Terri

Yesterday, I sat down to work on the questionnaire you sent as part of the consultation process around how the $11M annual fund of the “Social Development Partnership Program – Disability Component” (SDPP-D) should be administered.

Then the phone rang.

The caller was a young man named Ryan who suspects he has Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. His life started out very well. He finished school, got a good job, and was setting aside money to buy a house. One day he caught a bug. Now, years later, he is still not well enough to return to work. Ryan's symptoms include reduced activity levels, difficulties with concentration, crashing after exertion, feeling dizzy when standing, severe headaches, sleep dysfunction and sensitivities to chemicals. These are all common and disabling of symptoms of ME/CFS. He doesn't have a diagnosis. He doesn't have a doctor to help him work through the illness. His savings have run out and he doesn't have any source of income. The people surrounding him don't know about ME/CFS. What does he do now?

After I hung up the phone, I asked myself how SDPP-D funding would help Ryan.

Maybe, through some miracle, we could carve out a project that both helps our community and attracts the attention of decision makers. We tried hard in 2012 and did not succeed. Then we might get a few hundred thousand dollars for two or three years and have to start again. The government would think that the needs of ME/FM community had been addressed. But it wouldn't be true.

The problems in the ME/FM community have been ignored for so long that they have grown to massive proportions. There are 756,000 Canadians who already have a diagnosis of ME/CFS, Fibromyalgia or both. The cost to the Canadian economy is in the billions of dollars a year in lost productivity alone. The people who have been diagnosed, and the ones like Ryan who might be affected, need greatly increased support from the health care system, more investment in research, better access to social benefits, and more public awareness. These are the barriers they face as disabled Canadians. The SDPP-D might be part of the solution, but it would be only a small part. What is needed is major government attention and major government investment.

We at the National ME/FM Action Network are very proud of what we have accomplished since our founding 20 years ago. We spearheaded the development of diagnostic and treatment protocols for both ME/CFS and FM. The ME/CFS diagnostic protocol is so highly respected that sixty world class researchers and clinicians have written the US Secretary for Health and Human Services recommending that it be adopted as the US standard. We developed a Sourcebook for teachers of students with ME/CFS and/or FM. We intervened at the Supreme Court of Canada in a wrongful dismissal case. Our founder was given a medal by the Governor-General for her work. For a full list of our accomplishments prior to 2010, please visit our website. In the last few years, we have done a lot more including:

• hosting an international conference bringing clinicians and researchers from around the world to Ottawa
• publishing a guide for applying for CPP-Disability with ME/CFS or FM, a very important tool since many people with these illnesses have to navigate the system with very little support
• working with the BC government to establish a Complex Chronic Disease Program based at the Women's Hospital in Vancouver
• continuing to support the community across Canada through our website, facebook page, publications, newsletters, discussions and hotline.

We have done this work with very little money. We have been able to do as much as we have thanks to volunteers. Should so much responsibility be placed on volunteers? Our financial statements are available for public view at the Canada Revenue Agency's charity website. You will see that we rely on memberships and donations. The only government funding we have received in many years was a $23,100 grant from the Ottawa Trillium Foundation in 2011 to provide specific services at the international conference (translation, recording, newsletter). We have found it very difficult to raise money from outside sources. One reason is the lack of recognition of ME/CFS and FM. A recent study noted that fund-raising for ME/CFS, FM and Environmental Sensitivities was a cross-jurisdictional problem which the author attributed to stigmatization.

No, the SDPP-D is not the answer for Ryan or for the ME/FM community in Canada. The difficulties in the ME/FM community are so large that a separate consultation process is desperately needed. The ME/FM community needs to talk to government, and the government needs to talk to the ME/FM community. Partnership is needed. We are ready.

We have to invest our time and energy in activities that will yield benefits for our community. We will be turning our attention to the upcoming International Conference in San Francisco in March and the annual awareness day in May, along with our ongoing activities. Let me add that I have been invited to give a presentation at the International Conference. The presentation is based on statistics compiled from Statistics Canada's Canadian Community Health Survey. I would like to be able to report to the Conference that the Canadian government has recognized the importance of the statistics and has opened dialogue with us.

Margaret Parlor

President

National ME/FM Action Network

-------- Original Message --------

English follows

Bonjour,

Ce courriel fait suite à mon message du 21 novembre où j’invitais votre organisation à participer à notre processus de consultation (voir ci-dessous).

Ce courriel vous rappel qu’en complétant le questionnaire, vous nous aiderai dans le développement d’un volet de financement national au sein du Programme de partenariats pour le développement social, composante Personnes handicapées (PPDS-PH).  Je vous demande d’envoyer le  questionnaire compléter (en pièce jointe ci-dessous) à Terri Champagne ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) d’ici vendredi le 6 décembre, 2013.  Si vous souhaitez obtenir un autre format accessible, veuillez nous en informer.

Une fois que vous aurez compléter le questionnaire, nous vous contacterons au sujet de votre participation à une téléconférence, qui aura lieu au mois de décembre 2013 ou janvier 2014.  N’hésiter pas de nous contacter si vous avez des questions.

Nous vous remercions de votre attention.

Veuillez agréer l’expression de mes sentiments les meilleurs.

********************************************************************

Good day:

This is a follow-up to my email of November 21st in which, I invited your organization to participate in a stakeholder engagement process (see below).

This email is a reminder that the completion of the questionnaire will help us in our work regarding the development of a national funding stream in Social Development and Partnership Program – Disability (SDPP-D).  Please return your completed questionnaire (see attached Microsoft Word document) to Terri Champagne ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) by Friday, December 6th, 2013.  Should you require another accessible format please let us know.

Once you have submitted the questionnaire we will be in touch to arrange a time for the teleconference, which will take place either in December 2013 or January 2014.  Please contact us should you have any questions

Thank you for your attention.

Regards,

Genevieve Cardinal
Administrative Assistant / Adjointe Administrative

Programs Division / Division des programmes
Office of Disability Issues / Bureau de la Condition des Personnes handicapées

Income Security and Social Development/Sécurité du revenu et du Développement social

Department of Employment and Social Development/Ministère de l’Emploi et du Développement social
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it  

*NEW* Tel: 819-624-7667 / *NEW* Fax: 819-624-7680

From: Massie, Etienne-René [NC] 

Sent: 2013-11-21 2:14 PM
Subject: Invitation to Stakeholder Engagement Process / Invitation au processus de consultation des intervenants