My life, and my children’s lives, have been completely derailed by Chronic Lyme disease. Hopefully, the studies surrounding “Long Covid” will help those of us with similar stories of endless suffering. I’m sorry it’s taken a pandemic to shed light on ALL of our stories of chronic disease, but if this harkens a new era of research for us, I’m grateful. Hopefully now, The NY Times will defer from publishing articles doubting the validity of Chronic Lyme disease, as it has done in the past. Those of us who have been sidelined from life’s pleasures don’t need any more negativity cast our way. I wonder why Covid Long Haulers have been supported, while Chronic Lyme sufferers have been shunned? What does it reveal about our medical establishments, from schools, to hospitals, to private practices and government institutions? It tells us that mysteries scare us, perhaps because we have become accustomed to quick fixes. Like the changes required to truly tackle global warming, a complete change of ideology is needed. If this is the moment of greatest darkness that leads to a brighter day in medicine and the industries around it, I welcome it. Let’s embrace medical mystery with the awe and curiosity it deserves, and challenge our researchers to strive ever harder. Let’s encourage patent holders to keep their greed at bay. Let’s unite, as our new President has urged: unite for long-term healing, in every sense of the word.
This letter is in response to a recent article from The New York Times that draws striking similarities between long COVID and other persistent diseases, particularly ME/CFS and chronic Lyme. Isabel’s powerful letter examines the history of denial and attacks from mainstream media on the Lyme community, and their sudden yet potentially beneficial pivot towards acceptance. You can find the entire letter here on Isabel’s Medium account.