There’s a new complex chronic disease clinic in Vancouver that will conduct research and support doctors and patients dealing with illnesses like ME (Myalgic Encephalomyelitis) which is wonderful news. The clinic has a chance to win a $150,000 grant for medical equipment from the Aviva Community Fund. There’s also a current petition to encourage the federal government to fund more ME research.

This is where you come in!

How You Can Help

1. Vote between December 3 – 12/12

1. Register with Aviva: http://www.avivacommunityfund.org/ideas/acf13624 or log in using your Facebook account: https://www.facebook.com/AvivaCCDC?skip_nax_wizard=true
2. Between Dec 3-12: Hit the “Vote Now” button and vote!
1. Vote for “Medical equipment for a new chronic diseases clinic in Vancouver”. The clinic serves people with ME, FM, MCS and Lyme disease. The clinic could win up to a $150,000 grant for medical equipment.

Each registrant gets 15 votes total, but can only vote for a particular cause once a day. So you could vote a maximum of 10 times for the clinic.

Note that Aviva will send you follow up emails, but you can unsubscribe at any time or proactively uncheck your settings here http://www.avivacommunityfund.org/users/registration/profile.

2. Sign the Petition

Please also sign the petition to Canada’s Health Minister to fund research for people with ME. From that site: “Canadian research funding for ME/CFS in the last 10 years equals to 6 cents per patient per year for this disease.”

To sign, go to:

http://www.change.org/petitions/minister-of-health-of-canada-fund-research-for-patients-with-myalgic-encephalomyelitis

More on Why Your Help is So Needed

• ME or Myalgic encephalomyelitis is recognized as a disabling nervous system disease, according to the World Health Organization classification of diseases. There is no cure, the cause of the illness is still unknown and there are no treatments–only symptom management.
• Some experts in the field of ME/CFS say that this disease is just as disabling as progressive multiple sclerosis, congestive heart failure or late stage AIDS.
• The 2010 Community Health Survey calculated that over 411,000 Canadians have the disease, 23% more than in 2005 and a staggering 205% more than in 2001.
• No medical specialty is embracing this disease, resulting in patients left to their own devices or with a general practitioner who does not have the knowledge or time to deal with patients with this complex disease.
• Patients are often stigmatized, largely because of the misleading and inadequate other name for the disease: chronic fatigue syndrome. Many people living busy lives can feel fatigued. People living with ME feel sick, fatigue being only one aspect of the illness.
• Interest in researching ME is increasing and much work has been done in the last decade or so, but funding for research remains inadequate and imbalanced compared to other chronic illnesses.

On November 21, 2012, the Ministry of Social Development (MSD) announced the first phase of annualized earnings exemptions for people who are receiving the Persons with Disabilities (PWD) benefit. The idea of an annualized earnings exemption was proposed by a number of disability groups. The BC Coalition of People with Disabilities is pleased that MSD has acted on this recommendation.

The annual earnings exemptions will be phased in over the next year. In the first phase, which goes from January 1, 2013 to December 31, 2013, 5,000 people receiving PWD will be invited to participate. In the second phase, starting in January 2014, the annual earnings exemptions will be available to everyone receiving PWD.

As noted, only about 5,000 people will be part of the first phase of the new annualized earnings exemption. They will be receiving a letter from MSD in the near future, inviting them to participate in the new program. Participation is optional. According to MSD, participants in the first phase must have:

• Had the PWD designation for at least the past 12 months
• Received PWD in at least the past two consecutive months
• In at least one of the past 12 months, had earnings over $500 for families with one adult receiving PWD and $750 for families where both adults are receiving PWD.

These are the annualized earnings exemptions maximums, announced by MSD for the period of January 1^st to December 31^st:

• $9,600 for one-adult families, where the adult is receiving PWD
• $12,000 for two-adult families, where only one adult is receiving PWD
• $19,200 for two-adult families, where both adults are receiving PWD

For more information:

The link to the provincial government’s news release on the annualized earnings exemption is: http://www2.news.gov.bc.ca/news_releases_2009-2013/2012SD0029-001829.htm

You can also contact Advocacy Access at 604-872-1278 or toll free 1-800-663-1278

Do you have an opinion about the impact of canine friendship on the lives of people with disabilities/chronic health conditions? A new research project called “The Role of Dogs” is seeking input from people with disabilities living with service dogs OR PET DOGS as well as non-dog owners.

This study is being conducted by a research group at the School of Veterinary Medicine, University of California, Davis. If you have questions, contact Mariko Yamamoto, PhD at maryamamoto@ucdavis.edu.

To participate in the anonymous survey you must be 18 years or older and either:
1) a person with a disability OTHER than visual or hearing disabilities, or
2) a family member of service dog partners

For this study, service dogs are defined as “dogs that have received specific training to assist their partners with disabilities other than visual or hearing disabilities.”

Survey for people with disabilities:
http://www.surveymonkey.com/s/RQYZNHC

Survey for caregivers/family members of service dog partners:
http://www.surveymonkey.com/s/RMQJ6PV

Kindly share this information with others who may be interested in participating.