News - NETWORK NEWS

In January, 2022, we wrote the federal ministers for Health, for Disability Inclusion, and for Mental Health and Addictions outlining ME/FM priorities. These email were published in Quest 131 and are copied below.

Over the last year, we received just one reply. It addressed the specific issue of opioids. That email is also included at the bottom.

Emails to Ministers
Sent Jan 10, 2022

To The Honourable Jean-Yves Duclos, Minister of
Health
email: hcminister.ministresc@hc-sc.gc.ca
phone: 613 957-0200

The National ME/FM Action Network would like to welcome you as Minister of Health.
Your mandate letter calls on you to strengthen the health care system and to look at long-Covid. These issues are very relevant to Canadians with Myalgic Encephalomyelitis, Fibromyalgia or both.
According to the Canadian Community Health Survey, nearly a million Canadians have been diagnosed with ME (called Chronic Fatigue Syndrome on the survey) and/or FM. Nevertheless, there are minimal health services available across the country. There is minimal research funding from CIHR. There is minimal information available on the PHAC or HC websites. Many people are suffering as a result of these gaps.
ME and FM are acquired chronic conditions. Infection is a frequent trigger. Fatigue, pain, and cognitive difficulties are frequent symptoms. These are some of the symptoms of long-Covid. We see this part of long-Covid as being in the same family of illnesses as ME and FM.
We would like to see three things happen moving forward:

An immediate review of the CIHR funding for ME and FM. They have not been fairly funded and this needs to be discussed and fixed.
An immediate review of ME and FM information on the HC and PHAC websites. The information is inadequate and needs to be discussed and fixed.
Inclusion of the ME/FM family of illnesses when working with the provinces and territories to strengthen the health care system. The redesign that is called for in your mandate letter is a perfect opportunity to address ME/FM services
We are attaching a copy of our latest newsletter where we delve into these issues in more detail.
We hope that you will use the information we have provided as you develop your budgets and plans for the coming year.
-- 

Margaret Parlor
President
National ME/FM Action Network

To The Honourable Carolyn Bennett, Minister
of Mental Health and Addictions and Associate
Minister of Health
email: mhaminister.ministresmd@hc-sc.gc.ca
phone: 613 948-3265

Re: Health Issues affecting the ME/FM Community

The National ME/FM Action Network would like to welcome you back to the Health Portfolio. We appreciate your interest in ME and FM over the years and we remember your attempt to provide research funding for ME and FM when you were in the Health Portfolio previously.

Progress for ME and FM have been slow over the years, but today Canada has the perfect opportunity to leap forward. The ME community has just put to rest the idea that people can simply exercise their way to health. This means that the health and disability systems have to think of ME and related conditions more seriously.

The emergence of long-Covid, which is in the same family as ME and FM, adds numbers and urgency to this. Meanwhile, the Health Portfolio is called upon to strengthen the health system which positions them for action.

We know that you have been asked to focus on mental health and addictions. For years we have been fighting the perception that ME and FM are mental health issues. It should now be clear that they are physical health issues. However, like any physical health issue, they can have mental health aspects. For opioids, we want to make sure that people dealing with pain have access where appropriate and do not have to turn to less desirable alternatives.

All these issues are discussed in our latest newsletter (attached).

-- 

Margaret Parlor
President
National ME/FM Action Network

To The Honourable Carla Qualtrough, Minister of
Employment, Workforce Development and Disbility
Inclusion
email: Carla.Qualtrough@hrsdc-rhdcc.gc.ca

Re: Disability Issues affecting the ME/FM
Community

The National ME/FM Action Network would like to welcome you back as Minister for Disability Inclusion.

We know that progress has been made on disability issues over the last few years. This progress aimed primarily at established disabilities. Coming from the non-established disability side of the disability community, we see the progress that was not made.

We went back to the submission we made on September 29, 2016 for the public consultations on the proposed new disability legislation and found that our ideas were not incorporated. We asked for a review of disability programs. We asked for amendments to the Disability Tax Credit eligibility criteria because they are selective and non-inclusive. This became highly visible when the attempt was made to base Covid disability payments on the DTC. We asked for increased disability literacy in the public service since we rarely feel that our conversations with government get beyond a beginner level. We asked for a more holistic disability statistics program. And we asked that the government think about the value of organizations like ours.

We are very glad that your mandate letter and the disability inclusion plan provide the opportunity to take on this next generation of disability issues.

We would like to share with you our latest newsletter which includes our 2016 submission.

 -- 

Margaret Parlor
President
National ME/FM Action Network

-----------------------------------------------------------------------------------------------------

Response to January 10, 2022 Correspondence to Carolyn Bennett

  September 6, 2022

Dear Margaret Parlor,

Thank you for your correspondence’ of January 10, 2022 addressed to the Minister of Health, the Honourable Jean-Yves Duclos and your correspondence addressed to the Minister of Mental Health and Addictions and Associate Minister of Health, the Honourable Carolyn Bennett. I have been asked to reply to you directly on their behalf. While I cannot determine why there has been such a long delay in receiving your letter, it is unacceptable. Please accept my sincere apologies.

First and foremost, I want to commend you for all the work that you are doing with the National ME/FM Action Network. Your advocacy is invaluable to the people that you are representing and I am grateful for the time that you took to share your concerns and your newsletter with us.

The Government of Canada recognizes the profound impacts and challenges faced by Canadians who live with chronic pain and conditions that may have chronic pain as a symptom, such as those living with Myalgic Encephalomyelitis or Fibromyalgia (ME/FM). In 2019, Health Canada established the Canadian Pain Task Force (CPTF) to better understand chronic pain as well as identify potential actions to prevent and manage it, including the benefits and risks of opioid use.

The relationship between pain, opioids, and opioid-related harms in Canada is complex and actions taken to mitigate opioid-related harms have had negative unintended consequences for some people who live with pain. We are aware that some people in Canada have been unable to access opioid medications, and others who previously relied on opioids to manage their pain have been unable to continue their medications, or have had significant adjustments to lower their prescriptions, sometimes against their will. Increased stigma, anxiety, and fear surrounding opioid use for pain management has compounded these challenges and created additional barriers for people living with pain.

In May 2021, the Task Force released its third and final report – An Action Plan for Pain in Canada. The report provided over 150 recommendations for priority actions, so that people with pain are recognized and supported and that pain is understood, prevented, and effectively treated across Canada. Some of the key recommendations to be addressed by Health Canada relate to public education on chronic pain, in order to help reduce stigma and increase available knowledge about resources and tools for both the public and healthcare providers. The report also highlighted the importance for improved awareness about the risks associated with rapid opioid discontinuation and tapering, and the dangers of opioid de-prescribing in the absence of shared decision-making with patients. We are looking forward to continue working with pain stakeholders to implement some of the Task Force recommendations.

Health Canada firmly believes the medical needs of patients, including which prescription medications they should be taking, are best determined through shared decision-making between the patient and their health provider based on the unique needs of the individual. We will continue to work with stakeholders and partners to promote patient-centered interventions for the treatment and management of chronic pain as well as the complex relationship between physical and mental health.

Thank you again for taking the time to write to Minister Bennett. We will continue working to address pain and opioid use in Canada and to ensure people have the support they need.

Yours sincerely,

Jennifer Novak

Executive Director

Opioid Response Team

Controlled Substances and Cannabis Branch

Health Canada

Canada.ca/opioids // Canada.ca/opioides