What are they afraid of?

Thu, 07/11/2019 - 8:45am

A few weeks ago, the reputable New York Times published an article from a woman who stated that her son had recently been diagnosed with Lyme disease, how it was easily treated and she just couldn’t understand what all the hype was about. She further stated that she had done some research and referenced her “expert” as Dr. Eugene Shapiro, an Infectious Disease doctor who has taken a long standing, staunch position against the existence of chronic Lyme, stating it is hard to get but very easily treated.

The entire Lyme community from around the state, around the country and around the world was in an uproar. Why? Because for years now, old and science has been at odds with one another, causing medical providers to pick a side and choose how they want to treat their patients suffering from tick-borne disease. That’s right, there are sides which means there are options for a patient. I’ve spoken about and have written repeatedly that who you see will determine the level of care you receive, which in turn, dictates the recovery that you will have.

In a word, the Lyme community felt that this woman was a plant. She was quickly discredited by many, her article dissected with facts and the host newspaper, a long-standing supporter of the truth about Lyme Disease, reprimanded for even publishing her article. Her words were so misguided that even a Maine retired Infectious Disease medical provider and Lincoln County summer resident wrote a strong rebuttal in her Forbes column.

Here is something to ponder. I’ve reached out to many medical providers, around the state of Maine, to have a conversation about tick-borne disease and interestingly enough, those who continue to follow old, outdated guidelines and protocols do not wish to speak with me. When patients contact me and tell me the troubling interactions they are having, I reach out to the providers but to not avail. And yet those who are following newer science, with better diagnostic tools and a variety of treatment options are not only willing to talk to me but will to openly share how they diagnose and treat patients so that, I in turn, am better armed with information to direct patients their way.

So what is the big secret and why on earth would the Infectious Disease Society of America use this woman as a plant to blatantly speak against the growing grain and assault patients and providers worldwide? Yes, I use the word assault because this woman was one more tool in the arsenal that the IDSA uses to attack patients and providers. And how do I know this? Because those patients, providers, researchers and advocates who reached out to this woman, to gather more information and to try to get some clarity from her, were subsequently verbally attacked and blocked on social media outlets.

Interesting. What is the IDSA so afraid of that they have to plant people to make statements to rile up the public? Even other infectious disease providers have spoken against what this woman wrote. We do know the IDSA is publishing a newer set of guidelines and, though they denied needing any updates for well over 15 years, it will be interesting to see what they produce. The Federal Centers for Disease Control (CDC) have acknowledged the need for better testing and have participated in national Lyme Disease conferences and medical trainings. With the growing number of new tick-borne disease cases and new strains being discovered, there is not room for animosity. Better testing will produce better, faster more reliable diagnosis which in turn, will increase better and faster recovery for patients. Senator Collins has taken a stand in the need for more research, education and patient resources. States everywhere are passing legislation that support this same need. Researchers and laboratories across the United States are steadfast in their commitment to better human testing and disease control. So, why publicly attack a growing movement that has gotten substantial attention, funding and much needed change?

When the federal DHHS Tick-borne Disease Working Group submitted their report to Congress last summer highlighting areas of change and gaps, the IDSA came out swinging with a rebuttal letter. Don’t they realize that they are on the wrong side of the fight? When even the federal CDC has taken up the plight for change where tick-borne disease is concerned for patients, why are we still fighting an institution that adheres to old outdated information and who blatantly disregards new science? What are they so afraid of?

We won’t stop, we won’t back down and we won’t give up. This only gives us fuel. Our lives matter and those we’ve lost needlessly to tick-borne disease, their lives mattered. We honor the fallen and those who continue to suffer by creating change and making the pathway to health and wellness accessible to all.

Paula is the president of the MLDSE, the co-chair of the Access to Care Services and Patient Support subcommittee of the federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at paula@mldse.org or visit www.mldse.org