Lessons from The AIDS Movement of the 1980’s for Morgellons patients. There’s a broad difference between being a troll and speaking to facts that people often don’t want to discuss. The true craft of debate is not taking your opinions personally so that they become impeding principles. You can lose many friends along the way by failing to realize that your opinions, though likely supported by facts, might not be applicable for every situation. Being able to understand why someone is especially dedicated to an ideal is the first step towards rationalizing with them about your point of view.
Pride and lack of perception regarding how individuals in social circles feel about their own opinions can result in disregard at best and hurt feelings at worst. What kind of an ego for a political position do you have to maintain to alienate friends made over 40 years? Is it worth it when the principles no longer matter and circumstances evolve?
Dealing with Morgellons there are critics on both sides of the fence. Those who refuse to acknowledge the science about what Morgellons is (An Association Between Morgellons Disease and Lyme Disease? (medscape.com)) because that would mean having to face the responsibility of being previously wrong about the skin conditions existence as well as the common, stigmatized, and prevalent bacterial infection associated with it, and those who refuse to acknowledge the science about what Morgellons is because that would mean having to evolve their perspective beyond subjective experiences. The latter want Morgellons to legitimize their pet cult topic, like chemtrails, GMO, transhumanism, vaccines as a causative factor, aliens, and many other sensational ideas.
The publication of the 2012, inconclusive, CDC study that “DISCLAIMER: The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention, Kaiser Permanente or the Armed Forces Institute of Pathology.” (Clinical, Epidemiologic, Histopathologic and Molecular Features of an Unexplained Dermopathy (plos.org)) has resulted in a lapse in treatment for patients with this rare skin condition and associated bacterial infection. Neither one of those two groups will open up to the science until you begin to understand why they feel as strongly as they do about their opinions regarding MD. You can achieve “conversion” on both sides of the fence by tempering zeal and humoring perspectives. Most importantly you can achieve respect – by showing it.
When Diplomacy Fails
Regarding the first group, for those who humor and respect fail to achieve recognition – it’s time to #ActUp about Lyme disease in your community like activists of the AIDS Movement accomplished in the 1980’s. The CDC reports almost 500,000 Americans each year are diagnosed and treated for Lyme disease (Lyme disease damages people’s mental health and increases suicidal feelings, scientists pledge (diabetes.co.uk)) with significant gaps between states. You can probably figure out for yourself, for example, that it doesn’t make much sense for there to be many times more cases of Lyme disease in some states but not others (Use of Commercial Claims Data for Evaluating Trends in Lyme Disease Diagnoses, United States, 2010–2018 – Volume 27, Number 2—February 2021 – Emerging Infectious Diseases journal – CDC). What does make sense is that diagnosis is being suppressed as physicians are directed to consider Lyme endemic only to the NE United States.
What we’ve learned about people’s objections to Lyme disease is that it most often results from a complete lack of understanding about Borreliosis, often they are not competent to discuss the topic. Unfortunately, being blocked over the ideas of chronic Lyme disease, Lyme disease resulting in #MentalIllness, and Morgellons being a real condition associated with Lyme disease is not an uncommon occurrence. Many states stigmatize the topic of Lyme disease by way of not mandating updated training and adhering to outdated information. Not talking about it, being silent about it – these are evidence of a high control environment and not necessarily a free, science based society.
How activists of the AIDS movement addressed this stigma was with strategic, well-planned, and efficiently executed public displays of civil disobedience. Several members of the AIDS Coalition to Unleash Power assembled protests against Wall Street, the FDA, the CDC, local and regional governments, and even Congress and the President. These efforts, backed by science-based factual information, resulted in better access to care, less-expensive medications, and probably most importantly – more expedient diagnosis and access to responsible treatment.
You cannot harbor an infectious process that is demonstrated to alter behavior without being an impediment to your own success, and you can see that infectious process working in half a million new Americans each year. The arguments that you’re fixated on Lyme, that you’re trying to apply your own disease to everyone, and that it would heal up if you stopped focusing on it are all manipulative tactics employed by the community to cover for a medical system which refuses to implement an infrastructure to adequately elicit and treat these hidden infections in a timely manner.
By learning the lessons achieved through the history of the AIDS movement, and paying attention to local efforts like TAC, it’s possible to enact real change through effective community demonstration. There is a purpose and a higher goal towards raising awareness and lobbying for change, even if you’re labeled as a troll by communities who aren’t ready to receive the message about an objective concern that is increasingly likely to indiscriminately affect any one of their members.