MAY12 - Letter to Chief Statistician - WE NEED YOUR PARTICIPATION Canadian Commu

[Guest guest]

Reposting

 

Letter to Chief Statistician - WE NEED YOUR PARTICIPATION Canadian Community

Health Survey (CCHS) has dropped ME/CFS, FM and MCS from the Community

Health Survey.

 

 

Dear Friends:

 

We discovered last week that Chronic Fatigue Syndrome, Fibromyalgia and

Multiple Chemical Sensitivities had been dropped from the Canadian Community

Health Survey (CCHS) questionnaire starting in cycle 4 (2007). Our

association, which represents Canadians with ME/CFS and FM, had not been

consulted.

This is the first we knew of the deletion.

 

Cycles 1, 2 and 3 of CCHS had provided some very valuable information about

the conditions. We noted a significant increase in reported cases between

Cycles 1 and 2. StatCan published a report using Cycle 2 data estimating that

1.2 million Canadians have been diagnosed with one or more of the three

illnesses and they carry a high degree of disability -

_http://www.statcan.ca/bsolc/english/bsolc?catno=82-003-X20060039526_

(http://www.statcan.ca/bsolc/english/bsolc?catno=82-003-X20060039526) .

 

We recently used Cycle 3 data to explore the issue of food security. We saw

that these three illnesses scored lower than other chronic illnesses on

always having enough to eat. People with these illnesses accounted for almost

20% of people reporting that they often did not have enough to eat. The CCHS

statistics raise many important health and social policy issues. Therefore we

were shocked that the questions were dropped.

 

We have two concerns. The first is to get these questions reinstated as

core questions asap. The second is to sort out why these questions were

dropped. The fact that the Public Health Agency of Canada (PHAC) was consulted

and

did not include these widespread, severely disabling, poorly understood,

poorly served illnesses on its priority list for inclusion is extremely

troubling.

 

We understand that Dr. Ivan P Fellegi, Chief Statistician of Canada, will be

reviewing the data and contacting Statistics Canada to discuss procedures

for changing questionnaire content. PHAC is a very important player in

determining what chronic illnesses are included in CCHS. We hope we will have

the

full support of PHAC in getting the three very important illnesses reinstated

as core content.

 

We have drafted up a letter to Ivan Fellegi, Chief Statistician of Canada,

asking that the questions about ME/CFS, FM and MCS be reinstated on the

Canadian Community Health Survey.

 

 

 

 

 

Please consider being included in this letter and ask you get back to our, Margaret Parlor at margaret.parlor and authorize us to

add you to our request letter. We have included the National ME/FM Action

Network's signature block as a sample. We might send it as an email followed

by

a hard-copy.

 

Lydia

Lydia Neilson, M.S.M.

President CEO

NATIONAL ME/FM ACTION NETWORK

 

Please see letter to Dr. Fellegi which we intend to send below:

 

 

May 21, 2008

 

 

Dr. Ivan P Fellegi

Chief Statistician of Canada

Statistics Canada

150 Tunney's Pasture Driveway

Ottawa, ON

K1A 0T6

fellegi

 

 

Dear Sir

 

Re: Including Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical

Sensitivities

in the Canadian Community Health Survey

 

 

 

The Canadian Community Health Survey for 2001, 2003 and 2005 included

questions on Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical

Sensitivities.

 

CCHS showed that over a million Canadians have been diagnosed with one or

more of these conditions. An article in Health Reports vol 18 no 1 documented

their dependency for activities of daily living, their high level of

dissastisfaction with life and their heavy use of the health care system. We

are

currently exploring the issue of food security. Canadians with these

conditions represent just under 5% of the population but almost 20% of those

who

reported in 2005 that they often did not have enough to eat.

All in all, the data raises important policy concerns.

 

This information from CCHS is exceptionally important to our organizations.

We use the information to understand the needs of our communities and in our

discussions with health and social agencies. CCHS information is cited in

a study on environmental sensitivities published by the Canadian Human Rights

Commission, in a book on CFS and FM by a leading Canadian physician, and in

educational and advocacy material.

 

It has just come to our attention that these three questions were dropped

from CCHS starting in 2007. We were not aware that the information was being

discontinued. Our organizations were not consulted. Dropping the questions

leaves a terrible gap in information about these very serious and

underestimated conditions.

 

We understand that the purpose of CCHS is to provide timely, reliable,

cross-sectional estimates of health determinants, health status and health

system

utilization across Canada. We believe these questions are needed to ensure

sound health and social policy.

 

We therefore ask that the questions about Chronic Fatigue Syndrome,

Fibromyalgia and Multiple Chemical Sensitivities be reinstated on the CCHS from

2009

forward.

Sincerely,

 

 

National ME/FM Action Network

3836 Carling Avenue

Nepean, ON K2K 2Y6

Lydia Neilson, M.S.M. President & CEO

_www.mefmaction.net_ (http://www.mefmaction.net/)

ag922

 

Lydia E Neilson M.S.M.

President/CEO

National ME/FM Action Network

_http://www.mefmaction.net_ (http://www.mefmaction.net/)