What's happening
The bill adds ME/CFS and fibromyalgia to New York's health education program, requiring increased awareness and an advisory council.
Why it matters
Brings state-level attention to ME/CFS and fibromyalgia. , two complex and often dismissed conditions that disproportionately affect women and lack definitive diagnostic tests or cures, potentially reducing stigma and improving care.
Mandates targeted education for both healthcare providers and the public. , aiming to improve recognition, diagnosis, and management of these illnesses, which are currently underdiagnosed and misunderstood.
Establishes an advisory council with patient, family, and specialist representation. , ensuring that policy and educational efforts include the voices of those directly affected and those with expertise—potentially leading to more effective and empathetic interventions.
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Who cares
Headline styles
Add Women's Illnesses to Outreach
Plain English, a few words. Used as the page title.
Sponsors
2 Co-sponsors
History
- Referred to health
- Delivered to assembly
- Passed senateVote 62–0
- Advanced to third reading
- 2nd report cal.
- 1st report cal.262
- Referred to health
- Returned to senate
- Died in assembly
- Referred to health
- Delivered to assembly
- Passed senateVote 62–0
Show 4 earlier actions
- Advanced to third reading
- 2nd report cal.
- 1st report cal.1103
- Referred to health
Full text
2 pagesUnderlined is new[Struck] is removedOfficial text on nysenate.gov ↗
STATE OF NEW YORK
1795
2019-2020 Regular Sessions
IN SENATE
January 16, 2019
Introduced by Sen. RIVERA -- read twice and ordered printed, and when printed to be committed to the Committee on Health
AN ACT to amend the public health law, in relation to including certain chronic and often misunderstood illnesses, primarily affecting women for which there are no diagnostic tests or cures within the health care and wellness education and outreach program
The People of the State of New York, represented in Senate and Assembly, do enact as follows:
Section 1. Subdivision 1 of section 207 of the public health law is amended by adding a new paragraph (p) to read as follows:
(p) Chronic and often misunderstood illnesses which primarily affect women for which there are no diagnostic tests or cures, including but not limited to:
(1) 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 symptoms and loss of stamina following even minimal mental or physical function; symptoms may also include cognitive dysfunction, sleep abnormalities, autonomic manifestations and pain; and
(2) fibromyalgia (FM), a complex chronic pain disorder characterized by widespread musculoskeletal pain accompanied by fatigue, cognitive difficulties and sleep problems; symptoms may also include tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.
Given there are no diagnostic tests or biomarkers, and no approved treatments for myalgic encephalomyelitis/chronic fatigue syndrome and few for fibromyalgia, diagnosis and management of these diseases can be more difficult and, as a result, education and awareness of health care providers and the public is imperative. Provided that the program for such illnesses shall include an advisory council under this section that
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[ ] is old law to be omitted.
LBD07754-01-9
S. 1795 2
shall include representatives of people with encephalomyelitis/chronic fatigue syndrome and fibromyalgia, and their families and health care providers who specialize in treating such illnesses and other chronic and often misunderstood illnesses which primarily affect women for which there are no diagnostic tests or cures, among others.
§ 2. This act shall take effect immediately.
Reflowed for reading: line numbers and page breaks removed. Cite the official text.
Sponsor's memo
Title of bill
An act to amend the public health law, in relation to including certain chronic and often misunderstood illnesses, primarily affecting women for which there are no diagnostic tests or cures within the health care and wellness education and outreach program
Purpose
Includes within the existing Health Care and Wellness Education and Outreach Program certain chronic, misunderstood illnesses, which prima- rily affect women including but not limited to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia,
Summary of provisions
Section 1 of the bill amends section 207 of the Public Health Law by adding a new subparagraph (0) to paragraph 1 which adds Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM), and other chronic and often misunderstood illnesses which primari- ly affect women for which there are no diagnostic tests or cures to the list of health care matters under the Health Care and Wellness Education and Outreach Program. Further provides that the program shall include an advisory council that includes representatives of people with these illnesses, their families and health care providers who specialize in treating such illnesses among others.
Read the full memo (771 words)
Section 2 of the bill provides an effective date.
Justification
Many New Yorkers, especially women, suffer from debilitating illnesses for which there are no diagnostic tests such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM). This legislation adds these two illnesses, as well as other illnesses, which primarily affect women, have no diagnostic tests avail- able, and are often underdiagnosed and misunderstood by the medical community to the list of identified health care matters under the state's Health Care and Wellness Education and Outreach Program under the Department of Health. The inclusion of these illnesses within the program raises awareness and expressly authorizes education and outreach regarding these illnesses to both health care providers and the public.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multi- system disease associated with neurological, 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 abnormalities, autonomic manifesta- tions and pain. It is estimated ME/CFS affects up to one million Ameri- cans, 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 avail- able 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.
Fibromyalgia (FM) is a complex chronic pain disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep disorders, and cognitive difficulties. Symptoms may also include tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression. FM affects approximately 10 million Americans and women are far more likely to have FM then men with a. ratio of 8 to 2. Symptoms can range from slight to severe, but the disease is life-al- tering for those who suffer from it. There are no diagnostic tests, nor is there a. cure. Patients work with health care providers to develop strategies to manage and relieve the symptoms.
Like ME/CFS, those suffering from FM often face cultural attitudes and stigmatization, which can lead to isolation. It is imperative that more education and outreach be made available to address stigmatization and connect people with good health care. By managing symptoms, patients can have a greater quality of life and for FM patients, lead more normal and productive lives. Additionally, more research on these illnesses is necessary to create diagnostic tools and to find cures.
This legislation will help ensure New York is providing more education and outreach regarding these and other illness like them so the public, patients and health care providers are better informed. Additionally it provides for an Advisory Council made up of patients, families of patients and health care experts in these illnesses to assist the Department.
Legislative history
New Bill
Fiscal implications
None
Effective date
Immediately
Summaries, headlines and scores are AI-generated from the official bill text. How we score bills. Source: NYS Open Legislation.