Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

[kelly8]

I only got to see glimpses of this. The stuff I saw was absolutely amazing! Is this ever going to go to u tube or dvd? I'd like to see the presentations we missed...

 

[Sushi]

Fairly certain he said bifidobacterium. Unless I misheard.

That is what I heard too.

 

[Kati]

I only got to see glimpses of this. The stuff I saw was absolutely amazing! Is this ever going to go to u tube or dvd? I'd like to see the presentations we missed...

It is already on You Tube!!!

 

[Gingergrrl]

On our way home in a hurry to hook up Whitney's IV and Ron gets stopped for "rolling" through a stop sign! Lol. From the sublime to the ridiculous!

Wow, I am hoping that he was just stopped and did not get a ticket! If so, it makes me think of the quote, "No good deed goes unpunished" and your description "from the sublime to the ridiculous" is perfect.

Your doctors must have the open mind gene unlike our doctors.
Maybe its something in LA water (or serum)

Just to present the other side, there are many doctors in L.A. who are closed minded and mean-spirited b/c I have seen them during my 4+ year quest to figure out what was wrong with my health. But we also have some amazing doctors, too.

I can't remember but did Ron do the obvious with the plasma + patients cells and add Rituxan ?

That is such an interesting question @Jill!

It wouldn't work that way. Rituximab knocks out the B cells that make the cells that make the autoantibodies (or something like that) - and the whole process takes months before the autoantibodies are gone. So, if you applied Rituximab to a B cell, presumably it would kill it. And maybe it wouldn't affect other cells at all. ETA: sorry just read your last post @Jill. I see what you're saying, applying Rituximab could help rule out the possibility that it's having an effect besides killing B cells.

My guess is also that it would kill the B cells and leave the other cells intact but this could show if there is also some other mechanism going on. Did Dr. Davis or any of the speakers mention testing Ritux in this capacity?

 

[Ritto]

The Symposium is still up. It has an option to view again. I've just this minute watched Ron at6.40 and am about to watch Mark Davis at 5.20

 

[lilpink]

No I don't think so. @AshleyHalcyoneH could answer this definatively. But im pretty sure it won't.

I'm correct in understanding that the presentations will be available on You Tube in due course?

Ooops I have now read the whole thread and see that they are. Excellent!

 

[lilpink]

@Janet Dafoe (Rose49) @rose49

Could you share this study with Ron regarding pregnancy helping ME patients? There is a researcher using that hormone with MS patients

http://www.npr.org/sections/health-...ormone-may-reduce-multiple-sclerosis-symptoms

Very interesting. After 20 weeks of severe hyperemesis for both of my pregnancies I (almost overnight) went into the two best remissions of my disease for the latter 20 weeks of each. The benefit was not lost immediately on parturition.. tbh the trajectory of the improvement and subsequent decline wasn't unlike that being observed in the Rituxan studies (imo). I have used HRT empirically to try to mimic this response, but of course that uses oestradiol not oestriol. So I would be very curious about anyone who followed through on this. I noticed from the Invest in ME DVD of the last Conference that Warren Tate mentioned the pregnancy issue apropos his own daughter... few have made these observations but I feel they are important and could lead to real understandings of the disease process.

There are caveats however. Women with an intact uterus will need progestogen to balance the oestriol .... I can't imagine oestriol given ad infinitum is protective?? ..though I appreciate gestation is 9 months, so perhaps a 28 day cyclical progestogen is unnecessary? Would the same benefits be accrued in post menopausal women? I noticed that my 'cycling' presentation of ME changed to a consistently downward path after my pregnancies... the MO had changed, and not for the better, and this has continued for the last 30 years.

 

[Ritto]

utube now

 

[AndyPR]

utube now

Melbourne Bioanalytics (their Facebook post on it is here - https://www.facebook.com/MelbourneBioanalytics/posts/336169156807823) have figured out the running order timings for the video, times indicated are hours:minutes.

Introduction & Welcome: Linda Tannenbaum and Ashley Haugen (00:10)
Opening Remarks: Ron Davis: (00:14)

Morning speakers:
Robert Naviaux: The metabolism of the cell danger response, healing, and ME/CFS (00:18)
Chris Armstrong: ME, metabolism and I (00:38)
Jonas Bergquist: In search of biomarkers revealing pathophysiology in a Swedish ME/CFS patient cohort (00:53)

Maureen Hanson: Probing metabolism in ME/CFS (01:46)
Neil McGregor: Genome-wide analysis & metabolome changes in ME/CFS (02:05)
Alan Light: Gene variants, mitochondria & autoimmunity in ME/CFS (02:21)
Panel discussion: Morning speakers (02:42)

Afternoon speakers:
Baldomero Olivera: A novel source of drugs: the biodiversity of oceans (04:37)
Mario Capecchi: The role of microglia in neuropsychiatric disorders (04:57)
Mark Davis: Is CFS/ME an autoimmune disease? (05:14)

Alain Moreau: New research strategies for decoding ME/CFS to improve diagnosis and treatment (06:06)
Wenzhong Xiao: Big data analysis of patient studies of ME/CFS (06:25)
Ron Davis: Establishing new mechanistic and diagnostic paradigms for ME/CFS (06:44)
Panel discussion: afternoon speakers (07:21)

Closing remarks: (08:03)

 

[AndyPR]

As a renowned Stanford scientist, Ron Davis has a deep appreciation for the power of modern medicine.

And yet an explanation for the disease afflicting his own beloved son eludes him.
Son Whitney, 33, suffers from such severe Chronic Fatigue Syndrome that he is bedridden, unable to eat or speak. The handsome man was once a photographer and adventurer. He traveled through the United States, studied Buddhism in India and Nepal, lived in an Ecuadorian rainforest and ran a campaign office for former president Barack Obama. Now he’s returned home to Palo Alto for 24-hour care.

So his father has set out to find the reason behind his mysterious condition — believed to affect 2 million Americans — convinced that science has an answer, and that knowledge will lead to a cure. He is also giving new hope to others.

“To have people like Dr. Davis who are studying it and looking for answers — it is huge,” said Lorene Irizary of Sonoma, sick for 22 years, a former Sonoma County official who now a patient at Stanford. She arrived in a wheelchair. “I’ve tried so hard to find answers. To be here with the researchers and the doctors and see it all together – It is really amazing.”

Whitney Dafoe, the son of Ron Davis, PhD, director of Stanford’s Chronic Fatigue Syndrome Research Center. Before he sickened a decade ago, Dafoe, now 33, was a photographer and an adventurer. He traveled to all 50 states, studied Buddhism in India and Nepal, lived in an Ecuadorian rainforest and ran a campaign office for former President Barack Obama. (Photo courtesy of Ashley Haugen)

On Saturday, at a Stanford symposium organized by Davis, patients and top scientists gathered to share their insights into the condition, also called myalgic encephalomyelitis or ME/CFS. About 300 people attended the conference and another 1,000 watched it online.

http://www.mercurynews.com/2017/08/...for-answer-to-his-sons-devastating-condition/

 

[Manganus]

Youtube now

This link is directly to youtube

https://youtu.be/s7bBMXQSmuM

(An advantage for me is that it doesn't strain my internet connection as much as the original transmission.)

 

[anni66]

Very interesting. After 20 weeks of severe hyperemesis for both of my pregnancies I (almost overnight) went into the two best remissions of my disease for the latter 20 weeks of each. The benefit was not lost immediately on parturition.. tbh the trajectory of the improvement and subsequent decline wasn't unlike that being observed in the Rituxan studies (imo). I have used HRT empirically to try to mimic this response, but of course that uses oestradiol not oestriol. So I would be very curious about anyone who followed through on this. I noticed from the Invest in ME DVD of the last Conference that Warren Tate mentioned the pregnancy issue apropos his own daughter... few have made these observations but I feel they are important and could lead to real understandings of the disease process.

There are caveats however. Women with an intact uterus will need progestogen to balance the oestriol .... I can't imagine oestriol given ad infinitum is protective?? ..though I appreciate gestation is 9 months, so perhaps a 28 day cyclical progestogen is unnecessary? Would the same benefits be accrued in post menopausal women? I noticed that my 'cycling' presentation of ME changed to a consistently downward path after my pregnancies... the MO had changed, and not for the better, and this has continued for the last 30 years.

If you look at common ages of onset - puberty and pregnancy - hormones must play a significant part

 

[Manganus]

There are caveats however. Women with an intact uterus will need progestogen to balance the oestriol .... I can't imagine oestriol given ad infinitum is protective??

If the ME/CFS-condition is a result of positive feedback, then hopefully it would be sufficient to break the feedback loop once the signal that initiated the loop is gone.

(I don't know which signals. ATP is a good example, though.)

 

[TreePerson]

If you look at common ages of onset - puberty and pregnancy - hormones must play a significant part

I am now deteriorating post menopause. My mother had an autoimmune disease that pretty well disappeared during pregnancy which makes me think this may be an autoimmune pattern and not exclusive to ME.

 

[Tilney]

http://forums.phoenixrising.me/inde...ole-of-female-hormone-status-in-me-cfs.46839/

 

[Stukindawski]

Clickable links to each part of the stream:-
(Click the timestamps to go directly to that point in the video)

Introduction & Welcome: Linda Tannenbaum and Ashley Haugen (00:10)
Opening Remarks: Ron Davis: (00:14)

Morning speakers:
Robert Naviaux: The metabolism of the cell danger response, healing, and ME/CFS (00:18)
Chris Armstrong: ME, metabolism and I (00:38)
Jonas Bergquist: In search of biomarkers revealing pathophysiology in a Swedish ME/CFS patient cohort (00:53)

Maureen Hanson: Probing metabolism in ME/CFS (01:46)
Neil McGregor: Genome-wide analysis & metabolome changes in ME/CFS (02:05)
Alan Light: Gene variants, mitochondria & autoimmunity in ME/CFS (02:21)
Panel discussion: Morning speakers (02:42)

Afternoon speakers:
Baldomero Olivera: A novel source of drugs: the biodiversity of oceans (04:37)
Mario Capecchi: The role of microglia in neuropsychiatric disorders (04:57)
Mark Davis: Is CFS/ME an autoimmune disease? (05:14)

Alain Moreau: New research strategies for decoding ME/CFS to improve diagnosis and treatment (06:06)
Wenzhong Xiao: Big data analysis of patient studies of ME/CFS (06:25)
Ron Davis: Establishing new mechanistic and diagnostic paradigms for ME/CFS (06:44)
Panel discussion: afternoon speakers (07:21)

Closing remarks: (08:03)

 

[lilpink]

If you look at common ages of onset - puberty and pregnancy - hormones must play a significant part

Yes I agree. My ME started when I was 9 / 10 just as pubescent hormones start to 'do their thing'. The change in gender ratio between prepubescents and post pubescents also confirms that this must be so.

 

[lilpink]

If the ME/CFS-condition is a result of positive feedback, then hopefully it would be sufficient to break the feedback loop once the signal that initiated the loop is gone.

I really have no idea. My forays into (oestradiol) HRT didn't work... fwiw.

 

[lilpink]

I am now deteriorating post menopause. My mother had an autoimmune disease that pretty well disappeared during pregnancy which makes me think this may be an autoimmune pattern and not exclusive to ME

I think that would make sense.

My ME has become very much worse with menopause.

 

[msf]

Just listening to McGregor talk about the genetic study. I think this is the big one in terms of SNPs, unless someone has a statistical objection...