USA: JAX ME/CFS Center and Derya Unutmaz news

https://jaxmecfs.com/2018/06/27/me-cfs-physician-spotlight-morris-papernik-m-d/

 

Needs a link

 

https://jaxmecfs.com/2018/07/12/advocate-spotlight-charmian-proskauer/

 

Solving the mystery of chronic fatigue syndrome

For decades, no one has known what causes myalgic encephalomyelitis (ME, commonly called ME/CFS). As a result, this debilitating disease has been very difficult to diagnose and even harder to treat. Now a collaborative JAX research center led by Derya Unutmaz, M.D., is diving deep into the biology of ME/CFS patients to find a root cause, which may lie in their own immune systems. If successful, the work will provide patients with clear diagnoses and effective therapies.

 

Video that came with the article. Very powerful.
ME patient Shannon and her parents tell her story. Interviews with Lucinda Bateman, Morris Papernik and Derya Unutmaz.

https://www.youtube.com/watch?v=-0qjBuFryAY

 

This is the other video from The Jackson Lab that accompanies the article above. Researcher Julia Oh, Ph.D., discusses the microbiome and their research approach.

https://www.youtube.com/watch?v=8bBndXDxdx8

 

All of the "We found X about MECFS" state this as if there is one such disease. But it seems be in part a diagnosis, including such factors and PEM, and part dead-end file for "stuff we can't diagnose". Thus, I think any assumption that we all have the same disease is ill-founded. It would be nice if so, our situation is much simpler if we all have a single disease or several that are all fingers of one hand. Nature isn't nice, so I'm increasingly betting we don't.

 

I suspect you may well be right. But I also suspect that if similar situations were looked at throughout history, the discoveries that paved the way for better understanding this, may well have been initially falsely premised on there being a single common illness. So I still see such work as very heartening.

 

How many other conditions have PEM, where day after is typically worse than day of, with day 3 showing further decline in the full condition? Complication is that there are vague definitions of 'exertion'. For me, attempting to do normal activities without breaks lying flat in a quiet spot is much worse than using a stationary bike for a brief period. The latter is the worst way to simulate PEM I can think of, yet researchers have placed it first.
I agree that however research gets started it's far better than the past 30 years of "oh, you mean it's about those malingering whiners".

 

Dr Chu's paper where she found that people with ME had inflammatory responses to exertion was important. My first sign I have overdone things is a sore throat and swollen glands. This is not what happens in MS or RA where they become fatigued after overexertion.

The CPET findings give a scientific grounding to what we experience but the important point for PEM is that we do not recover the way other illnesses do.

So our PEM goes beyond post exertional fatigue but includes unique characteristics, is often delayed and is prolonged.

That does not seem so very hard to understand, but the medical profession is still hung up on the stupid idea we have an illness of fatigue thanks to CFS, whereas we have a complex multisystem disease.

 

"My first sign I have overdone things is a sore throat and swollen glands."
We're a motley group. I've never had that after doing overdoing thing. I do get various other fun effects.

"stupid idea we have an illness of fatigue thanks to CFS"
The KGB could not have come up with a better diversionary misnaming. Bravo to whomever invented "CFS", they'll reach the Inner Master Level in Dante's hierarchy.

 

https://www.jax.org/news-and-insights/2019/march/interview-with-courtney-gunter-about-mecfs-outreach

 

About 30 mins long.

Really good discussion. Wise. Seems to summarise the history of ME. Felt quite emotional but that may have been me today.

 

Interesting discussion with Dr. Gurwitt.

I've enjoyed watching the two videos with Ron Tompkins interviewing patients (this one and the one with Rivka). His empathy towards ME/CFS patients is very touching.

 

"We previously posted that the JAX ME/CFS CRC project was temporarily put on hold during the beginning of 2020 due to COVID. In August of 2020, we started receiving samples again from subjects in our ME/CFS and healthy control cohorts, and our clinical partners at the Bateman Horne Center have now finished collecting samples from time points 1 and 2, and are working on the last set, the time point 3 samples. To date, we have over 450 blood and stool samples that have been collected across the 3 time points, and will likely have close to 500 samples once we’re done collecting time point 3. In early March 2021, we began our flow cytometry experiments on all of the blood samples we have received to look for differences in the immune cells between people with ME/CFS and healthy controls. We run all time points from the same subject in one experiment so that they can be easily compared to each other. We hope to run all the blood samples through flow cytometry in the next year or so, and analyze all of the data so that we can see the functional differences between healthy controls and people with ME/CFS.

Another exciting development at our Center is that we have very recently received NIH and Institutional Review Board (IRB) approval to begin an additional collaboration with the Bateman Horne Center to collect samples from a new cohort of patients who previously had COVID-19, and have since been experiencing ME/CFS-like symptoms, or “long-COVID.”
....."

https://jaxmecfs.com/2021/04/27/an-update-from-the-jax-me-cfs-center/

 

MECFSnet Webinar: The Jackson Laboratory

"In the latest webinar in the series, Derya Unutmaz, PhD, the Principal Investigator and Director for the JAX Center for ME/CFS, and the team at JAX discuss their latest findings."
https://jaxmecfs.com/2022/04/14/mecfsnet-webinar-the-jackson-laboratory/

Direct link to webinar.

Code:

https://youtu.be/AohsUrO0WYw

https://www.youtube.com/watch?v=AohsUrO0WYw

 

text: We are almost done with our major #MECFS paper using AI-powered multi-omics. We hope to submit the preprint to bioRxiv very soon and will share it here as soon as it is out. I think it will make a big impact on understanding this complex disease. I am very excited about it! ☺️