[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[H.R. 7057 Introduced in House (IH)]
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116th CONGRESS
2d Session
H. R. 7057
To amend the Public Health Service Act to authorize and provide for the
expansion, intensification, and coordination of the programs and
activities of the National Institutes of Health with respect to post-
viral chronic neuroimmune diseases, specifically myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS), to support the
COVID-19 response, and for other purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
May 28, 2020
Mr. Raskin introduced the following bill; which was referred to the
Committee on Energy and Commerce
_______________________________________________________________________
A BILL
To amend the Public Health Service Act to authorize and provide for the
expansion, intensification, and coordination of the programs and
activities of the National Institutes of Health with respect to post-
viral chronic neuroimmune diseases, specifically myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS), to support the
COVID-19 response, and for other purposes.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Understanding COVID-19 Subsets and
ME/CFS Act'' or the ``U.C.S. ME/CFS Act''.
SEC. 2. FINDINGS.
Congress finds the following:
(1) As of May 27, 2020, the virus that causes COVID-19 has
infected 1.7 million Americans, many of whom may never recover,
and has caused over 100,000 deaths.
(2) Myalgic encephalomyelitis/chronic fatigue syndrome (ME/
CFS) is a serious, chronic, and multisystemic disease
associated with survivors of viral infections.
(3) Subsets of COVID-19 patients are presenting with ME/CFS
symptoms, such as brain inflammation, and experts expect a
significant increase of ME/CFS cases in the next two years in
the United States following the COVID-19 epidemic.
(4) ME/CFS is characterized by chronic or lifelong symptoms
across multiple body systems including post-exertional malaise
(PEM), brain inflammation, fever, pain, neurological, immune
and cognitive dysfunction, and swollen glands or tender lymph
nodes which are most likely to appear following a viral
infection, like coronaviruses, Epstein-Barr, or Q-River fever.
(5) The severity of both COVID-19 and ME/CFS ranges from
mild to completely debilitating and in some cases can be
lethal.
(6) The cause of ME/CFS is unknown. There is no diagnostic
test for ME/CFS, and there is no treatment for ME/CFS that is
approved by the Food and Drug Administration.
(7) Physicians are not sufficiently educated on the proper
diagnosis of COVID-19 subsets, ME/CFS, or current treatments
for ME/CFS. This leads to excess health care costs, errors in
treatments, and harm to patients.
(8) Patients with ME/CFS frequently suffer for years before
receiving an accurate diagnosis and are often given harmful
treatment recommendations exposing them to unnecessary and
costly tests and procedures, as well as needless suffering and
expense.
(9) The economic impact of ME/CFS is high. The annual cost
in the United States for ME/CFS is estimated to be between
$17,000,000,000 and $24,000,000,000 in medical expenditures and
lost productivity. The overwhelming majority of people with ME/
CFS are unable to work.
(10) ME/CFS symptoms are consistent with other neuroimmune
diseases, such as Gulf War Illness, and are recognized as a
serious and disabling issue for military veterans, particularly
those who have been deployed in war zones and experience
foreign toxic or viral exposure.
(11) ME/CFS affects individuals of every age, racial,
ethnic, and socioeconomic group, including children. Research
shows that ME/CFS is two to four times more likely to occur in
women than men.
(12) The National Institute of Neurological Disorders and
Stroke of the National Institutes of Health unanimously
accepted the recent report of the National Advisory
Neurological Disorders and Stroke (NANDS) Council Working Group
for ME/CFS which identifies research gaps and opportunities
ready for investment.
SEC. 3. RESEARCH ON COVID-19 SUBSETS AND POST-VIRAL CHRONIC NEUROIMMUNE
DISEASES.
Subpart 7 of part C of title IV of the Public Health Service Act
(42 U.S.C. 285g et seq.) is amended by adding at the end the following:
``SEC. 452H. RESEARCH ON COVID-19 SUBSETS AND POST-VIRAL CHRONIC
NEUROIMMUNE DISEASES.
``(a) In General.--The Director of NIH, in coordination with or
acting through the Director of the Institute, shall conduct and support
research and related activities concerning the diagnosis, treatment,
and risk factors of post-viral chronic neuroimmune diseases,
specifically myalgic encephalomyelitis/chronic fatigue syndrome (in
this section referred to as `ME/CFS'), COVID-19 patients exhibiting ME/
CFS symptoms, and survivors of COVID-19 with ME/CFS. Such research
shall attempt to better understand the underlying cause or causes of
ME/CFS to reduce the rate of onset of ME/CFS in COVID-19 survivors or
identify effective treatments and improve outcomes for COVID-19
survivors with ME/CFS.
``(b) Data Collection.--In carrying out subsection (a), the
Director of NIH shall implement a system to collect data on ME/CFS,
which can be contributed to and utilized by research partners, and
which provides for the collection of such data including--
``(1) epidemiologic information with respect to the
incidence, prevalence, and impact of ME/CFS in the United
States, COVID-19 patients exhibiting ME/CFS symptoms, and
survivors of COVID-19 with ME/CFS;
``(2) primary data on ME/CFS natural history and symptom
progress, including related data on the post-viral nature, risk
factors, and various conditions known to be comorbid with ME/
CFS;
``(3) the availability of medical and social services for
individuals with ME/CFS and their families; and
``(4) the disaggregation of such data by population and
geographical region.
``(c) Collaborative Research Centers.--In carrying out subsection
(a), the Director of NIH shall award grants and contracts to public or
nonprofit private entities to pay all or part of the cost of
establishing or expanding collaborative research centers for ME/CFS,
including the costs of stakeholder engagement and patient outreach
programs.
``(d) Developing Research Agenda.--The Director of NIH, in
coordination with the Director of the Institute, the Trans-NIH ME/CFS
Working Group, interagency partners, stakeholders, and disease experts,
shall develop a research agenda--
``(1) drawing from the September 2019 report of the
National Advisory Neurological Disorders and Stroke Council
Working Group for ME/CFS; and
``(2) prioritizing outcomes for COVID-19 patients
exhibiting ME/CFS symptoms and survivors of COVID-19 with ME/
CFS.
``(e) Research Program.--In carrying out subsection (b), the
Director of NIH, in coordination with the Director of the Institute and
the directors of other national research institutes and centers, and
utilizing the National Institutes of Health's process of scientific
peer review, shall--
``(1) prioritize opportunities that accelerate diagnosis
and identify effective treatments for COVID-19 patients
exhibiting ME/CFS symptoms and survivors of COVID-19 with ME/
CFS;
``(2) prioritize projects with new and early career
researchers;
``(3) expand ME/CFS research programs including the
continuation of existing studies, remote convenings with
stakeholders, and new ME/CFS disease specific funding
announcements, including set-aside funds; and
``(4) explore opportunities to partner with the Department
of Defense and the Department of Veterans Affairs to increase
research and improve patient care regarding ME/CFS that
commonly impact veterans and active duty military personnel.
``(f) Report to Congress.--Not later than 24 months after the date
of enactment of the Understanding COVID-19 Subsets and ME/CFS Act, the
Director of NIH shall submit a report to Congress on the progress made
in gathering data and expanding research on the onset and clinical care
of COVID-19 survivors with ME/CFS, including the rate at which COVID-19
survivors are diagnosed with ME/CFS. Such report shall summarize the
grants and research funded, by year, under this section.
``(g) Authorization of Appropriations.--There is authorized to be
appropriated to carry out this section $15,000,000 for each of fiscal
years 2020 through 2024.''.
SEC. 4. PROMOTING PUBLIC AWARENESS OF POST-VIRAL CHRONIC NEUROIMMUNE
DISEASES.
Part B of title III of the Public Health Service Act (42 U.S.C. 243
et seq.) is amended by adding at the end the following:
``SEC. 320B. PUBLIC AWARENESS OF POST-VIRAL CHRONIC NEUROIMMUNE
DISEASES.
``(a) In General.--The Secretary may engage in public awareness and
education activities to increase understanding and recognition of post-
viral chronic neuroimmune diseases, specifically myalgic
encephalomyelitis/chronic fatigue syndrome (in this section referred to
as `ME/CFS').
``(b) Activities Included.--Activities under subsection (a) may
include the distribution of print, film, and web-based materials
targeting health care providers and the public and prepared and
disseminated in conjunction with patient organizations that conduct
research on or treat ME/CFS.
``(c) Emphasis.--The information expressed through activities under
subsection (a) shall emphasize--
``(1) basic information on ME/CFS, the symptoms,
prevalence, and frequently co-occurring conditions; and
``(2) the importance of early diagnosis, and prompt and
accurate treatment of ME/CFS, including most recent treatment
recommendations.''.
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