When I started work on my website, almost 4 years ago, I was very sceptical about natural drugs. Over the years, I had tried a lot of different alternative approaches to alleviate my symptoms, and nothing had helped until I received a Fabry-specific treatment. That convinced me that real symptoms should be treated with real medications. However, the events that have unfolded over the past few years have again changed my perspective. With events I mean that my treatment was cancelled for reasons that have nothing to do with science, and then I found that galactose, which is sold as a nutritional supplement, works better than my Fabry-specific treatment. Today, I still think that most nutritional supplements and herbal medications are ineffective, but there might be some gems that are hidden amongst the countless preparations that are on offer.<\/p>\n\n\n\n
Pharmaceutical science doesn’t move as fast as it should. There are many people that need help today, but drug development is a slow and expensive endeavor. New drugs that enter the market are increasingly expensive. This is already a problem for the German public health system. In less developed countries, access to certain treatments, like Fabry-specific treatment, is nigh impossible. Therefore, I’m scouring scientific literature for substances that are cheaper and readily available. Nutritional supplements have a number of advantages compared to the experimental chemicals that are used in some scientific experiments: they have been tested to be safe for human consumption and are available without a prescription. The active substances of a number of nutritional supplements have been well characterized. Especially chinese researchers are trying to put traditional chinese medicine on a scientific footing. This might sound far-fetched, but it’s not much different from modern drug development in the western world. Pharmaceutical companies often have large compound libraries of substances that are tested for medicinally relevant properties. Chinese researchers do the same, only using substances that have a long history of traditional use.<\/p>\n\n\n\n
Of course, nutritional supplements have a number of drawbacks compared to prescription drugs. Between a proven physiological effect and a practical use for patients, there are many steps. These have to be elucidated before a drug may enter the market, but for nutritional supplements, these are often poorly characterized. Bioavailability and relevant concentrations are just two of them. Pharmacokinetics are often unknown. Additionally, there’s a risk of interference with prescription drugs. Practically, preparations containing the same active substance may contain completely different concentrations, so patient experience reports should always mention the concentration of their preparation in addition to dose and frequency.<\/p>\n\n\n\n
Lastly, if I’m trying to find a natural substance that would help ME\/CFS patients (and other patients affected by conditions as described in my August 4 blog post), what does “helping” constitute? I’m writing under the assumption that ME\/CFS is caused by ER stress, a disruption of a cell’s metabolism caused by protein misfolding. When too many misfolded proteins are produced, due to genetic mutations or viral infections, the degradation mechanism are overwhelmed, leading to the formation of aggregates of misfolded proteins. The progressive acculumation of these aggregates causes a persistent inflammation that in turn causes of many of the symptoms associated with ME\/CFS. For more information, watch my video<\/a>. From my experience with Fabry patients, the restoration of proper protein folding means that the degradation mechanisms for misfolded proteins are no longer overwhelmed. As a consequence, existing aggregates of misfolded proteins are slowly broken down. This process triggers occasional bouts of increased inflammation. So when I’m looking for a natural substance for the treatment of ME\/CFS, I’m not looking for something that allows patients to get up out of their beds after a day or two. Instead, I’m looking for something that removes the cause of the chronic inflammation from the body. This is a slow and unpleasant process that only leads to a gradual improvement of symptoms, interspersed with occasional bad days.<\/p>\n\n\n\n Looking for substances that reduce the effects of ER stress, I initially found two papers, one<\/a> about the treatment of ER stress in the context of Alzheimer’s disease using mainly natural substances, and one<\/a> about the treatment of ER stress in the context of Parkinson’s disease using mainly chemical compounds. Because of the reasons mentioned above, regarding availability and safety for human consumption, I have mostly focused on the first of those two papers. One substance that stood out is quercetin. Quercetin has been reported<\/a> to improve ME\/CFS symptoms. An extensive description of quercetin can be found here<\/a>. However, these sources do not mention the mechanism of action, so while there is some recognition that quercetin has a beneficial effect for ME\/CFS patients, it is likely still poorly understood why it has such an effect. Here, I would like to propose quercetin’s modulation of ER stress as the relevant mechanism of action. Quercetin has a poor bioavailability, but a combination with bromelain or a liposomal formulation might enhance its uptake.<\/p>\n\n\n\n The above paper mentions other substances, including schisandrin, ginsenoside and resveratrol (see also here<\/a> and here<\/a>.<\/p>\n\n\n\n A substance that is not included in the above paper is harpagoside, the active substance of devil’s claw. This substance is found to have a positive effect<\/a> on inflammation. It also reduced<\/a> mitochondrial dysfunction in an articially induced Parkinson’s disease model. Additionally, this substance might have a direct beneficial effect<\/a> on ER stress.<\/p>\n\n\n\n