Chronic Fatigue Syndrome/ Myalgic Encephalomyelitisclick here to skip to blog2012
I have been struggling with health problems since 2004, when I was 21. Every time I traveled my health seemed to plummet. But I have always been inspired and dedicated and never thought I'd wind up where I am now. So I kept going, kept pushing myself to do everything I wanted to do. My trip to India was the last straw it seems. For the past 4 years (2009-2013) I have been really sick. I started a wedding photography business when I realized I could no longer hold a full time job, thinking that it was a blessing in disguise because once I got my health back I would be making money doing something I loved. After a year things were looking really good business wise, but it took me longer and longer to recover from the intense physical requirements of shooting a wedding. When I couldn't recover in a week in order to shoot the next wedding, I decided I had to give it up which was pretty heartbreaking because of what it represented. That was in 2010. For the last 2 years I have been bedridden much of the time, my health and mobility slowly decreasing. I'm now forced to rest in bed most of the day, saving up energy for little bits of projects like writing this, or working on some photographs for a half hour or an hour on a good day.
After seeing countless doctors and specialists in every area of medicine I could find for 8 years since I was 21, having blood drawn over and over again and literally hundreds of tests done, I was finally diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis by Dr. Andy Kogelnik at the Open Medicine Institute in Mtn View CA. But there is no cure. I will be taking some experimental drugs that have shown promise in limited trials. Let's hope for the best.
The Symptoms of Chronic Fatigue Syndrome (CFS), or Myalgic Encephalomyelitis (ME), vary from patient to patient. The most fundamental symptom is debilitating fatigue that worsens after physical or mental exhertion. But fatigue is much too mild a word. I like to compare the state I'm in now to staying up for two nights in a row while fasting, then getting drunk. The state you would be in on the third day- hung over, not having slept or eaten in 3 days- is close, but still better than many ME/CFS patients feel every day. "Total body shut down" would be a better phrase because you are at a point where your body physically does not have the energy to keep going.
Patients with ME/CFS experience something that is often called Post Exertional Malaise.. Most people, including people afflicted with many other illnesses improve with exercise. Even after an intense workout or a long day of work, they recover after a night's rest. Patients with ME/CFS experience a severe worsening of physical symptoms during or after exercise. We tend to have a certain amount of energy reserves (far less than healthy people) often called an "energy envelope". If we push ourselves to keep going past this, the symptoms worsen significantly and it often takes days or weeks to return to where we were before. Some patients are permanently worsened. No amount of willpower, happiness or excitement changes this. I can be out of my mind with bliss and still run out of energy to work on something. There are some new studies examining this unique symptom and they are finding that patients with ME/CFS react differently to exercise. We will see much more on this in the near future and hopefully see a diagnostic test emerge from this research soon.
One of the terrible things about ME/CFS is that because of the lack of understanding in the general public, most patients are constantly told to "suck it up", or that "exercise makes other people feel better" etc. Which creates a lot of guilt and shame for patients who already desperately want to do more but physically cannot. Not to mention not feeling understood. And it also pushes people to do more than they should, the results of which can be catastrophic. This is why we need more awareness.
I spent the first years of this illness pushing myself. I thought it would eventual go away, and I tried to just keep going and do as much as I could. I didn't want to surrender to it, or let it shape my life. If I had known more about ME/CFS and the consequences of over exertion, I may not be nearly as sick as I am today. Though who knows, I probably would have been optimistic and tired to do everything I did anyways.
I am now bedridden most of the time. I can't walk much because of circulation and muscle problems in my legs and arms. I don't even have the energy to sustain computer work or conversation with people for more than short amounts of time. But some people are much worse than I am. Many people wind up hospitalized unable to move or even speak, sometimes with constant and excruciating pain. Sometimes people's immune systems start over-reacting to everything from food to common chemicals to even light. Many people around the world with ME/CFS are thrown into mental wards and given anti-psychotic meds. There's a story of a girl who was thrown into a swimming pool by a mental ward in an effort to "snap her out of it" by forcing her to "try". She nearly drowned. And surprisingly, it did not improve her symptoms.
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis affects 4 million Americans. Twenty-five percent are estimated to be severely affected, being bedridden with little to no functioning. This population has been shown in studies to have the lowest functioning of any chronic illness, comparable to end-stage AIDS or end-stage renal failure. There is no known cause or cure though researchers have found unique abnormalities in the immune system, circulation system, ATP (energy) production, physical response to exercise, and autopsy findings report dorsal root ganglionitis - a type of inflammation of the spinal cord. Some people improve with time while others are bed-bound for decades. It is estimated that 4% of those with severe ME/CFS have any type of recovery.
To die of this illness is atypical; however, to hover in an in-between state where one experiences a 'living death' for years or decades is quite typical.
Despite the ravages of ME/CFS, it is one of the least funded illnesses. Multiple Sclerosis is thought to be on average less severe in it's impact on patients' quality of life, and effects half the number of people. Yet it receives 100 million dollars per year from the Government for research while ME/CFS received 15 million last year. HIV receives 28 billion$ per year. With so little funding, there is no hope for the millions of people suffering from this illness.
“My H.I.V. patients for the most part are healthy 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 care for their families.
I split my clinical time between the two illnesses [AIDS and CFS], 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 [to 4 million] people in the United States alone, has had a small fraction of the research dollars directed towards it.” —Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami
“[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University
As a nation, we need to invest in ME/CFS. It costs America an estimated 25 billion dollars per year in lost productivity and medical care. ME/CFS destroys millions of American lives, tears families apart and shatters dreams as people are isolated in bedrooms, nursing homes or left homeless with very little medical or societal understanding or support. All genders, races, ages, and socio-economic backgrounds are effected. Anyone could wind up sick and just drop off the map. And we will likely loose everything that person would have become or contributed to the world.
As a nation, we need to invest in ME/CFS.
If you are able, please consider making a donation to the Open Medicine Institute (OMF) www.omf.ngo They are leading the world in funding ME/CFS research right now. They have a science board packed with award winning scientists from around the world including Nobel Laureates and James Watson himself (of Watson and Crick). And this board is directed by the famous Stanford scientist Ronald W Davis who has spent his life tackling "unsolvable" problems through the invention of new technology and new approaches to thinking about these problems. He has won many awards for his work including being named one of the greatest living inventors by The Atlantic
. But Ron doesn't have the funding he needs to pursue all of his ideas, or develop experiments that are as complete and thorough as he would like.
Please consider giving whatever you can today and if possible make it a monthly contribution, which really helps sustain their research and solidify their future.
You have the power to help millions of profoundly suffering people all around the world just waiting to get their lives and loves back. Thank you.