Great News on upcoming treatement

[georgina699]

https://www.pnas.org/doi/10.1073/pnas.2302738120

"Scientists in the small field of ME/CFS research are excited by the discovery, which points to a potential — and badly needed — treatment strategy. For Hwang, developing a treatment for the illness is now “what keeps me going.” His small laboratory, just four scientists, is planning a clinical trial with a drug that recently came onto the market for another disease". (c) WaPo

 

[Hoosierfans]

What’s the “drug that recently came onto the market for another disease?”

 

[WhiteLynx]

What’s the “drug that recently came onto the market for another disease?”

Isn't it Salubrinal or Relyvrio which had been mentioned in the topic about WASF3?

 

[Goldfinch]

I read that it’s Relyvrio.

 

[Hoosierfans]

I read that it’s Relyvrio.

How does that drug work for me/CFS? Looks like it’s approved for ALS. Sorry…don’t understand the science behind it. 😊

 

[Aidan Walsh]

Any more News or updates on this medicine or Clinical Trial proposed?

 

[Rufous McKinney]

This is discussed in another thread around here someplace

 

[Aidan Walsh]

I think I recall now it was mentioned by some NIH Team & the ME Association thinks it should not be used by anyone until more work is done outside the trial.

I think the family had also some other type of genetic illness, she was the only one who was sick with fatigue issues she also had breast cancer twice. Maybe there is something more natural to try instead? thanks Rufous

 

[Murph]

Relvyrio is a combo drug, with sodium phenylbutyrate and taurusodiol.
Basically the latter is just tudca, a bile acid you can buy in a supplement store. The former is a common enough drug but you'd need to get it approved off label. https://www.mayoclinic.org/drugs-su...rate-oral-route/side-effects/drg-20066057?p=1

 

[Aidan Walsh]

Relvyrio is a combo drug, with sodium phenylbutyrate and taurusodiol.
Basically the latter is just tudca, a bile acid you can buy in a supplement store. The former is a common enough drug but you'd need to get it approved off label. https://www.mayoclinic.org/drugs-su...rate-oral-route/side-effects/drg-20066057?p=1

thanks, Murph, this reminds me of bile acid medicine used in Habba Syndrome by Dr. Habba an endocrinologist in America where they take one pill at meals.

I do not recall the name of the bile medicine it is but it is on YouTube Habba Syndrome. I still believe this condition we have is undiagnosed Nutcracker Syndrome none of the gold standard tests have been done.
I sent some PDFs to Linda at the OMF.

Even the NIH posted the link below on 4. full Doctor/GP UK on Nutcracker Syndrome she was even told she had FND. My left kidney on a simple ultrasound is lopsided & large they were trying to say Dromedary Hump, I believe I was Born now with Nutcracker Syndrome & or could be Pelvic Congestion Syndrome. One Urologist suggested my kidney was Congenital.

They never did the Color Doppler ultrasound or the proper Veno scans or 8 hours of supine proteinuria & 16 hours of urine standing proteinuria collections

 

[Aidan Walsh]

I also found something else a rare genetic illness may not be rare after all it is called Fabry Disease. I came across this in an autopsy paper the Man had compression Mesentera/Aorta veins and he also had Fabry Disease diagnosed