1/ A lot of patients have been asking me about the "Born Free" (BF) Protocol and given my research what do I think about it. Here are my thoughts : First things first : @joshual_tm - who I have spoken with- appeared to have a true drive....
2/ ..to solve the #MECFS puzzle. He has always been very friendly, calm and willing to answer questions. I am sure he has put a lot of effort in making this protocol. Now, is it possible for someone to become symptom free just with supplements or any such case should...
3/ ..be flagged as "snake oil" "? I may be biased here but this is what happened to me. It took me months but I am in remission due to supplements. Now, let's look at the BF protocol : I made several efforts to understand the basis of it but I found it extremely complex.
4/ Complexity here does not mean that I am able to dismiss its usefulness. I think that BF makes the assumption that a set of problems is applicable to all #MECFS patients. Is this true? If a patient is found to have a specific metabolic bottleneck..
5/ ..that requires specific interventions to be provided to the patient, we cannot expect that in this case dissolving a biofilm would work for this patient (I hope we can all agree to this) . Existence of different versions of the protocol may also be a concern.
6/ Since @DafoeWhitney had these remarkable results so far, this deserves a closer look. First, amazing for him. For the rest of us it shows that #MECFS is reversible. However we have patients who followed BF protocol and had adverse events. Others did not see any difference.
7/ Based on my research, I hypothesize that a significant brake to @DafoeWhitney's condition was the upregulation of GABA receptors from Lorazepam. A solid base was set back then. Then what was needed was the right boost. Is it possible that BF protocol gave that?
8/ As mentioned in an older tweet, I believe that we have convergence on a number of medical concepts as being important given research findings : Some examples : phospholipid dysregulation, glutamate metabolism, ER Stress, Proteostasis dysfunction, glycosylation etc
9/ It seems that BF includes interventions that address several of these topics. If some of these are indeed causes then some patients could benefit from it. OTOH I saw supplementation of L-Glutamine in the protocol. Could this negatively affect glutamate-sensitive patients?
10/ Question : If a patient has a certain metabolic problem such as hemochromatosis, would it be ok for this patient to follow BF protocol? There should be clear warnings for at least some patients and there are none. This, is also concerning.
11/ Since being actively engaged in research, I would say that we must look closely to BF and see whether it touches upon research findings. If research suggests that a single "fits all" intervention is unlikely then such "fits all" protocols could be extremely problematic.
12/.... We should therefore explore further why we had these patient responses and whether the theory behind this protocol aligns with current and older research findings.I also would like to make clear that there is no imply either to try or to avoid this protocol.
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