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there's a difference between a genetic condition (follows one of several different defined genetic inheritance patterns; note that this assumes everyone is either XX or XY, which is not actually the case), and a familial condition (does tend to have a higher incidence in families, but does not...

I emailed mine with the super easy fill-in form. I know it's not as good as calling, but it's something that I could do.

I think it's different by patient whether we seem more susceptible to incidental infections, less susceptible, or just seem to get things but not get all the associated symptoms. It does seem to change over time for some. I caught everything in my early years of being ill, especially if I was...

I am not sure that post-polio (or post-SARS or post-whatever-infectious-disease) is a different disease from ME. I am sure that people with lupus, MS, RA, and other diseases can have post-exertional fatigue, but I don't know what other symptoms some of them might have. I mostly hear about...

Many PCPs feel overwhelmed with a complex illness like this and don't know where to begin. Regardless of there not being evidence-based treatments specific to ME (except for some comorbid conditions and complications), I agree with you that there needs to be an actual specialist. To diagnose...

It looks like there are various programs for training new researchers, and there's a funding structure (not currently funded) for developing or improving continuing education. So it's possible. Most people seem to look to CDC to do that internally, but it seems reasonable to ask NIH to fund...

Yes. My C3 and C4 are normal. Those are the only ones that were checked. This was done because I have positive ANA. I do not have chronic infections with my ME. https://labtestsonline.org/tests/complement...

I understand it’s awkward to ask, but your work is appreciated.

I think these have been posted before but just in case anyone missed them, they’re very helpful in figuring out what’s going on. NIH Obstacles http://occupyme.net/2018/11/29/nihs-obstacle-course-to-success-for-mecfs-researchers/ Shorter version...

Perhaps you might find this of use:

I thought they were finding that exercise, long a mainstay of MS treatment, wasn’t helpful after all.

A commission on salary tasked with determining the best way of finding cause and treatments. Promising. Also thanks much for digging this up!

Somebody helped me find a baking soda and fluoride toothpaste at Trader Joe’s that’s working out okay. Thanks everyone. Great ideas, and I hope everybody can find something they can use.

Glycerin is tricky. As best I understand it, it’s a fatty acid that could be used to make soap, and could be a byproduct from soap making. It’s an emollient (keeps moisture in the skin). Possibly it might depend how much you trust the manufacturer to have a clean product. Not able right now to...

While all/most forms of EDS include some amount of hypermobility and risk of subluxation, EDS is a lot more involved than this. It’s important to know the risks because they should check the heart, use special kinds of sutures if there’s any surgery, monitor more closely for osteoporosis, etc...

I wonder how more of us could get access to a specialist diagnostician. If that many of us have other diagnoses, we should have some way to be getting diagnosed. It might reduce morbidity.

I would tend to blame the government for both the lack of government funding and the lack of private funding because of the government-sponsored message that CBT/GET treats ME, that it’s trivial fatigue, no answers after a robust search, etc. It makes research look unnecessary and the disease...

I believe it also took some kind of congressional action, but I haven’t yet found the documentation for this.

Kaiser is one of the earliest HMO’s (health maintenance or managed care organizations; I don’t perceive a difference between the terms) and influential. I guess because of good ability to manage money. They manage to get good Medicare reviews, but that’s a very scripted process. They are very...

That people are having symptoms is not controversial nor unknown. https://www.lung.ca/lung-health/air-quality/indoor-air-quality/scents https://www.ncbi.nlm.nih.gov/pmc/?term=asthma+odors https://www.ncbi.nlm.nih.gov/pubmed/26788835...