ME/CFS: Making strides to enhance the lives of those living with ME/CFS

Post last updated: May 14, 2019

How would you feel if you were living your life and you suddenly came down with what seemed to be the flu?  What if this flu-like illness seemed to go on forever, and you never returned to your normal self? What if your ability to participate in your regular physical or mental activities caused you extreme fatigue and it took you longer than normal to recover?

What if these occurrences persisted for months or years? What if you were unable to take care of your family, couldn’t go to work, woke up feeling like you hadn’t slept at all, and you were confined to your bed for months? Could you imagine what your life would be like? What about if this happened to your child?

Then imagine that you went to your doctor, and they told you there’s no treatment and no cure for your symptoms? What if your doctor told you that you were making up your symptoms or that what you were experiencing was all in your head? Sadly, this is reality for many people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

The Institute of Medicine (IOM) (now the National Academy of Medicine) describes ME/CFS as a disabling and complex illness. Research has shown women and people ages 40 – 60 are mainly affected; however, ME/CFS does not discriminate across sex, age, or racial backgrounds, and anyone (men, women, and children) can suffer from it.  An estimated 825,000-2.5 million Americans are affected by this illness and ME/CFS continues to be largely invisible in the U.S. Over 80 percent of people with ME/CFS have not been diagnosed. This “invisible” illness costs the U.S. about $18-51 billion annually in medical costs and earning loss.

As CDC commemorates the 27^th annual ME/CFS and Fibromyalgia Day, we reflect on the reality that there are still millions of people living with this debilitating illness undiagnosed. Those living with ME/CFS know all too well how slowly research has progressed. Yet, there is a growing sense of optimism that progress is being made.

Following a 2015 report from IOM, stakeholders began to work together to give clinicians and researchers guidance for diagnosis and tools to fully characterize the many facets of the illness. The first set of ME/CFS Common Data Elements (CDEs) are now available due to the Centers for Disease Control and  the National Institute of Neurological Disorders and Stroke (CDC/NINDS) project and innumerable hours of stakeholder input. These CDEs are important tools to help researchers collect, store and share information about the illness experience of participants in their studies.

ME/CFS expert clinicians are coming to consensus around best practices for laboratory testing and drug therapies to treat symptoms. The National Institutes for Health held a research conference in April 2019, bringing new and experienced investigators together to share ideas and stimulate research. lt is important for the medical community to envision ME/CFS as a medical mystery that needs to and can be solved, and that requires the attention of the brightest and the best clinical minds.

We can start to envision a future when a patient with ME/CFS will consult a physician who will be able to provide a diagnosis, explain the possible course of the illness  and prescribe targeted therapy. While we aren’t there yet, this is a vision we see as a possible future with continued progress.

Over the course of the past year, CDC has continued its efforts to promote continuous ME/CFS research, surveillance, and comprehensive educational resources for clinicians, as well as for the general public. Activities in this effort include:

• Partnering with local and state health departments to integrate an ME/CFS optional module into the Behavioral Risk Factor Surveillance System (BRFSS). This partnership will aid in each state’s effort to collect ME/CFS data and learn more about the burden of ME/CFS in their state.
• Partnering with the National Association of School Nurses, to collect data related to conditions causing excessive absenteeism, as well as educate school nurses about ME/CFS in younger people. This will enhance our ME/CFS surveillance effort among pediatric and adolescent populations.
• Partnering with Kaiser Permanente, through the Vaccine Safety Datalink program, to identify ME/CFS cases among the managed care organization’s patient population. This program will determine how to identify ME/CFS using electronic medical records and the process will help educate the medical providers in the managed care organization about ME/CFS.
• Partnering with the Georgia chapter of the American Association of Pediatrics to ensure its members are properly educated about ME/CFS. This partnership will provide CDC’s ME/CFS program an opportunity to continue its educational outreach with local organizations with hopes of expanding to additional medical professional organizations at the national level.
• Continuing its research efforts through the Multisite Clinical Assessment of ME/CFS research project. Engagement with study participants is ongoing with the hope of developing a long-term follow-up or registry system.
• Continuing to work with various stakeholders in developing educational materials for CDC’s ME/CFS website or in other digital formats to educate the public and healthcare professionals. In addition to incorporating the 2015 IOM recommendations on ME/CFS, the current website includes factsheets and patient stories.
• Publishing continuing education modules to ensure clinicians are educated and prepared to properly diagnose and treat patients living with ME/CFS. The continuing education module prepared by Medscape titled “Diagnosing ME/CFS:  The Experts Weigh In”  is part of a series of CDC-sponsored continuing medical education courses on ME/CFS .

As we commemorate ME/CFS International Awareness Day, CDC continues to work to promote awareness and education around ME/CFS.