B14.2 Serving the ME/FM Community_Margaret Parlor

Serving the ME/FM Community

June 4, 2014 Margaret Parlor President, National ME/FM Action Network Www.mefmaction.com

Disclosure of commercial interest Presenter Disclosure Presenter:

Margaret Parlor

Relationships with commercial interests: • • • •

Grants/Research Support: None Speakers Bureau/Honoraria: None Consulting Fees: None Other: None

CFPC conflict of interest

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 Diabetes Heart disease MCS Cancer FM CFS Stroke Alzheimers MS Parkinsons 0

200

400

600

800

1000

1200

1400

1600

1800

2000

Impairment Need help with tasks, %, Canada, 2010 Total

Diabetes

MCS

Cancer

Heart disease

FM

CFS

Stroke 0

10

20

30

40

50

60

Health care utilization (1) 10+ Consultations with family doctor in past year, %, Canada, 2010 Total

Diabetes

Heart disease

Cancer

MCS

Stroke

FM

CFS 0

5

10

15

20

25

30

35

Health care utilization (2) 5+ consultations with specialist or other doctor in past year, %, Canada 2010 Total

Heart disease

Diabetes

MCS

Stroke

Cancer

FM

CFS 0

5

10

15

20

25

30

35

Reported unmet health care needs %, Canada, 2010 Total

Diabetes

Heart disease

Cancer

Stroke

MCS

CFS

FM 0

5

10

15

20

25

30

35

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

All respondents Diabetes MCS Cancer Heart disease FM Stroke CFS 0

5

10

15

20

25

30

Very weak sense of community belonging %, Canada, 2010 Total

Diabetes

Cancer

Heart Disease

Stroke

MCS

FM

CFS 0

2

4

6

8

10

12

14

16

18

20

Food insecurity %, Canada, 2010 Cancer

Heart disease

Total

Diabetes

Stroke

FM

MCS

CFS 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!