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Webinar with Dr. Alan Light on Novel Gene Variants in ME/CFS and Fibromyalgia

R

RL_sparky

Senior Member
Messages
379
Location
California
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Novel Gene Variants in
ME/CFS and Fibromyalgia
with Alan R. Light, PhD
Wednesday, February 1
6pm Mountain/7pm Central
(note new, earlier time)


Watch LIVE at
http://www.youtube.com/c/OfferutahOrg/live
No registration required. Come as you are - tune in from anywhere!

Learn moreHERE
Unable to make it? View the recording later on
our YouTube channel or in the patient library.

If you are in the Salt Lake area, attend in person and join us for live Q&A after the presentation, as well as a chance to meet other locals whose lives are similarly impacted:
At the NEW BHC Education Center
24 South 1100 East, Suite 205, SLC, UT
 
Butydoc

Butydoc

Senior Member
Messages
790
Dr. Light is an impressive researcher as is his wife. My whole family is involved in this study and hope this gene expression study will yield useable results. I was informed that it will take approximately 3mo before my families results become available.

Dr Davis from Stanford meet with the Lights during the Sundance film festival and will be collaborating with their research. It appears both groups are getting closer to the cause of this disease. Dr Davis commented during a special showing of Jen Brea's documentary at the festival. He stated emphatically that he feels a breakthrough will happen before the end of this year.

Gary
 
PNWMom

PNWMom

Messages
17
I talked with Dr Light last spring at a Bateman Horne event. He mentioned he was applying for NIH then. Is this "Novel gene" study that project? Does anyone have more details? I'd like to know who is working with him on it. Wouldn't there be a public record of it somewhere?
 
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Kati

Kati

Patient in training
Messages
5,497
The recruitment for his next study will start this month, and will require patients to get blood drawn at the hospital in Salt Lake City and fill out questionnaires online. It is to validate his preliminary findings described in this presentation.
 
Rossy191276

Rossy191276

Senior Member
Messages
145
Location
Brisbane, Australia
One thing I am now confused about is that Dr Davis and others have said that their findings suggest that the problem is not in the Mitochondria rather the mitochondria are just the end result of other issues... Whereas to me this research suggests that the problem is in the Mitochondria...

Yet at the end of the presentation I thought Dr Light said that these findings align with the metabolic studies so far??
 
Kati

Kati

Patient in training
Messages
5,497
Rossy191276 said:
One thing I am now confused about is that Dr Davis and others have said that their findings suggest that the problem is not in the Mitochondria rather the mitochondria are just the end result of other issues... Whereas to me this research suggests that the problem is in the Mitochondria...

Yet at the end of the presentation I thought Dr Light said that these findings align with the metabolic studies so far??
Click to expand...
Hi @Rossy191276 i believe it is Dr Davis' team that suggested that the role of mitochondria was both to provide energy and to take a role of immune signaling and that if this was the case, it would suggest that mito were busy doing immune signaling and not so much providing energy for the cells.

Sorry I have no link for this but the Naviaux et al. Paper would be a good start.

I think that few teams are working on this issue through metabolomics and hopefully we will have more definitive answers this year.

Welcome to the forums by the way!
 
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Murph

Murph

:)
Messages
1,799
I found this absolutely fascinating. Thanks to Dr Light for the presentation and to @Kati for putting the slides up.

A few points

1. If in fact mitochondrial genetic mutations are the ultimate upstream source of our problems, then it is definitely good news that the Crispr gene editing technology is believed to work on mitochondrial DNA.

Source: https://www.hindawi.com/journals/bmri/2015/305716/

2. However this is a pilot study, not the sort of study on which you base treatment decisions. It's designed to guide future research, (And happily it seems Light has funding, and is proceeding with that future research. :) )

3. I was initially underwhelmed by the statement that there was (almost) no overlap in the genetic mutations in patients vs controls. As I understand it, mutations are random (especially when they are environmental, i.e. not inherited) and while mitochondrial DNA is limited compared to nucleic DNA there's still a lot of it and I'm not sure you'd expect much overlap. Once you dive into the detail it's a bit more suggestive, however. I'm interested in this but not utterly convinced.

3.1 That said the graph showing decreased mitochondrial proteins in FM patients is impressive.

4. Like @Rossy191276 I don't understand how this fits with the recent findings that the problem is in the serum and our cells are okay.

5. His is a complicated theory of the disease, requiring a particular combination of genetic problems followed by certain pathogens and an auto-immune response, and subsequent problems too. Fans of Occam's razor may be unimpressed. (I think sometimes you have to let Occam's beard grow long.)

6. I like his idea for a clinical trial of propranolol to test its effect on beta-receptor autoimmunity. I recently went off the drug for about ten days and then back on it and my sense is it really helps in my case, even though the heart rate effect is not massive.
 
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