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 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:
—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:
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:
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.
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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