The Waterloo Region Chronic Pain Initiative

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).

 

The sixth workshop of the Waterloo Region Chronic Pain Initiative was on Thursday October 26, 2017 from 7:00 – 9:00 pm.

One question that arose from the workshop was: What is the OHIP code for Fibromyalgia?

The answer is K037 (details are below).  When you make an appointment with a doctor you should simply say that you wish to discuss Fibromyalgia and they should know how to code it properly. They should also book 30 minutes for you where you can discuss any number of symptoms you wish …

Ontario Health Insurance Plan (OHIP) follow-up care code (i.e. for appointments after being diagnosed) for “Fibromyalgia/chronic fatigue syndrome” is K037. It is listed in the adobe_file_icon_24x11 “Schedule of Benefits: Physician Services Under the Health Insurance Act (October 30, 2015 (Effective December 21, 2015)). Ministry of Health and Long Term Care (MOHLTC) (PDF)”:

  • Fibromyalgia/chronic fatigue syndrome care is the provision of care to patients with fibromyalgia or chronic fatigue syndrome. The service includes the common and specific elements of all insured services listed under “Family Practice & Practice In General” in the “Consultations and Visits” section of the Schedule.
    • K037 Fibromyalgia/chronic fatigue syndrome care
      • Payment rules:
        1. K037 is a time based service with time calculated based on units. Unit means ½ hour or major part thereof – see General Preamble GP5, GP37 for definitions and time-keeping requirements.
        2. No other consultation, assessment, visit or time based service is eligible for payment when rendered the same day as K037 to the same patient by the same physician.

 

 

This was a free event that is open to the general public. Please click here to register with Eventbrite to reserve your spot at no charge. You can also contact Cara Kelterborn at (226) 339-8201.

Speakers:

  • Patty Vamvakitis Kehagias, HonBScTox, BScPhm, Pharmacist.
    Chronic Pain Management: A Paradigm Shift in Light of the Opioid Crisis.
  • Dr. Michelle Skop, PhD, RSW, Assistant Professor, Faculty of Social Work, WLU.
    Exploring the Health Care Experiences of People with Fibromyalgia: A Body Mapping Study.

Each presentation will be about 30 minutes, followed by a brief question period.

There will be a 10 minute break between each presentation.

Poster (pdf): Click here to view/download our poster.

Location:

School of Pharmacy, Room 1004 (main floor)
University of Waterloo
10A Victoria Street South
Kitchener, Ontario N2G 1C5

Parking at the School of Pharmacy will be provided at no charge to participants.

Click here for parking directions (pdf)
NOTE that the intersection at King and Victoria streets is now open.

This was a free event that is open to the general public. Please click here to register with Eventbrite to reserve your spot at no charge. You can also contact Cara Kelterborn at (226) 339-8201.

Click here for information about our previous workshops.

1 in 5 Canadians struggle with chronic pain

Pain is invisible.

People with chronic pain often:

  • feel misunderstood;
  • feel alone in their suffering;
  • find that their pain is questioned by family, friends and/or medical professionals.

Chronic pain:

  • is pain that doesn’t go away after three months;
  • may be intermittent (occurring on and off);
  • may vary with intensity during the day, weeks, months or years;
  • may be persistent;
  • may result from a known cause (such as surgery or injury) or as a consequence of a disease process (such as rheumatoid arthritis).

Many times the cause of chronic pain is unknown.

Two of the major, non-cancer types of chronic pain are:

  • Musculoskeletal Pain
  • Neuropathic Pain

People who take an “active” role in learning and practicing coping behaviors tend to experience less:

  • Social Isolation
  • Psychological Shifts
  • Work/Career Shifts
  • Self-redefinition
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