Opinion: Raising awareness of Myalgic Encephalomyelitis

Published: 5/1/2022 8:01:38 AM
Modified: 5/1/2022 8:00:05 AM

Leah Stagnone of Litchfield is a lifetime New Hampshire resident. She worked as a disability justice community organizer at ABLE NH for two and a half years and is a member of New Hampshire's State Council for Youth with Chronic Conditions. Learn more about ME/CFS at meaction.net or connect with ME/CFS advocates in NH at mecfs.nh@gmail.com.

Nearly six years ago, I was a 20-year-old student on summer break from Saint Anselm College, enjoying an adventurous season of New England hikes and road races. Then, I contracted an infection that irreversibly altered the trajectory of my life.

Rather than recovering as expected, I developed ongoing pain, exhaustion, fevers and neurological symptoms so debilitating that I had to withdraw from my fall semester. I only returned part-time in the spring, and simply making it to class often felt like a monumental physical feat. A couple of years into my strange sickness and many medical appointments later, I learned that I had developed an underrecognized and typically post-infectious chronic illness called Myalgic Encephalomyelitis. Now, more than ever, it is critical that people gain awareness of this disease. 

May is the international Awareness Month for Myalgic Encephalomyelitis (ME), formerly known as chronic fatigue syndrome (CFS), or ME/CFS. ME/CFS is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems and leaves 25% of those affected homebound or bedbound. As many as 75% cannot work, and ME/CFS costs our country’s economy $18-24 billion dollars annually in direct medical expenses and lost productivity.

This year, for the first time, a New Hampshire governor will formally proclaim May 12 to be ME/CFS Awareness Day in our state.

Pre-pandemic estimates of ME/CFS prevalence noted that as many as 10,400 New Hampshire residents have the disease, with nationwide numbers approaching 2.5 million. However, because it is most often triggered by infections, researchers project that 10-12% of all COVID-19 patients will develop ME/CFS, drastically increasing its prevalence worldwide.

A recent study suggests that approximately half of those experiencing post-acute sequelae of COVID-19 (PASC), commonly referred to as long COVID, meet the diagnostic criteria for ME/CFS. As a volunteer moderator in a long COVID support group, I indeed encounter individuals every day who have already received ME/CFS diagnoses following COVID-19 infection. They are quickly learning how little support is available to them from the institutions that are supposed to help.

Because of stigma, lack of attention by the government and medical community, and decades of abysmal federal research funding, people with ME/CFS struggle to access appropriate medical care and rarely recover due to a lack of treatments. ME/CFS has been in the bottom 5% of research funding at the National Institute of Health for decades, which is shockingly insufficient given that the average person with ME/CFS scores as more disabled on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and cancer. Medical schools rarely address ME/CFS meaningfully in their curricula, and there are fewer than two dozen nationally recognized ME/CFS specialists in the United States. 

People with ME/CFS, an estimated 75% of whom are women, commonly report experiencing dismissal and disbelief in medical settings and frequently spend years fighting for access to disability benefits while enduring serious financial hardship. Altogether, this lack of treatments, medical awareness, government support, and research progress tragically results in loss of hope and higher rates of suicide within the ME/CFS community. I’ve now met enough local families impacted by this disease to know that circumstances in New Hampshire are no exception.

During this ME/CFS Awareness Month of 2022, I ask my fellow Granite Staters, especially those who work in healthcare or government, to take the time to learn about ME/CFS and the needs of our patient community. While powerful national decision-makers continue to urge those of us who have been sick for years to wait patiently for support that never materializes, millions more are joining our ranks as a consequence of the pandemic.

If predictions hold true, with over 300,000 COVID-19 cases reported in our state since March 2020, tens of thousands more will have developed ME/CFS as a result of the virus in New Hampshire alone. Our systems are entirely unprepared to help them. 

People living with ME/CFS need increased government investment in biomedical research, comprehensive medical education and awareness campaigns, fast-track drug trials, and improvements to the Social Security Administration’s handling of ME/CFS disability applications. These goals must be incorporated into any future planning from government and health authorities as we move forward from the darkest days of the pandemic.

Ongoing neglect of this disease, especially in light of COVID-19, will have disastrous effects on our healthcare system and economy and will be devastating to the lives of millions worldwide, including many right here in our own communities. 

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