Community Symposium on the Molecular Basis of ME/CFS Sept 5 (Stanford/Ron Davis)

[Trish]

Unbelievable giving Joshua Leisk top billing on the speaker list. What were they thinking? Last we heard he was a gym instructor peddling a made up protocol that kept changing when the people he was experimenting on found it didn't work, and selling supplements.

 

[Braganca]

Shocking. I have seen Janet give him credibility on Twitter and hoped OMF had some distance between her Twitter views and their work. Obv not.

 

[Sasha]

I'm not familiar with that guy or his work but if it's unscientific and poorly done then does OMF have Twitter or FB or similar where people can post questions/feedback? It would be very helpful in general to provide constructive and polite feedback about the science at the conference.

 

[Trish]

We have a thread on Joshua Leisk's unpublished preprint of his ideas from a few years ago.
https://www.s4me.info/threads/the-true-nature-of-an-autoimmune-disease-leisk-and-nocon-2021.19583/
He joined in the discussion for a while and was clearly touting for people to test his protocol. We have a rule about not promoting protocols. (Rule 5b)

 

[Jaybee00]

Shocking. I have seen Janet give him credibility on Twitter and hoped OMF had some distance between her Twitter views and their work. Obv not.

Yes, but this conference is not an OMF event—it is an event of the Stanford MECFS collaborative Research Center.

 

[mariovitali]

Obviously Ron Davis believes he is doing something which is worthy. The same for Renegade Research I suppose.

 

[Jaybee00]

R

Obviously Ron Davis believes he is doing something which is worthy. The same for Renegade Research I suppose.

I definitely don’t discount the ability of “citizen scientists” to come up with good ideas or analyses, but not necessarily these individuals.

 

[Mij]

It's not shocking to me anymore.

"From Janet Dafoe on twitter: Whitney is working with Josh Leisk and seeing benefits from following the protocol". Born Free protocol.

 

[OrganicChilli]

It's not shocking to me anymore.

"From Janet Dafoe on twitter: Whitney is working with Josh Leisk and seeing benefits from following the protocol". Born Free protocol.

Oh no. And he has such a parasocial patient following. Well, maybe people will wake up.

 

[Mij]

Oh no. And he has such a parasocial patient following. Well, maybe people will wake up.

We have a thread here

 

[Jaybee00]

Bumping this thread—the community symposium starts in 10 minutes.

 

[BrokenBeaktheBrave]

We have a thread here

I don't think the thread as been linked properly Mij.

I'd be interested in reading more about JL if you still have the link handy.

 

[Sasha]

Already live. Just chatting among themselves.

 

[Yann04]

I don't think the thread as been linked properly Mij.

I'd be interested in reading more about JL if you still have the link handy.

Thread 'The Born Free Protocol'

Jul 8, 2024

There seems to be substantial, growing interest in this alt-med protocol among pwME if my Twitter is anything to go by—and not just among the people most into alt-med. So it seems worth being informed of.

The Born Free protocol is the creation of Joshua Leisk. Here’s how he introduced himself on s4me a couple years ago:

I'm more of an anomaly. I'm a fully recovered CFS/ME sufferer with a strong background in IT and and interest in bioinformatics. I "retired" at 38 and got bored. I like puzzles, pathways and systems. This was a puzzle that had bothered me for a few decades, so I thought...

• jonathan_h
• Replies: 37
• Forum: Other treatments

• 

 

[Sasha]

415 people already on the webinar, apparently, with a lot more signed up... Starting now, being recorded...

 

[BrokenBeaktheBrave]

Thread 'The Born Free Protocol'

Jul 8, 2024

There seems to be substantial, growing interest in this alt-med protocol among pwME if my Twitter is anything to go by—and not just among the people most into alt-med. So it seems worth being informed of.

The Born Free protocol is the creation of Joshua Leisk. Here’s how he introduced himself on s4me a couple years ago:

I'm more of an anomaly. I'm a fully recovered CFS/ME sufferer with a strong background in IT and and interest in bioinformatics. I "retired" at 38 and got bored. I like puzzles, pathways and systems. This was a puzzle that had bothered me for a few decades, so I thought...

• jonathan_h
• Replies: 37
• Forum: Other treatments

• 

Thank you Yann.

 

[ChronicallyOverIt]

Joined late, pretty unimpressed with this Robert Naviaux presentation, seems like a mish mash of mitochondrial buzz words. Also presenting on red blood cell deformation and mitochondrial dysfunction (he works with prusty) as fact.

 

[rapidboson]

purinergic signalling, eATP, P2 receptors (e.g. on neutrophils) have come up more than once - I haven't read much about these on S4ME. Any insights?

 

[ChronicallyOverIt]

@jnmaciuch in the Stanford PET scan presentation they are using a new tracer called GPR84. I remember from the Jared younger thread you were versed in tracers. Have you heard of this tracer before? Thoughts on it? Also this new TREM1 tracer seems interesting

 

[BrightCandle]

Jonathan will appreciate Robert Phair's question on whether ME/CFS is an inflammatory process and what actually differs between acute and chronic inflammation and how can we be precise with our language? They seemed to express that its not a precise word but they don't yet know how to express the gradient of responses being seen and what to call it. What I didn't get a good answer to was is the cell types and molecules different and I think he is right that really matters.