What impact does ME/CFS Awareness Day have?

Here is a very interesting post by Patrick over at Quixotic: My M.E. Blog that I thought was worth reblogging here so my readers could mull over his questions:

What impact does ME/CFS Awareness Day have?

Did we make an impact?  It’s hard to know whether the message is spreading outside of our community or if we’re just passing the message around inside our own echo chamber.  I have to believe that we’re making small but steady strides, but it’s hard to make a big impact on public awareness when there’s so much noise competing for people’s attention.  And if we do get people’s attention, what exactly is our message?
 
I’ll get to that in a second, but first let me back up.
 
Sometimes I feel like there’s more that I could be doing to help our community.  Other times I wonder: isn’t it enough to just be looking out for myself and my family?  After tending to my own health issues, I’m not sure how much more of me is left to give to community issues.  I suspect that’s a feeling that many of us face.  So if we’re all struggling to get by, how do we build an impactful movement? 
 
And yet we all see these large, grassroots efforts being undertaken by other patient communities.  (Think MS, with its huge charity bike rides, funding drives, etc.)  Aren’t MS patients in a similar situation, with little leftover energy to give to the community?  
 
I suspect that the major awareness and fundraising efforts put forth by other patients communities are driven, in no small part, by the work of doctors, nurses, family, friends and loved ones who support the patients — not just the patients themselves.  So it begs the question: why not us?  Why haven’t we organized the same support network that would be essential for larger awareness and fundraising drives?  
 
Part of the reason is that our illness is so poorly understood that many of us can’t even get our own families to take it seriously (not counting me).   There’s this kind of frustrating circularity to our problem here.  
 
ME/CFS is very poorly understood in the medical community—>Why is it poorly understood in the medical community? —>  Because researchers can’t agree on the root cause or biomarkers? —>  Why can’t researchers agree? —>  Because there’s no research funding to chase promising leads —> Why is there no research funding? —> Because there are no major funding drives/charities/organizations —>  Why are there no major funding drives/charities/organizations? —> Because ME/CFS is not viewed as a “serious” illness by most —> Why is it not viewed as a “serious” illness by most? —>  Because ME/CFS is very poorly understood in the medical community —> [Back to the beginning.]  
 
So the challenge is to break this cycle.  These awareness campaigns are designed to break the cycle at the second to last step above: the “serious illness” step.  In theory then, having solved that issue, the remaining problems would gradually solve themselves in the reverse order, working backwords to the beginning of the list.  
 
But the thing to keep in mind is that the awareness campaign is only the first half of that step.  Why?  Because it’s not enough to just make people more aware of something.  People are never motivated to act on something merely by being aware that it exists.  An awareness campaign basically just primes people’s minds to be more receptive to the full message that follows.  It makes people curious enough to want to learn more.  
 
Then the question is, what are we doing to follow up on the awareness campaign?  What are we doing to educate people once they’ve become receptive to the message? 
 
So the next challenge is to develop our actual message.  Because you have to admit, we don’t really have a unified message.  We all have different levels of functionality, different theories of etiology, and we all seem to be pursing different treatments.  We confuse ourselves with our own cross-talk, so how are we supposed to present a unified, intelligible message to the average, healthy Joe?
 
That’s the next step.  That’s the challenge that I believe we need to be working on now.

Tomorrow is International M.E. Awareness Day.

Tomorrow is International M.E. Awareness Day. There are many events happening around the world, both online and in person. You can google your area to see if there is anything going on, but what I ask is something simple:

Please make an effort this month to talk about this disease. Look for opportunities to raise awareness. Don’t worry about being a “downer” or bringing up an awkward, depressing subject. Let people know that there is an illness that stops life in its tracks and has no approved drug treatments and very little funding for research. Explain that this has nothing to do with laziness, depression, tiredness or burn-out. Explain that there are test abnormalities, but doctors aren’t taught about the (possible/probable) etiologies of this disease so most do not recognise it and certainly don’t know what to test for or how to treat it. Make it known that patients languish in their homes ~ or, more likely, a family member’s home ~ are passed from dismissive specialist to thieving charlatan and back again, use up all their resources, and usually reach a point where they are trying to just survive because it is too exhausting to research treatments and search for medical help. Warn people that ME is often accompanied by crippling neurological issues, autonomic dysfunction, new allergies and multiple chemical sensitivity (MCS), postural orthostatic tachycardia syndrome (POTS), chronic migraines, irritable bowel syndrome (IBS), fibromyalgia (FM), mast cell problems (MCAD), sleep dysfunction and, of course, the depression and anxiety that would be hard to avoid with a diagnosis like this. These are all debilitating conditions in their own right, so drawing awareness to them is just as valuable.

As with many awareness campaigns, ribbons are worn to show support – blue for ME/CFS, purple for FM, and green for MCS. What I like about this is, it might bring up the conversation. Most people recognise the pink ribbon representing breast cancer awareness or the yellow Livestrong wristband which supports cancer survivors, but perhaps you will encounter someone who asks, “What does the blue ribbon stand for?” And then you can launch into your educational lecture. 🙂

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A few things going on around the world:

Niagara Falls will be illuminated in blue tomorrow, May 12th, from 9:45-10:00pm EST to raise awareness to M.E. From 10:15-10:30pm EST the falls will be purple for fibromyalgia (FM) and from 11:00-11:15pm EST the falls will be green to draw attention to multiple chemical sensitivity (MCS). You can watch it on their live webcam. Or try: http://www.earthcam.com/canada/niagarafalls/

In London, there is the “All Fall Down for M.E.” protest outside the Houses of Parliament at the Old Palace Yard.

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In Victoria, Australia at Melbourne University, there is an ME/CFS Educational Fun Run.

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Bob Miller is skydiving to promote ME research in Lodi, California.

The Irish ME/CFS Association is hosting four talks by Dr. Ros Vallings from New Zealand next week.

There are  five screenings of Voices from the Shadows across three continents in May.

Read this article by Mark at Phoenix Rising to get all the details about these events and many more.

Finally, consider writing to your local paper to raise awareness. Read this post by the ME/CFS Self-help Guru for inspiration.

Thank you to everyone in my life that has talked about this baffling illness, raising awareness one person at a time. Thanks to my father for talking to his staff about this disease and to my mother for talking to her dog park friends about it and to Z. and E. for explaining my situation to other people I know and to my husband for constantly making excuses for my absence, trying to educate others on what is going on and raging at medical professionals’ and society’s ignorance, allowing me to be angry by proxy since I don’t have the energy for it.

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