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MAY 12



Waterloo Wellington

Myalgic Encephalomyelitis Association


No Scents makes sense!


SPECIAL screening of ME/CFS documentary "Unrest"

The WWMEA is pleased to present UNREST (for free).

Click here to register for free.

Tue, 1 May 2018, 7:00 PM EDT

at the Princess Twin Cinemas
46 King Street North
Waterloo, ON   N2J 2W8


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

The WWMEA provides support group meetings and information for people with M.E. (family members are welcome too).

Additional information about M.E. can be found here:

Why did Jen use Hookworm as a treatment?
According to research, hookworm, in small numbers, seemed able to regulate inflammatory immune responses in their hosts.
Additional information about Hookworm Therapy (Helminthic Therapy) can be found here:

Patient Assistance Programs
InnoviCares is a completely free supplemental patient benefit plan.

Regardless of your existing public or private health coverage, innoviCares allows you to receive the brand-name medications and healthcare products prescribed by your physician at an equal, or similar price to the generic alternative(s). There are no monthly fees and innoviCares is accepted at over 98% of Canadian pharmacies. InnoviCares is the first free patient benefit plan to have over 18 different pharmaceutical manufacturers collaborate to put their products on one program to the benefit of their patients; making innoviCares the largest, simplest and most beneficial program of its kind in Canada. The innoviCares patient benefit plan is available to all residents in Canada at no cost, regardless of your existing level of coverage. Each member of your family should have their own card, so if you wish to register more than one member of your family, simply provide a different email address for each individual. The list of products covered by innoviCares varies from one province to another and is updated regularly.

Products covered by innoviCares
innoviCares FAQ
Click here for additional Patient Assistance Programs that are available


The mystery of chronic fatigue syndrome
Article from the L.A. Times (Sep. 30, 2011)


How to Live Toxin Free

  • The Waterloo Wellington Myalgic Encephalomyelitis Association (WWMEA) is a registered charitable organization (not-for-profit) that provides support group meetings and information for those affected by M.E. (Myalgic Encephalomyelitis).
  • M.E. is a painful, chronic, debilitating illness that affects many bodily systems.
  • The WWMEA operates in Southwestern Ontario within Wellington County and the Region of Waterloo serving cities such as Cambridge, Guelph, Kitchener and Waterloo (KW).  This area is also referred to as the Golden Triangle of Ontario as well as Canada's Technology Triangle.
  • The WWMEA relies on membership fees and donations to cover operating expenses.  Charitable Tax Receipts will be issued for donations from within Canada.  Funds are also raised through the Zehrs Save-A-Tape Program of Zehrs Supermarkets.
  • M.E. is comprised of numerous symptoms such as impairment in short-term memory, impairment in concentration, sore throat, tender lymph nodes, exhaustion, muscle pain, multijoint pain, headaches (of a new type, pattern, or severity), unrefreshing sleep and post-exertional malaise lasting more than 24 hours.
  • Illnesses that have similar symptoms to that of M.E. include:
    • CFS (Chronic Fatigue Syndrome),
    • CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome),
    • PVFS (Post Viral Fatigue Syndrome),
    • Low Natural Killer Cell Syndrome,
    • Mononucleosis,
    • Yuppie Flu,
    • Epstein Barr Virus,
    • Neurasthenia,
    • Post-Infectious Neuromyasthenia,
    • Neurocirculatory Asthenia,
    • FM (Fibromyalgia),
    • FMS (Fibromyalgia Syndrome),
    • GWS (Gulf War Syndrome),
    • Lyme Disease,
    • NMH (Neurally Mediated Hypotension),
    • Post-Polio Syndrome,
    • Arnold-Chiari Malformation,
    • EI (Environmental Illness),
    • MCS (Multiple Chemical Sensitivity) and
    • MS (Multiple Sclerosis).

Click here to read about Ken Nightingale's recovery from M.E.


Waterloo Wellington
Myalgic Encephalomyelitis Association
P.O. Box 20075
Pioneer Park Post Office
Kitchener, Ontario, Canada
N2P 2B4



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