3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019

I found it fascinating, but I am a tech junkie especially when it has application. I would like to see this in us severes and v. severes whose symptoms do not fluctuate much, if at all.


B

 

Since I can't stream this my best source is the tweet 'transcript,' this is back to square one, which keeps getting reset, and those who speak up get sent into the corner, we'll have to see what happens to Hanson.


Hillary Johnson‏ @oslersweb 3h3 hours ago


"It's still conceivable there are small outbreaks--maybe everyone eats at the same restaurant one day, gets sick, but everyone who gets sick goes to a different doctor...but (given its widespread nature) I think a lot of people now have immunity to this virus." Maureen Hanson

2 replies 3 retweets 14 likes

Hillary Johnson‏ @oslersweb 3h3 hours ago


"This is not a genetic disease. It requires an exposure. To this day, we don't know why people are susceptible to polio...it could be bad luck--you get one or two other viruses, you're immune system got messed up, and you get ME." Maureen Hanson

2 replies 12 retweets 35 likes
Hillary Johnson‏ @oslersweb 3h3 hours ago


"I loved Mareen's courageous talk. I loved that she called a spade a spade..." Ron Davis

0 replies 4 retweets 18 likes

Hillary Johnson Retweeted
Hillary Johnson‏ @oslersweb 3h3 hours ago


"I suspect there is a central cause of the disease, I agree with Maureen....ultimately we want to figure out what that organism is and get rid of it. Many people are trying to sort that out." Ron Davis

0 replies 5 retweets 22 likes
Hillary Johnson‏ @oslersweb 3h3 hours ago


Q to Hanson: Foolish virus vs genius virus? Can you speak to role of EBV as genius virus? "most people are having reactivation of EBV, immune system can no longer control it. What if another virus comes along when you have mono? That could result in ME."

1 reply 5 retweets 11 likes

Hillary Johnson Retweeted
Anna Giuseppa‏ @AnneSpaceCoast 3h3 hours ago


Replying to @oslersweb
She will need 24 hour security now! She is the 3rd women scientist saying similar. Elaine D and Judy M said "viral" cause and look what happened to them!

2 replies 6 retweets 18 likes
Hillary Johnson‏ @oslersweb 3h3 hours ago


"I suspect there is a central cause of the disease, I agree with Maureen....ultimately we want to figure out what that organism is and get rid of it. Many people are trying to sort that out." Ron Davis

0 replies 5 retweets 22 likes
Hillary Johnson‏ @oslersweb 3h3 hours ago


Maureen Hanson on subsets, a paraphrase: I'm a lumper, not a splitter. When you're hit by a car, you may have multiple injuries, but you were still hit by the same car. There is a fundamental disruption (a virus)

2 replies 6 retweets 14 likes
Hillary Johnson‏ @oslersweb 3h3 hours ago


The desire by scientists to "stratify" patients and break them into subsets is, IMO, a way to enable them to personally understand the disease better but which does little to get to the heart of the infection. amateur hour, in other words

0 replies 2 retweets 4 likes
Hillary Johnson‏ @oslersweb 4h4 hours ago


Polite women don't make history. Thank god Maureen Hanson had the courage to tell the truth about ME. The field must change immediately, If your research isn't about finding the infection, it's just peripheral and more of the same. Find the genius virus

0 replies 4 retweets 21 likes
Hillary Johnson‏ @oslersweb 5h5 hours ago


Read between the lines of Maureen Hanson's keynote speech: tragedy began in the 1980s when formerly obscure disease exploded. Male MDs + scientists, dismiss as hysteria. No $ for research for decades. Disease spreads until it's endemic and here to stay. NIH still doesn't get it

0 replies 12 retweets 25 likes
Hillary Johnson‏ @oslersweb 5h5 hours ago


correction: 1980s!

1 reply 1 retweet 9 likes

Show this thread
Hillary Johnson‏ @oslersweb 5h5 hours ago


Mark the day when the truth was finally told by the top scientist in this field: September 7, 2019. Maureen Hanson provides the history and evidence that ME is an infectious disease, caused by a virus, that was allowed to become endemic since the "surge" of disease in 1990s

2 replies 13 retweets 23 likes

Show this thread
Hillary Johnson‏ @oslersweb 5h5 hours ago


"We know we're dealing with a genius virus" Maureen Hanson. Finally--a scientist with the guts to state a long obvious fact that ME is caused by a virus, a "genius" virus compared to HIV, Zika, polio; a virus clever enough to hide its damage to victims, masking reality of ME.

4 replies 17 retweets 50 likes
Hillary Johnson‏ @oslersweb 5h5 hours ago


Maureen Hanson: we need to tell the public that they need to worry about ME

1 reply 11 retweets 35 likes
Hillary Johnson‏ @oslersweb 5h5 hours ago


Unfortunately, genius viruses like the one causing ME/CFS are very clever viruses. we have $15 million in 2019...We need more research. We need money. We hear NIH say they'll fund more if more applications are received. But, you need specifically designated $; set aside funds

1 reply 9 retweets 21 likes
Hillary Johnson‏ @oslersweb 5h5 hours ago


Maureen Hanson: disease is now endemic. People get sick and don't seem to be part of an outbreak. What happens when emerging disease becomes endemic? Disease must compete with other endemic disease.

0 replies 5 retweets 14 likes
Hillary Johnson‏ @oslersweb 5h5 hours ago


Maureen Hanson: the different outbreaks are clearly identifiable as what we today call ME/CFS. Ramsay's description in 1950s resonates with our current five symptoms, PEM, brain fog, and relapsing remitting symptoms. They are the same disease, but with some variations in virus

3 replies 10 retweets 26 likes
Hillary Johnson‏ @oslersweb 5h5 hours ago


Maureen Hanson Keynote. Will give you my thoughts about ME, not just data. Some speculation.: Cause of abnormal functioning of immune system. 70 percent started with viral-like infection. upsurge of outbreaks in 1950s, another outbreaks in 1980s.

0 replies 4 retweets 10 likes

 

Anyone know how much longer this thing goes on for?

 

@Hutan
“Mike Snyder was saying the same things. His team have found that an increased resting heart rate can be an early warning of episodes of acute illness. He's interested in how that might work in chronic illness too. He's doing a study (not specific to ME/CFS) with people wearing wearable devices.

Certainly I have an increased resting heart rate when I'm worst, ME/CFS-wise.”

Absolutely. I watch my HR like a hawk. I have an increased resting heart rate when I have overdone things, and am crashing or about to crash. It helps me to know that I must rest hard, lying flat.

I also fit Maureen Hanson’s virus theory. 80s onset. Three of us teaching the same subject in a college became ill at the same time. My onset was 3 hours after a colleague’s. She became ill and had to go home. I felt very ill 3 hours later. The third staff member was hospitalised.

 

They are 8 hours behind us, started 9am, 5 pm our time.

I think it is due to run till 5pm, 1am our time.

 

Robert Phair:

https://twitter.com/user/status/1170461993330970625



B

 

Ron:

https://twitter.com/user/status/1170469379731087360


(All threads).


B

 

I was getting a bit down. No treatments etc. This bit lifted me back up!

"Davis - Treatments being assessed by nanoneedle

MS drug Copaxone - turns electrical impedance normal in nanoneedle

Davis lab actually making the drug to use in experiments.

SS31 repairs mitochondria, binds to mitochondria, in clinical trials, makes signal in nanoneedle look normal as well.

https://urology.weillcornell.org/dr...-targeted-therapy-crosses-blood-brain-barrier

Also try herbal extracts - if they find one - so easy to get and use. (Jarred Younger has finished his study on botanical extracts...)

Endopropionate - neuroprotectant missing in severely ill; made from bacteria in gut. In clinical trials for other diseases."

Just not sure what this Endopropionate is/does?

 

Should that be indopropionate?

 

I thought Ron Davis had been saying (previously) that it wasn't a virus. Has he changed his mind?

 

Could be. I just copied and pasted it!

 

Or indolepropionate?

 

Happy to see someone connecting the dots between PEM and sleep.

Regarding medications/trials - I’m impatient.
- Copaxone seems far away. A drug like that needs many years/trials before becoming avalable.
- What about SS31? Is that more like a amino acid/supplement that could be on the market sooner?
- has Younger mentioned what herbs he has been studying?

 

@NelliePledge

https://twitter.com/user/status/1170397453532770304

 

A couple of times, Ron Davis mentioned that they were hindered because they didn't have access to a "high-end" mass spectrometer. I wonder how expensive such a device is. From what little I've seen, the "high-end" that shows up on the internet seems to be between $100K-$200K. Of course, the real high-end might be much more. Knowing the real cost would at least give some idea if a fund-raising effort was feasible.

 

@Grigor adding to your list: Moreau also mentioned thymoquinone that can be found in Nigella Sativa/black seed oil (when he talked about brain fog).

 

@Rain copaxone has been available worldwide for over 10 years now. Also available as a generic.

 

~$1.5MM list price without discount