Yes, I have investigated Meglathery and her RCCX theory. She seems to be very devoted to it, having put a lot of effort into it.
I think I fall into the skeptical category. I don't know what myths she is talking about and tend to prefer things that can be identified and measured to verify any theory, which seems impossible from what I've read with this one.
I don't know if the theory is correct or not, but the issues I have are:
- She is a psychiatrist and I don't believe in what psychiatrists do, having learned that most mental illness is do to food allergies, leaky gut, nutrient deficiencies, infections, inflammation, toxicity, and very occasionally and less commonly some awful SNP or SNPs.
- She is not providing rs numbers that anyone can check, either on 23andme, WES, etc. She just goes on and on and on about these genes, which everyone has. Which SNPs are they and what role does each one have in this? How do you know if they are doing it?
- Genes can express differently based on environmental factors and how other genes are expressing themselves. Just because one has a pathological SNP, in many cases, it's not expressed until tje right environmental factors are there.
- Sure they can create many of the symptoms she refers to, but I have found it's more productive to look at what's going on biochemically or perhaps with physics, and to try to "normalize" whatever is out of whack, using a systems point of view, with a combination of supplements, pharmaceuticals, hormones, stress reduction, and techniques that affect the physics (acupuncture, trigger points, and other modalities).
- If she is correct, this may apply to some of us, but likely not to most of us, as she herself admits.
- Then there is the question, if one can figure out that all this applies, what does one do about it? After reading and reading and reading, I don't see a thoughtful, comprehensive, treatment approach that will get anyone anywhere. Mindfulness is wonderful, but what she is describing is going to take more than mindfulness to fix.
ME/CFS is indeed a complex disease. The scientists believe causes are heterogeneous and that there are subsets. There likely is a subset with some of the qualities Meglathery describes. The scientists have already been finding SNPs that seem to cluster in ME/CFS patients, none of which seem to be the same as those on Meglathery's list.
My own journey has brought me a long way with personalized medicine. It's been by necessity, because there just isn't enough research out there to nail the perfect ME/CFS theory and I don't have years to wait for perfection. I've also found that I have some SNPs (HFE, Factor 2, SOD2, and many more) and environmental factors (carboplatin and paclitaxel) likely not shared by others and on top of all the usual ME/CFS factors that have confounded my situation, so that unique treatment components must be personalized. Each one of us will have unique factors as well.
So, while theories are interesting, the way to get well is to normalize the body's biochemistry and physics. Theories can help us, but there is no substitute for high quality lab work and other testing
and a prioritized, personalized, systematic treatment plan, which unfortunately is no easy task.
Thanks for sharing
@debored13 - I appreciate your continued quest to bring in interesting ideas and move the dialog along.