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Kristi Woods is a resident of Augusta. She holds a bachelors of science degree in nursing from the University of Maine and worked as a registered nurse for nine years. She is currently disabled related to her diagnosis.
It has been a year since my column “Education, awareness can help the millions suffering from chronic fatigue,” was published. Within that year, there have been numerous federal cuts to funding for myalgic encephalomyelitis/chronic fatigue syndrome and long COVID related research and the U.S. Department of Health and Humans Services office on long COVID has closed.
However, in Maine, there is a big move being made towards change. The Maine Legislature is reviewing LD 1688: An Act to Encourage Continuing Education Relating to Certain Infection-Associated Chronic Conditions for Physicians and Nurses. This bill does not cost any government funding but will bring a spotlight to long neglected conditions such as postural orthostatic tachycardia syndrome (POTS), myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and chronic Lyme in addition to the more recent phenomenon of long COVID. For those who are suffering from these diseases, getting diagnosed in this state is extremely challenging. The Maine long COVID clinic closed in 2023 and there are very few providers that have even heard of these diseases.
The story to diagnosis is similar for most with these diseases: They fell sick and didn’t get better and went to multiple doctors only to be met with skepticism and their suffering downplayed. Often these patients leave their physicians with no diagnosis or treatments to improve their suffering. Even worse, often they are given harmful treatments such as graded exercise therapy (GET) or inaccurately told it’s a psychiatric condition.
My story is mostly the same. I began experiencing symptoms of fatigue in nursing school, and was misdiagnosed first with depression, then with narcolepsy. I continued to get worse over six years with more symptoms. I worked with over 40 different health care providers spanning seven states to determine the causes of my ailments.
There were many times that I was treated poorly by providers. I was able to get more answers over time, but there was still the lingering question of “why is this happening in the first place? How are these diagnoses connected?”
It wasn’t until media coverage of long COVID symptoms that I was able to find this missing piece. After further browsing of long COVID, I learned of its connection to ME/CFS, from which I suffered all the signs. I searched for a provider knowledgeable about ME/CFS and advocated for a referral to the closest knowledgeable provider I could find which was in Boston. However, with this revelation came the sobering reality that there were no FDA treatments, or cures for this condition.
Even still, knowing the correct diagnosis was important. It allowed me to use appropriate non-medication related strategies to prevent my symptoms from getting worse-such as pacing my activity levels. Learning material from ME/CFS experts helped me to discuss with my providers existing medications available for other conditions that could improve some symptoms.
There is a privilege in the ability to get diagnosed correctly in the current health care system. Being an educated person, who understands the healthcare system, had financial means and health insurance that allowed out-of-state referrals, and a primary care provider that believed me and put in the referrals I asked for were all factors that led to being diagnosed correctly. Even so, it took 12 years to figure it out. Had I not been as fortunate, I likely would never have been diagnosed.
Most healthy people would say that being believed by your doctor and treated appropriately is supposed to be the standard of care. It should, and can, be the standard of care. This bill can bring awareness of infection-associated chronic conditions, leading to education. This may allow patients to be diagnosed faster and to face less skepticism and harsh treatments. Maine healthcare providers could improve the care they provide to chronically ill patients, and the support of this bill will help the thousands of Maine people live the best quality of life they can until research catches up with treating the underlying causes.
