Today, May 12, is International Awareness Day for ME/CFS (myalgic encephalomyelitis/and Chronic Fatigue
Syndrome) and Fibromyalgia.
Groups around the world dedicated to finding treatment, a
cure and provide hope for this illness have engaged businesses, governments and
individuals to light up their buildings blue, purple or green to shine a light
on this illness that can be as debilitating as multiple sclerosis, lupus, COPD,
heart failure, late-stage AIDS and end-stage renal failure.
I was diagnosed with CFS in 2006 after six years of trying
desperately to learn what had caused me to go from a practitioner of martial
arts, a volunteer in the Big Brother, Big Sister program and full-time worker who
never missed a day of work for sickness to working part-time from home as someone
unable to make it through the day without multiple naps, frequent muscle and
joint aches, swollen lymph nodes, unfreshing sleep and even the inability to
take a shower without needing a nap.
Even after receiving my diagnosis, it took another seven
years for me to find a doctor who would help me. Most dismissed me as “difficult.” One even refused to allow me to mention my
illness during our visits and then was surprised when I mentioned I was looking
for another doctor. There is no cure for CFS and finding a regime of treatments
that can provide some relief takes a lot of trial and error, tweaking, and, as symptoms
change or worsen, many start overs. It
is a tiring process for sure.
So it is heartening to me to find so many people working so
hard to provide education and awareness about the illness and seek many
creative ways to raise funds for research.
People are hosting sleep-a-thons, shooting documentaries, and selling
teddy bears and T-shirts, to name a few things, all in hopes of raising
awareness and funds for various research programs across the world. In the United States, efforts are underway to
get Congress to add $50 million to the research budget for ME/CFS at the NIH
over 5 years, which would triple the funding now available. Here is a link to an article outlining more
about that process: http://www.cortjohnson.org/blog/2014/05/11/fifty-million-dollar-chronic-fatigue-syndrome/
Research into the illness and it causes is so important. Recently, I learned of a 12-year-old girl who
may have CFS. She has been in trouble
for missing a lot of school lately due to her unrelenting fatigue. She also is missing out on one of her
favorite things – doing agility with her dog.
She is devastated. She wants to
participate in her life. I have yet to meet
the girl, but our agility teacher conveyed her story to me as last year a local
hospital did an article on integrative medicine in which I talked about my
struggles with CFS and how I had found a doctor that was willing to help. Our teacher shared the article with the girl
and she and her parents are hoping to visit my doctor to see if they can get
some answers. I hope they can. I hope the answer is not CFS.
My heart breaks at the thought of a 12-year-old girl having
CFS. People with CFS appear outwardly as
“normal” or not sick. The same goes for
children with CFS. Unfortunately, this
means adults are accused of being lazy or depressed and children are often
accused of just wanting to avoid school or told that they are just experiencing
growing pains. Forget that they are also
missing everything else in their lives.
As an adult, it has been extremely difficult to listen to
people not believe you, tell you that you are just being difficult, that they
resent you and get mad at you for all you cannot do and even say they don’t
want to be around you because your illness is just “too hard” for them. All when you are just trying to make it
through the day – or even a moment. As
an adult, I have gained some coping skills that help me navigate the illness,
or at least the ability to tell people they are out of line, if not always in the most polite manner. I cannot even
imagine being a child just learning the coping skills needed for making her way
through a normal life and having to endure that kind of torment – all while trying
to adjust to having an incurable illness.
Sure, some children diagnosed with CFS have gone on to
recover, but most do not. Some studies
have found up to 37 percent of children diagnosed with CFS recover, but, more likely,
they will experience periods of remission and relapse. For the rest of their lives.
This is why days such as today are important. Raising awareness. Raising funds. Perhaps, if $50 million in
funds for research over five years can be raised, a reliable way of making an
accurate diagnosis can lead to a way for a cure or at least better treatment
that won’t leave up to 25 percent of people suffering from CFS bed-bound,
unable to leave their homes or even speak out about their illness and the devastating
effect it has.
Today, we have placed blue lights in a room in our house
dubbed “The Globe.” Our way of showing
support for those suffering from this illness across the world. I also painted my nails blue. The color on the bottle says it’s “In Prompt
Blue.” I think it looks more like “Tardis”
blue. And, if I had a Tardis, I would
travel back in time to a place before I had this illness, pick up that
stronger, healthier version of me and get back in to travel through all of
space and time to find a cure for this illness in the hopes that no 12-year-old
girl ever has to miss out on a life for which she has only just begun dreaming.
For more information on CFS and Pediatric CFS please see the links below:
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