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Tom Kindlon

🧵
"Far From Rare: A Common Disease Hidden in Plain Sight: Why ME/CFS Needs to be Recognized Now"

batemanhornecenter.org/a-commo

Comment: While there is possibly nothing new here for many of us, I think it does summarise a lot of the important issues in the field

@mecfs

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Far From Rare: A Common Disease Hidden in Plain SightA busy city street filled with vibrant, detailed figures engaged in daily activities, while a few individuals appear semi-transparent or fading into the background. These ghostly figures symbolize the invisibility of people with ME/CFS Why ME/CFS Needs to be Recognized Now February often brings conversations about rare diseases—conditions affecting fewer than 200,000 people in the U.S. ME/CFS doesn’t fit that definition. Yet, we chose to highlight it during Rare Disease Month not because it is rare, but because it remains rarely acknowledged, underserved, and underfunded in both the medical and research communities. With an estimated 5 to 9 million people affected in the U.S. alone—and many more meeting diagnostic criteria following COVID-19—ME/CFS is far from uncommon. The real challenge isn’t how many people have it, but how often it is misunderstood, overlooked, and left out of mainstream medical care. Image of lots of people standing in a city street
Mar 08, 2025, 06:38 PM·Public·Web
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Tom Kindlon

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“Despite its widespread impact, up to 90% of people with ME/CFS remain undiagnosed, often after years of searching for answers.”


@mecfs

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Tom Kindlon

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“Many [with ME/CFS] experience medical gaslighting, misdiagnoses, and treatments that fail to account for the disease’s hallmark symptom: post-exertional malaise (PEM)—where even minor exertion can lead to debilitating symptoms and functional decline.”


@mecfs

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Tom Kindlon

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“The consequences are staggering:  (see image)”

@mecfs

The consequences are staggering: One in four people with ME/CFS is bed- or housebound, unable to fully participate in daily life. The economic burden reaches up to $51 billion annually in healthcare costs and lost productivity. Despite its prevalence, ME/CFS receives only a fraction of the research funding compared to diseases with similar burdens.
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Tom Kindlon

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“For decades, patients with ME/CFS have faced …”


@mecfs

Changing the Tide For decades, patients with ME/CFS have faced: Gaps in medical education, leading to delayed diagnoses and outdated treatment recommendations. Minimal research funding, limiting advancements in diagnostics and clinical trials. Persistent stigma, with ME/CFS historically mischaracterized as psychological rather than a complex, multisystem disease.
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Tom Kindlon

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“The Path Forward: Turning Awareness Into Action …”

@mecfs

The Path Forward: Turning Awareness Into Action If Rare Disease Month reminded us of anything, it’s that neglect isn’t limited to rare conditions. Millions of people with ME/CFS have spent decades being overlooked. The road ahead must focus on: Medical education and training – Healthcare providers need up-to-date knowledge on ME/CFS and post-infectious conditions to improve diagnosis and care management. Research funding that matches the need – Investment must reflect the scale of the crisis, driving better treatments and, ultimately, a cure. Compassionate, evidence-based care – Patients deserve to be heard, believed, and treated with the same dignity and expertise as those with other complex conditions.
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Tom Kindlon

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From “Far From Rare: A Common Disease Hidden in Plain Sight” by the Bateman Horne Center


@mecfs

Be a part of the change! 🔹 Share this message. 🔹 Educate your community. 🔹 Support organizations working to drive progress. Every person deserves access to knowledgeable care, meaningful research, and a medical system that sees and supports them.
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