Whitney Dafoe Updates

Yann04 said:
It’s been two years since I could speak.
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Two years is such a long time… I’ve only experienced being non-verbal for days during bad PEM. It must be so hard for you, I can’t imagine.


Whitney has made incredible progress lately, first eating and now speaking. May 2026 bring him even more improvement!

I hope he will share with the community what it is that helped him, when he feels ready to do that.
 
Jaybee00 said:
Mentions that the born free protocol probably helped him {{unfortunately?}}.

Thread here:

jonathan_h

Thread 'The Born Free Protocol'

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...
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The borne free website has crashed do to significant traffic, most likely do to the X post and the Reddit post outlining borne free and Whitney’s improvement.

I’d been interested if Ron Davis’s take on the protocol. This is is causing quite a stir in my local groups, with some saying that he must endorse it if his son is doing it.
 
Varda said:
I hope he will share with the community what it is that helped him, when he feels ready to do that.
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He has, and, as the other posts here note, it is rather troubling.

From the video:
I don't know how my stomach has started working again or how I started being able to talk again. It is most likely from Joshua Leisk’s Born Free Protocol. I started his protocol right before these changes started to happen and nothing else was changed in my medication or physical routine at that time, so I feel confident, but not certain his protocol is responsible.
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I wish Whitney well but I also wish he would be more careful about attributing his improvement to an unevidenced protocol.

I hope this doesn't turn into another situation where a prominent ME/CFS sufferer becomes the poster person for unevidenced treatment and thousands end up being harmed.

We have heard in the past that some people have done very badly on the protocol, and the version we saw of it when we looked a few years ago made no sense.

I can also think of some other pwME who have improved significantly without doing the protocol, and been scrupulously careful not to publlicise whatever treatment they were testing at the time they improved - understanding that it could just as logically be coincidence.

OMF has lots of money. If they think the protocol makes biological sense, the responsible thing would be to set up clinical trials, not do a social media blitz.
 
Trish said:
OMF has lots of money. If they think the protocol makes biological sense, the responsible thing would be to set up clinical trials, not do a social media blitz.
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I wish he'd just stay off his phone for a while.

And OMF should ideally distance themselves from him if this family can't tell apart fact from fiction. Maybe it's time for Ron Davis to retire and let other people, who are less emotionally involved, continue his work.
 
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The entanglement between the Davis family and OMF looks unfortunate when things like this are the result.

Whitney's entitled to say whatever he likes, but given the links, he could do with a friend to remind him that the human story is the most important and the most interesting part. Not theories about what changed, or why.
 
I’m more surprised anyone that just started eating again was able to tolerate the amount of supplements/probiotics that are given during this. I wonder if he did the full thing, parts? It’s all ambiguous.

Yikes my entire feed on X is bornfree.

I have worried with some of the research sponsors and invitees of round tables that OMF has either driven or influenced by this. Personally I donated to Dara trials this year where other years OMF for this reason.
 
Whitney’s improvement, both in relation to feeding and more recently to speaking, is most valuable in that it offers hope to the very severe. It tells us that on going deterioration is not always an inevitable consequence in very severe ME/CFS, and my take away is that it provides anecdotal support for a role in non oral feeding in managing our condition.

Whitney serves an important role in educating people about very severe forms of our condition and I wish him and his family well. Also I strongly caution us about how we respond to the personal aspect his recovery. I worry here we increasingly run the risk of blurring the boundary between scientific discussion and personal comment. We need to be conscious that there is potentially a fine line between rigorous debate and personal antagonism.

However his high profile and large following should make him careful about how he shares his beliefs about any reasons for this good news. I am sure he genuinely feels that the ‘Born free protocol’ has helped him, which I can not comment on, but given we know that not everyone that undertakes it shows improvement and that ME/CFS can be variable, any conclusion about causality is currently unwarranted. In the context of this intervention having significant energy costs particularly for those without the levels support available to Whitney such anecdote is not good reason for others to also follow this protocol.
 
Peter T said:
We need to be conscious that there is potentially a fine line between rigorous debate and personal antagonism.
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I don't see any personal antogonism here. I agree it would be unfair and inappropriate. I'm sure we are all very pleased for him and his family that his health has improved after years of terrible suffering. As you say, it also gives hope to others, and evidence that even the severest ME/CFS is not necessarily irreversible provided adequate nutrition is maintained.

But I also think it's appropriate to express concern about him and his family publicising particular treatment regimes that are as yet untested in cllincal trials and known to make some pwME sicker. His story has a worldwide following. That confers an extra layer of responsibility.
 
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