May 1, 2018 – M.E./CFS documentary “Unrest” at Princess Twin Cinemas in Waterloo

The Waterloo Wellington Myalgic Encephalomyelitis Association (WWMEA) is pleased to present UNREST (for free) Tuesday May 1, 2018, 7:00 PM at the Princess Twin Cinemas, 46 King Street North, Waterloo, Ontario, Canada N2J 2W8

Please click here to register if you plan to attend.

The documentary is being shown free of charge in recognition of International M.E. Awareness Day.

Jennifer Brea’s Sundance award-winning documentary, Unrest, is a personal journey from patient to advocate to storyteller. Jennifer is twenty-eight years-old, working on her PhD at Harvard, and months away from marrying the love of her life when a mysterious fever leaves her bedridden. When doctors tell her it’s “all in her head,” she picks up her camera as an act of defiance and brings us into a hidden world of millions that medicine abandoned.

Quote from Vogue magazine:

“… the documentary is not only for those suffering from chronic illnesses – it’s for everyone, especially those who feel they cannot relate. In the same way that we don’t need to be in love when we read a love story, viewers don’t need to be sick in order to participate in the much-needed conversation that Brea’s documentary proposes. In fact, participation and engagement by a more diverse population is not only preferable, it’s crucial. Millions of people currently have some diagnosis of chronic illness, with a reported 15 to 30 million people worldwide reportedly suffering from ME/CFS alone.”

Unrest follows Brea when she first becomes sick after a 40 deg. C fever. For the next year, she suffers repeated infections and her health declines dramatically. But doctors do not take her seriously – a state of play recognised by many young women who are dismissed by the medical system.

Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.

It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME.

… in the US, science is moving on. In 2013 the US government asked the Institute of Medicine to convene an expert committee to examine the evidence base for ME. Two years later, their report “Redefining an Illness” was published. The report stated ME is “an acquired, chronic multi-systemic disease biological in nature” symptoms of which include “immune, neurological and cognitive impairment”. After reviewing thousands of medical papers, the report “stresses that this is a medical – not a psychiatric or psychological – illness”.

the report found considerable evidence that “exertion of any sort can adversely affect several organ systems and many aspects of patients’ lives, often seriously and for long periods”

“This is a much more serious disease than many of the other things that people are worried about. It’s more common than MS, it’s more common than Parkinson’s disease, it’s more common than AIDS. This is probably the last major disease that we know so little about. And it’s because of its nature that it’s been hidden. The severe patients are often just in their home being looked after by someone and no one knows they exist. But it can get very severe, people have tried to make some measures in terms of debilitating illness, it’s generally viewed as worse than many other diseases that have been ranked in terms of quality of life.”

Professor Ron Davis (of Stanford University), one of the most eminent ME scientists in the US, used to work on the human genome. Now he has gathered a group of scientists, including three Nobel laureates, to work on “one of the most urgent areas in medicine today”. He is also the father of Whitney Dafoe, the severely ill young man featured in Unrest.

May 1, 2018 - M.E./CFS documentary "Unrest" at Princess Twin Cinemas in Waterloo

Professor Ron Davis of Stanford University

Medical research into biomedical causes is increasing, but remains seriously underfunded globally. “It’s 30 years wasted, which is a long time in research terms. We could have discovered the cause of ME in that time,” laments health researcher, Dr Keith Geraghty (of the University of Manchester).

Over the past few years, studies have demonstrated that ME patients have metabolic, immune, neurological and other systemic dysfunction. Metabolites and proteins in the blood have been found to be abnormal, showing that the bodies of patients are in a hypometabolic state, causing the body to shut down and their cells become unable to produce energy. Neurological and systemic inflammation (along with a female bias) could point towards ME being an autoimmune disease. Evidence of immunodeficiency has been around since 1990 and more recently numerous studies have shown impaired natural killer cell function; a cell which helps control viral infections. ME science, however, is still in its infancy. More studies are needed to identify a cause and develop treatments.

Unrest was awarded a Special Jury Prize at the Paley Center for Media’s DocPitch competition and is supported by the Harnisch Foundation, Chicken & Egg Pictures, BRITDOC’s Good Pitch, the Tribeca Film Institute, the Fledgling Fund and the Sundance Institute.

May 1, 2018 - M.E./CFS documentary "Unrest" at Princess Twin Cinemas in Waterloo

Much of the above is excerpted from https://www.unrest.film and http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html

The WWMEA is a local charitable organization that provides support group meetings and information for people with M.E. (family members are welcome too) and can be contacted at http://www.wwmea.ca/ (Waterloo Wellington Myalgic Encephalomyelitis Association).

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“Beyond Reports” Forum on December 8, 2017

Ellen and Ken represented the WRCPI at this forum presented by Wellbeing Waterloo Region. The following charts were created to display how chronic pain, chronic illness and disability affect our region. Click on any chart below for a larger/clearer version.

Click for Larger Image of Number of WRCPI table at Wellbeing Waterloo

Click for Larger Image of People in Chronic Pain at Event

Click for Larger Image of Number of People by Condition

Click for Larger Image of Number of People by Disability Type

Click for Larger Image of Chart - Disability by Income

Click for Larger Image of Percentage of People with Disability by Age

Click for Larger Image of unmet health care needs

Click for Larger Image of US dollars spent for various conditions

Click for Larger Image of US population for various conditions

Click for Larger Image of Venn Diagram - Number of People with ME, FM or MCS

Click for Larger Image of Dollars in funding per patient per year (USA)

NetFlix and PBS showing ME/CFS documentary “Unrest”

Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself and her community as she looks for answers and fights for a cure.

Unrest, a new documentary being shown on NetFlix and also on PBS on Independent Lens, is directed by and features Jennifer Brea, a former Harvard PhD student who, after developing the disease ME/CFS, started filming her experience.

Showtimes on PBS “Independent Lens“:

  • PBS Boston: WGBH2 at 10:00 pm Monday Jan 8 (and again at 1:00 am)
  • PBS Seattle: KCTS at 10:00 pm Monday Jan 8 (and again at 1:00 am)
  • PBS Detroit: WTVS at 11:00 pm Tuesday Jan 9
  • PBS Buffalo: WNED at 11:00 pm Sunday Jan 14 (and again Friday Jan 19 at 3:30 AM)
  • It is also being streamed on demand for free at: http://www.pbs.org/independentlens/videos/unrest/, but unfortunately, Canadians will likely see this message: “We’re sorry, but this video is not available in your region due to right restrictions.”

Unrest follows Brea when she first becomes sick after a 40 deg. C fever. For the next year, she suffers repeated infections and her health declines dramatically. But doctors do not take her seriously – a state of play recognised by many young women who are dismissed by the medical system.

Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.

It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME.

… in the US, science is moving on. In 2013 the US government asked the Institute of Medicine to convene an expert committee to examine the evidence base for ME. Two years later, their report “Redefining an Illness” was published. The report stated ME is “an acquired, chronic multi-systemic disease biological in nature” symptoms of which include “immune, neurological and cognitive impairment”. After reviewing thousands of medical papers, the report “stresses that this is a medical – not a psychiatric or psychological – illness”.

the report found considerable evidence that “exertion of any sort can adversely affect several organ systems and many aspects of patients’ lives, often seriously and for long periods”

“This is a much more serious disease than many of the other things that people are worried about. It’s more common than MS, it’s more common than Parkinson’s disease, it’s more common than AIDS. This is probably the last major disease that we know so little about. And it’s because of its nature that it’s been hidden. The severe patients are often just in their home being looked after by someone and no one knows they exist. But it can get very severe, people have tried to make some measures in terms of debilitating illness, it’s generally viewed as worse than many other diseases that have been ranked in terms of quality of life.”

Professor Ron Davis (of Stanford University), one of the most eminent ME scientists in the US, used to work on the human genome. Now he has gathered a group of scientists, including three Nobel laureates, to work on “one of the most urgent areas in medicine today”. He is also the father of Whitney Dafoe, the severely ill young man featured in Unrest.

Medical research into biomedical causes is increasing, but remains seriously underfunded globally. “It’s 30 years wasted, which is a long time in research terms. We could have discovered the cause of ME in that time,” laments health researcher, Dr Keith Geraghty (of the University of Manchester).

Over the past few years, studies have demonstrated that ME patients have metabolic, immune, neurological and other systemic dysfunction. Metabolites and proteins in the blood have been found to be abnormal, showing that the bodies of patients are in a hypometabolic state, causing the body to shut down and their cells become unable to produce energy. Neurological and systemic inflammation (along with a female bias) could point towards ME being an autoimmune disease. Evidence of immunodeficiency has been around since 1990 and more recently numerous studies have shown impaired natural killer cell function; a cell which helps control viral infections. ME science, however, is still in its infancy. More studies are needed to identify a cause and develop treatments.

Unrest was awarded a Special Jury Prize at the Paley Center for Media’s DocPitch competition and is supported by the Harnisch Foundation, Chicken & Egg Pictures, BRITDOC’s Good Pitch, the Tribeca Film Institute, the Fledgling Fund and the Sundance Institute.

Showtimes on PBS “Independent Lens“:

  • PBS Boston: WGBH2 at 10:00 pm Monday Jan 8 (and again at 1:00 am)
  • PBS Seattle: KCTS at 10:00 pm Monday Jan 8 (and again at 1:00 am)
  • PBS Detroit: WTVS at 11:00 pm Tuesday Jan 9
  • PBS Buffalo: WNED at 11:00 pm Sunday Jan 14 (and again Friday Jan 19 at 3:30 AM)
  • It is also being streamed on demand for free at: http://www.pbs.org/independentlens/videos/unrest/, but unfortunately, Canadians will likely see this message: “We’re sorry, but this video is not available in your region due to right restrictions.”

Much of the above is excerpted from https://www.unrest.film and http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html

A local charitable organization, WWMEA, provides support group meetings and information for people with M.E. (family members are welcome too) and can be contacted at http://www.wwmea.ca/ (Waterloo Wellington Myalgic Encephalomyelitis Association).

When opioids help with pain

Sandra Gartz is a drug user — a prescription drug user.

The 62-year-old Kitchener woman takes prescribed codeine in the form of Tylenol 3s for a decades-old workplace injury when she was diagnosed with fibromyalgia.

Starting last month the provincial government instituted restrictions on high-dose prescriptions of opioids to people on the Ontario drug plan and Gartz worries what that will mean for people like her who rely on the potent painkillers.

Click the link below to read more on the Waterloo Region Record
By Liz Monteiro and Anam Latif

http://www.therecord.com/news-story/7147528-when-opioids-help-with-pain/

Originally posted by the Record on Feb. 18, 2017

McMaster receives funding to help patients with chronic illness March 31, 2016 (with video clip)

If you suffer from a chronic illness, there’s new hope coming from McMaster University. The Federal government is spending over $60 million for research that is not only focused on patients but asks for their input to help develop new treatments.

Federal Health Minister and family doctor Jane Philpott announced $62 million in funding for 5 new research networks, two of which will be at McMaster in Hamilton, the others are located at McGill in Montreal, the University of Toronto and University of British Columbia. Each one will have a different focus. At UBC it will be chronic kidney disease. McGill will do research for children with a brain disability. U of T will focus on diabetes, while McMaster will research gastro intestinal disease and chronic pain.

View the video and read more here:
http://www.chch.com/mcmaster-receives-25-million-funding-help-patients-chronic-illness/

Health minister boosts chronic pain, IBS research funding March 31, 2016

For chronic pain and bowel disease sufferers, getting almost $25 million from the federal government and another $67 million from interested parties for Hamilton-centred research is a very big deal.

This attention to the patients’ excruciating illnesses, and this new research based on their guidance, is boosting their hopes for improvements or cures.

“Undermanaged chronic pain is an epidemic in Canada,” said Kitchener resident Lynn Cooper at Health Minister Jane Philpott’s McMaster University funding announcement on Thursday.

Seven million Canadians — one in five — suffer from devastating chronic pain, said Cooper, president of the Canadian Pain Coalition.

“At its worst, this pain is disabling, dehumanizing, and deadly when people take their lives because they can no longer bear the pain.”

Read more here:
http://www.thespec.com/news-story/6425045-health-minister-boosts-chronic-pain-ibs-research-funding/

Research grants to study gut bacteria, IBD, IBS and the microbiome awarded to U of Calgary March 31, 2016

A unique set of grants focused on patient-oriented research were announced today. Patients and their families were involved in the research process and were able to formulate the types of questions they want scientists to answer about the diseases that affect them.

Minister of Health Jane Philpott announced the funding of five new research networks through Canada’s Strategy for Patient-Oriented Research (SPOR) at an event held at McMaster University in Hamilton, Ont. The University of Calgary is co-leading two of the initiatives focused on gastrointestinal disease and kidney disease.

The gastrointestinal disease component is a national collaboration of patients and scientists that will look at how gut bacteria and diet cause IBD, irritable bowel syndrome (IBS) and the anxiety and depression associated with these disorders.

There is a basic science component to the project that involves the microbiome centre at the University of Calgary where researchers will work to understand gut bacteria in the bowel.

Click here to read more.