Emerge Australia ME/CFS International Research Symposium March 12-15, 2019

[Cam Newton]

@Cam Newton I think I heard him say when he tested some patients other than the original ones from California who were positive for the IDO trap he found a second possible trap in those in an area somewhat related to IDO.

Hope conference organizers make the presentations available to re-watch, so much really good information.

I’ll watch it again. However from my understanding, they tested new people since September who did not have the kyn/trp ratio that would indicate a potential IDO trap. So either their new meausurements were off, the newly tested people didn’t have ME/CFS (or ME/CFS sub-group IDO trap), or the IDO trap doesn’t exist at all. They will be using a more accurate mass spec within 3 months to further investigate.

On the other trap, Dr Phair really only mentioned it when discussing that two patients, outside of Stanford, did not have any IDO gene defects. However they did have the gene defects that would allow this second trap to be a possibility - also that all other previous patients, from Stanford, also have the gene defect for the second trap.

Edit: I’m also curious what Dr Phair said regarding oxygen. I initially got sick after I started doing the stupid Wim Hoff method for about 1 month. This is essentially just hyperventilating that has been shown to increase blood oxygen levels - but not much else. Anyway, this is probably just a useless coincidence.

 

[Chelby]

Dr Bruce Wauchope from Bedford Medical Clinic, Adelaide stating on record that the PACE trial was fraudulent and calling for guidelines promoting 'malpractice' to be changed.

 

[Diwi9]

Dr Bruce Wauchope from Bedford Medical Clinic, Adelaide stating on record that the PACE trial was fraudulent and calling for guidelines promoting 'malpractice' to be changed.

He said it was fraudulent because they changed the outcome measures. Then followed up that their personal gain was involved in supporting their theory. Fearless

 

[perrier]

Due to heavy caregiving needs, I have been unable to watch the conference. Is there anyone out there who would be able to make a point form list of what was newly discovered, or repudiated, or if any treatment proposals were put on the table. I recognise this is a large request from an ill population. But there are a few people here who are articulate and who have followed events. Thank you in advance. And if there are no takers, that is ok too. We are all living from conference to conference; and I find this very hard; the sick just want to hear not what new thing is wrong with them, but what can be offered to relieve them. But science moves at a snail's pace....

 

[wastwater]

I found the mention of uranium interesting as I had been wondering about radon
High levels around Lake Tahoe etc
SS-31 worth looking at

Can the bacteria that produces 3-Indolepropionic acid (IPA) be reintroduce into the gut
Also it effects kidneys,how so like hematuria

 

[Belbyr]

Was anyone able to listen to the NOVA Dr. speech? I was curious to know if they mentioned the drugs that looked promising in at least treating CFS, although still not a cure...

 

[Sing]

@Belbyr I did not hear those drugs mentioned.
@perrier I think it was Dr. Alain Moreau who’s been researching micro-RNAs and that one thing he has shown in one experiment is that a patient’s profile of these could distinguish whether or not this person would be a responder or non-responder to Rituximab. These initial findings came up with the same proportion as the Norwegians found—⅓ are responders. My memory tells me that he also said he is in touch with Dr. Fluge about his findings. There are other helpful uses that are indicating too.

Though most of the talks I either was not able to hear or did not understand well, the researchers who are studying the differences in our brains/brain functions held the most interest for me.

 

[Diwi9]

Due to heavy caregiving needs, I have been unable to watch the conference. Is there anyone out there who would be able to make a point form list of what was newly discovered, or repudiated, or if any treatment proposals were put on the table. I recognise this is a large request from an ill population. But there are a few people here who are articulate and who have followed events. Thank you in advance. And if there are no takers, that is ok too. We are all living from conference to conference; and I find this very hard; the sick just want to hear not what new thing is wrong with them, but what can be offered to relieve them. But science moves at a snail's pace....

The research was summarized by some talks at the end. The summary talks should be available at some point at: https://vimeo.com/emergeaustralia

 

[Diwi9]

I found the mention of uranium interesting as I had been wondering about radon
SS-31 worth looking at

Can the bacteria that produces 3-Indolepropionic acid (IPA) be reintroduce into the gut
Also it effects kidneys,how so like hematuria

I was tested by the Stanford lab and my uranium was high...like really high. What to do, does it matter? Who knows...

 

[Diwi9]

Was anyone able to listen to the NOVA Dr. speech? I was curious to know if they mentioned the drugs that looked promising in at least treating CFS, although still not a cure...

He specifically did not mention that.

 

[ScottTriGuy]

Due to heavy caregiving needs, I have been unable to watch the conference. Is there anyone out there who would be able to make a point form list of what was newly discovered, or repudiated, or if any treatment proposals were put on the table. ....

Dr Davis said 1/3 to 1/4 of patients had high mercury / low selenium, and if low supplement, but monitor as high selenium is no good either.

I copied these notes from someone else (who I've already forgotten):


Dr. Davis talked about 3 drugs that move the "needle" and one metabolite very low in some severe patients.

1. Indoleproplonate is made in the gut. It seems severe patients may be low in the bacteria that produces this. Indoleproplonate is a neuro protective agent.

2. He has previously talked about Ativan correcting the nanoneedle signature (IIMEC13 June 2018). Since then they have seen the same reaction on the Seahorse ($120,000 instrument). They test with activated T-Cells which happen to express GABA receptors (possible mechanism of activation).

3. Lastly he announced two other drugs that correct the nanoneedle impedance signature when used with a patients blood. Copaxone and a new drug called SS31.

He summarised to say that they don't know why these drugs have the effect they do.

Of note is that Copaxone is an MS drug. Ron Davis has talked with MS experts and they agree that their MS patients match the diagnostic criteria for ME/CFS but insist their patients do not also have ME/CFS in addition to MS

 

[Yuno]

Dr Davis said 1/3 to 1/4 of patients had high mercury / low selenium, and if low supplement, but monitor as high selenium is no good either.

I copied these notes from someone else (who I've already forgotten):


Dr. Davis talked about 3 drugs that move the "needle" and one metabolite very low in some severe patients.

1. Indoleproplonate is made in the gut. It seems severe patients may be low in the bacteria that produces this. Indoleproplonate is a neuro protective agent.

2. He has previously talked about Ativan correcting the nanoneedle signature (IIMEC13 June 2018). Since then they have seen the same reaction on the Seahorse ($120,000 instrument). They test with activated T-Cells which happen to express GABA receptors (possible mechanism of activation).

3. Lastly he announced two other drugs that correct the nanoneedle impedance signature when used with a patients blood. Copaxone and a new drug called SS31.

He summarised to say that they don't know why these drugs have the effect they do.

Of note is that Copaxone is an MS drug. Ron Davis has talked with MS experts and they agree that their MS patients match the diagnostic criteria for ME/CFS but insist their patients do not also have ME/CFS in addition to MS

Does anyone know whether the nanoneedle impedance signature was tested against blood from other illnesses like MS?

 

[raghav]

Indolepropionate is made in the gut by clostridium sporogenes. But google says it causes infections. It is usually found in soil. so can we buy indolepropionate as such in powder or capsule form and try it ? Wiki states this is available in the trade name oxigon.

SS-31 is Bendavia or elamipretide

 

[Gemini]

I have been unable to watch the conference. Is there anyone out there who would be able to make a point form list of what was newly discovered, or repudiated, or if any treatment proposals were put on the table.

@perrier I just noticed that Day 3 of the conference's livestream can be "re-watched" on the Emerge website.

https://goliveaustralia.com.au/emerge2019/

Scroll to:

14:00 for the start of the presentations which include two interesting talks by physicians;

2:40:09 for summaries of all of Day 1 and Day 2's presentations;

4:07:56 for Dr. Ron Davis' talk followed by a 10-minute video of Jarred Younger summarizing his studies.

 

[Diwi9]

@perrier I just noticed that Day 3 of the conference's livestream can be "re-watched" on the Emerge website.

https://goliveaustralia.com.au/emerge2019/

Scroll to:

14:00 for the start of the presentations which include two interesting talks by physicians;

2:40:09 for summaries of all of Day 1 and Day 2's presentations;

4:07:56 for Dr. Ron Davis' talk followed by a 10-minute video of Jarred Younger summarizing his studies.

@Learner1...apparently videos are available now!

 

[Learner1]

Edited: Thanks, the link above works.

 

[Sing]

I clicked on the arrows, then when I got a screen saying it would start soon. Because it is a recording, I pulled up the time going at the bottom of the screen, at first hidden, and moved the time along until I saw what I was looking for. This all worked but takes extra steps!

 

[Jessie 107]

I am too ill to watch.
Can anyone that did, tell me what Ron Davies said about Heavy Metals?
Thankyou

 

[Sing]

He has been testing a lot of hair samples from around the world. He finds that different parts of the world show different deficiencies and excesses. Selenium is lower in the U.S., generally speaking, and also Copper, but someone correct me if I missed something.

One woman from Finland sent hair that was 2 or 4 feet long! (He had only wanted a snip from hair close to the scalp to look for recent exposure.) But since he had it, he tested it in segments to find out what her exposure was over time. What he found was that it was high in Uranium and Mercury throughout. He said he assumes the mercury is from her high fish consumption. Australia has some characteristic deficiency beginning with c, ch? —which I have now forgotten—which is due to their soils.

It is worthwhile to have one’s hair tested to find out, as excesses and deficiencies where they exist might be corrected.

 

[ljimbo423]

Australia has some characteristic deficiency beginning with c, ch? —which I have now forgotten—which is due to their soils.

Was it chromium by any chance?