The Born Free Protocol

jonathan_h

Established Member (Voting Rights)
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 it was worth helping people solve.

I gather he would not be the first IT professional to believe he had, working in isolation, achieved a Nobel-worthy breakthrough in a field he had no formal training in.

One striking thing about his protocol is how those interested in it talk about it: it’s rare to see it mentioned without also seeing lamentation of how difficult, confusing, and overwhelming it is. This makes a lot of sense when one views Leisk’s 54-page protocol guide. Below, I’ll mention a few things that stood out to me from my reading of it.

—The protocol guide begins with a list of the things it treats:
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). Long COVID / Long Haulers. Viral / Post-Viral Chronic Fatigue. Post-Exertional Malaise (PEM). “Floxed”. Migraines. Breathlessness. Hypoxia. Acidosis. Alkalosis / pH Dysregulation. Dysregulated Cortisol. Dyslipidemia. Alopecia. Post Finasteride Syndrome (PFS). Post SSRI Sexual Dysfunction (PSSD). Post Accutane Syndrome. Small Fibre Peripheral Neuropathy (SFPN). Mast Cell Activation Syndrome (MCAS). Diamine Oxidase (DAO) Deficiency. Histamine intolerance. Brain Fog. Sleep disorders. Major and other types of Depression. Anxiety. Postural Orthostatic Tachycardia Syndrome (POTS). Autism Spectrum Disorders (ASD). Chronic Inflammatory Response Syndrome (CIRS). Fibromyalgia. Dysautonomia. Frequent Urination. GI Disorders. “Small Intestinal Bowel Overgrowth” (SIBO). Vitamin B6 Toxicity. Vitamin A Toxicity. Candidiasis. Aspergillosis. Ehlers Danlos Syndrome (EDS). Joint Pain. Connective Tissue Disorders. Tinnitus. Polycystic Ovary Syndrome (PCOS). Erectile Dysfunction. Elevated Cholesterols / Fasting Glucose / D-Dimer. Hashimotos

—Stage 1 of the protocol involves up to 50 different interventions—mostly supplements, but also significant dietary alterations and other practices (e.g. lymphatic massage). The protocol has 3 stages and adds further interventions on top of those from stage 1.

—Feeing more ill during the protocol is expected and explained by Leisk as a sign the protocol is working:
NB. While all efforts are continuing to be made in eliminating them, some temporary paradoxical effects may be observed during protocol commencement. As certain deficiencies are corrected and neurotransmitter homeostasis is reset, paradoxical effects may include: temporary adrenaline and heart rate increases. Resolving a severe copper deficiency may induce temporary kidney pain and nausea in some cases. Increasing energy availability will often initially increase immune activity and related symptoms severity, which can be psychologically challenging and create some fear in continuing to move forward with the process.

While some successful interventions have paradoxical effects, the implications of this stance, absent better evidence the protocol works, are troubling to me.

—Leisk shares his (in my opinion, patronizing and dangerous) views on PEM and the necessity of pushing through it:
Anyone who has experience with ME/CFS is likely to have gained a significant appreciation for the symptoms associated with “crashing” and Post Exertional Malaise (PEM). A daily fear that too much activity will “crash” you and leave you with fatigue / malaise, flu-like symptoms and often tinnitus. A further fear that this may persist for days / weeks / months. […] Unfortunately, due to the trauma surrounding PEM, some people choose to severely limit their activity. This unfortunately has an impact on the capabilities of their immune system to deal with chronic infection. […] For optimal immune response and hormones, “pacing” should always be attempted - testing the appropriate upper threshold for activity, each day, unless that threshold has been exceeded already. Over sufficient time, inactivity leads to “rotting”, which is wholly undesirable, as the immune response is expected to be insufficient for maintaining resilience against pathogens. […] Proceed carefully, however the age-old phrase “no pain, no gain” absolutely applies here.

This protocol’s substantial costs and risks, paired with growing community interest in it, are a troubling combination to me. I would love to see someone with relevant expertise examine in detail the scientific claims Leisk makes—I expect such a document would save some people money, time, and heartbreak.
 
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Feeing more ill during the protocol is expected and explained by Leisk as a sign the protocol is working

This idea that feeling worse is a good sign is very common in all sorts of situations, not just ME, and people are repeatedly told that they will get better. Decades ago I worked in an office with a man who believed devoutly in "No pain, no gain" and he took this to such extremes that he was never well and was usually in pain. In the end he became severely depressed and resigned and I've never seen him again since. Since the man was only in his early 30s he may have ruined his body permanently.
 
This is just a farrago of gibberish. It's a bunch of half-understood ideas and half-baked concepts plucked from the literature and re-assembled with duct tape and string into one of the most profoundly pseudoscientific documents I've ever encountered. If people follow the advice in that PDF then some of them are going to come to harm.

This kind of thing really needs to be regulated out of existence.
 
This kind of thing really needs to be regulated out of existence.

There've been people like this as long as humans have had language, though. The narrative changes, but the frame story and devices are the same.

The only remedy is to keep reminding people they belong on the same shelf as implausibly-named princes with an urgent need to put eight million dollars in your bank account.
 
This is just a farrago of gibberish…one of the most profoundly pseudoscientific documents I've ever encountered. If people follow the advice in that PDF then some of them are going to come to harm.

Agree. Proliferation of such nonsense is a sad and preventable outcome of society’s failure to invest in ME and find actual explanations and treatments.

I feel bad for the people who will try this out of desperation to feel better and follow his uninformed, costly, and harmful advice.
 
You can tell something is a scam by the name they give their product. We're building up a collection, with Lightning Process, Crysallis effect, and now the Born Free protocol. I'm sure there are more. Perhaps pacing needs a new name. Any suggestions?

I remember being horrified when OMF invited Leisk to one of their researchers' meetings.
 
You can tell something is a scam by the name they give their product. We're building up a collection, with Lightning Process, Crysallis effect, and now the Born Free protocol. I'm sure there are more. Perhaps pacing needs a new name. Any suggestions?

I remember being horrified when OMF invited Leisk to one of their researchers' meetings.
Usually, the more conditions it “cures”, the more scammy it sounds is a decent rule. Especially if the conditions are vague and without known treatments.
 
Hello everyone :)

I'm in French, so I hope I can write properly.

I've started to discover your forum.
I don't really understand what you have against Josh Leisk and his protocol ?
Is it wrong for him to be in contact with the Dafoe family?
And even if he manages to get some money back, what's wrong with that? In my opinion, we're not like the crooks who charge you $6,000 for training for MECFS...

Thanks for your feedback
 
I think it's better to ask, what evidence is there to support this protocol? We have not seen any clinical trial research to support it, nor, as far as I know, even any medically supervised and assessed published case studies.

There have been decades of people inventing treatment protocols with no sound evidence. There are usually a few fans who claim they were cured, and dozens or possibly in these days of amplification via social media, thousands who try these protocols and find all they do is disappoint and waste effort and money.

Desperate people will try all sorts of things, many of us have done so.
 
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