Renegade Research

[wingate]

They raised a very sizeable sum from patients and got funding from Balvi.

Now they just keep on attracting funding and money from patients and organisations (such as Solve M.E.) without anything to show for it?

It makes me wonder what an org like Balvi or Solve or anyone else uses to evaluate the success of projects they fund.

One would hope they would monitor projects like remission biome to see if it worked out (or even was completed) because they don’t want to just throw their money away.

But based on @Hutan’s conversations with Solve in that thread, I would say the definition of success is quite subjective.

 

[hotblack]

Agree with you, it stinks, but I think the exuding of confidence goes a long way to persuading people even if it’s not backed up with results.

Oh definitely. And if those who continue these sort of practices don’t know they’re fooling other people they’re fooling themselves too.

 

[Trish]

Is renegade research any sort of registered company that has to publish accounts?

 

[voner]

Trish,

they are a 501 C3 nonprofit corporation in the USA since 8/2024. They have to file some financial info and a tiny bit of description of the expenditures, but it is not much. Since Solve ME/CFS initiative is their funder, I think they would be setting the factors for determining if they’re gonna keep on funding this organization or not.

Here is some info from ProPublica: https://projects.propublica.org/nonprofits/organizations/372120626

 

[jonathan_h]

Recently, a website was launched for the Collaborative Sciences Institute. Their mission:

Systems biology education for clinicians treating complex chronic disease. A rigorous learning community for functional medicine doctors and chronic disease specialists ready to reason across networks, mechanisms, and lived cases.

There are three founders:

Isabel Ramirez-Burnett
CEO and founding member of Renegade Research

Dr. John Haughton, MD
Chief Medical Officer of Renegade Research

Joshua Leisk
Creator of the Born Free Protocol

 

[Trish]

I'm appalled to see Leisk, a fitness trainer who makes up complicated protocols and sells supplrments in such a context. Has any of his stuff been tested in a clinical trial, as i vaguely recall him saying he would get done several years ago.

 

[hotblack]

*long sigh*

 

[Silip]

I know I shouldn’t bother with this sort of rubbish; it just drains my energy and upsets me for no good reason. Nevertheless, I can’t help but share this post with you here.



It sums up pretty much everything that is so unprofessional about this organisation: the stoking of expectations that can directly influence trial participants, the daft and performative emotionalisation of ongoing trials, and, last but not least, the excessive overweighting of even the tiniest positive effects.

 

[NelliePledge]

Allegedly “therapeutic” devices

 

[hotblack]

I cried at my desk today.

I was reviewing applications for one of our @RenegadeRes projects, SIGNAL, which will lend the
rapeutic devices to people with ME/CFS and Long COVID.

I was working in a spreadsheet and it hit me that each row is a real person with the columns g
iving me hints of how much their lives have been affected. Many are in their 80s. Some are jus
t starting their adult lives and are bedbound. One got sick when they were 6 years old … in 19
55! So many are “very severe”, dependent on care. Triggered by infections, car accidents, envi
ronmental toxins, and more. All over the US.
I imagined my own story there: 42 years old • ME/CFS • multiple triggers • symptoms since 2006

I scrolled down… 100 rows… 200 rows… so many people… and there are tens of millions more out t
here.

Ugh. This work is heavy.

But then I felt a hint of hope. In a month I might be hearing from people in this spreadsheet
telling me that the device is helping them. I know that the devices won’t work for everyone
and won’t be a cure, but even if it just works for a few in this group, even just one, even j
ust a little, it matters.
View Original Post

I dislike dunking on people who like all of us have lost so much and who show care but no, no, no. This is not he way. This is not how you do science. This is not how you help people. Sadly so often it is the opposite.

I find it baffling that you can have years of training as an engineer and scientist and then take this approach. Helping people is a noble aim but the approach is not based in any science or engineering methodology, And I find the mixing of that with emotion and financial incentives really distasteful.

If part of your sales pitch is your education and training, your doctorate, your systems thinking and time at NASA then I think it’s fair to question this.

‘Well we built and stress tested this lander design and it worked once out of 100 times so it’s good to go to Mars’ is not something you would hear at JPL.