Title: U.C.S. ME/CFS Act
Policy area: Health

Summary:
Understanding COVID-19 Subsets and ME/CFS Act or the U.C.S. ME/CFS Act
This bill requires the National Institutes of Health to support research on myalgic encephalomyelitis/chronic fatigue syndrome among COVID-19 (i.e., coronavirus disease 2019) patients and survivors. This is a serious, chronic, and multisystem disease associated with survivors of viral infections. In addition, the Department of Health and Human Services may carry out a public awareness campaign about post-viral chronic neuroimmune diseases.

[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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