,i  #aafth ,,congress  #b;d ,session    
,h4 ,r4 #gjeg  ,,in ,,the ,,house ,,of  
,,representatives  ,may #bh1 #bjbj,mr4  
,raskin introduced the following bill2  
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        
expansion1 intensification1 and         
coordination of the programs and        
activities of the ,national ,institutes 
of ,health with respect to post-viral   
chronic neuroimmune diseases1           
specifically myalgic                    
encephalomyelitis_/chronic fatigue      
syndrome 7,,me_/,,cfs71 to support the  
,,covid-#ai response1 and for other     
purposes4  #a4 ,short title ,this ,act  
may be cited as the ,understanding      
,,covid-#ai ,subsets and ,,me_/,,cfs    
,act or the ,u4,c4,s4 ,,me_/,,cfs ,act4 
#b4 ,findings ,congress finds the       
following3 7#a7 ,as of ,may #bg1 #bjbj1 
the virus that causes ,,covid-#ai has   
infected #a4g million ,americans1 many  

of whom may never recover1 and has      
caused over #ajj1jjj deaths4  7#b7      
,myalgic encephalomyelitis_/chronic     
fatigue syndrome 7,,me_/,,cfs7 is a     
serious1 chronic1 and multisystemic     
disease associated with survivors of    
viral infections4  7#c7 ,subsets of     
,,covid-#ai patients are presenting with
 ,,me_/,,cfs symptoms1 such as brain    
inflammation1 and experts expect a      
significant increase of ,,me_/,,cfs     
cases in the next two years in the      
,united ,states following the           
,,covid-#ai epidemic4  7#d7 ,,me_/,,cfs 
is characterized by chronic or lifelong 
symptoms across multiple body systems   
including post-exertional malaise       
7,,pem71 brain inflammation1 fever1     
pain1 neurological1 immune and cognitive
 dysfunction1 and swollen glands or     
tender lymph nodes which are most likely
 to appear following a viral infection1 
like coronaviruses1 ,epstein-,barr1 or  
,q-,river fever4  7#e7 ,the severity of 
both ,,covid-#ai and ,,me_/,,cfs ranges 

from mild to completely debilitating and
 in some cases can be lethal4  7#f7 ,the
 cause of ,,me_/,,cfs is unknown4 ,there
 is no diagnostic test for ,,me_/,,cfs1 
and there is no treatment for           
,,me_/,,cfs that is approved by the     
,food and ,drug ,administration4  7#g7  
,physicians are not sufficiently        
educated on the proper diagnosis of     
,,covid-#ai subsets1 ,,me_/,,cfs1 or    
current treatments for ,,me_/,,cfs4     
,this leads to excess health care costs1
 errors in treatments1 and harm to      
patients4  7#h7 ,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        
procedures1 as well as needless         
suffering and expense4  7#i7 ,the       
economic impact of ,,me_/,,cfs is high4 
,the annual cost in the ,united ,states 
for ,,me_/,,cfs is estimated to be      
between #ag1jjj1jjj1jjj and             

#bd1jjj1jjj1jjj in medical expenditures 
and lost productivity4 ,the overwhelming
 majority of people with ,,me_/,,cfs are
 unable to work4  7#aj7 ,,me_/,,cfs     
symptoms are consistent with other      
neuroimmune diseases1 such as ,gulf ,war
 ,illness1 and are recognized as a      
serious and disabling issue for military
 veterans1 particularly those who have  
been deployed in war zones and          
experience foreign toxic or viral       
exposure4  7#aa7 ,,me_/,,cfs affects    
individuals of every age1 racial1       
ethnic1 and socioeconomic group1        
including children4 ,research shows that
 ,,me_/,,cfs is two to four times more  
likely to occur in women than men4      
7#ab7 ,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 7,,nands7       
,council ,working ,group for ,,me_/,,cfs
 which identifies research gaps and     

opportunities ready for investment4  #c4
 ,research on ,,covid-#ai subsets and   
post-viral chronic neuroimmune diseases 
,subpart #g of part ,c of title ,,iv of 
the ,public ,health ,service ,act 7#db  
,u4,s4,c4 #bhe;g et seq47 is amended by 
adding at the end the following3        
#deb;,h4 ,research on ,,covid-#ai       
subsets and post-viral chronic          
neuroimmune diseases  7a7 ,in general   
,the ,director of ,,nih1 in coordination
 with or acting through the ,director of
 the ,institute1 shall conduct and      
support research and related activities 
concerning the diagnosis1 treatment1 and
 risk factors of post-viral chronic     
neuroimmune diseases1 specifically      
myalgic encephalomyelitis_/chronic      
fatigue syndrome 7in this section       
referred to as ,,me_/,,cfs71 ,,covid-#ai
 patients exhibiting ,,me_/,,cfs        
symptoms1 and survivors of ,,covid-#ai  
with ,,me_/,,cfs4 ,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-#ai survivors 
or identify effective treatments and    
improve outcomes for ,,covid-#ai        
survivors with ,,me_/,,cfs4  7b7 ,data  
collection ,in carrying out subsection  
7a71 the ,director of ,,nih shall       
implement a system to collect data on   
,,me_/,,cfs1 which can be contributed to
 and utilized by research partners1 and 
which provides for the collection of    
such data including-- 7#a7 epidemiologic
 information with respect to the        
incidence1 prevalence1 and impact of    
,,me_/,,cfs in the ,united ,states1     
,,covid-#ai patients exhibiting         
,,me_/,,cfs symptoms1 and survivors of  
,,covid-#ai with ,,me_/,,cfs2  7#b7     
primary data on ,,me_/,,cfs natural     
history and symptom progress1 including 
related data on the post-viral nature1  
risk factors1 and various conditions    
known to be comorbid with ,,me_/,,cfs2  
7#c7 the availability of medical and    
social services for individuals with    

,,me_/,,cfs and their families2 and     
7#d7 the disaggregation of such data by 
population and geographical region4  7c7
 ,collaborative research centers ,in    
carrying out subsection 7a71 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_/,,cfs1 including the costs of     
stakeholder engagement and patient      
outreach programs4  7d7 ,developing     
research agenda ,the ,director of ,,nih1
 in coordination with the ,director of  
the ,institute1 the ,trans-,,nih        
,,me_/,,cfs ,working ,group1 interagency
 partners1 stakeholders1 and disease    
experts1 shall develop a research       
agenda-- 7#a7 drawing from the          
,september #bjai report of the ,national
 ,advisory ,neurological ,disorders and 
,stroke ,council ,working ,group for    
,,me_/,,cfs2 and  7#b7 prioritizing     
outcomes for ,,covid-#ai patients       

exhibiting ,,me_/,,cfs symptoms and     
survivors of ,,covid-#ai with           
,,me_/,,cfs4  7e7 ,research program ,in 
carrying out subsection 7b71 the        
,director of ,,nih1 in coordination with
 the ,director of the ,institute and the
 directors of other national research   
institutes and centers1 and utilizing   
the ,national ,institutes of ,health's  
process of scientific peer review1      
shall-- 7#a7 prioritize opportunities   
that accelerate diagnosis and identify  
effective treatments for ,,covid-#ai    
patients exhibiting ,,me_/,,cfs symptoms
 and survivors of ,,covid-#ai with      
,,me_/,,cfs2  7#b7 prioritize projects  
with new and early career researchers2  
7#c7 expand ,,me_/,,cfs research        
programs including the continuation of  
existing studies1 remote convenings with
 stakeholders1 and new ,,me_/,,cfs      
disease specific funding announcements1 
including set-aside funds2 and  7#d7    
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 personnel4  7f7 ,report to     
,congress ,not later than #bd months    
after the date of enactment of the      
,understanding ,,covid-#ai ,subsets and 
,,me_/,,cfs ,act1 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-#ai survivors  
with ,,me_/,,cfs1 including the rate at 
which ,,covid-#ai survivors are         
diagnosed with ,,me_/,,cfs4 ,such report
 shall summarize the grants and research
 funded1 by year1 under this section4   
7g7 ,authorization of appropriations    
,there is authorized to be appropriated 
to carry out this section #ae1jjj1jjj   
for each of fiscal years #bjbj through  
#bjbd4  4  #d4 ,promoting public        
awareness of post-viral chronic         
neuroimmune diseases ,part ,b of title  

,,iii of the ,public ,health ,service   
,act 7#db ,u4,s4,c4 #bdc et seq47 is    
amended by adding at the end the        
following3  #cbj;,b4 ,public awareness  
of post-viral chronic neuroimmune       
diseases  7a7 ,in general ,the          
,secretary may engage in public         
awareness and education activities to   
increase understanding and recognition  
of post-viral chronic neuroimmune       
diseases1 specifically myalgic          
encephalomyelitis_/chronic fatigue      
syndrome 7in this section referred to as
 ,,me_/,,cfs74  7b7 ,activities included
 ,activities under subsection 7a7 may   
include the distribution of print1 film1
 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_/,,cfs4  7c7 ,emphasis ,the        
information expressed through activities
 under subsection 7a7 shall emphasize-- 
7#a7 basic information on ,,me_/,,cfs1  

the symptoms1 prevalence1 and frequently
 co-occurring conditions2 and  7#b7 the 
importance of early diagnosis1 and      
prompt and accurate treatment of        
,,me_/,,cfs1 including most recent      
treatment recommendations4  4