I 

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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 


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1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the ‘‘Understanding 

3 COVID–19 Subsets and ME/CFS Act’’ or the ‘‘U.C.S. 

4 ME/CFS Act’’. 

5 SEC. 2. FINDINGS. 

6 Congress finds the following: 

7 (1) As of May 27, 2020, the virus that causes 

8 COVID–19 has infected 1.7 million Americans, 

9 many of whom may never recover, and has caused 

10 over 100,000 deaths. 

11 (2) Myalgic encephalomyelitis/chronic fatigue 

12 syndrome (ME/CFS) is a serious, chronic, and 

13 multisystemic disease associated with survivors of 

14 viral infections. 

15 (3) Subsets of COVID–19 patients are pre16 senting with ME/CFS symptoms, such as brain in17 flammation, and experts expect a significant increase 

18 of ME/CFS cases in the next two years in the 

19 United States following the COVID–19 epidemic. 

20 (4) ME/CFS is characterized by chronic or life21 long symptoms across multiple body systems includ22 ing post-exertional malaise (PEM), brain inflamma23 tion, fever, pain, neurological, immune and cognitive 

24 dysfunction, and swollen glands or tender lymph 

25 nodes which are most likely to appear following a 


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1 viral infection, like coronaviruses, Epstein-Barr, or 

2 Q-River fever. 

3 (5) The severity of both COVID–19 and ME/ 

4 CFS ranges from mild to completely debilitating and 

5 in some cases can be lethal. 

6 (6) The cause of ME/CFS is unknown. There 

7 is no diagnostic test for ME/CFS, and there is no 

8 treatment for ME/CFS that is approved by the Food 

9 and Drug Administration. 

10 (7) Physicians are not sufficiently educated on 

11 the proper diagnosis of COVID–19 subsets, ME/ 

12 CFS, or current treatments for ME/CFS. This leads 

13 to excess health care costs, errors in treatments, and 

14 harm to patients. 

15 (8) Patients with ME/CFS frequently suffer for 

16 years before receiving an accurate diagnosis and are 

17 often given harmful treatment recommendations ex18 posing them to unnecessary and costly tests and pro19 cedures, as well as needless suffering and expense. 

20 (9) The economic impact of ME/CFS is high. 

21 The annual cost in the United States for ME/CFS 

22 is estimated to be between $17,000,000,000 and 

23 $24,000,000,000 in medical expenditures and lost 

24 productivity. The overwhelming majority of people 

25 with ME/CFS are unable to work. 


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1 (10) ME/CFS symptoms are consistent with 

2 other neuroimmune diseases, such as Gulf War Ill3 ness, and are recognized as a serious and disabling 

4 issue for military veterans, particularly those who 

5 have been deployed in war zones and experience for6 eign toxic or viral exposure. 

7 (11) ME/CFS affects individuals of every age, 

8 racial, ethnic, and socioeconomic group, including 

9 children. Research shows that ME/CFS is two to 

10 four times more likely to occur in women than men. 

11 (12) The National Institute of Neurological 

12 Disorders and Stroke of the National Institutes of 

13 Health unanimously accepted the recent report of 

14 the National Advisory Neurological Disorders and 

15 Stroke (NANDS) Council Working Group for ME/ 

16 CFS which identifies research gaps and opportuni17 ties ready for investment. 

18 SEC. 3. RESEARCH ON COVID–19 SUBSETS AND POST-VIRAL 

19 CHRONIC NEUROIMMUNE DISEASES. 

20 Subpart 7 of part C of title IV of the Public Health 

21 Service Act (42 U.S.C. 285g et seq.) is amended by adding 

22 at the end the following: 


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1 ‘‘SEC. 452H. RESEARCH ON COVID–19 SUBSETS AND POST2 VIRAL CHRONIC NEUROIMMUNE DISEASES. 

3 ‘‘(a) IN GENERAL.—The Director of NIH, in coordi4 nation with or acting through the Director of the Institute, 

5 shall conduct and support research and related activities 

6 concerning the diagnosis, treatment, and risk factors of 

7 post-viral chronic neuroimmune diseases, specifically 

8 myalgic encephalomyelitis/chronic fatigue syndrome (in 

9 this section referred to as ‘ME/CFS’), COVID–19 patients 

10 exhibiting ME/CFS symptoms, and survivors of COVID– 

11 19 with ME/CFS. Such research shall attempt to better 

12 understand the underlying cause or causes of ME/CFS to 

13 reduce the rate of onset of ME/CFS in COVID–19 sur14 vivors or identify effective treatments and improve out15 comes for COVID–19 survivors with ME/CFS. 

16 ‘‘(b) DATA COLLECTION.—In carrying out subsection 

17 (a), the Director of NIH shall implement a system to col18 lect data on ME/CFS, which can be contributed to and 

19 utilized by research partners, and which provides for the 

20 collection of such data including— 

21 ‘‘(1) epidemiologic information with respect to 

22 the incidence, prevalence, and impact of ME/CFS in 

23 the United States, COVID–19 patients exhibiting 

24 ME/CFS symptoms, and survivors of COVID–19 

25 with ME/CFS; 


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1 ‘‘(2) primary data on ME/CFS natural history 

2 and symptom progress, including related data on the 

3 post-viral nature, risk factors, and various conditions 

4 known to be comorbid with ME/CFS; 

5 ‘‘(3) the availability of medical and social serv6 ices for individuals with ME/CFS and their families; 

7 and 

8 ‘‘(4) the disaggregation of such data by popu9 lation and geographical region. 

10 ‘‘(c) COLLABORATIVE RESEARCH CENTERS.—In car11 rying out subsection (a), the Director of NIH shall award 

12 grants and contracts to public or nonprofit private entities 

13 to pay all or part of the cost of establishing or expanding 

14 collaborative research centers for ME/CFS, including the 

15 costs of stakeholder engagement and patient outreach pro16 grams. 

17 ‘‘(d) DEVELOPING RESEARCH AGENDA.—The Direc18 tor of NIH, in coordination with the Director of the Insti19 tute, the Trans-NIH ME/CFS Working Group, inter20 agency partners, stakeholders, and disease experts, shall 

21 develop a research agenda— 

22 ‘‘(1) drawing from the September 2019 report 

23 of the National Advisory Neurological Disorders and 

24 Stroke Council Working Group for ME/CFS; and 


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1 ‘‘(2) prioritizing outcomes for COVID–19 pa2 tients exhibiting ME/CFS symptoms and survivors 

3 of COVID–19 with ME/CFS. 

4 ‘‘(e) RESEARCH PROGRAM.—In carrying out sub5 section (b), the Director of NIH, in coordination with the 

6 Director of the Institute and the directors of other na7 tional research institutes and centers, and utilizing the 

8 National Institutes of Health’s process of scientific peer 

9 review, shall— 

10 ‘‘(1) prioritize opportunities that accelerate di11 agnosis and identify effective treatments for 

12 COVID–19 patients exhibiting ME/CFS symptoms 

13 and survivors of COVID–19 with ME/CFS; 

14 ‘‘(2) prioritize projects with new and early ca15 reer researchers; 

16 ‘‘(3) expand ME/CFS research programs in17 cluding the continuation of existing studies, remote 

18 convenings with stakeholders, and new ME/CFS dis19 ease specific funding announcements, including set20 aside funds; and 

21 ‘‘(4) explore opportunities to partner with the 

22 Department of Defense and the Department of Vet23 erans Affairs to increase research and improve pa24 tient care regarding ME/CFS that commonly impact 

25 veterans and active duty military personnel. 


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1 ‘‘(f) REPORT TO CONGRESS.—Not later than 24 

2 months after the date of enactment of the Understanding 

3 COVID–19 Subsets and ME/CFS Act, the Director of 

4 NIH shall submit a report to Congress on the progress 

5 made in gathering data and expanding research on the 

6 onset and clinical care of COVID–19 survivors with ME/ 

7 CFS, including the rate at which COVID–19 survivors are 

8 diagnosed with ME/CFS. Such report shall summarize the 

9 grants and research funded, by year, under this section. 

10 ‘‘(g) AUTHORIZATION OF APPROPRIATIONS.—There 

11 is authorized to be appropriated to carry out this section 

12 $15,000,000 for each of fiscal years 2020 through 2024.’’. 

13 SEC. 4. PROMOTING PUBLIC AWARENESS OF POST-VIRAL 

14 CHRONIC NEUROIMMUNE DISEASES. 

15 Part B of title III of the Public Health Service Act 

16 (42 U.S.C. 243 et seq.) is amended by adding at the end 

17 the following: 

18 ‘‘SEC. 320B. PUBLIC AWARENESS OF POST-VIRAL CHRONIC 

19 NEUROIMMUNE DISEASES. 

20 ‘‘(a) IN GENERAL.—The Secretary may engage in 

21 public awareness and education activities to increase un22 derstanding and recognition of post-viral chronic 

23 neuroimmune diseases, specifically myalgic 

24 encephalomyelitis/chronic fatigue syndrome (in this sec25 tion referred to as ‘ME/CFS’). 


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1 ‘‘(b) ACTIVITIES INCLUDED.—Activities under sub2 section (a) may include the distribution of print, film, and 

3 web-based materials targeting health care providers and 

4 the public and prepared and disseminated in conjunction 

5 with patient organizations that conduct research on or 

6 treat ME/CFS. 

7 ‘‘(c) EMPHASIS.—The information expressed through 

8 activities under subsection (a) shall emphasize— 

9 ‘‘(1) basic information on ME/CFS, the symp10 toms, prevalence, and frequently co-occurring condi11 tions; and 

12 ‘‘(2) the importance of early diagnosis, and 

13 prompt and accurate treatment of ME/CFS, includ14 ing most recent treatment recommendations.’’. 

Æ 


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