisms contributing to the results and to test the performance of the assay on other diseases. Additionally, we are working on adapting the technology to a platform capable of pre-clinical testing of candidate drugs and therapies for ME/CFS patients, leading towards the development of a portable, handheld, and easy-to-use platform that can be operated by researchers and clinicians at any skill level.

From what I have read I don't think they can use Biobank samples due to special processing of the blood. This means that progress will likely be slow. In a recent update (Rons video maybe?) I believe that a paper on the nano-needle for ME/CFS will be submitted soon where we will learn more about how it all works.

If only this project had NIH funding so it could go faster but that was denied...........

 

[Vassie]

I've never seen specifics on metabolic trap, I've just seen it referenced... Has anyone ever explained what the metabolic trap actually is, or which pathways are affected? thx

Dr Phair has a project page here: https://www.researchgate.net/project/Etiology-of-Chronic-Fatigue-Syndrome
Here’s his diagram: