News Release

January 14, 2002

United Kingdom Breakthrough for Chronic Fatigue Syndrome

Canada's national Chronic Fatigue Syndrome organization, Compassion in Action, is shouting the news! The United Kingdom has confirmed what an estimated half million Canadians already know. Chronic Fatigue Syndrome (CFS) is real and devastating and the profound exhaustion is one of the least terrible symptoms of the illness. CFS, also known as Myalgic Encephalomyelitis (ME), includes symptoms such as a depressed immune system, cognitive difficulties and pain throughout the body. After independent review, a new UK report has concluded that new research and new forms of treatment must be developed for this illness that mainly strikes people first in their 20s - 40s.

Anthony Pinching, professor of immunology at Barts and the Royal London as well as the deputy chair of the CFS/ME Independent Working Group which wrote the report, declared: "This is one of the beastliest conditions I know. At the moment, we don't give patients a good deal, and then they are left to cope with this alone, and left to suffer." After losing their health, some patients are driven to suicide as they also lose their job, lose the support of their friends and family, and have to use up their savings to cover treatment themselves and pay their bills.

Action for ME is the UK equivalent of Canada's Compassion in Action. Upon the release of the report, their Chief Executive stated: "inaction due to ignorance or disbelief in the condition is not excusable".

Fibromyalgia (FM) shares symptoms with CFS/ME and is a more common condition. FM symptoms also include pain in over 18 points found all over the body. FM affects an estimated 1.2 million Canadians, according to data from Canadian studies and the US Centre for Disease Control. In the Ottawa area an estimated 50,000 people suffer from this condition. Since others can't see their pain, FM usually goes unnoticed. The lack of recognition and treatment has forced many FM sufferers to turn to the Arthritis Society for information and support in managing their symptoms, even though the cause and nature of the pain is different.

Canadians with CFS/ME or FM know that patients are usually told it's all in their head. The difficulty lies with the lack of tests that can measure fatigue, pain, and cognitive impairment. With today's medical technology, only the immune system's failure is objectively measured. Unlike any other illness, CFS/ME and FM patients have to prove they are ill - to their physicians, family, friends, insurers and employers.

How is Canada doing? The National FM/ME Network and a national Health Canada committee reached a consensus on the clinical definition of the illness during the summer of 2001. In the words of The Honourable Alan Rock, Minister of Health, "The development of draft clinical definitions for ME/FM is a milestone in the fight against this complex and tragic condition".

Canada still needs to take action in the fight against CFS/ME and FM. Physicians need to be trained in how to recognize and treat these illnesses. New support systems need to be set up to provide help to people who can be incapacitated for months or even years. Most important is the need to find the cause and a cure.

Compassion in Action is working to encourage new Canadian research as well as education programs for patients, their families and their health care professionals. Compassion in Action is also developing a model treatment centre in Ottawa that can then be replicated in communities across Canada.

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Media Contacts:

Dr. Paul Grof
Compassion in Action Director and Vice President, Leader of Medical Advisory Committee
Affective Disorders
Royal Ottawa Hospital
722-6521 ext. 7025

Dr. Pat Faloon
Doctor of Chiropractic
Ottawa Physical Health Centre
230-3028

For further reference:

Compassion in Action
Web site: http://compassioninaction.ca

BBC News Release
http://news.bbc.co.uk/hi/english/health/newsid_1755000/1755070.stm

National ME/CFS & FM Clinical Definitions & Treatment Protocols
http://www3.sympatico.ca/me-fm.action/defs.html

Action for M.E. - (UK)
http://www.afme.org.uk/

The Ontario Fibromyalgia Association - Part of the Canadian Arthritis Society
http://www.arthritis.ca/local%20programs/ontario/sda/ofa/default.asp?s=1

National Fibromyalgia Awareness Campaign (US)
http://www.fmaware.org/

The CFIDS Association of America
http://www.cfids.org/

CNN Health Matters - December 25, 2001
http://www.cnn.com/2001/HEALTH/conditions/12/24/chronic.fatigue/home.html

 

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