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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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OMF News February 2017

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
@JaimeS - Wow that's so amazing! I'm really happy for you, and for us.

I'm currently stuck in another country, after a horrible failed treatment attempt and reading this update has made me cry, but with tears of happiness that we have this amazing team working so hard for the community.

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.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
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 :tulip:.

Thank you all !!!!!

Hola @Aroa !

Are you talking Laurel Crosby/Stanford commercial metabolomic tests (for patients and the public per se), or the analysis of the severe ill patients big data study results?


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Aroa

Senior Member
Messages
109
Location
Spain
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 !!!!!!
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
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 !!!!!!

So, patient samples have been collected (for the initial run) and recruitment of controls are now underway and blood collection is going ahead for them, last I checked.

Its turned into a much bigger project than first anticipated, which is much better for many reasons, but means the commercial roll out is a little later.

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 :)


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Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
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.

Thanks so much for donating @Daisymay !

And I totally agree-its just how science should be done with Prof Davis. We are so lucky.


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Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
it's SO TEMPTING to keep going past my limits

It sounds very exciting, I'd be having trouble switching my brain off from that.

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 :)
This sounds interesting, looking forward to hearing more @Ben Howell
 

Tuha

Senior Member
Messages
638
So are they already sure about some genetic factors or do they want just to investigate it?
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
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 :)

This is the thing where we can send our own samples in? Is there any sense of a timeline on this yet? (I appreciate that they'll all be doing their best!)
 

Nickster

Senior Member
Messages
308
Location
Los Angeles, CA
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
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!
 

Helen

Senior Member
Messages
2,243
So are they already sure about some genetic factors or do they want just to investigate it?
Ron has a few patients he's looked at and it looks like that's what's going on, so it's worth exploring.
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.
 
Messages
15,786
Hopefully it should be possible to compensate an enzyme defect with a (synthetic) substance that cures us, or makes us much better.
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.

There's no clear cut treatments for mitochondrial diseases, and most research seems to involve case studies. Though with the high degree of variation in each case of mitochondrial disease, it would probably be hard to run a well-controlled trial. Certain forms of CoQ10 are the most popular recommendation, due to being closely related to a product of the disrupted mechanism. Also B12, vitamin E, NAC, L-carnitine, nicotinamide (form of B3), B2, L-arginine, and general antioxidants. Avoiding toxins (including alcohol) is also recommended by some sources.

More technical info:
https://en.wikipedia.org/wiki/Mitochondrial_disease
https://en.wikipedia.org/wiki/NADH_dehydrogenase_(ubiquinone)
https://en.wikipedia.org/wiki/Electron_transport_chain