The Story behind The Lady Upstairs

Monday, January 14, 2019

Were victims of Chronic Fatigue Syndrome able to convince Massachusetts General Hospital professionals that CFS is an infectious disease that is spreading among healthcare workers?




MGH INSTITUTE OF HEALTH PROFESSIONS HOSTS
GROUNDBREAKING EVENT FOR NEGLECTED DISEASE






Boston, MA — On Tuesday, January 15, the MGH Institute of Health
Professions hosts an event for over 600 healthcare professionals,
researchers and graduate students, and the public, to learn about the
highly disabling disease ME/CFS (Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome). The program will be held at 342 Huntington Ave,
Boston, MA, in Northeastern University’s Blackman Auditorium, at
5:30-7 pm (doors open 5 pm). Pre-registration not required.

The larger New England healthcare, academic and disability
communities, as well as the public, are also invited to attend this
program titled Invisible Disability: Providing Compassionate Care for
a Person with ME/CFS. The program moderator is Massachusetts General
Hospital’s Ronald Tompkins, MD, ScD, a co-director of the ME/CFS
Collaborative Research Activities at MGH and the Harvard Affiliated
Hospitals. This is a new endeavor funded by the Open Medicine
Foundation, where Dr. Tompkins is a Scientific Advisory Board member.


The Centers for Disease Control calls ME/CFS "America's hidden health
crisis." ME/CFS is a devastating disease largely forgotten by the
medical community, leaving most doctors misinformed about how to
diagnose and treat the illness. ME/CFS causes neurological,
immunological and energy production impairments. It afflicts 1-2.5
million in the U.S. and 17-24 million around the globe, with 75% being
women.



Rivka Solomon, event coordinator for the Massachusetts ME/CFS & FM
Association, said:


“We believe this is the largest event ever held for ME/CFS. It is not
a rare disease, yet it has lived in the shadows. Now it is finally
getting real attention. We hope at this event medical misinformation
will be replaced with the facts: ME/CFS is a serious disease that
significantly limits a patient’s ability to live a normal life. Yet it
is severely under funded by the NIH, resulting in tragically little
research and patients’ lives ruined. Without more NIH funding the
status quo will continue: no known cause, treatment or cure. We expect
this ground breaking event, held in the medical mecca that is Boston,
will start to change all that.”


The Institute of Medicine (now called the National Academies) said in
its milestone 2015 report:



“ME/CFS is a serious, chronic, complex, systemic disease…”
“Fewer than one third of medical school curricula and less than half
of medical textbooks include information about ME/CFS.”
“Many health care providers are skeptical about the seriousness of
ME/CFS… [Yet] It is ‘real.’ It is not appropriate to dismiss these
patients…”
“Many people with ME/CFS report being subject to hostile attitudes
from their health care providers, as well as to treatment strategies
that exacerbate their symptoms.”
“Remarkably little research funding has been made available… There is
an urgent need for more research…”


The January 15th program features the film UNREST, a Sundance and
Boston Globe (GlobeDocs) award-winning documentary short-listed for an
Oscar nomination, with a panel discussion that includes patient
advocates, a healthcare professional and a researcher.

Film: UNREST merges a love story with a medical mystery and a fight
for health care equality. Jen Brea is working on her PhD at Harvard
and is months away from marrying when she gets a mysterious fever that
leaves her bedridden. Disbelieved by doctors, she turns her camera on
herself and discovers a hidden world of millions with ME/CFS confined
to their homes and bedrooms.



UNREST has received extensive Massachusetts and national media
attention: The Boston Globe, NPR’s Here & Now, NPR’s Science Friday,
Cosmopolitan and Vogue, Today Show, New York Times, Los Angeles Times,
Chicago Tribune and more.



Political advances: Recently, Massachusetts Senator Ed Markey, a
champion for ME/CFS patients, introduced a Senate Resolution (SR508)
for ME/CFS, co-sponsored by Senators Susan Collins of Maine, Elizabeth
Warren of MA and others. Sen. Markey also held a congressional
briefing on the disease. In 2017, the MA Congressional Delegation
issued a joint statement in support of ME/CFS patients.

Will Massachusetts General Hospital treat Chronic Fatigue Syndrome as an Infectious Disease that should be a National Notifiable Disease?




MGH INSTITUTE OF HEALTH PROFESSIONS HOSTS
GROUNDBREAKING EVENT FOR NEGLECTED DISEASE






Boston, MA — On Tuesday, January 15, the MGH Institute of Health
Professions hosts an event for over 600 healthcare professionals,
researchers and graduate students, and the public, to learn about the
highly disabling disease ME/CFS (Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome). The program will be held at 342 Huntington Ave,
Boston, MA, in Northeastern University’s Blackman Auditorium, at
5:30-7 pm (doors open 5 pm). Pre-registration not required.

The larger New England healthcare, academic and disability
communities, as well as the public, are also invited to attend this
program titled Invisible Disability: Providing Compassionate Care for
a Person with ME/CFS. The program moderator is Massachusetts General
Hospital’s Ronald Tompkins, MD, ScD, a co-director of the ME/CFS
Collaborative Research Activities at MGH and the Harvard Affiliated
Hospitals. This is a new endeavor funded by the Open Medicine
Foundation, where Dr. Tompkins is a Scientific Advisory Board member.


The Centers for Disease Control calls ME/CFS "America's hidden health
crisis." ME/CFS is a devastating disease largely forgotten by the
medical community, leaving most doctors misinformed about how to
diagnose and treat the illness. ME/CFS causes neurological,
immunological and energy production impairments. It afflicts 1-2.5
million in the U.S. and 17-24 million around the globe, with 75% being
women.



Rivka Solomon, event coordinator for the Massachusetts ME/CFS & FM
Association, said:


“We believe this is the largest event ever held for ME/CFS. It is not
a rare disease, yet it has lived in the shadows. Now it is finally
getting real attention. We hope at this event medical misinformation
will be replaced with the facts: ME/CFS is a serious disease that
significantly limits a patient’s ability to live a normal life. Yet it
is severely under funded by the NIH, resulting in tragically little
research and patients’ lives ruined. Without more NIH funding the
status quo will continue: no known cause, treatment or cure. We expect
this ground breaking event, held in the medical mecca that is Boston,
will start to change all that.”


The Institute of Medicine (now called the National Academies) said in
its milestone 2015 report:



“ME/CFS is a serious, chronic, complex, systemic disease…”
“Fewer than one third of medical school curricula and less than half
of medical textbooks include information about ME/CFS.”
“Many health care providers are skeptical about the seriousness of
ME/CFS… [Yet] It is ‘real.’ It is not appropriate to dismiss these
patients…”
“Many people with ME/CFS report being subject to hostile attitudes
from their health care providers, as well as to treatment strategies
that exacerbate their symptoms.”
“Remarkably little research funding has been made available… There is
an urgent need for more research…”


The January 15th program features the film UNREST, a Sundance and
Boston Globe (GlobeDocs) award-winning documentary short-listed for an
Oscar nomination, with a panel discussion that includes patient
advocates, a healthcare professional and a researcher.

Film: UNREST merges a love story with a medical mystery and a fight
for health care equality. Jen Brea is working on her PhD at Harvard
and is months away from marrying when she gets a mysterious fever that
leaves her bedridden. Disbelieved by doctors, she turns her camera on
herself and discovers a hidden world of millions with ME/CFS confined
to their homes and bedrooms.



UNREST has received extensive Massachusetts and national media
attention: The Boston Globe, NPR’s Here & Now, NPR’s Science Friday,
Cosmopolitan and Vogue, Today Show, New York Times, Los Angeles Times,
Chicago Tribune and more.



Political advances: Recently, Massachusetts Senator Ed Markey, a
champion for ME/CFS patients, introduced a Senate Resolution (SR508)
for ME/CFS, co-sponsored by Senators Susan Collins of Maine, Elizabeth
Warren of MA and others. Sen. Markey also held a congressional
briefing on the disease. In 2017, the MA Congressional Delegation
issued a joint statement in support of ME/CFS patients.

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