Why is it Important to Raise Awareness for ME/CFS ?

How would you feel if you woke up one morning and couldn’t go about your daily routine? If you couldn’t do the sports you used to do, or walk your dog, or even play with your children ?

Well, that’s what happens to many people who contract Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS). They become ill with a strange kind of flu and never get better. Many struggle to balance work and home responsibilities. For some just going to the grocery store is a grueling task. There are also those who get progressively worse and become bed-ridden. Can you imagine this ? Can you imagine your life changing this drastically ? Well, it’s happened to 28 million people around the world1, and the estimates for Canada and the US are approximately 1.5-2 million people. That’s 1 in 300 people with some form of ME/CFS.

For the most part, ME/CFS attacks people during their most productive adult years : between the ages of 20 and 50. For some reason it is more predominant in women than in men- a 4:1 ratio- but children can become victims to it as well. It affects people of all ages, races and socioeconomic status.

There is no known proven cause, but many theories. There is no cure either. Not yet. ME/CFS is not a new condition. It has been documented as an illness for centuries, but its incidence has increased considerably over the past 50 years. Despite this, ME/CFS does not have the exposure other high profile illnesses such as cancer and diabetes have. In addition, it is not being taken seriously and that is why research dollars are not being directed into trying to help find a cure.

One of the problems is psychiatrists are still labelling ME/CFS as a psychiatric illness- a boon for insurance companies because benefits are smaller for psychiatric illnesses- even though the World Health Organization categorizes ME/CFS as a neurological illness.

Many studies have shown that ME/CFS is a multisystemic illness affecting the neurological, endocrine and immune systems. According to Professor Malcolm Hooper (Faculty of Medicine, University of London, 2009)2 there are 4,000 papers on the biomedical aspects of ME/CFS but they haven’t been read, evaluated or addressed by government advisors. In addition, he states that “Unexplained illnesses have cropped up all through the history of medicine. MS was hysteria, diabetes was hysteria. Parkinson’s disease was hysteria. All wrong. All insulting. All accepted.”

Another problem lies with medical practitioners. Despite the fact that ME/CFS is a biomedical condition, the majority of doctors do not want to treat it, because of the complexity of the illness and also because it is time-consuming to understand/treat.

Despite its prevalence and seriousness, ME/CFS is still one of the least funded of all illnesses in Canada and the United States. More money is spent each year studying hay fever than ME/CFS.

It’s very important to inform as many people as we can about ME/CFS because we need to push for government funding. We also need to make sure the money goes where is it needed- looking into the biomedical causes of and treatment for ME/CFS instead of therapy and exercise. As more people become aware of this illness perhaps more money will become available for it.

What can you do?

  • Contact your local Member of Parliament 3 and ask him/her to ensure that government funds go into the right kind of research.
  • Try to educate at least three people about ME/CFS and the impact it has on daily living.
  • Save a Blue Ribbon ME/CFS image to your computer : http://www.blueribboncampaignforme.org/Blue_Ribbons.html


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