New York Tells Its Doctors To Watch Out For Chronic Fatigue Syndrome (ME/CFS)

Cort

Founder of Health Rising and Phoenix Rising
Staff member
The 85,000 doctors in the state of New York just got a wake up call regarding ME/CFS courtesy of the New York Department of Health.The monthly letter, which presented ME/CFS as a serious disease told the doctors in the state to learn about ME/CFS and consider diagnosing it when they came across patients with debilitating fatigue.

This is the first time I've heard of a state specifically calling ME/CFS to the attention of its doctors.

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[/fright]Reading the monthly letters the New York Department of Health sends out is considered mandatory for New York physicians. The Department logs the receipt and opening of each letter.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Next time a patient complains of long-standing and debilitating fatigue, I urge you to consider whether your patient has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a multi-system disease associated with neurological, immunological, and energy metabolism impairment.

The hallmark of ME/CFS is post-exertional malaise (PEM), a delayed exacerbation of symptoms and loss of stamina following even minimal mental or physical function. In addition to PEM, patients may complain of other symptoms including cognitive dysfunction, sleep abnormalities, autonomic manifestations and, at times, pain. Sleep is typically unrefreshing.

People with ME/CFS are unable to maintain their daily routines, one-quarter are housebound or bedbound and many are unable to work. In 2015, the National Academy of Medicine recommended new diagnostic criteria for ME/CFS that require a substantial impairment in activity that lasts six months or more and is accompanied by fatigue, post-exertional malaise, unrefreshing sleep, and either cognitive impairment or orthostatic intolerance. The patient may appear perfectly healthy and routine blood tests are typically normal.

ME/CFS is believed to impact approximately one million Americans, but the actual number may be much higher. The lack of biomarkers or a diagnostic test has made it difficult to diagnose ME/CFS. The disease is more common in women than men, and affects people of all racial and ethnic backgrounds. It can also impact children and adolescents. Experts believe ME/CFS is triggered by a viral infection, but the exact cause remains unknown. In the past, cognitive behavior therapy (CBT) and a graded exercise therapy (GET) were recommended as treatments.

However, these recommendations were based on studies that included patients with other fatiguing conditions. Because of the hallmark intolerance to exertion of ME/CFS, exercise may actually worsen the health of those living with this disease. Currently, there are no FDA approved treatments for ME/CFS.

Clearly more information is needed. The National Institutes of Health recently called for the creation of collaborative research centers to spur research into the cause and treatment of ME/CFS. The Centers for Disease Control and Prevention (CDC) published an article in the Morbidity and Mortality Weekly Report (MMWR) last December urging continued research into the science and epidemiology of ME/CFS.

The CDC has also begun a new initiative to develop educational materials on ME/CFS, with input from patients, medical professional organizations, medical educators, clinical experts and government agencies.

As physicians, I hope you will make ME/CFS a part of your differential diagnosis when evaluating patients with these symptoms. Few things are as detrimental to a patient’s health and well-being as not being taken seriously when presenting a problem to a health care provider. To learn more about ME/CFS from the patient perspective, consider watching this TED talk by Jennifer Brea, who shares her journey with the disease and its impact on her life.


Thank you for your attention to these matters and for your commitment to health care in New York.

Dr. Howard Zucker
Letter Sparks New Action: Dr. Zucker's letter has sparked a new action from ME Action - contacting your state or territorial health officials, showing them this letter and asking them to send a similar letter out. For a list of US state and territorial health officials, go to: http://www.astho.org/Directory/
 
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Seven

Well-Known Member
What a lost opportunity, Please include this next year as a sample of how congress can help in the next year congress briefing pls!
 

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