CDC Roundtable, Multisite Study, Klimas' attempt to reset ME/CFS (very interesting!)

[Mary]

Another great article by Cort:
https://www.healthrising.org/blog/2...tisite-klimas-reset-chronic-fatigue-syndrome/

And Nancy Klimas is being brilliant again with securing funding for an ME/CFS trial, using Parkinson's Disease this time:

At least one major disease group thinks Dr. Klimas has struck gold with her approach. The Parkinson’s Foundation is apparently so excited at the possibilities of computational biology that they wanted to transport her and her entire team into Parkinson’s research. When that thankfully failed, they gave her a nice, big budget to get access to the computational modeling platform and train another team how to use it.

(The Parkinson’s effort will use the Institute’s modeling platform to understand the dynamics of the central nervous system in producing the disease. Studies are already underway using mouse models (Parkinson’s has a couple of them) to improve the current model.)

In return, she asked the Foundation to fund a 20-person ME/CFS trial. That trial is expected to begin this fall. It will include post-menopausal women and use the same drug combination (etanercept and mifepristone) used in the GWI trial.

 

[Murph]

Imagine having so much money you can just splash it around, including by funding clinical trials in other diseases!

 

[Mary]

Imagine having so much money you can just splash it around, including by funding clinical trials in other diseases!

We can dream, right? A few million here and there, they'll never miss it - seriously!

Parkinsons got $169 million in 2017 from the NIH, for a U.S. patient population of 1 million (https://www.michaeljfox.org/page.html?id=131_ ) plus another $16 million from the Department of Defense in 2017 (and has received a total of some $400 million from the Department of Defense over the years since 1997). compared to around $16 million from the NIH in 2018 for ME/CFS with a median patient population of 1.5 million (U.S.)

 

[junkcrap50]

Klimas's trial using etanercept and mifepristone is big, big news. I am more hopeful and more excited on this study of hers than of the research from Ron Davis.

To understand her CFS/ME study and how her computer modeling works. You have to watch this video. It's phenomenal.

She took a lot of metabolic, genetic, and exercise stress test data; built a computer model of how everything interconnects; trialed and error'ed different ways to balance and get the model to get healthy results; and then tried these drugs to "cure" her model. She then used did a rat model of GWI to confirm her computer model for GWI and cured the rats of GWI. And last fall started an in person study for GWI using this same model and drugs. So she likely has had some clinical results from her GWI patient study using etanercept and mifepristone that she feels confident to try it in CFS patients.

Here is a thread about the video linked and her study. https://forums.phoenixrising.me/index.php?threads/discovery-forum-2017-dr-nancy-klimas.61154/

 

[raghav]

Anybody know the exact protocol of Nancy Klimas' CFS trial ? I might take it up with my rheumatologist.

 

[junkcrap50]

Anybody know the exact protocol of Nancy Klimas' CFS trial ? I might take it up with my rheumatologist.

I don't know if that is wise. But here is the protocol they're using for the GWI human study. Supposedly, according to Cort, they are using the same drug combo (but maybe different dosing, duration, and variables) for post-menopausal CFS women. Also, Cort (or someone in the comments) said that the protocol and drugs will be different for study of CFS men. Also, the protocol and drug combo may be different for pre-menopausal women.

 

[raghav]

Thanks @junkcrap50 for the protocol. I think this is much safer that Copaxone. LOL.

 

[raghav]

If Ron Davis' team has access to Nancy Klimas' mathematical model, it will be fantastic !. They can see whether the metabolic trap hypothesis is consistent with Klimas' model.

 

[Hip]

The results of my own test of the mifepristone HPA-axis reset are given in this post. I had some negative side effects, and those remained for a good 6 months, slowly fading, but have not yet completely disappeared.

The impression I got with mifepristone is that it does make changes on a semi-permanent basis. That is, it's not just a regular drug, but does performs a "reset" which is permanent or at least long-lasting. So if you get beneficial changes from the mifepristone reset, then that's good; but if you experience side effects, then that is not so good.

 

[Mary]

THIS THREAD IS BEING TEMPORARILY LOCKED PENDING MODERATION REVIEW

ETA: AN INFLAMMATORY POST AND RESPONSES THERETO HAVE BEEN DELETED AND THIS THREAD IS NOW REOPENED