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

Do Yourself a Favor: Search "Parasitic Mites PCR."
Biohacking Parasitic Mites: Self Diagnosis by Open Source PCR

2 thoughts on “A Call to Self-Advocacy for People with Parasitic Mites

  1. I need help.. I live alone, never an issue and the past few months everyone says that it’s not real and a strained relationship already with my sisters – they now say I need to be put in an asylum, not that they would agree to come and feel it for themselves …. how do I prove it, more important how do I get rid of them? I’ve lost all my furniture more money than I can afford to spend on ways they say to erraticate and the only time I somewhat sleep is in motel… need help fast !

    • Hello Colleen, very sorry to hear of your infestation issue. This is a real problem for many people: Not just the arthropods themselves, but also the lack of belief by friends, family, and professionals. The difficulties with enlisting support are complicated because, in the case of mites, it is very difficult to capture and identify them with the tools currently in place. This is made more difficult by the fact that mites tend to choose a favorite host in a flock (or family), so the experience of different members of a family may be very different – even if they are living in the same home.
      So the reality for now is that we must rely on ourselves, and to an extent, on other people who have been through this huge challenge and come out the other side. The fact that you are reaching out is good, and there are good resources for your battle. You can find protocols on this website, or in the back of my book The Year of the Mite, which also includes an FAQ for family and friends. You can read this article by a group of entomologists, about medical issues with mites, and share with your family and with health care professionals: https://parasitesandvectors.biomedcentral.com/articles/10.1186/s13071-015-0768-7
      You can link up with the Skin Mites Support Group on Facebook. People who overcome mites spend a lot of time, energy, and resources doing it, and must just keep going and keep their hope alive. It can be done, and I wish you all the luck in the world. Please let me know how it goes for you.
      All the best,
      Jane

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