Renegade Research

Brian Vastag (@brianvastag@mas.to)

Kaufman: Most of my patients using it are long covid patients. Their responsiveness may be significant...it's a shorter course of illness than long-term ME/CFS patients with a very definite infectious cause of their illness.
mas.to mas.to

"Kaufman: Most of my patients using it are long covid patients. Their responsiveness may be significant...it's a shorter course of illness than long-term ME/CFS patients with a very definite infectious cause of their illness."
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i.e. a group of patients who might be more likely to recover/improve anyway?
 
Quotes according to the poster:
Kaufman: Most physicians working in hospitals or corporate healthcare aren't allowed to push boundaries like this. I don't know how to get past this roadblock.
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You mean the roadblock of «first do no harm» and scientific rigour?
Kaufman: Off-label use is off-limits in a lot of places.
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Kaufman: Now by the second patient visit, I'm considering starting these drugs. At very low doses I'm not seeing significant side effects. Why make the patient wait? If I have a drug that may be a game-changer for them
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And this is why I say that people like Kaufman profit off of desperate patients. They know that they can pay to see him to get to try the drugs they want. He doesn’t bother with the evidence.
Kaufman: There is a murkiness to trial-and-error medicine, which is what I do all day...everything I use is off label. My practice is I will inch doses up until I see benefit or I see side effects & no benefit. It's individual.
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Dempsey: These drugs have some research that it is anti-inflammatory; being investigated for neuroinflammation. We're making it sound miraculous but it's not. It might not work at all - I certainly have those pateints who don't notice anything. I also have patients who do poorly pretty quickly. Everyone needs to go down this path cautiously with a provider who understands the nuances of this drug.
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I get frustrated by the undesired work his and other clinicians’ unfounded claims create for me. My well meaning family members see claims like these and get hopeful thinking that there’s something helpful I can try, and I have to find a way to explain why it’s probably not gonna work out.
 
On a patient with traumatic brain injury after a car crash
Dempsey: "She feels less inflamed...she doesn't care she hasn't lost that much weight" because she generally feels much better.
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On paying for these treatments
Kaufman: Insurance coverage is a huge obstacle. The only way you can get insurance coverage is for FDA-approved indication. That means you can't microdose. You cannot obtain it at a low dose and still get coverage. You can't write a prescription for Wegovy for 0.25 mg at CVS...they'll look at you like you're crazy. In my practice, patients pay cash.
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One of the other comments poses a great question
"It might not work at all - I certainly have those pateints who don't notice anything. I also have patients who do poorly pretty quickly."

- did she say anything more about the 'doing poorly' ?
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The answer is of course no.
 
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"What if researchers could hear directly from the patients they study? We are hosting a Research Roundtable on August 14 that will bring together patients with complex, multi-system, chronic conditions with researchers for exactly that."

Applications to speak are due July 24. Speakers will be notified by July 31.(Caregivers are also welcome to apply.)

Apply here:

docs.google.com

"Patients to Researchers: Lived Experience Research Roundtable" Application

Renegade Research will be hosting a live Zoom webinar on August 14. 6-8 patients with ME/CFS, Long COVID, or related conditions will present 5 minute medical histories (such as diagnoses, onset, progression, test results, treatment responses, etc.) directly to researchers. This is a...
docs.google.com docs.google.com
 
I've just listened to an OMF webinar on PEM that had two Renegade Research panel participants, Rob Phair, Chris Armstrong @MelbME and the OMF facilitator. I only caught the last bit of it.

OMF seem to be very close with Renegade Research. There seemed to be a lot of acceptance of/promotion of the idea of PEM being caused by a shortage of ATP.
 
Renegade Research have announced a new project, SIGNAL:
This project is built around a device lending library. Patients diagnosed with ME/CFS or Long COVID borrow promising therapeutic devices, shipped directly to their homes at no cost to them, for a 1-3 month lending period. While borrowing, participants contribute standardized longitudinal data through the Brain Inflammation Collaborative/Solve ME unhide® Solve Together platform. This allows each lending cycle to be a real-world research opportunity.
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The devices in question:

IMG_8772.webp


IMG_8773.webp

Interpreting the anecdotes/user health data this project generates seems incredibly fraught without placebo control groups. I worry this project will facilitate a wealth transfer from pwME to these device companies without benefiting us.
 
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Yes, so many issues with this. The devices are hyped as 'promising therapeutic devices', and patients self-select, seemingly with no validation of diagnosis.

I can imagine that wearing that first device, with its head piece and nose cord, is going to make the patient seem like a member of the tin hat brigade to many observers.

Very disappointing to see SolveME involved in this. I wonder if any of the parties are being funded by the device companies?
 
I am especially disappointed with the involvement of Todd Davenport and Jarred Younger in this as I'd thought that both would surely wanting to do better than spending time and resources on such useless if not to say fraudulent devices.

It's not just that there is no reason to believe these devices are going to do anything for ME, there is not much reason to believe that these devices help with any condition or even do anything at all let alone what they advertise.

Regarding "SolveME" I was already a bit disappointed that they let the Simmaron Research group promote Rapamycine much more than their data should allow without ever challenging them in the slightest way, but this is a new low.

I can just repeat what I said in another thread about the Perrin Technique, snake oil remains snake oil and, contrary to what some people seem to believe, just because it's physical it doesn't necessarily make it much better then 'think-yourself-well'-courses à la Gupta or Lightning Process.

And I have to say that I am extremely relieved to see that my opinion isn't that different from others on this forum, because on Social Media they even got some praise for this...
 
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