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May 12 CFS/ME/FM Awareness Day - Government Data shows that Canadians with Chronic Fatigue Syndrome (CFS/ME),Fibromyaliga (FM)ar
May 12, 2009

RE: MAY12 - NATIONAL ME/FM ACTION NETWORK ME/CFS AND FMS STATISTICS INDICATE GOVERNMENT DATA SHOWS CANADIANS WITHS ME/CFS AND FMS ARE DISADVANTAGED
To:
Received: Monday, May 11, 2009, 5:15 PM

Dear Friends:
Below please find the statistics that we would
like you to distribute as widely as
possible.  They are attached in proper form but
for those who are not able to deal with
attachments, they are indicated below.  The first
percentage represents people who have either
ME/CFS or FMS and the second percentage
represents the general public. These figures will
also be available on our website at www.mefmaction.net
**These tables were compiled by Ms Margaret
Parlor, President, National ME/FM Action
Network.  Ms Parlor recently retired from a 30
year public service career where she worked as a
statistician, policy analyst and manager.
May 12 is not only National ME/CFS and FMS
Awareness Day but is also remembered around the
world.  Please take this day to bring awareness
to anyone you can.  You not only might help
someone who is ill but not aware of this possible
diagnosis but you can also assist us in spreading the word.
Lydia
Lydia E. Neilson, M.S.M.
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667     Fax (613) 829-8518
E-mail: ag922@ncf.ca
Web: www.mefmaction
>  Government Data shows that Canadians with Chronic Fatigue
>Syndrome (CF are disadvantaged
>The following information was extracted by the
>National ME/FM Action Network from the Statistics Canada
>datafile for the 2005 Canadian Community Health Survey.
>An estimated 334,000 Canadians have been
>diagnosed with CFS. Roughly one half were
>between the ages of  45 and 64, 30% were younger
>than 45, and 20% were 65 years old or older. Two
>thirds were female, and one third were male.
>Canadians with CFS showed a high degree of activity limitation.
>% of group reporting Canadians with
>CFS
>Canadians in
>General
>Need help – preparing meals 17% 3%
>Need help – getting to appointments and running
>errands
>32% 5%
>Need help – doing housework 35% 5%
>Need help – heavy household chores (spring
>cleaning, yard work)
>56% 12%
>Need help – personal care 9% 2%
>Need help – moving about inside the house 8% 1%
>Canadians with CFS also experienced socio-economic disadvantage.
>% of group reporting Canadians with
>CFS
>Canadians in
>general
>Permanently unable to work (ages 15-74) 18% 2%
>Annual personal income less than $15,000
>(ages 15+)
>44% 29%
>Food insecure 17% 5%
>Very weak sense of belonging to local community 19% 10%
>Tel: (613) 829-6667
>Fax No: (613) 829-8518
>512-33 Banner Road
>Nepean, Ontario K2H 8V7 CANADA
>(BN0 89183 3642 RR0001
>There are gaps in service to Canadians with CFS.
>% of group reporting Canadians with
>CFS
>Canadians in
>General
>Unmet health care needs over the previous 12
>months
>30% 11%
>Unmet home care needs over the previous 12
>months (ages 18+)
>14% 2%
>The National ME/FM Action Network has being
>telling government health officials for years that:
>• Chronic Fatigue Syndrome is a very disabling illness,
>• the illness has substantial impact on people's lives
>• there are significant gaps in health care delivery.
>Now Canadian government data confirms what we have been saying.
>Please share this important information with others. Help to make this
>information as widely known as possible.
>About the Canadian Community Health Survey
>The Canadian Community Health Survey is a major
>survey designed by Canadian health authorities to identify
>and monitor health issues affecting Canadians
>aged 12 and up. There were 27,100,000 Canadians in scope for
>the survey. Over 130,000 Canadians were interviewed.
>About the National ME/FM Action Network
>The National ME/FM Action Network is a
>registered charity working on behalf of Canadians with Myalgic
>Encephalomyelitis/Chronic Fatigue Syndrome and
>Fibromyalgia. Please visit www.mefmaction.net. These
>tables were compiled by Margaret Parlor,
>President. Ms Parlor recently retired from a 30 year public service
>career where she worked as a statistician, policy analyst and manager.
>
>Government Data confirms that Canadians with Fibromyalgia are very
>disadvantaged
>The following information was extracted by the
>National ME/FM Action Network from the Statistics Canada
>datafile for the 2005 Canadian Community Health Survey.
>An estimated 390,000 Canadians have been
>diagnosed with Fibromyalgia. Over half were between the ages
>of 45 and 64. Roughly a quarter were younger
>than 45 and 20% were 65 years old or older. Over 80% were
>female.
>Canadians with Fibromyalgia showed a high degree of activity limitation.
>% of group reporting Canadians with
>Fibromyalgia
>Canadians in
>General
>Need help – preparing meals 16% 3%
>Need help – getting to appointments and running
>errands
>28% 5%
>Need help – doing housework 35% 5%
>Need help – heavy household chores (such as
>spring cleaning or yard work)
>57% 12%
>Need help – personal care 7% 2%
>Need help – moving about inside the house 8% 1%
>Canadians with Fibromyalgia also experienced socio-economic disadvantage.
>% of group reporting Canadians with
>Fibromyalgia
>Canadians in
>general
>Permanently unable to work (ages 15-74) 14% 2%
>Annual personal income less than $15,000
>(ages 15+)
>43% 29%
>Food insecure 11% 5%
>Very weak sense of belonging to local community 13% 10%
>Tel: (613) 829-6667
>Fax No: (613) 829-8518
>512-33 Banner Road
>Nepean, Ontario K2H 8V7 CANADA
>(BN0 89183 3642 RR0001
>There are gaps in service to Canadians with Fibromyalgia.
>% of group reporting Canadians with
>Fibromyalgia
>Canadians in
>General
>Unmet health care needs over the previous 12
>months
>26% 11%
>Unmet home care needs over the previous 12
>months (ages 18+)
>11% 2%
>The National ME/FM Action Network has being
>telling government health officials for years that:
>• Fibromyalgia is a very disabling illness,
>• the illness has substantial impact on people's lives
>• there are significant gaps in health care delivery.
>Now Canadian government data confirms what we have been saying.
>Please share this important information with others. Help to make this
>information as widely known as possible.
>About the Canadian Community Health Survey
>The Canadian Community Health Survey is a major
>survey designed by Canadian health authorities to identify
>and monitor health issues affecting Canadians
>aged 12 and up. There were 27,100,000 Canadians in scope for
>the survey. Over 130,000 Canadians were interviewed.
>About the National ME/FM Action Network
>The National ME/FM Action Network is a
>registered charity working on behalf of Canadians with Myalgic
>Encephalomyelitis/Chronic Fatigue Syndrome and
>Fibromyalgia. Please visit www.mefmaction.net.
>****These tables were compiled by Ms Margaret
>Parlor, President, National ME/FM Action
>Network.  Ms Parlor recently retired from a 30
>year public service career where she worked as a
>statistician, policy analyst and manager.
Lydia E. Neilson, M.S.M.
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667     Fax (613) 829-8518
E-mail: ag922@ncf.ca
Web: www.mefmaction 
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Here are some of the best on the web for ME/CFIDS/FM/MCS/HepC and Stopping Stopping Psychiatric Abuse :
http://www.immunesupport.com    Largest Research Library Worldwide, forums & natural supplements
http://www.mefmaction.net/   Canadian & Changing Canadian laws
http://www.cfids.org/   American CIFDS Org
http://www.ncf-net.org/index.html   National CFIDS Org. more directed to Research & funding
http://www.fibrohugs.com   Large support site & info
http://www.cfids-cab.org/MESA/index.html US, has CDN Definitions
http://www.co-cure.org/index.htm US & CDN, smaller site
http://www.care2.com/c2c/group/fm_cfs Care2 FM/CFS group
http://www.mindfreedom.org  Stopping Psychiatric Abuse
f I Can't Dance Is It Still My Revolution
http://www.lloydwright.com   NATURAL ALTERNATIVES FOR HEP C (and some for ME/CF
http://www.youtube.com/user/HeppersHelper

Like all illnesses, the severity of M.E./CFS varies from patient to patient.  Dr. Paul Cheney stated he had evaluated over 2,500 ME/CFS cases and it can be a nightmare of increasing disability with both physical and cognitive components. Severe cases can have both an MS-like and AIDS-like clinical appearance. Dr. Dan Peterson, found that, “ME/CFS patients experienced greater functional severity than the studied patients with heart disease, virtually all types of cancer and all other chronic illnesses”. 20 years after the epidemic, Dr. Peterson said he has never had a patient that recovered from ME/CFS. An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy, haemodialysis, as well as those with HIV (until the late terminal stage), liver transplants, coronary artery disease, and other ailments, and again found ME/CFS patients had the lowest quality of life. Dr. Leonard Jason stated in a radio interview that ME/CFS “is actually more debilitating than just about any other medical problem in the world
http://www.mefmaction.net/Caregivers/tabid/84/Default.aspx
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Watch the ME/CFS Sleepydust video, it is one of the few that can get much of what it is like to exisit with to communicated to those who do not have it:
http://www.youtube.com/watch?v=r0w9-eQ_fKQ
The video aims to help the friends and family of ME/CFS (including Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CF, and Post Viral Fatigue Syndrome) sufferers understand the illness and what their loved ones are going through. To view a clearer, larger version of the video, visit: http://www.sleepydust.net/me-cfs-chro...
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Posted: Tuesday May 12, 2009, 2:33 am
Tags: care society canadian fibromyalgia fatigue syndrome supports homecare disadvantaged supportive myalgic encephalomyelitiskchronic reportme/cfs/fm [add/edit tags]

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Cheryl Sunshine Benson
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