Health
Redefining Chronic Fatigue with Better Diagnosis, New Name
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.
Business
Banning Menthol Cigarettes: California-Based Advocacy Group Joins Suit Against Federal Govt.
A California based non-governmental organization, The African American Tobacco Control Leadership Council (AATCLC), has joined two other public health advocacy groups in a second lawsuit against the U.S. Food and Drug Administration (FDA) for the agency’s inaction on issuing a final rule banning menthol cigarettes.
By Edward Henderson, California Black Media
A California based non-governmental organization, The African American Tobacco Control Leadership Council (AATCLC), has joined two other public health advocacy groups in a second lawsuit against the U.S. Food and Drug Administration (FDA) for the agency’s inaction on issuing a final rule banning menthol cigarettes.
The suit, filed by Christopher Leung of Leung Law, PLLC on behalf of the AATCLC, Action on Smoking and Health (ASH) and the National Medical Association (NMA) comes more than seven months after the FDA’s established date for finalizing a new rule against menthol cigarettes.
“We are a group of Californians, although we have expanded now. We were formed in 2008 to inform and direct the activities of commercial tobacco control and prevention as they affect African Americans and African immigrants in this country,” said Carol McGruder, co-chair of the AATCLC.
McGruder was speaking during a press briefing April 2 organized to announce the lawsuit. with representatives from the ASH, NMA and other organizations.
“Menthol cigarettes have had a devastating and disproportionate impact on the health of Black Americans,” said Yolanda Lawson, President of the NMA. “Smoking related diseases are the number one cause of death in the Black community.”
The lawsuit also follows the FDA’s 15-year delay in creating national policy that would ban cigarettes made with compound menthol, a minty substance that cigarette makers infuse into their tobacco products, making them more addictive and harmful.
Despite significant reductions in overall smoking rates in the US, smoking among poor, less educated and marginalized groups remains high. Every year, 45,000 Black Americans prematurely die from tobacco-caused diseases. An estimated 85% of them smoked menthol cigarettes.
“This disproportionate use of menthol cigarettes among Black Americans is not a coincidence,” Dr. Yerger continued. “I was one of the first tobacco documents researchers out of UCSF who exposed the tobacco industry’s systematic, predatory marketing schemes to dump highly concentrated menthol cigarette marketing into urban inner-city areas.”
In 2011, the FDA’s own scientific advisory committee concluded that the “Removal of menthol cigarettes from the marketplace would benefit public health in the United States.”
If the sale of menthol-flavored cigarettes is indeed banned, the FDA projects a 15.1% drop in smoking within 40 years, which would help save between 324,000 to 654,000 lives.
As a result of the Plaintiffs’ first lawsuit, the FDA made the landmark determination to add menthol to the list of banned characterizing flavors in cigarettes.
On the contrary, tobacco-aligned groups in the past have argued that banning menthol cigarettes would be impact federal and state budgets with the loss of nearly $6.6 billion in cigarette sales taxes. Menthol cigarettes account for over one-third of the U.S. cigarette market.
Other arguments from tobacco-backed groups include unintended consequences of a ban such as increased policing in Black and Brown communities due to contraband cigarettes. However, health advocates have dismissed this claim stating the ban would apply to companies that make or sell menthol cigarettes, not individual smokers.
By law, the United States has two months to respond to the lawsuit. The feds can respond to it or file a motion to dismiss.
If the suit is successful, the FDA would have 90 days to make a final ruling.
California Black Media
Commentary: Support Early Detection Technology to Save the Lives of Black Cancer Patients
In 2008, I received news no one ever wants to hear. I was diagnosed with Stage I breast cancer, with an ER/PR positive tumor type. The road to recovery was tough, taking more than a physical toll on my body. I grappled with the emotional and mental strain of navigating a health care system that too often fails to address the unique needs of Black women. There was no manual to guide me through this journey, no prescription to ease the burden, and no roadmap to help me navigate the challenges ahead.
By Rhonda Smith, Special to California Black Media Partners
In 2008, I received news no one ever wants to hear. I was diagnosed with Stage I breast cancer, with an ER/PR positive tumor type.
The road to recovery was tough, taking more than a physical toll on my body. I grappled with the emotional and mental strain of navigating a health care system that too often fails to address the unique needs of Black women. There was no manual to guide me through this journey, no prescription to ease the burden, and no roadmap to help me navigate the challenges ahead.
The stark reality that Black women are 41% more likely to die from breast cancer than White women is a grim reminder of the systemic inequities that pervade our health care system. According to the American Cancer Society, Black Americans have the highest death rate and shortest survival rate of any racial or ethnic group in the country. This disparity extends beyond breast cancer, impacting colorectal, prostate, and lung cancers, among others.
To help overcome these inequities, we need to attack cancer at its roots; we must catch it early, and we must ensure the means to catch cancer early are accessible to the communities most at risk. I consider myself fortunate to have received a Stage 1 diagnosis. Yet, it pains me to know that for many others, their breast cancer is often detected in later, more advanced stages.
Fortunately, there is hope on the horizon. Some California congressmembers — particularly U.S. Rep. Raul Ruiz (D-CA-25) — are taking decisive action. Ruiz is a lead sponsor of a bill to dramatically expand access to cutting-edge early detection tools for Medicare beneficiaries, including millions of Black Americans in underserved communities. With bipartisan support, this bill is closer than ever to passage.
Named in honor of Nancy Gardner Sewell, a civil rights leader and passionate advocate for health justice, the Nancy Gardner Sewell Medicare Multi-Cancer Early Detection Screening Coverage Act would ensure Medicare has the latitude it needs to cover an exciting new class of cancer detection tests as soon as they’re cleared by the FDA.
These tests utilize the latest scientific achievements to identify cancer signals in a patient’s blood stream. They can pinpoint many different types of cancer from a single blood draw, dramatically improving doctors’ ability to detect cancers early and at stages where they are most treatable.
The next phase of our fight against cancer – and the disproportionate toll it takes on Black Americans – starts by urging Congress to pass the Nancy Gardner Sewell Medicare Multi-Cancer Early Detection Screening Coverage Act and ensuring the benefits of this legislation reach all corners of our communities.
I don’t advocate for change for myself, but for every Black woman who has faced, or will face, a similar battle.
Together, we can rewrite the narrative of health care, catch and treat cancer early, and ensure that every woman has the opportunity to thrive, regardless of her race or background.
About the Author
Rhonda Smith, Executive Director of the California Black Health Network, leads initiatives to advance health equity for Black Californians, leveraging her expertise from roles including consulting and spearheading health disparities initiatives for BIPOC communities. With an MBA from the University of Virginia’s Darden School of Business and a B.S. in Civil Engineering from Virginia Tech, Rhonda has led transformative projects like the LiveHealthy OC Initiative and the Susan G. Komen® Circle of Promise California Initiative to address health disparities and promote whole person care approaches.
Bay Area
California Makes Strides in Fight Against Fentanyl
California National Guard’s Counterdrug Task Force has seized over 7,000 pounds of fentanyl including 3.4 million pills since the state launched a multi-agency operation in January 2024. Gov. Gavin Newsom announced the state’s progress on May 7, National Fentanyl Awareness Day. The Governor said he deployed the state’s highway patrol and National Guard personnel last year as part of a public safety operation in partnership with local government officials and law enforcement.
By California Black Media
California National Guard’s Counterdrug Task Force has seized over 7,000 pounds of fentanyl including 3.4 million pills since the state launched a multi-agency operation in January 2024.
Gov. Gavin Newsom announced the state’s progress on May 7, National Fentanyl Awareness Day.
The Governor said he deployed the state’s highway patrol and National Guard personnel last year as part of a public safety operation in partnership with local government officials and law enforcement.
“As we recognize the serious dangers of illegal fentanyl, California is continuing to tackle this issue head-on. Our efforts are getting this poison off our streets and out of our communities as we continue to support people struggling with substance use.” Newsom said.
CalGuard Major General Matthew Beevers said that the state’s unprecedented investment in the Counterdrug Task Force has immobilized operations and revenue channels of transnational criminal organizations.
“The CalGuard is committed to supporting our state, federal, local and tribal law enforcement partners to eliminate the scourge of fentanyl,” Beevers said.
In the past five years, California has invested $1.1 billion in operations and initiatives to fight crime, support local law enforcement, and improve public safety. The Newsom administration has implemented a comprehensive approach as part of the governor’s Master Plan to tackle the fentanyl and opioid crisis.
The Newsom administration has expanded efforts to improve public safety across the state where operations occurred in cities such as San Francisco, Oakland, and Bakersfield.
San Francisco Mayor London Breed acknowledged that joint operation was a step in the right direction toward curbing illegal activity and improving public safety.
“Our coordinated work to shut down drug markets in San Francisco is making a difference, but we have more work to do,” Breed said.
“Together we are sending a message at all levels of government that anyone selling fentanyl in this city will be arrested and prosecuted,” she said.
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