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http://www.asbmb.org/asbmbtoday/201803/Feature/ME/
Click on the link for the full article.
By Lily Williams
Lizzie Mooney is 12 years old. She is tall for her age with long blonde hair. She likes to wear Chicago Bears pajama bottoms and a hoodie. She’s funny, making up games and teasing her siblings.
Lizzie excels in reading and math. She spends time crafting and watches science shows with her parents at night. But it’s hard for her to make it downstairs to the TV room. She can’t go to school. In fact, she might only leave her house once a week.
For the past three years, Lizzie has been sick.
The government estimates that as many as 1 million to 2.5 millionAmericans have the same disease as Lizzie: myalgic encephalomyelitis, or ME. Despite these numbers, you probably haven’t heard of ME. What you might have heard of instead is chronic fatigue syndrome, or CFS. This euphemism for ME conjures an image of someone who just doesn’t feel like getting out of bed.
Lizzie Mooney has myalgic encephalomyelitis. Her health has decreased over the past three years to the
point where she can barely leave her house or even eat meals at the table with her family.LILY WILLIAMS
For many ME patients, getting out of bed would be the highlight of their week or month. About 25 percent of patients are housebound, in rooms with the blinds drawn and noises muffled. Patients’ bodies are sensitive to all kinds of stimulation; they suffer from gastrointestinal problems, inability to sleep, chronic pain and the disease’s trademarks: cognitive dysfunction and post-exertional malaise, or PEM. Many patients describe PEM as a crash. Something as simple as a short walk can severely worsen a patient’s symptoms, leaving them bedridden, unable to recover, for weeks or months. There’s no telling how long the crash will last. Imagine having to decide between taking a shower and making yourself lunch. It could be your only activity for the week. Patients with ME have reported lower quality-of-life scores than patients with terminal cancer and heart disease.
Yet federal funding for ME research remains at a fraction of what is spent on each of these. In fact, research funding for ME remains less than what the government spends on headaches or hay fever. Multiple sclerosis funding is 12 times the funding for ME, but an estimated 400,000 patients in the U.S. have MS, fewer than half the number who have ME even according to the most conservative estimate.
When Lizzie got sick, her mother, Amy Mooney, took her to their primary care physician, who diagnosed Lizzie with a mononucleosislike illness.
Click on the link for the full article.
By Lily Williams
Lizzie Mooney is 12 years old. She is tall for her age with long blonde hair. She likes to wear Chicago Bears pajama bottoms and a hoodie. She’s funny, making up games and teasing her siblings.
Lizzie excels in reading and math. She spends time crafting and watches science shows with her parents at night. But it’s hard for her to make it downstairs to the TV room. She can’t go to school. In fact, she might only leave her house once a week.
For the past three years, Lizzie has been sick.
The government estimates that as many as 1 million to 2.5 millionAmericans have the same disease as Lizzie: myalgic encephalomyelitis, or ME. Despite these numbers, you probably haven’t heard of ME. What you might have heard of instead is chronic fatigue syndrome, or CFS. This euphemism for ME conjures an image of someone who just doesn’t feel like getting out of bed.
point where she can barely leave her house or even eat meals at the table with her family.LILY WILLIAMS
For many ME patients, getting out of bed would be the highlight of their week or month. About 25 percent of patients are housebound, in rooms with the blinds drawn and noises muffled. Patients’ bodies are sensitive to all kinds of stimulation; they suffer from gastrointestinal problems, inability to sleep, chronic pain and the disease’s trademarks: cognitive dysfunction and post-exertional malaise, or PEM. Many patients describe PEM as a crash. Something as simple as a short walk can severely worsen a patient’s symptoms, leaving them bedridden, unable to recover, for weeks or months. There’s no telling how long the crash will last. Imagine having to decide between taking a shower and making yourself lunch. It could be your only activity for the week. Patients with ME have reported lower quality-of-life scores than patients with terminal cancer and heart disease.
Yet federal funding for ME research remains at a fraction of what is spent on each of these. In fact, research funding for ME remains less than what the government spends on headaches or hay fever. Multiple sclerosis funding is 12 times the funding for ME, but an estimated 400,000 patients in the U.S. have MS, fewer than half the number who have ME even according to the most conservative estimate.
When Lizzie got sick, her mother, Amy Mooney, took her to their primary care physician, who diagnosed Lizzie with a mononucleosislike illness.