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!