This is a great article. I think the mental health impact of this painful, debilitating disease is often overlooked. I've had Autonomic Dysfunction/Dysautonomia for years, and my pain levels along with the loss of my independence can be extremely debilitating. I'll be checking out the toolkit next!
I would also like to post my experience, because it has to do with the impact of nutrition on our mental health status.
Many people are deficient in choline, which is necessary to produce acetylcholine. Acetylcholine is a neurotransmitter. A deficiency impacts our nerve cells, including those controlled by our autonomic nervous system. This impacts all the things we don't think about...heart rate, digestion, body temperature. The ChAT gene produces choline acetyltransferase which is used to make Acetylcholine, so variants on that gene, or the PEMT gene responsible for processing choline, can cause a deficiency even if dietary intake appears to be adequate.
I also have genes that are impacting my Methylation Cycle...which includes the PEMT gene, plus MTHFR, MTRR, CHDH, BHMT and others. I found improving my nutritional status, using choline, methylfolate, methylcobalamin (B12), B6, magnesium, betaine and supporting my GI function by avoiding wheat/glutens, using digestive enzymes and taking high quality prebiotics and probiotics is having a positive impact on my pain, fatigue, the gastroparesis and low amino acid levels. (Who knew it takes folate and B12 to process amino acids!?!)
In addition, if a person is deficient in methylated folate, methylcobalamin (B12), or B6, homocysteine can accumulate in the blood. High homocysteine levels can impact cognitive function, neurodegenerative disorders and cause cardiovascular issues.
A Methylation profile I ran a month ago showed, that my homocysteine levels are still somewhat high. I'm hoping my cardiologist will recheck it for me at my next appointment. And I will be rechecking my amino acid levels again in a few weeks.
Follow up testing will be key until we find the correct amount of each supplement.
And my final comment is that Tulane University wrote a paper in April 2023 linking MTHFR variants, and the inability to convert folate to methylfolate to EDS. So some of this is still fairly new and more research is needed, but its progress and is hopefully generating more interest in finding treatments for this disease process!
**Please keep in mind that I do not recommend supplementing without doing your research and discussing your particular symptoms and nutritional status with your healthcare provider and/or nutritionist. For example, I read that too much methylfolate can cause some of the same symptoms as too little! So do your due diligence!**

If you're interested in learning more about the disease process and recommended management plans, I found a great resource for pretty much everything EDS is the book "Disjointed", published in 2020. Its a compilation of chapters contributed by some of the top EDS specialists in the country.