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Sunday, 06 March 2011 17:30 Last Updated on Thursday, 07 April 2011 19:49 Written by Administrator

Support - MAY 12

Many Patients Need Assistance

Like all illnesses, the severity varies from patient to patient. Dr. Paul Cheney stated he had evaluated over 2,500 ME/CFS cases and it can be a nightmare of increasing disability with both physical and cognitive components. Severe cases can have both an MS-like and AIDS-like clinical appearance. Dr. Dan Peterson, found that, “ME/CFS patients experienced greater functional severity than the studied patients with heart disease, virtually all types of cancer and all other chronic illnesses”. 20 years after the epidemic, Dr. Peterson said he has never had a patient that recovered from ME/CFS. An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy, haemodialysis, as well as those with HIV (until the late terminal stage), liver transplants, coronary artery disease, and other ailments, and again found ME/CFS patients had the lowest quality of life. Dr. Leonard Jason stated in a radio interview that ME/CFS “is actually more debilitating than just about any other medical problem in the world”.

The National ME/FM Action Network would like to thank all family members and other caregivers for the assistance they give those with ME/CFS and FMS.

The World may think you are only one person -
But to one person, you may be their world.

Author Unknown

Whether you are a caregiver by occupation or by circumstances, you must also take care of your own needs. All too often caregivers are so focused on looking after others, they neglect themselves. If there is a need for oxygen masks during a flight, the rule is to put the oxygen mask on yourself before assisting others. You must nurture yourself in order to be strong and supportive to others.

While some of the following articles are directed to caregivers of other medical conditions, their underlying principles may be of assistance.

Caregiving Articles

Overview for Caregivers
www.care-givers.com

Common Problems in Caregiving and Types of Help
The Caregiver's Handbook

For additional Assistance

There are many sources for support for Caregivers. In additions to the ones listed, many hospitals and churches have resources for caregivers.

National & International

Canadian Coalition for Family Supportive Policy

http://www.plan.ca

Canadian Healthcare Association

http://www.cha.ca

CFS Caregivers

http://cfscare.com

Family Caregiver Alliance

Caregiving National Center

http://www.caregiver.org/caregiver/jsp/home.jsp

For Parents of Sick and Worn-Out Children

http://home.bluecrab.org/~health/sickids.html

National Quality Caregiving Coalition

http://www.healthfinder.gov/orgs/HR3658.htm

Well Spouse Association

http://www.wellspouse.org

Regional

Several provinces have caregiver networks/associations that provide information on local caregiver supports and services. In provinces/ territories without such networks, government departments and certain community agencies can direct caregivers to local supports and services. We have tried to provide links to the organizations most likely to know about caregiver services and supports in each province/territory.

Newfoundland and Labrador

Nova Scotia

Nova Scotia Department of Health Continuing Care

http://www.gov.ns.ca/health/ccs

Caregivers of Nova Scotia

http://www.caregiversns.org

Prince Edward Island

PEI Health Programs and Services

http://www.gov.pe.ca/infopei/index.php3?number=13758

New Brunswick

Human Development Council Community Services Database

http://saintjohn.cioc.ca/results.asp?SubjID=1050