Serving the ME/FM Community

June 4, 2014

Margaret Parlor President, National ME/FM Action Network

Www.mefmaction.com

Disclosure of commercial interest

CFPC conflict of interest

Presenter Disclosure Presenter: Margaret Parlor Relationships with commercial interests: • Grants/Research Support: None • Speakers Bureau/Honoraria: None • Consulting Fees: None • Other: None

No conflict of interest

National ME/FM Action Network is a registered charity – funded by memberships, donations and on-line contests. I am an unpaid volunteer.

Ontario business case proposal project Funded by the Ontario Ministry of Health and Ontario

Trillium Foundation. & managed by MEAO and AOHC

The 2010 approach to ME/FM/MCS

isn't working for patients

Or for - Health, Social and Education system - Employers and the economy - Taxpayers - Ontarians in general

Canadian Community Health Survey

Conducted by Statistics Canada >60k ordinary Canadians, more or less random Excludes under 12s, residents of facilities, armed forces,

remote areas, reserves

Chronic Conditions

We are interested in long term conditions, which are expected to last or have already lasted 6 months or more and that have been diagnosed by a health professional. Do you have ...” (about 20 conditions listed) An individual can report >1 chronic condition

Reading the charts

Chronic Fatigue Syndrome Fibromyalgia Multiple Chemical Sensitivities Total Survey Population Comparison groups: Diabetes, Heart Disease, Cancer,

Stroke Long bars are bad.

Prevalence Thousands, Canada, 2010

Parkinsons

MS

Alzheimers

Stroke

CFS

FM

Cancer

MCS

Heart disease

Diabetes

0 200 400 600 800 1000 1200 1400 1600 1800 2000

Impairment Need help with tasks, %, Canada, 2010

Stroke

CFS

FM

Heart disease

Cancer

MCS

Diabetes

Total

0 10 20 30 40 50 60

Health care utilization (1) 10+ Consultations with family doctor in past year, %,

Canada, 2010

CFS

FM

Stroke

MCS

Cancer

Heart disease

Diabetes

Total

0 5 10 15 20 25 30 35

Health care utilization (2) 5+ consultations with specialist or other doctor in

past year, %, Canada 2010

CFS

FM

Cancer

Stroke

MCS

Diabetes

Heart disease

Total

0 5 10 15 20 25 30 35

Reported unmet health care needs %, Canada, 2010

FM

CFS

MCS

Stroke

Cancer

Heart disease

Diabetes

Total

0 5 10 15 20 25 30 35

Permanently Unable to work % Canada, 2010, age 15-75

CFS

Stroke

FM

Heart disease

Cancer

MCS

Diabetes

All respondents

0 5 10 15 20 25 30

%, Canada, 2010

CFS

FM

MCS

Stroke

Heart Disease

Cancer

Diabetes

Total

0 2 4 6 8 10 12 14 16 18 20

Very weak sense of community belonging

Food insecurity %, Canada, 2010

CFS

MCS

FM

Stroke

Diabetes

Total

Heart disease

Cancer

0 5 10 15 20 25

Old model of care

Void in service with a few tiny islands of assistance Treatment based on Cognitive Behaviour Therapy – pat on the head Graded Exercise Therapy – kick in the behind

Bio-psycho-social model

New model of care

Bio-psycho-social model

Balanced recognition of - biological reality

- social impact - self-help contribution

Bio Help for ME/CFS Sleep Pain Fatigue and post-exertional malaise Cognitive problem Managing distress Orthostatic / cardiovascular Gastro / urinary Allergies / sensitivities Infection / immune system

Tools for Primary Care

Canadian Consensus Criteria for ME/CFS and FM IACFS/ME Primer for Clinical Physicians The Ontario Business Case Proposal asks for : Center of Excellence - Hub and spokes - supporting family doctors - supported by research

We hope you will work with us to improve services to the ME/FM/MCS

community

Thank you!