Imagine feeling so tired that you’re unable to be recharged no matter how much you sleep. Not only this, but you experience other symptoms like trouble comprehending, poor memory, dizziness, weakness, shakiness, body aches, nausea and more. After feeling horrible for months on end you go to multiple doctors and are told that all your tests are normal. Even worse, many doctors not only don’t know what is causing your symptoms, some believe that it is “all in your head.”

This is the experience of the 3.3 million people who are suffering with chronic fatigue syndrome. Chronic fatigue syndrome, known as myalgic encephalomyelitis or ME/CFS, is a debilitating syndrome that causes the symptoms listed above and more. Exertion as simple as daily chores or showering can exacerbate these symptoms immediately or delayed by 12-48 hours and last for days, weeks, or longer.

The name chronic fatigue undermines the suffering inflicted, making it sound as though it’s just being “tired all the time.” The most severe cases leave patients bedbound, tube fed and unable to tolerate light, sounds and touch, with up to 25% of patients being house or bedbound. Those with “mild” impairment have to decrease their normal activities by 50% to improve their symptoms. Research finds that ME/CFS is often triggered after a viral infection and it is estimated that about half of long COVID cases meet the criteria for ME/CFS, adding millions of people to the number of those suffering in a short period of time.

Although ME/CFS is universally poorly understood, Maine has its own unique challenges. Many people in Maine with ME/CFS symptoms do not have the resources to get a diagnosis at any stage of severity with long wait times, limited knowledge of ME/CFS by our health care providers and MaineCare’s hurdles to out of state referrals to a provider who can diagnose it. Those that are housebound or bed bound may be unable to access proper care with the lack of public transport and the geographical distance they may have to travel to reach a provider’s office.

I have been suffering with symptoms of ME/CFS for 14 years — since I was 20 years old — and have seen more than 40 doctors for the 30 plus symptoms that I experience daily. However, I’m fortunate as previously I was able to work, had insurance that allowed for multiple out of state referrals and better coverage of tests and knew the health care system as a registered nurse. Despite this fact, I didn’t get diagnosed until early 2022 in Boston. Since contracting COVID-19 in late 2022, I have degraded to the point of being homebound, unable to work, drive, or advocate for myself adequately. Even writing this submission was difficult — a previously simple task now required weeks and significant help from family to complete.

The first thing to be done is to reduce harm through prevention and education. Health care facilities are seeing immunocompromised patients and have a responsibility to mask up as the spread of COVID-19 and other infectious illnesses can lead to degradation of functioning for existing cases and increasing the risk of creating new long COVID cases.

Without FDA-approved treatments, diagnosis is crucial to help teach people to rest and pace to manage symptoms versus pushing through, as the hallmark symptom of ME/CFS is post-exertional malaise. MEAction offers free resources on their website, including pacing guidelines and virtual support groups for caregivers. MEAction Northern New England hosts monthly virtual chapter meetings and options to get involved in ME/CFS advocacy within your individual energy envelope and as an organization they host a variety of events such as May 3-12, “Millions Missing,” to promote awareness of ME/CFS. Bateman Horne Center has resources for providers, caregivers and patients about ME/CFS symptom management, with free virtual monthly lunch and learn opportunities and bi-monthly support groups for patients.

Our fellow Mainers with ME/CFS deserve better care and we can do more to help improve their quality of life. In my time as a nurse, I have found that the healthcare system in Maine is comprised of  health care providers that work in the field because they want to help patients. Learning about this diagnosis will help to better serve this under-recognized population.

If you are a health care provider reading this, please consider the free CME “Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” offered by the Mayo Clinic and consider reviewing the resources mentioned above and sharing them with your patients.

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