Health
Redefining Chronic Fatigue with Better Diagnosis, New Name

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.
Copyright 2015 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
Advice
BOOK REVIEW: Let Me Be Real With You
At first look, this book might seem like just any other self-help offering. It’s inspirational for casual reader and business reader, both, just like most books in this genre. Dig a little deeper, though, and you’ll spot what makes “Let Me Be Real With You” stand out.
By Terri Schlichenmeyer
Author: Arshay Cooper, Copyright: c.2025, Publisher: HarperOne, SRP: $26.00, Page Count: 40 Pages
The hole you’re in is a deep one.
You can see the clouds above, and they look like a storm; you sense the wind, and it’s cold. It’s dark down there, and lonesome, too. You feel like you were born there — but how do you get out of the deep hole you’re in? You read the new book “Let Me Be Real With You” by Arshay Cooper. You find a hand-up and bring someone with you.
In the months after his first book was published, Cooper received a lot of requests to speak to youth about his life growing up on the West Side of Chicago, his struggles, and his many accomplishments. He was poor, bullied, and belittled, but he knew that if he could escape those things, he would succeed. He focused on doing what was best, and right. He looked for mentors and strove to understand when opportunities presented themselves.
Still, his early life left him with trauma. Here, he shows how it’s overcome-able.
We must always have hope, Cooper says, but hope is “merely the catalyst for action. The hope we receive must transform into the hope we give.”
Learn to tell your own story, as honestly as you know it. Be open to suggestions, and don’t dismiss them without great thought. Know that masculinity doesn’t equal stoicism; we are hard-wired to need other people, and sharing “pain and relatability can dissipate shame and foster empathy in powerful ways.”
Remember that trauma is intergenerational, and it can be passed down from parent to child. Let your mentors see your potential. Get therapy, if you need it; there’s no shame in it, and it will help, if you learn to trust it. Enjoy the outdoors when you can. Learn self-control. Give back to your community. Respect your financial wellness. Embrace your intelligence. Pick your friends and relationships wisely. “Do it afraid.”
And finally, remember that “You were born to soar to great heights and rule the sky.”
You just needed someone to tell you that.
At first look, this book might seem like just any other self-help offering. It’s inspirational for casual reader and business reader, both, just like most books in this genre. Dig a little deeper, though, and you’ll spot what makes “Let Me Be Real With You” stand out.
With a willingness to discuss the struggles he tackled in the past, Cooper writes with a solidly honest voice that’s exceptionally believable, and not one bit dramatic. You won’t find unnecessarily embellished stories or tall tales here, either; Cooper instead uses his real experiences to help readers understand that there are few things that are truly insurmountable. He then explains how one’s past can shape one’s future, and how today’s actions can change the future of the world.
“Let Me Be Real With You” is full of motivation, and instruction that’s do-able for adults and teens. If you need that, or if you’ve vowed to do better this coming year, it might help make you whole.
Advice
Support Your Child’s Mental Health: Medi-Cal Covers Therapy, Medication, and More
Advertorial
When children struggle emotionally, it can affect every part of their lives — at home, in school, with friends, and even their physical health. In many Black families, we’re taught to be strong and push through. But our kids don’t have to struggle alone. Medi-Cal provides mental health care for children and youth, with no referral or diagnosis required.
Through California Advancing and Innovating Medi-Cal (CalAIM), the state is transforming how care is delivered. Services are now easier to access and better connected across mental health, physical health, and family support systems. CalAIM brings care into schools, homes, and communities, removing barriers and helping children get support early, before challenges escalate.
Help is Available, and it’s Covered
Under Medi-Cal, every child and teen under age 19 has the right to mental health care. This includes screenings, therapy, medication support, crisis stabilization, and help coordinating services. Parents, caregivers, and children age 12 or older can request a screening at any time, with no diagnosis or referral required.
Medi-Cal’s Mental Health and Substance Use Disorder Program
For children and youth with more serious mental health needs, including those in foster care or involved in the justice system, Medi-Cal offers expanded support, including:
- Family-centered and community-based therapy to address trauma, behavior challenges, or system involvement.
- Wraparound care teams that help keep children safely at home or with relatives.
- Activity funds that support healing through sports, art, music, and therapeutic camps.
- Initial joint behavioral health visits, where a mental health provider and child welfare worker meet with the family early in a case.
- Child welfare liaisons in Medi-Cal health plans who help caregivers and social workers get services for children faster
Keeping Kids Safe from Opioids and Harmful Drugs
DHCS is also working to keep young people safe as California faces rising risks from opioids and counterfeit pills. Programs like Elevate Youth California and Friday Night Live give teens mentorship, leadership opportunities, and positive outlets that strengthen mental well-being.
Through the California Youth Opioid Response, families can learn how to avoid dangerous substances and get treatment when needed. Song for Charlie provides parents and teens with facts and tools to talk honestly about mental health and counterfeit pills.
DHCS also supports groups like Young People in Recovery, which helps youth build skills for long-term healing, and the Youth Peer Mentor Program, which trains teens with lived experience to support others. These efforts are part of California’s strategy to protect young people, prevent overdoses, and help them make healthier choices.
Support for Parents and Caregivers
Children thrive when their caregivers are supported. Through CalAIM’s vision of whole-person care, Medi-Cal now covers dyadic services, visits where a child and caregiver meet together with a provider to strengthen bonding, manage stress, and address behavior challenges.
These visits may include screening the caregiver for depression or anxiety and connecting them to food, housing, or other health-related social needs, aligning with CalAIM’s Community Supports framework. Notably, only the child must be enrolled in Medi-Cal to receive dyadic care.
Family therapy is also covered and can take place in clinics, schools, homes, or via telehealth, reflecting CalAIM’s commitment to flexible, community-based care delivery.
Additionally, BrightLife Kids offers free tools, resources, and virtual coaching for caregivers and children ages 0–12. Families can sign up online or through the BrightLife Kids app. No insurance, diagnosis, or referral is required.
For teens and young adults ages 13–25, California offers Soluna, a free mental health app where young people can chat with coaches, learn coping skills, journal, or join supportive community circles. Soluna is free, confidential, available in app stores, and does not require insurance.
CalHOPE also provides free emotional support to all Californians through a 24/7 support line at (833) 317-HOPE (4673), online chat, and culturally responsive resources.
Support at School — Where Kids Already Are
Schools are often the first place where emotional stress is noticed. Through the Children and Youth Behavioral Health Initiative (CYBHI), public schools, community colleges, and universities can offer therapy, counseling, crisis support, and referrals at no cost to families.
Services are available during school breaks and delivered on campus, by phone or video, or at community sites. There are no copayments, deductibles, or bills.
Medi-Cal Still Covers Everyday Care
Medi-Cal continues to cover everyday mental health care, including therapy for stress, anxiety, depression, or trauma; medication support; crisis stabilization; hospital care when needed; and referrals to community programs through county mental health plans and Medi-Cal health plans.
How to Get Help
- Talk to your child’s teacher, school counselor, or doctor.
- In Alameda County call 510-272-3663 or the toll-free number 1-800-698-1118 and in San Francisco call 855-355-5757 to contact your county mental health plan to request an assessment or services.
- If your child is not enrolled in Medi-Cal, you can apply at com or my.medi-cal.ca.gov.
- In a mental health emergency, call or text 988, the Suicide and Crisis Lifeline.
Every child deserves to grow up healthy and supported. Medi-Cal is working to transform care so it’s accessible, equitable, and responsive to the needs of every family.
Activism
ESSAY: The Hidden Toll — Federal Rollbacks Threaten Black Women’s Health in California
Nutrition assistance programs, which many Black women rely on to keep their families healthy and out of the hospital, are similarly endangered. Nearly half of Black women in California receive WIC, and 47% percent use CalFresh. Cuts or cost-shifts in those programs would worsen food insecurity, especially during pregnancy and postpartum. Malnutrition or diet instability can lead to adverse birth outcomes, weakened immunity, and worse recovery from medical interventions.
By Kellie Todd Griffin, Special to California Black Media Partners
If recent proposals in Congress to cut funding for federal social programs succeed, the downstream effects will not be abstract or distant.
They will be immediate and blunt — and felt in every clinic, every hospital, and most homes where Black women are struggling to maintain our health, care for her children, and stay afloat. In California, where Black women already navigate a terrain of deep systemic inequities, these cuts would be catastrophic.
As a lifelong advocate for Black women in California — through my research and lived experience – I’ve seen firsthand the entrenched medical and social disparities that leave too many Black women struggling to live healthy, fulfilling lives.
Across the spectrum of care — from mental, maternal, and perinatal health to chronic diseases like diabetes, hypertension, cancer, and uterine fibroids — Black women in California continue to bear a disproportionate burden.
Implicit bias in maternity care, for example, continues to be a challenge. It is a documented contributor to the fact that, in California, Black women die from pregnancy-related causes at three to four times the rate of White women.
Now, federal proposals on the table to slash funding for the very programs Black women rely on most: Medicaid (Medi-Cal in California) SNAP/CalFresh, WIC, and federal housing and income supports. As reported in the California Budget and Policy Equity on the Line report, about one in three Black women and children in California currently depend on Medi-Cal. If federal cuts were to force reductions in eligibility, benefits, or provider reimbursements, many Black women would lose access to primary care, chronic disease management, reproductive care, mental health and substance-use treatment, cancer screenings, and prenatal/postnatal services.
In a state already grappling with stark racial health disparities, removing coverage is not just harmful — it magnifies injustice. Black women in California face higher rates of poor health overall, lower life expectancy, and worse prenatal care statistics. When the safety net frays, they will be forced into impossible trade-offs: skip medications, delay care, or incur medical debt.
Nutrition assistance programs, which many Black women rely on to keep their families healthy and out of the hospital, are similarly endangered. Nearly half of Black women in California receive WIC, and 47% percent use CalFresh. Cuts or cost-shifts in those programs would worsen food insecurity, especially during pregnancy and postpartum. Malnutrition or diet instability can lead to adverse birth outcomes, weakened immunity, and worse recovery from medical interventions.
Compounding the harm is the assault on social determinants of health. The Equity on the Line analysis shows that housing assistance, income support, and childcare subsidies are already stretched thin. Any rollback will accelerate housing instability, homelessness risk, and family stress — all of which manifest in worse health outcomes: higher hypertension, depression, chronic illness, and reduced ability to adhere to medical regimens.
California has taken important steps to protect Black women’s health. One good example is Assembly Bill, AB 2319, authored by Assemblymember Lori D. Wilson (D-Suisun City). That law strengthens the Dignity in Pregnancy and Childbirth Act by expanding and enforcing implicit bias training for providers in perinatal settings, and requiring reporting and penalties for noncompliance.
The state is also taking legal and policy action to mitigate the impact of cuts to SNAP/CalFresh food stamp benefits – like mobilizing $80 million in state funds to support food banks. It is also taking action to shore up against federal cuts to Medi-Cal.
In our communities, organizations like California Black Women’s Health Project and Black Women for Wellness are already doing the groundwork — advocating for culturally centered care, education, and infrastructure to mitigate harm.
As Californians, we must all roll up our sleeves and amplify and bolster their efforts. These organizations serve as our voice. They are our watchdogs, too, documenting where bias persists, where systems fail, and where state enforcement is weak.
The stakes are too high for complacency. As we strategize to keep Black women healthy, we must also document and share our stories with others — every death, every untreated illness, every delayed pregnancy.
Let us be resolute, organized, hopeful, and persistent. California can be a model of how a state defends Black women’s health amid significant challenges, presenting a full vision to America, and the world, of how we can make health justice a reality and make California healthier for all our communities.
About the Author
Kellie Todd Griffin, President and CEO of the California Black Women’s Collective Empowerment Institute. With a deep commitment to equity and justice, she champions initiatives that amplify the voices and influence of Black women across California. Known for her strategic insight and passion for community empowerment, Kellie is a driving force in fostering systemic change and collective progress.
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