May 12 is CFS/ME awareness day. While officially I do not have either diagnosis, they are highly related to fibromyalgia, and I do consider myself now to have developed CFS. I'm pretty sure the only reason I haven't gotten that diagnosis is because I am too tired to go see my doctor about my newfound utter exhaustion. Also, when I tried to bring up my horrible new fatigue with my pain specialist, showing him a book that I'd been reading and pointing out that my symptoms match CFS even better than fibromyalgia (his particular diagnosis of me is Chronic Myofascial Pain Syndrome), he sniffed and wondered aloud why they choose to use a particular image on the cover of the book. Obviously he isn't interested in fatigue, and thinks the Dexedrine on my renewable prescriptions list is enough. ANY way.
I met this woman online, her name is Andrea. She's single-handedly starting an official campaign - the Blue Ribbon Campaign for CFS/ME. The brand-new and daily-expanding website is http://www.blueribboncampaignforME.org. Please visit the site to find out how you can help, to learn about these disorders and how they are neglected and stigmatized by some professionals and especially research funding. Once I heard Andrea's story and how she's doing this by herself from the discomfort of her bed - she suffers from severe CFS - I was inspired to get involved. I joined the facebook cause page, group and campaign event. Right now my personal contribution, aside from this blog post and promoting awareness online is to collect book and website recommendations from people who suffer from CFS/ME, Fibromyalgia and related disorders. Please send me your recommendations by replying to this post, by emailing firstname.lastname@example.org, twittering them to me @perpetualspiral or @blueribbons4me, or post them on the Facebook cause, group or event pages walls:
Blue Ribbon Campaign Facebook Group
Blue Ribbon Campaign Facebook Cause
Online Facebook Awareness Event - happening May 11- May17th
Questions: email info@blueribboncampaignforME.org
There is now a petition that you can sign: http://www.ipetitions.com/petition/empirical_defn_and_CFS_research to let the CDC know they need to get their ass in gear about these disorders. The United States is probably the worst offender when it comes to not recognizing and not funding CFS research. The world in general is just starting to come around, but the US is further behind than countries such as Canada and the UK. Ignorant doctors are still denying that these illnesses even exist, while 28 million people in the world are suffering - and suffering BADLY. Thousands of blogs online detail just how much CFS/ME/ and Fibromyalgia ruin lives and can even KILL. Sophia Mirza's story (http://www.sophiaandme.org.uk and http://www.investinme.org) is just one heart-wrenching example of what is going on all over the world. The ignorance and disbelief of doctors dramatically affects all of us, and can be absolutely devastating in the lives of the YOUNG people suffering from these illnesses. AYME (http://www.ayme.org.uk) is a website for children and young adult sufferers, and ChronicBabe is a site for young women who suffer with chronic illness.
Stop and think for a moment. Put yourself in the shoes of someone suffering from CFS, ME and/or Fibromyalgia. What would you have to give up in your life if you had chronic, unrelenting fatigue and/or pain? What if you could not get out of bed? You would have to quit working. You'd spend all your energy getting to doctor's appointments, only to possibly be told it's all in your head, it's due to stress. You'd have to get second and third and fourth opinions. Then you'd realize how few effective medicines there are, spend years trying to find ANYTHING that helps, and thousands of dollars on the few medications that do make a difference. If you are on disability program like I am, the newest of these medications aren't covered, and you would have to do without them like I do. You spend 10 years waiting for a drug like Ampligen to be approved, and even though its shown great results in testing, it's not getting enough funding and attention to be approved/re-approved by the FDA. Right now it's actually been withdrawn, so those who forked out $20,000 a year (like Mary) out of pocket are now suffering relapses, losing the jobs and lives they worked so hard to get back. Imagine your life being like that. Imagine being so sick, and finding absolutely NO help from the medical community, no understanding from the public at large, your employers, doctors and friends. Should 28 million people have to live like this, when there is so much that can be done?
It starts with awareness. It starts with people like Andrea and Sophia and myself having our stories and voices heard. It starts with people like YOU talking to other people and raising concern in the general community about these neglected disorders. Everybody I talk to lately knows somebody with Fibromyalgia or CFS. So let's do something about it! Sign every petition you see and pass it on to everyone you know. Wear a Blue Ribbon for CFS/ME Awareness week, May 11-17th. Get it on the Facebook sites or BlueRibbonCampaignforME.org. Educate yourself and other people. Google these terms: CFS, Chronic Fatigue Syndrome, M.E., Myalgic Encephalopathy, Fibromyalgia, CFIDS. There is an enormous amount of information on these illnesses out there on the internet. Access it. Click on all the links in this post. Learn the facts and help dispell the myths at CFSfacts.org Read blogs of people who suffer, like Maija, and put yourself in their shoes.
We need your help, desperately. From our beds and couches, we do all we can, but we need the support of healthy, aware people who care and want to help us. Don't be afraid to ask questions. Don't let your loved ones suffering with CFS/ME feel like it's all in their heads. Don't give up finding the right doctors, who will take the symptoms seriously and be willing to LEARN about the latest treatments and research. More and more people are being diagnosed with these illnesses, and though we have limited energy, together we have unlimited power. We will not stop fighting for ourselves and each other. Are you with us, or against us? Join us now. Be a part of the Blue Ribbon Campaign. Get in on the ground floor, do what you can, be meaningful.
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@perpetualspiral on twitter
Friday, May 01, 2009
I sometimes write things that I don't really mean or believe. These are not to be taken literally, nor as definitive statements about me or my beliefs. Thoughts and emotions are transient, and I reserve the right to change my mind, generalize, exaggerate, give strong opinions, or write other possibly offensive statements. I don't lie, but I may say something that's not true to check whether I believe it or not, or to make a point. Call it creative license. This is my blog, and do have the right to say what I want. I'm using it in creatively therapeutic ways. Whatever the reader may think of me and my words, please believe that my core intentions are always good and I never willingly hurt anyone.