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Re: I've reduced and almost stopped my lips peeling a few times, heres how. by CrustNoMore ..... Peeling Lips Exfoliative Cheilitis

Date:   4/12/2017 5:02:20 AM ( 4 years ago ago)
Hits:   2,560

Tergot (and Questlf),

Thanks for your message(s).

People here are free to pursue whatever approach to EC they find most helpful. I'm not necessarily opposed to a holistic model of health. I'm not uncritical of allopathic medicine either.

However, my experience with alternative
medicine, having had Chronic-Fatigue-Syndrome for ten years, is that it tends to lead to wasting a lot of time and money chasing rainbows. It tends to give hope but is not necessarily useful beyond that in most cases.
There is also a misconception that alternative medicine is natural and therefore not risky or dangerous. Actually, various alternative therapies, including strict dietary changes, pose health risks. I have personal experience with this in that the raw food diet made my then-undiagnosed hypothyroidism worse. This piece pretty much flags up some of the problems with self-styled nutritionists online.

Much of the alternative health world is unsupported by scientific evidence and relies on a religious-like faith in efficiency. Just because something is unsupported by scientific evidence doesn't necessarily mean it doesn't work (in some cases it's possible that scientific evidence is just lacking for a particular approach and more evidence will emerge eventually). However, some alternative health approaches are pseudo-scientific, meaning they use a scientific-sounding vocabulary to give legitimacy to claims which have no scientific basis. A lot of these claims are in direct contradiction to medical evidence and I have a problem with this because it is misleading and harmful. Some of the alternative health claims in relation to disorders autism are totally unethical (like using industrial bleach supplements under the label Miracle-Mineral-Supplement ). So while allopathic medicine can have negative side effects, alternative medicine can definitley have harmful side effects as well. Allopathic medicine is quite upfront in most cases about the possible side effects, though, unlike alternative medicine.
So I think it's helpful to highlight what is scientific versus pseudo-scientific.

I see no problem with trying to treat a EC by increasing general health (getting a good diet, enough sun, enough sleep, improving your mood etc). Actually, it's probably one of the best approaches to this illness, given the lack of medical evidence for any particular approach.

It's not the case that using antifungals or topical just masks sebhorric dermatitis, though, because reducing the level of fungus on the skin actually directly influences the disease process. It is true that there is an underlying issue of immunity that isn't being influenced by the topical but is taking some supplements necessarily going to effect that to a large degree ? The evidence is lacking for supplements.

I personally think targeted, evidence-based treatment is going to provide the quickest, most effective results.
The problem is we don't currently have enough available scientific data (basically no randomised controlled trails exist for EC) to support any one approach. So, as patients, we have to make calculates guesses. I want my guesses to be based on prior medical research and case histories since these have a weight of evidence behind them.
I also think our guesses for what therapies might work will be better if we can come up with a scientifically/ biologically plausible theory of causality. So that is what I am trying to do. Of course, since I can't research people in a clinical environment, my guesses are going to be quite limited and fallible.

If anybody wants to criticise my conclusions about EC based on scientific evidence, I am totally fine with that. Actually, I will even be glad because I think it helps us to move forward towards an actual answer for this condition, which is I think what we all want here.


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