Updated: Jan 21
I am borrowing theory from the Sociologist Robert K Merton titled "The Theory of Unintended Consequences." It applies perfectly to the CDC and their decision to diagnose Morgellon's patients with Delusional Parasitosis based on inadequate research by Kaiser Permanent Research Center. Robert Merton theorized all intended actions could have unintended consequences. He broke them into the 3 following categories: Positive, Unexpected Drawbacks or Perverse Results. When the CDC determined Morgellons Disease(MD) was a Psychiatric problem - the unintended Consequences fall under the definition of a Perverse Result. The only thing they accomplished was dismissing the disease and ignoring it for another decade. Within that time period the disease spread, MD patients haven't been able to get appropriate medical care and their lives have been negatively impacted by being labeled "Delusional."
Diagnosing MD as a psychological disorder has given a false sense of safety to the public - especially the medical community. Doctors and friends/family members of MD patients are not protecting themselves from potential infection. The CDC isn't doing any research because they consider MD a delusion from self-diagnosis on the internet. This explanation is flawed because it doesn't address why so many people are surfing the internet for a strange new skin affliction in recent years. They can't self diagnose if they aren't searching about skin disorders. Google Maps now tracks the spread of MD and the locations of purported cases. According to this map, MD is now worldwide! The CDC is at the top of the pyramid in the US health care infrastructure. Doctors believe the research results published by them as they should. But when they get it wrong, everyone is at risk including the Doctors. As I discussed in another post how a pregnant Dermatologist took her gloves off and shook my hand. She was trying to comfort me with no concern for herself. Crazy, right?! Recently, independent research has linked borrelia bacteria that is associated with Lyme Disease to be a part of the infectious process of Morgellons Disease. The CDC should be held accountable for dismissing all the suffering patients of MD and the resulting spread of the disease.
I have known for quite some time I probably had MD. However, because of the stigma surrounding the disease, I never admitted it to anyone. I didn't want to be associated with all the "theories" on the internet about the cause of Morgellons. They are pretty crazy from Extraterrestrial attacks to Germ Warfare. If I can't tell my Doctor what is really wrong with me, how do I get treatment? Not to mention, when your Doctor figures out for themselves that your symptoms correlate to MD, they are told by the CDC that you are delusional. This is where the CDC's diagnosis becomes Perverse. Once the Doctors believe you are delusional, your quality of care greatly decreases. I had large black chunks coming out of my foot and my entire ankle was turning black. When I went to the Doctor they didn't want to see my pictures. My Doctor politely told me this has been going on for 10 years and there is medicine (anti-psychotics) to help you. Then he nicely took a washcloth and washed my ankle and told me it was just dirt. I was wearing flip flops and did have a little dust on my foot. HOWEVER, my ankle was turning gray/black - and only on one foot. I guess this means I only wash 1 foot and not the other!! I have complained about hearing loss and sores in my ears - yet I haven't been referred to an Ear, Nose, Throat Specialist either. So the CDC "Perverted" my entire health care for the last decade!
The Google Map shows thousands of cases worldwide but this doesn't come close to reflecting the real numbers of MD patients. How many more patients are there that refuse to sign any registry or report it to their Doctors? CDC thought Morgellons was mass hysteria via the internet - well I think it worked in the opposite direction. Any professional person with a career, any parent in a child custody battle, or anyone for that matter that doesn't want to be diagnosed as delusional, would NEVER admit to having MD. Not only is it all over the internet, but there are also books on the subject and even news documentaries. This is an extremely controversial disease that many patients would never seek treatment until their symptoms absolutely required medical attention. There is no help so what is the point?!
The most devastating part is the extreme hopelessness anyone contracting MD must endure. The general consensus by the medical community is that MD is a delusion and we are imagining parasites living in our skin. Patients who do not have psychological disorders may end up with them from the stress of trying to hide and handle this disease in secret. Once they become too sick to work, there is no public assistance and they must turn to family and friends for help. It is impossible to win a disability case with an imaginary disease! The stress on interpersonal relationships is huge. Family members don't want to hear about it anymore and become very frustrated. Often times the MD patient self isolates in fear of infecting another person. They don't date or socially interact because of their embarrassing skin condition. The nasty MD lesions along with seclusion is often interpreted as "drug abuse." I have been accused and turned into Child Protective Services for endangering my children and manufacturing Meth!! The case was dismissed as erroneous but it really bothered me how easily the rumor was believed. I have read other similar stories like my own. Just think about it: Skin sores + Missing Work a lot + scratching imaginary bugs = Meth Addiction! All this stress can lead to depression, suicide, broken relationships, and even substance abuse. No one should have to live like this with never-ending hopelessness: THANK YOU, CDC!
If you look at the CDC's website, their logo is "24/7: Saving Lives, Protecting People." I believe their intent was good when they ordered the research in 2008. However, when Kaiser couldn't produce any results, they should have ordered additional research from another company. The Theory of Unintended Consequences is just that: UNINTENDED. They need to acknowledge they were misguided and start researching and develop some treatment plans. They also need to figure out how many people are already infected and what other species may be involved. I am pretty sure this is far more widespread than anyone can even imagine. The consequences of diagnosing MD as Delusional Parasitosis alienated a lot of patients. Also, Doctors don't believe in Morgellons so how many other people are misdiagnosed with other skin diseases or allergies? There are thousands of individuals claiming to have the "fiber" disease online. Many more individuals are refusing the diagnosis out of fear of public humiliation and probably thousands more who are misdiagnosed.
Please help make people aware and forward my blog to all your friends and family. If the CDC isn't going to protect the public then we need to take it upon ourselves to educate everyone. I can't help but think public distancing and self-isolation due to COVID 19 will also slow the spread of Morgellons Disease. With the threat of more dangerous viruses in the future, we need to all be more diligent in washing our hands and preventing the spread of germs. I am begging everyone to be kind to me as I am not a professional writer. I have a math brain which means I am good at numbers and not so good at writing! However, I am so angry at the "Unintended Consequences" of the CDC's actions, I am willing to take a little heat and embarrassment for my grammatical errors! Please join me in this fight. If we stand together - they will have to listen. There are too many of us to ignore any longer!