NETWORK MEETS WITH SENIOR ADVISOR TO HEALTH MINISTER

 

On June 6, Margaret (National ME/FM Action President) and Maureen MacQuarrie met with Leah Canning, Director of Policy in the Office of the Minister of Health for Canada.

Here is a recap of their discussions.

Leah

Thank you for meeting with Maureen MacQuarrie and me on June 6th to discuss issues around Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.  

The theme of the meeting was "Moving the Yardsticks for ME/CFS".   At the meeting, Maureen and I circulated a document listing a number of ways that the Health Portfolio could move the yardsticks forward.  I am attaching an electronic version of that document, but please note that I have made two amendments.  

1)  There was an article in the Ottawa Citizen on June 29 discussing the Public Service Disability Insurance Plan.  The article noted that 48% of current claims were related to mental illness.  Chronic Fatigue Syndrome was included on the list of mental illnesses which, of course, is absolutely inappropriate.  We have contacted the President of the Treasury Board to investigate the particular circumstances in this case.  The problem is that the ME/CFS community encounters this kind of misinformation over and over again.  Not only are patients dealing with a serious illness, they are dealing with serious misinformation.  We are therefore asking the Health Portfolio to fund a public awareness campaign that attacks the misinformation that is so prevalent and so frustrating.  

2)  The Network has found funding to translate the IACFS/ME Primer into French.   However, there are a number of other documents that we would like to see translated.  We have removed specific mention of the Primer translation from the June list, but are seeking assistance with translation more generally.  

I will be meeting with the Public Health Agency of Canada later this week to follow through on some of the issues raised at the June meeting.

A meeting with CIHR has not yet been scheduled.  CIHR asked for additional time to investigate options.  Meanwhile, the Network has been looking at per patient funding of research into other illnesses, which gives us an indication of the level of funding that would be fair and equitable for ME/CFS and Fibromyalgia research in Canada.  

I will keep you informed on discussions and developments.

Thank you again for meeting with us.  


Margaret

Margaret Parlor
President

National ME/FM Action Network
www.mefmaction.com

 

---

 

Discussion Points for Meeting

with Leah Canning, Director of Policy

Office of the Minister of Health

June 6, 2012, 1 pm, 16^th Floor, Brooke Claxton Building

“Moving the Yardsticks for ME/CFS”

(Amended July 9, 2012)

 

Where we can Move the Yardsticks

Web information: There is little information about ME/CFS on any of the government health-related webpages.  Sadly, one of the only related references is a write-up of a research conference, published in Chronic Diseases in Canada, which Maureen co-wrote with Physician Dr. Eleanor Stein in 2009.

 

• Will the Health Portfolio work with the ME/FM community to develop web information that is informative, timely and balanced?

• Will links to the Overviews of the Canadian diagnostic and treatment protocols for ME/CFS and FM (English and French) on the National ME/FM Action Network site be reinstated? (Firstly, they are hard to find on the health website and secondly some links are missing and others point to an Australian site.)

• A new Primer for clinical practitioners has just been released by the IACFS/ME bringing together the latest, best diagnosis and treatment protocols.  It is based on the Canadian protocols.  Could this be referenced from health websites?

• Can resources be found to translate important documents into French?  (amended 2012-07-09)

• Will the information on the Awareness Day for ME/CFS and FM be returned to the Health Promotion calendar?  May 12th has been recognized by both the federal parliament and in perpetuity by the Senate.  This is the 20th year for recognition.

Public Awareness: (added 2012-07-09)  The ME/CFS community is constantly battling misinformation, such as the article in the Ottawa Citizen on June 29, 2012 showing CFS as a mental illness under the Public Service Disability Insurance Plan.

• Will the Health Portfolio fund a campaign to make the public more aware of ME/CFS and to counter misconceptions that have been allowed to prevail?

Surveillance:  PHAC presented analysis of the 2005 CCHS data at the IACFS/ME conference, Ottawa Sept 2011, which brought to light major issues around ME/CFS.

• Can the PHAC analysis be made publicly available through a journal or on the web?
• Can the study be updated with the 2010 CCHS data?
• Can parallel studies be undertaken for Fibromyalgia and for Multiple Chemical Sensitivity?

In addition

• What further surveillance/analysis is possible or planned?  Food insecurity, health care utilization and economic burden are obvious topics.
• Why hasn't the valuable analysis undertaken by the National ME/FM Action Network of CCHS 2005 and 2010 been given more prominence?
• The CDC is working on standardized record formats for CFS.  Will Canada at least monitor this work?

Research: CIHR provided $0 for ME/CFS research funding in 2010-11 and apparently in 2011-12 as well.    There seems to be a vicious cycle.  ME/CFS does not have an established research community.  Without an established research community, it cannot apply for research grants.

There are many exciting areas for research – epidemiology, etiology, clinical care, social services and health service delivery.  The IACFS/ME conference showcased many areas of interest but, to the best of our knowledge, CIHR did not attend.

• Given that part of CIHR mandate is to build research capacity in underdeveloped areas, why hasn't CIHR been proactive in encouraging research into this topic?
• There is a initiative underway to look at healthcare for the next generation.  The next generation of healthcare will have to address illnesses like ME/CFS and FM.  How is CIHR ensuring that the study reflects these emerging illnesses?

Health Care Delivery: Health Canada directly delivers health care to many Canadians.

• Will Health Canada adopt the Canadian protocols when providing health care?

Communications: Progress will best be made by working together.  We need communication

• to oversee progress and developments (e.g. regular scheduled meetings like this one, or the establishment of an advisory council to the Minister.)

And in particular, we need communication

• to develop web content
• to kick-start research
• to support surveillance
• to optimize health care delivery