BILL NUMBER: S6928

SPONSOR: RIVERA
 
TITLE OF BILL:

An act to amend public health law, in relation to the myalgic
encephalomyelitis/chronic fatigue syndrome education and outreach
program

 
PURPOSE OR GENERAL IDEA OF BILL:

This bill adds myalgic encephalomyelitis/chronic fatigue syndrome to the
education and outreach program administered by the Department of Health.

 
SUMMARY OF SPECIFIC PROVISIONS:

Section 1 of the bill amends subdivision 1 of section 207 of the public
health law by adding a new paragraph (p) on myalgic
encephalomyelitis/chronic fatigue syndrome.

Section 2 is the effective date of the bill.
              

 
JUSTIFICATION:

This legislation will help ensure that New York state is providing more
education and outreach regarding Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome (ME/CFS), a multi-system disease associated with neuro-
logical, immunological and energy metabolism impairment characterized by
long standing and debilitating fatigue with a delayed exacerbation of
symptoms and loss of stamina following even minimal mental or physical
function. Symptoms may also include cognitive dysfunction, sleep abnor-
malities, autonomic manifestations, and pain. It is estimated ME/CFS
affects up to one million Americans, but the actual numbers could be
much higher.  According to the Institute of Medicine, an estimated
84-91% of individuals have not yet been diagnosed with ME/CFS. Women are
far more likely to have this illness than men with a ratio of 4 to 1 and
at least 256 of ME/CFS patients are confined to their home or bed.  The
cause of this illness remains unknown and there are no diagnostic tools,
nor an existing cure. There are however therapies available to manage
symptoms.

Education and outreach to the public and health care providers about
ME/CFS is very important, as is the need for more research to discover
the causes, understand the mechanisms of the disease and develop effec-
tive diagnostic markers and treatments. Unfortunately, the term "Chronic
Fatigue Syndrome" has a negative connotation and can trivialize the
seriousness of the condition and promote misunderstanding of the
illness. This makes the need for education and outreach even more impor-
tant.

 
PRIOR LEGISLATIVE HISTORY:

New bill.

 
FISCAL IMPLICATIONS:

None.

 
EFFECTIVE DATE:
On the one hundred eightieth day after it becomes a law.

                                
 
BILL NUMBER: S6928A

SPONSOR: RIVERA
 
TITLE OF BILL:

An act to amend public health law, in relation to the myalgic
encephalomyelitis/chronic fatigue syndrome education and outreach
program

 
PURPOSE OR GENERAL IDEA OF BILL:

This bill adds myalgic encephalomyelitis/chronic fatigue syndrome to the
education and outreach program administered by the Department of Health.

 
SUMMARY OF SPECIFIC PROVISIONS:

Section 1 of the bill amends subdivision 1 of section 207 of the public
health law by adding a new paragraph (p) on myalgic
encephalomyelitis/chronic fatigue syndrome.

Section 2 is the effective date of the bill.
              

 
JUSTIFICATION:

This legislation will help ensure New York is providing more education
and outreach regarding Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome (ME/CFS) a multi-system disease associated with neurological,
immunological and energy metabolism impairment characterized by long
standing and debilitating fatigue with a delayed exacerbation of symp-
toms and loss of stamina following even minimal mental or physical func-
tion. Symptoms may also include cognitive dysfunction, sleep abnor-
malities, autonomic manifestations, and pain. It is estimated ME/CFS
affects up to one million Americans, but the actual numbers could be
much higher. According to the Institute of Medicine, an estimated 84-91%
of individuals have not yet been diagnosed. Women are far more likely to
have this illness then men with a ratio of 4 to 1. At least 25% of
ME/CFS patients are confined to home or bed. The cause of this illness
remains unknown and there are no diagnostic tools, nor existing cure.
There are however therapies available to manage symptoms.

Education and outreach to the public and health care providers about
ME/CFS is very important, as is the need for more research to discover
the causes, understand the mechanisms of the disease and develop effec-
tive diagnostic markers and treatments. Unfortunately, the term "Chronic
Fatigue Syndrome" has a negative connotation and can trivialize the
seriousness of the condition and promote misunderstanding of the
illness. This makes the need for education and outreach even more impor-
tant.

 
PRIOR LEGISLATIVE HISTORY:

New bill

 
FISCAL IMPLICATIONS:

None

 
EFFECTIVE DATE:
One hundred eightieth day after it becomes a law.