What is ME?
ME stands for myalgic encephalomyelitis -- a very serious, complex, multi-systemic disease. Studies have shown it affects the immune, endocrine, cardiovascular, autonomic and central nervous systems. in the U.S., it is often referred to as CFS or ME/CFS. For more info, please check out my "What is ME/CFS" information page.
How and when did you come down with ME?
I became suddenly ill with ME after a severe case of mononucleosis when I was 24 years old. You can learn more about my story in my original blog post, found here.
Have you been tested for other illnesses that can mimic ME, such as MS, lupus and Lyme disease?
Yes. Prior to my diagnosis of ME/CFS, I had to rule out a multitude of other illnesses, including MS, lupus, diabetes, myasthenia gravis and depression. I did not test positive for Lyme through standard lab tests, but I did test positive for Lyme through a specialty lab called Igenex. However, two years of antibiotics and several Lyme treatment protocols regretfully did not lead to any improvements. You can read more about my experiences with Lyme in my blog post A Note on Lyme Disease.
What treatments have you tried?
I've tried hundreds of different treatments over the years, and have spent my entire life savings trying to get well. You can find an incomplete list of some of the treatments I've attempted here. Please note, however, that this is a partial list only, and has not been updated in a couple years.
In your 2009 ME/CFS testimony to the Chronic Fatigue Syndrome Advisory Committee (CFSAC), you mentioned you were engaged. Have you gotten married yet, or are there any wedding plans in your future?
Unfortunately, Jim and I are not yet married and there are no set wedding plans in the immediate future. Our wedding is on hold until our health improves. We live in different states about 2,000 miles apart, and we are both currently too sick to travel or pick up and move. Jim was able to fly out here to surprise me and propose, but it was an enormous effort on his part and took a toll on his health. So, as much as we'd love to get married now, it will have to wait until one or both of us is feeling much better. Then we'll both be dancing down the aisle. Or wheeling down it. Whatever the case may be. :)
Why did you call your blog Dreams at Stake?
I actually didn't come up with that title entirely on my own. Several years ago, I submitted my story to the CFIDS Association of America out of frustration that they rarely represented the sickest patients. They asked if they could publish it and came up with that title. I liked it. It summed up the main reason I had written my story -- to plead for more action and to emphasize that people with ME are people with dreams and ambitions who didn't want to be sick, and who want to get well and live out their lives just like everyone else. I want to show that, even though this illness has taken away the fulfillment of many of our dreams, it has not taken away the dreams themselves.
How do you meet other bedridden ME patients?
I am not able to be online for any real length of time, so meeting other bedridden patients can be difficult. However, for those who are able, there are many social outlets where you can meet patients suffering from severe ME, such as Phoenix Rising, HealClick and Facebook social groups/community pages like Severe ME Chat and Support or the World of One Room. You can also read any of the blogs linked on this page, many of which are written by severe ME patients.
Where can I donate if I want to help with ME research?
Thank you for wanting to donate! ME/CFS research is highly underfunded, so we need as much support as possible and every dollar helps. There are various centers and organizations that are currently funding important ME/CFS research, such as:
- CFS Research Center at Stanford
- Dr. Ian Lipkin's ME/CFS Microbe Discovery Project
- Invest in ME (UK)
- Open Medicine Foundation
- Simmaron Research Center
How can I contact you directly?
You can reach me at dreamsatstake @ hotmail.com. I can also be contacted on Twitter and on Facebook. However, due to the limited time I can spend online, I'm not really able to respond to emails or messages at this time. I do read them all, though. Thanks for your understanding.