Posts Tagged ‘problem’

***Want to win a free print of my latest image, The Blue Ribbon?  Read on to find out how you can enter!!***

ME Awareness Week continues!  Catch up on the story with the first, second and third posts!

Spoon Theory - a self portrait

Spoon Theory – a self portrait

For anyone not convinced of the seriousness of ME, let me present you with a quote from Dr. Nancy G. Klimas in a Q & A article from The New York Times on Chronic Fatigue Syndrome.  Dr. Klimas serves on the board of directors for The International Association for Chronic Fatigue Syndrome and treats both CFS patients as well as patients with HIV and AIDS.  In 2009, she made a comment comparing CFS to HIV and AIDS.  A reader expressed anger over her comment, calling it alarmist and saying it was making CFS sound like a much more deadly disease than it is.  Dr. Kilmas had this to say [emphasis mine]:

“…But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

In Between Awake And Asleep - a self portrait

In Between Awake And Asleep – a self portrait

This is the point in my explanations where I like to remind people (and myself) that I am lucky; I am on the mild-to-moderate end of the ME illness spectrum.  It can get much, much worse.  There are thousands of people afflicted with severe ME, on constant morphine drips, in agonizing pain, earplugs in every second of the day, unable to tolerate the slightest light or sound, unable to feed or dress themselves or even use the bathroom on their own.  People die from ME.  That is why it is so very, very dangerous when the medical community trivializes our disease, insists it’s psychosomatic, insists there’s nothing physically wrong with us.  YES.  Yes, there is, doctors.  Those who have died from ME, and there are many, many examples, frequently show the same inflamed areas in the brain when autopsied.  While I’m not sure I’m ready to say ME is purely a neurological disease, it sure seems to be a big piece of the puzzle.

When the medical community has nothing to offer you, you become your own doctor, your own detective and your own science experiment.  You try anything and everything that might help; medications, physical therapy, diet changes, supplements, “Eastern” medicine, energy healing, modifying your sleep habits, psychotherapy; anything.  One year when I was still able to work a part-time job, I spent over a quarter of my pitiful earnings on doctor copays, medications, supplements and treatments.  That amount hasn’t changed much since then.

While there have been some setbacks recently for the ME community, there has also been forward momentum.  I know of at least two ME documentaries currently in production.  I had the chance to work with one of the films, Canary In A Coal Mine, and get involved with when it was raising funds through Kickstarter by donating the printing rights to some of my ME-themed images for them to use as backer rewards.  Everyone was shocked and delighted when the Canary film more than quadrupled its initial goal in its 30-day campaign!  I take this overwhelming support as a sign that our voices are finally starting to be heard, and that, perhaps, this indicates the winds are finally starting to change.

The Fragile Blossom That Opens In The Snow - a self portrait.  "“Courage is not the towering oak that sees storms come and go; it is the fragile blossom that opens in the snow.”  – Alice M. Swaim

The Fragile Blossom That Opens In The Snow – a self portrait. “Courage is not the towering oak that sees storms come and go; it is the fragile blossom that opens in the snow.”
– Alice M. Swaim

I never write posts about subjects like this with the intent to garner pity or complain.  That is never my intention.  What I want is to bring awareness to this extremely misunderstood, unappreciated and devastating disease by speaking frankly and candidly about it.  We are suffering and dying and there are few people who know about it and even fewer who are doing anything about it.  The squeaky wheel does get the oil.  Enough noise needs to be made and enough public outrage needs to be expressed over how the medical community (as a group; there are certainly exceptions and wonderful doctors working alongside us) is ignoring us and indeed doing harm.

It can feel daunting to attack such a huge, glass mountain.  It does not matter that you are only one person and that I am only one person.  Gandhi, Nelson Mandela and Martin Luther King Jr. were each just one person.

I genuinely believe this is a problem science could solve if enough effort was made to solve it.  At the very, very least we could find treatments to alleviate the symptoms.  We have tackled other serious diseases.  But we need the funds and we need the public to demand action.  And we need a name that isn’t dismissive and demeaning.  So this last part goes to the CDC:

Hey, CDC, change our fucking name already.

Exoskeletonation - a self portrait

Exoskeletonation – a self portrait

To do my part in raising awareness about ME, for the month of May, I am donating 50 percent of profits from all my sales to The Microbe Discovery Project, a group working to solve the mystery of ME and find a cure for those afflicted..  And what do I sell?  Well, what do you want?  Because my images come from the frameable to the wearable and in every price range.
museum-quality, fine art prints
iPad/iPhone/iPod covers
blank greeting cards
post cards
shirts and hoodies
wearable art
throw pillows
INTROSPECTIVE: my eight-week, on-line, course of self-discovery through photography

Also, in honor of this day of raising awareness, I’m holding a contest to win a beautiful, 10″ x 15″, museum-quality print of my latest image, The Blue Ribbon; an underwater representation of the struggle that living with ME can be.  Your print will come on beautiful, shimmering, pearlized, archival paper.  And all you have to do is tweet!

The Blue Ribbon

The Blue Ribbon, model: Katie Johnson – enter the giveaway to win a print of this image!

Ready to tweet?  Use any of the following!

Curing baldness gets 4x more funding than ME/CFS, but no one ever died of baldness    


ME/CFS knows no social or economic boundaries; it affects all equally w/out mercy.    
ME/CFS in not in our heads & cannot be cured with exercise & a better attitude.    
ME/CFS is not a “female” disease; 20% of sufferers are male.    
ME/CFS isn’t just about being “tired,” it ravages every single part of the body.    

ME/CFS can be just as deadly as MS, HIV and AIDS, yet it is largely ignored.    


More exercise and a better attitude will not cure ME/CFS.    


We’re not chronically fatigued, @CDCgov. We have myalgic encephalomyelitis.    

Tweeting multiple statements will count as extra entries, so enter as many times as you like.  However, tweeting the same statement multiple times will not count.  And that will probably just annoy the people reading your feed, so don’t do it. 😉  I will choose a random winner from all entries on May 20th and announce the winner here!

Catch up on the story with the first, second and third posts this week about ME.

Thank you to everyone for reading and participating!  If you have had your own experiences with ME, CFS, fibro or any other chronic illness and you’d like to share your story, please leave it in a comment!

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