Health

Redefining Chronic Fatigue with Better Diagnosis, New Name

Published

10 years ago

February 11, 2015

Dr. Ellen Wright Clayton, left, chair of the Committee on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome speaks during an open meeting at the Institute of Medicine in Washington, Tuesday, Feb. 10, 2015. (AP Photo/Susan Walsh)

LAURAN NEERGAARD, AP Medical Writer

WASHINGTON (AP) — Doctors are getting a new way to diagnose chronic fatigue syndrome — and influential government advisers say it’s time to replace that hated name, too, to show it’s a real and debilitating disease.

The Institute of Medicine on Tuesday called on doctors to do a better job diagnosing an illness that may affect up to 2.5 million Americans, and it set five main symptoms as the criteria.

And the IOM’s choice of a new name — Systemic Exertion Intolerance Disease, or SEID — reflects a core symptom, that exertion can wipe patients out.

“This is not a figment of their imagination,” said Dr. Ellen Wright Clayton of Vanderbilt University’s Center for Biomedical Ethics and Society, who chaired the IOM panel. “These patients have real symptoms. They deserve real care.”

Here are some things to know about the disorder:

WHATEVER IT’S CALLED, WHAT IS THIS ILLNESS?

Its hallmark is persistent and profound fatigue where, on a bad day, a simple activity like grocery shopping can put someone to bed. It’s often accompanied by memory problems or other symptoms.

Laura Hillenbrand, author of best-sellers “Unbroken: A World War II Story of Survival, Resilience, and Redemption” and “Seabiscuit: An American Legend,” has put a public face to the confusing illness.

“Well, in the years in which I’ve been exhausted it’s been something where I’ve had to drag myself to my computer or to my telephone to do interviews,” she said on CBS’ “Face the Nation” last December.

While working on her book “Unbroken,” she said that over a two-year stretch, she was “unable to leave the house a single time, because I simply wasn’t strong enough to walk to the car to get out of the house.”

GETTING DIAGNOSED HAS LONG BEEN A PROBLEM

Between 836,000 and 2.5 million Americans suffer from the disorder, and most have no formal diagnosis, Tuesday’s report estimated.

Patients flooded the IOM with stories of years of misdiagnosis or even being dismissed by skeptical doctors as having a psychological problem instead. There’s no medical test for the disorder, leaving doctors to rule out other possible causes for the exhaustion. No one knows what causes it.

There’s no specific treatment, and the IOM found less than a third of medical schools teach about the disease.

WHAT’S NEW

The federal government asked the independent Institute of Medicine to investigate the state of chronic fatigue diagnosis. Tuesday, the panel issued new criteria that it said should enable any physician to tell which patients are affected.

Diagnosis requires three core symptoms: Fatigue and reduction in pre-illness levels of activity that last for more than six months, the post-exertion worsening, and sleep that is unrefreshing despite exhaustion.

Also, patients must have at least one other symptom: Cognitive impairment, sometimes described as “brain fog,” or what’s called orthostatic intolerance — meaning symptoms improve when lying down and patients find it hard to stay upright for long.

WHAT’S IN A NAME?

Patients have long sought a change to a name they say belittles their suffering. Some groups already had begun using a more tongue-twisting name — myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. Tuesday’s report rejected that option, saying not all patients have the muscle pain and brain or spinal cord inflammation that medical jargon reflects.

It’s too early to know if the alternative name proposed Tuesday will catch on. But just including the word “disease” instead of “syndrome” is important, said Carol Head, who leads the Solve ME/CFS Initiative, the largest advocacy organization.

“Having called this serious disease by an inappropriate and frankly insulting name is one of the factors that kept doctors, friends, family members, even employers from affording it the seriousness it deserves,” she said.

WHAT TO DO AFTER DIAGNOSIS

Doctors may not know how to cure the disorder, but there are treatments for individual symptoms, noted committee member Dr. Lucinda Bateman of the Fatigue Consultation Clinic in Salt Lake City.

Moreover, the IOM said there’s been “a paucity of research” into the causes, treatments, even the natural history of the disease to figure out who may get better over time. At Solve ME/CFS, Head said the report should spur more research funding.

WHAT HAPPENS NEXT?

The IOM advised the government to develop a toolkit to help doctors diagnose the disease, and to make sure the disorder is assigned a specific medical billing code. The government is reviewing the recommendations.

Committee members are spreading the word about the diagnostic criteria in medical journals, and the institute’s web site, www.iom.edu, eventually will post a physician guide.

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Activism

Let’s Talk Health: Empowering Our Community with Health Literacy

At Covered California, we recognize that understanding health insurance is more than just choosing a plan –it’s about having the knowledge to make informed decisions that lead to healthier lives. That’s why this year’s open enrollment campaign, “Let’s Talk Health,” focuses on breaking down barriers and simplifying the complex language of health care.

Published

17 hours ago

December 29, 2024

Oakland Post

Dr. Monica Soni. Courtesy of Covered California.

By Dr. Monica Soni

Navigating health insurance can often feel overwhelming, especially for individuals and families who are new to the system or unsure about their options.

Health literacy is critical for achieving better outcomes, reducing disparities, and ensuring every African American and Black Californian — regardless of their income, ethnicity, or background — has access to quality care. By making health insurance simpler to understand, we empower individuals to access preventive services, manage chronic conditions, and avoid costly medical bills.

Breaking Barriers in African American and Black Communities
This year, “Let’s Talk Health” places a special focus on supporting African American and Black communities, where systemic inequities in health outcomes persist. These communities often face higher rates of chronic conditions and challenges in navigating the health care system. To address these disparities, Covered California partnered with trusted organizations to provide information, tips and resources.

In San Francisco, Andre Atkins, Director of Programs at Rafiki Coalition, led a dialogue with Dr. Kim Rhoads, Community Engagement Director at UCSF Helen Diller Family Comprehensive Cancer Center; Destiny Williams, Health and Wellness Program Manager at Rafiki Coalition; and myself.

These conversations play a vital role in the pursuit of health equity by sharing power and creating spaces where our community can learn, share experiences, ask questions and connect with advocates who work daily to understand their unique needs. Through these efforts, we reaffirm our dedication to fostering equity and inclusion in health care, ensuring that every voice is heard and supported.

Why Health Literacy Matters
Health literacy goes beyond understanding health care terms. It’s about empowerment. It equips individuals to make informed decisions, from choosing the right health plan to finding a provider to deliver preventive care and seeking mental health services. At Covered California, we provide tools and resources, such as side-by-side plan comparisons and financial assistance details, to ensure everyone can navigate their options confidently and access the care they need.

Taking the First Step
Whether you’re a student, part-time worker, family of four, open enrollment is your opportunity to prioritize your health and your future. This year’s open enrollment period runs from Nov. 1, 2024, to Jan. 31, 2025, and we’re here to assist you every step of the way.

Consumers must select a health plan by the Dec. 31 to receive coverage for the entire year, starting Jan. 1, 2025.

To find the plan that’s right for you, and take the first step toward a healthier tomorrow, visit CoveredCA.com and fill out the application yourself or put in your ZIP code and connect with a certified agent in your neighborhood who can guide you through your options. Together, we can break down barriers and ensure that all Californians have the tools to thrive.

Dr. Monica Soni, MD, is the Chief Medical Officer for Covered California, where she leads efforts in health equity, quality transformation, and clinical innovation. As a practicing board-certified internal medicine physician and health care leader with over a decade of experience, Dr. Soni is committed to improving affordability, access, and outcomes for all Californians.

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Oakland Awarded $675,000 Grant to Reduce Lead Hazards

Published

1 day ago

December 29, 2024

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iStock.

By Post Staff

The City of Oakland has won a $675,800 grant from Partnership for the Bay’s Future (PBF) that will fund a two-year fellow to work in the Housing and Community Development (HCD) Department to support the development of lead hazard abatement and proactive rental inspection initiatives.

The award will assist in Oakland’s work to reduce lead hazards in older rental housing, especially in communities most impacted by housing instability. The City hired a consultant, Green and Healthy Homes Initiative, in 2024 to lead the technical aspect of the lead abatement work. By exploring the integration of lead hazard abatement with proactive rental inspections, the fellow’s work will aim to improve living conditions for families at risk of exposure and create safer homes for Oakland’s residents.

“We are grateful for the support of Partnership for the Bay’s Future for this award,” said Emily Weinstein, HCD director. “Housing safety and habitability are top priorities for our work in the coming year, and this fellow will ensure specific attention is paid to creating equitable solutions.”

The fellow will be dedicated full-time for the next two years to facilitate collaboration between HCD, Planning and Building Department (PBD), and a coalition of community partners. The total benefit to the City of Oakland is at least $675,800, of which $220,000 goes to a collaborative of community organizations to support the work.

The Healthy Havenscourt Collaborative brings essential community expertise to the project, connecting Oakland residents with resources and ensuring the program aligns with their needs.

These partners will engage residents directly to shape the program and make sure their voices are central to its design and implementation.

Coalition partners include Regional Asthma Management and Prevention (RAMP), La Clinica de la Raza, EBALDC, and Black Cultural Zone – all of which form the Healthy Havenscourt collaborative.

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Life After Domestic Violence: What My Work With Black Women Survivors Has Taught Me

Survivors sometimes lack awareness about the dynamics of healthy relationships, particularly when one has not been modeled for them at home. Media often minimizes domestic abuse, pushing the imagery of loyalty and love for one’s partner above everything — even harm.

Published

1 day ago

December 29, 2024

Oakland Post

Paméla Michelle Tate, Ph.D.

By Paméla Michelle Tate, Ph.D., California Black Media Partners

It was the Monday morning after her husband had a “situation” involving their child, resulting in food flying in the kitchen and a broken plate.

Before that incident, tensions had been escalating, and after years of unhappiness, she finally garnered enough courage to go to the courthouse to file for a divorce.

She was sent to an on-site workshop, and the process seemed to be going well until the facilitator asked, “Have you experienced domestic abuse?” She quickly replied, “No, my husband has never hit me.”

The facilitator continued the questionnaire and asked, “Has your husband been emotionally abusive, sexually abusive, financially abusive, technologically abusive, or spiritually abusive?”

She thought about how he would thwart her plans to spend time with family and friends, the arguments, and the many years she held her tongue. She reflected on her lack of access to “their money,” him snooping in her purse, checking her social media, computer, and emails, and the angry blowups where physical threats were made against both her and their children.

At that moment, she realized she had been in a long-suffering domestic abuse relationship.

After reading this, you might not consider the relationship described above as abusive — or you might read her account and wonder, “How didn’t she know that she was in an abusive relationship?”

After working with survivors at Black Women Revolt Against Domestic Violence in San Francisco, California, I have learned a great deal from a variety of survivors. Here are some insights:

Abuse thrives in isolation.
Societal tolerance of abusive behavior is prevalent in the media, workplaces, and even churches, although there are societal rules about the dos and don’ts in relationships.

Survivors are groomed into isolation.
Survivors are emotionally abused and manipulated almost from the beginning of their relationships through love-bombing. They are encouraged or coerced into their own little “love nest,” isolating them from family and friends.

People who harm can be charismatic and fun.
Those outside the relationship often struggle to believe the abuser would harm their partner until they witness or experience the abusive behavior firsthand.

Survivors fear judgment.
Survivors fear being judged by family, friends, peers, and coworkers and are afraid to speak out.

Survivors often still love their partners.
This is not Stockholm Syndrome; it’s love. Survivors remember the good times and don’t want to see their partner jailed; they simply want the abuse to stop.

The financial toll of abuse is devastating.
According to the Allstate Foundation’s study, 74% of survivors cite lack of money as the main reason for staying in abusive relationships. Financial abuse often prevents survivors from renting a place to stay. Compounding this issue is the lack of availability of domestic abuse shelters.

The main thing I have learned from this work is that survivors are resilient and the true experts of their own stories and their paths to healing. So, when you encounter a survivor, please take a moment to acknowledge their journey to healing and applaud their strength and progress.

About the Author

Paméla Michelle Tate, Ph.D., is executive director of Black Women Revolt Against Domestic Violence in San Francisco.