The Born Free Protocol
- Thread starter jonathan_h
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InitialConditions
Senior Member (Voting Rights)
The host spends much of his time on X dismissing anything ME related, shitting on advocates and charities, and winding up ME/CFS patients. He genuinely believes LC has nothing to do with ME/CFS and that ME folks are 'grifters' who have 'hijacked' LC. Others here will know him as 'Dave the LC Barbarian'. He seems to have recently deleted all this tweets and revamped his profile.
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InitialConditions
Senior Member (Voting Rights)
He's a Renegade Research person now.
Joshua Leisk on nitter Dec. 21 retweeting himself from 31 Jul 2024.
He's mentioning OMF. OMF needs to make repeated public statements until it's common knowledge that Leisk's BF Protocol has nothing to do with them, that they didn't invite him to speak and that he isn't part of an OMF working group.
I'm frustrated and angry by all this especially right before the holidays. And who will speak out for us besides @Jonathan Edwards? This seems like another situation where very sick people have to keep doing the heavy lifting. Will you get involved in this @dave30th? We need a lot of help in the US.
He's mentioning OMF. OMF needs to make repeated public statements until it's common knowledge that Leisk's BF Protocol has nothing to do with them, that they didn't invite him to speak and that he isn't part of an OMF working group.
I'm frustrated and angry by all this especially right before the holidays. And who will speak out for us besides @Jonathan Edwards? This seems like another situation where very sick people have to keep doing the heavy lifting. Will you get involved in this @dave30th? We need a lot of help in the US.
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Mij
Senior Member (Voting Rights)
I had all these panels of tests done over 25yrs ago and had a consult with a biochemist regarding my results. He owned a compounding pharmacy and tailored a 'custom formula' based on my results. I was deficient in most vitamins, proteins, fats, high oxidative stress et, but only omega-3 fish oils and magnesium/taurine injections improved my energy levels. It was pretty instant too.
His "hypothetical disease model" has been tried and done over and over again since the late 90s, and yes there are some hit and misses if you want to waste a lot of money on hope in a bottle.
"Some key mechanisms -
1) PEM explained primarily as impaired glycogen storage -> frequent glycogen depletion, downstream of multiple mechanisms, some key influences being sympathetic overdrive, low intracellular mineral status and histamine.
2) Baseline worsening created by pushing through PEM is caused by lactic acid metabolism -> acidaemia / acidosis -> enhanced renal excretion of zinc and electrolytes + inflammatory signalling cascade that inhibits absorption of dietary minerals.
3) Gut fermentation syndrome -> chronic acetaldehyde -> wide cascade of impairments, endogenous opioid synthesis and dysregulated cAMP-PKA.
4) Dysautonomia and extracellular ATP alarm signalling vs low dampening signal (inosine)... and quite a range of other impairments explained in the cascade".
His "hypothetical disease model" has been tried and done over and over again since the late 90s, and yes there are some hit and misses if you want to waste a lot of money on hope in a bottle.
"Some key mechanisms -
1) PEM explained primarily as impaired glycogen storage -> frequent glycogen depletion, downstream of multiple mechanisms, some key influences being sympathetic overdrive, low intracellular mineral status and histamine.
2) Baseline worsening created by pushing through PEM is caused by lactic acid metabolism -> acidaemia / acidosis -> enhanced renal excretion of zinc and electrolytes + inflammatory signalling cascade that inhibits absorption of dietary minerals.
3) Gut fermentation syndrome -> chronic acetaldehyde -> wide cascade of impairments, endogenous opioid synthesis and dysregulated cAMP-PKA.
4) Dysautonomia and extracellular ATP alarm signalling vs low dampening signal (inosine)... and quite a range of other impairments explained in the cascade".
Both. I think he first took Ativan, after which he improved, and then Abilify, which seemed to help more. But I think some of the effects wore off eventually.
This seems possible, given the numbers of different compounds involved. Of course, they could also end up making people worse.
Suffolkres
Senior Member (Voting Rights)
Haa anyone any ball park figure for rhe costs?
Programme, advice, products please?
Just interested as against Lightening, etc etc?
Just being nosy actually.
mariovitali
Senior Member (Voting Rights)
I note that you start with a comment on the personality and stated motivation of the creator of the so called Born Free protocol, Joshua Leisk. Of course you are free to do so, it's your twitter thread, not a scientific study, so up to you, but seems to me to be trying to set the scene for your comment about BF in a more positive light than the actual content of the protocol warrants.
Then you comment on changes in the health of one named individual and speculate about causes in changes to that person's health. That's not useful either, as it's second hand speculation based on anecdote, not a medical case study.
The rest of your twitter thread mentions your own experimentation and use of unnamed supplements. Again, not useful information for readers. And you make some comments about the BF protocol, presumably based on bits and pieces from your own unreplicated researches.
I'm afraid I can't see the point of your comment on the BF protocol.
Can you strip out the irelevant anecdotes and personal comments, and point to any particular evidence that is helpful for readers of this thread in deciding whether it's worth spending their time and energy examining what seems to me to be just another in a long string of protocols produced over decades by non scientists with outlandish claims of helping a wide range of conditions?
Suffolkres
Senior Member (Voting Rights)
Thank you for this measured necessary response Trish..especially today!
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mariovitali
Senior Member (Voting Rights)
I sure will @Trish
Just to let you know and also others, there is this thing called negative bias. As I am rushing at the moment, I will post ASAP my reply.
Merry Christmas !
Thanks for replying, @mariovitali. A Merry Christmas to you too.
I assume you are referring to my comment when you mention 'negative bias'. Yes, I do have a negative bias against promoters of unevidenced protocols who go all over social media encouraging very sick and desperate people to follow complicated and expensive protocols with no research evidence to support them and that have made some people sicker, and moreover claiming without evidence that his protocol can treat all sorts of other conditions.
Forum members with far more biomedical knowledge than me read his article he published as a preprint a few years ago and told us the protocol is not based on sound science.
And I do have a personal interest of a sort here. When Leisk joined the forum he tried to convince us his protocol made sense, and made outlandish claims about efficacy. He even contacted me by forum private message to invite me to participate. I hope he didn't do the sane with others. That would be against forum rules. There are so many red flags. His action may not be illegal, but in my view they are unethical.
I have much more respect for your own decision not to publicise what you found helped you, with your understanding that your self treatment should not be promoted as a cure for others just on the basis of your anecdote.
I assume you are referring to my comment when you mention 'negative bias'. Yes, I do have a negative bias against promoters of unevidenced protocols who go all over social media encouraging very sick and desperate people to follow complicated and expensive protocols with no research evidence to support them and that have made some people sicker, and moreover claiming without evidence that his protocol can treat all sorts of other conditions.
Forum members with far more biomedical knowledge than me read his article he published as a preprint a few years ago and told us the protocol is not based on sound science.
And I do have a personal interest of a sort here. When Leisk joined the forum he tried to convince us his protocol made sense, and made outlandish claims about efficacy. He even contacted me by forum private message to invite me to participate. I hope he didn't do the sane with others. That would be against forum rules. There are so many red flags. His action may not be illegal, but in my view they are unethical.
I have much more respect for your own decision not to publicise what you found helped you, with your understanding that your self treatment should not be promoted as a cure for others just on the basis of your anecdote.
Jonathan Edwards
Senior Member (Voting Rights)
I have come across very few examples
- other than of course this sentence itself as often used by those who prefer positive bias.
I think we can call things out for how they are: This is whole thing is simply quackery. That has nothing to do with negative bias.
How should someone with MS feel about the things Joshua Leisk is saying, whilst he claims to have found something with efficacy against MS, autism, ME/CFS, Hashimoto's and a whole list of other things, conditions which have very little do with each other in terms of treatment.
I think it's fair to call things how they are. Nobody serious would even think this stuff is worthy discussing at length. Only in ME/CFS is this kind of stuff given air.