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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Does anyone know anything about the video interview that was just released? @Ben Howell ? I had an e mail from OMF, but the video link didn't work to the new interview.
Link from the e-mail didn't work for me either but the video can be found here:
Hi / Hola
@Ben Howell or @JaimeS , do you have any idea when the metabolomics analysis will be available for patients ?
It's great to have one of us working with the OMF team ! Congrats @JaimeS .
Thank you all !!!!!
Hola @Ben Howell
Yes I am talking Laurel Crosby/Stanford commercial metabolomic tests.
It would be great if we could figure out what´s going on with our metabolism while other treatments are being investigated.
Thank you !!!!!!
Warmest congrats JaimeS I hope it all works out really well for you! It must be SUCH an amazing team to work with. I always find Ron Davis talks so inspiring, just how science should be done and such humanity.
ME research seems to exemplify the very worst and the very best of science. And the very best will win out!
And thanks Ben for posting.
Just donated.
it's SO TEMPTING to keep going past my limits
This sounds interesting, looking forward to hearing more @Ben HowellWill be starting a thread when its all live. The exciting thing is that Laurel has found a way for samples to be collected in any country, due to a brilliant (LN2) transportation method. So everyone anywhere is fair game
Will be starting a thread when its all live. The exciting thing is that Laurel has found a way for samples to be collected in any country, due to a brilliant (LN2) transportation method. So everyone anywhere is fair game
I just donated! Hoping to find a cure for my 25 year old bed bound son and all the other sufferers out there! Thank you Ron Davis and the entire team for all your efforts! Keep it up and your doing a great job!Hi guys,
Original Newsletter (First post) has been updated! Some exciting new information about the genetics component from Prof Davis. @Rose49
Well worth a re-read!
Working and updated video link too.
And as always, if you can donate, please do so here:
http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/
Thanks so much!
Enjoy!
B
Ron has a few patients he's looked at and it looks like that's what's going on, so it's worth exploring.So are they already sure about some genetic factors or do they want just to investigate it?
So are they already sure about some genetic factors or do they want just to investigate it?
This is really interesting as a necessary, but not sufficient, factor for getting ME then had been found. Hopefully it should be possible to compensate an enzyme defect with a (synthetic) substance that cures us, or makes us much better. What if, it would be as simple to compensate as with folate when you´re having a MTHFR enzyme defect...Wishful thinking.Ron has a few patients he's looked at and it looks like that's what's going on, so it's worth exploring.
If the mutations are happening in the mitochondrial DNA (mtDNA), which seems to be the indication thus far, it is more complicated. Instead of just having less of a vitamin we can get from the environment and naturally absorb, we have less of a specific enzyme needed to produce energy in the mitochondria. Parts of an enzyme which should be transferring electrons around might not be doing their job ... and instead of inducing a straight-forward deficiency, it's badly disrupting the effected cells.Hopefully it should be possible to compensate an enzyme defect with a (synthetic) substance that cures us, or makes us much better.