The Shifting Ethics of Mite Fighting

People with parasitic mites all need help in some form or other, and it is difficult to get help without putting others at risk. You escape to a hotel for a night: how do you know your sheets will be thoroughly washed? You throw something out: how do you know no one else will scavenge and use it? You sell your house: even if you disclose, how do you know how the buyers will be affected?

I am convinced we are living at the end of the dark age of mite infestation. Already there are researchers using direct DNA detection on non-parasitic face mites like Demodex folluculorum, who have found ten times the incidence previously believed. Other entomologists are starting to write about the medical impact of parasitic mites like Dermanyssus gallinae. It’s only a matter of time until the two research streams come together and we get to a parasitic mite DNA detection kit for use on humans.

At the same time, other biologists are using the DNA fish leave behind as they swim in rivers (called eDNA, for environmental DNA) to tell which species have swum by. It turns out every organism leaves trace nucleic acids in the environment as it passes. Once that technique is applied to locating parasitic mites in the home, the era of relying on ineffective glue traps will be over.

These developments will be wonderful in several ways. They will end the scourge of misdiagnosis with delusional parasitosis, which has been fueled by lack of real data. Accurate medical and environmental measurements of parasitic mite infestations will enable people with mites to advocate for more research funding, and to take better advantage of the limited treatments that currently exist.

But on the flip side, it may be tough to persuade others to help when the risks are well defined. The therapist who thought you were imagining things may suddenly start worrying you will infest the upholstery in her office. The contractor who comes to haul away your carpeting may turn down the work.

It is incredibly frustrating not to be believed. Real data will usher in a new era. But in the first stages, when the reality of parasitic mites is better understood and before there are better treatments, people with mites will not be able to hide behind the ignorance of others. It will be a far better problem than the ones they face today.

A Call to Self-Advocacy for People with Parasitic Mites

I hear from more and more people about their struggles with parasitic mites. So many lost homes, ruined marriages, derailed careers, decimated savings accounts. So many children suffering, so many pets being put down. Hopefully the reason I hear from so many is that more folks are finding my book, this site, and my Facebook page — and NOT that more people are contracting mite infestations. But with the climate warming (which favors arthropods), and with the continued popularity of backyard poultry, it is possible the number of affected people is increasing. As long as the problem officially does not exist and is not tracked, it will be difficult to know for sure.

What is clear is that there are enough of us, with enough smarts and enough indignation, to begin to breach the official denial that has prevented people with mites from getting help for so many years. Networks are forming. There are petitions signed by thousands, there are groups sharing ideas on Facebook. In Europe, Dr. Olivier Sparagano has begun a professional organization to fight the red poultry mite, that will surely benefit humans as well as agricultural animals. Dr. David George has published his groundbreaking article in the journal Parasites & Vectors on the need to consider parasitic mites as a human and veterinary diagnosis. Nat Willingham, who runs a group on Facebook, is working to form a patient organization.

If you are a person with mites, and if you have any energy left after working the grueling protocols you’ll find on this site and elsewhere, here are some things you can do:

Join Nat Willingham’s Skin Mites Support Group on Facebook and volunteer to help with her new organization and its website

Get involved with your local Biohacking or Citizen Science group, and learn to identify your own parasitic mite species

Start educating the people around you about how to avoid a parasitic mite infestation, because an ounce of prevention really is worth a pound of cure. And it can be as simple as suggesting your friends refuse to bring a bird’s nest or feathers info their homes

When someone disputes the reality of your infestation, be prepared. Refer them to David George’s article, or to the “Frequently Asked Questions for Friends and Family” section of The Year of the Mite. It is time we all came out of the closet.

Meanwhile look for a questionnaire soon on this site. Gathering information systematically about the shared natural history of infestation will help us approach NIH and the CDC with a scientifically based appeal for assistance.

When I think about people who had to deal with parasitic mites before the internet, with no information and no support, it fills me with sorrow. It is hard enough to overcome this scourge with the support and information we have now. But we have come a long way from those isolated days. And together we will overcome the institutional denial that adds to the health issues of too many people with parasitic mites.

With all best wishes to you and yours,
Jane