Date: August 23, 2021
Webinar: September 2, 2021, 17:00 UTC
Seven significant organizations propose critical code change
to CDC's ICD-10, addressing catastrophic lack of ME/CFS case
tracking in the U.S.
Without action, millions of Americans' medical data will continue being
mislabeled and lost, especially as Long COVID cases exponentially
LOS ANGELES, C.A. - It's estimated that approximately 2.5 million
Americans currently suffer from myalgic encephalomyelitis/chronic
fatigue syndrome (ME/CFS), often a post-infection disease. Yet there's
no way for those in the medical system to properly code and track the
disease in the U.S., meaning critical data is lost forever.
This affects not only current cases of ME/CFS, but also millions of
anticipated new cases of Long COVID following COVID-19 infections, many
of whom are very similar to ME/CFS. The need for code correction has
never been more urgent and now numerous organizations are asking the
Centers for Disease Control (CDC) to do just that.
'This is an urgent call to action from our organizations. with this
important new proposal,' said Oved Amitay, President and CEO of Solve
M.E. 'This collective effort demonstrates consensus and expedience. If
the CDC doesn't fix this code, we'll be in dire straits as COVID-19
triggers millions of additional ME/CFS cases.'
The United States, and much of the world, uses a standardized system
called the International Classification of Diseases (ICD) to code all
diseases in medical records. This allows mortality and morbidity data to
be consistently coded and tracked. While the World Health Organization
recently released an updated version of its ICD, the U.S. and most
countries still use ICD-10.
The CDC's version of ICD-10 (ICD-10-CM) doesn't have a code for ME/CFS,
even though U.S. federal agencies and numerous medical education
providers have widely adopted it. In the absence of a code for ME/CFS,
there's no way to track its mortality and morbidity or its relationship
to Long COVID cases. Instead, since 2015, U.S. doctors have been forced
to diagnose either CFS or ME - and they invariably choose chronic
fatigue syndrome. In the US, CFS is equated to the symptom of chronic
fatigue, further obscuring vital prevalence data.
'This issue is a moral imperative. America is the only country in the
world that doesn't properly classify this disease,' said Dr. Lily Chu,
Vice President of the International Association for Chronic Fatigue
Syndrome/Myalgic Encephalomyelitis. 'As we now see an explosion of new
ME/CFS cases linked to COVID-19 and Long COVID, we must correct this
before critical data is lost forever.'
Not only is it impossible to track and report on the mortality and
morbidity of ME/CFS, but the codes impact insurance reimbursement, use
of electronic health records in retrospective research, generating
statistics on disease burden and outcomes, and the medical perception of
Seven highly influential advocacy, education, and research organizations
banded together and are urgently demanding change. They submitted a
joint proposal to the CDC requesting the following:
1. Add ME/CFS to the neurological chapter of ICD-10-CM as an inclusion
2. Expand the lead term 'postviral fatigue syndrome' to allow for
3. Add a subcode for postviral fatigue syndrome that is separate from
that for ME, because ME is not always post viral
On September 14-15, 2021, the CDC's National Center for Health
Statistics will consider the joint proposal. All seven organizations
strongly urge the CDC to adopt these proposed coding changes.
The seven organizations are:
1. International Association for Chronic Fatigue Syndrome/Myalgic
2. Massachusetts ME/CFS & FM Association
4. Minnesota ME/CFS Alliance
5. Open Medicine Foundation
6. Pandora Org
7. Solve M.E.
What is ME/CFS?
ME/CFS is a chronic, complex, disease that profoundly limits the health
and productivity of patients. It causes neurological, immune, autonomic,
and energy metabolism impairment. Symptoms can include extreme
exhaustion at the cellular level (exacerbated by activity), an
intolerance to exertion, problems being upright, pain, cognitive
impairment and extreme sensitivity to light and sound. As many as 75%
can't work and an estimated 25% are homebound or bedbound. There is no
cure, nor are there any FDA-approved drugs or treatments.
Media inquiries only contact
Sedulo Communications on behalf of Solve M.E.
More About the Seven Organizations:
This coalition of seven organizations works with people with ME/CFS and
Long Covid and is composed of influential ME/CFS patient-advocates,
medical providers, and scientists.
(c) 2021 SMCI