Welcome to my blog

My name is Dylan, and I am a 30-year-old artist, writer and creator. I am living with a chronic illness called CFS-ME, or chronic fatigue syndrome/myalgic encephalomyelitis. My illness is in the lower end of the severe category. This means I am mostly bedbound and almost always housebound.

 

CFS-ME is a poorly-understood illness for a variety of reasons.

• The general public doesn’t understand CFS well, because the name seems to imply a vague, “hypochondriac” illness, or just “being tired.”
• Doctors don’t understand CFS well, because they don’t receive much education on it or other poorly understood or rare diseases. Most of their knowledge is outdated, incomplete, or comes from studies that have been, by now, at least partially discredited.
• Research scientists don’t yet understand CFS because we are still developing the tools to precisely understand what goes wrong inside the cells of people with CFS.
• People with CFS understand the CFS experience and symptoms, but we are often mystified by changes in our condition and the seemingly capricious nature of the illness. Some people have gotten very sick or died, and some people have spontaneously recovered; we don’t know exactly why. We are often at a loss to figure out how to help ourselves.

What is important to know about CFS-ME?

Given all of the confusion, what should the general public know about CFS-ME? If you know someone with CFS, what are the basic facts that you should be aware of?

• Chronic Fatigue Syndrome was once thought to be psychological because we did not yet understand it.
• Since at least 2015, we have had compelling physical evidence for the existence of CFS-ME as a distinct biological disorder.
• Scientists are still learning about CFS. Currently it is very difficult to get a CFS diagnosis and it takes many patients many years.
• CFS causes profound fatigue and pain that is not relieved by sleep.
• CFS has a “hallmark” symptom called Post-Exertional Malaise (PEM) which occurs after overexertion of any kind and results in a dramatic loss of functioning.
• CFS is usually very disabling, but level of disability varies between individuals. Severe CFS is comparable to the level of disability produced by late-stage AIDS.
• CFS typically limits earning potential and may make gainful employment impossible, and it is difficult to get SSI/SSDI.
• Many popular internet resources dealing with CFS contain inaccurate, outdated information and potentially harmful advice.
• CFS is under-researched and underfunded.

To learn more about each of these issues, see “What is important to know about CFS/ME?” in my About section.

My experience with CFS-ME

Pre-illness, 2006. Totally washing dishes instead of paying rent.

I was a full-time college student when my illness began, and I had a great on-campus job as a research assistant for my professor. However, I became more and more tired over time and found it hard to walk between my classes and my car. One day I was at the far end of the quad at University of Maine at Orono, where I was studying environmental ethics, and I realized I could not walk back to my car in the parking lot. My legs just didn’t work.

It was a beautiful day that day, but I felt disconnected from everything. I sat down in terror on a big rock between the quad and the dining hall and just freaked out internally. I didn’t know what to say to anyone or how to get help. I didn’t feel dizzy or sick. I simply didn’t have the energy to move. I stayed for as long as I could, watching the shadows lengthen. Finally, I somehow got up the strength to get up and slowly and haltingly walk half a mile to my car.

It was soon necessary for me to leave college due to my fatigue, and by the time I dropped out, it was a huge relief to do so. I had been spending all my off hours in bed trying to recover from my days on campus.

I currently live at home with my mother and stepfather on a beautiful rural lake in Maine. I have a few local friends but often only see people- usually my family members- for a few minutes each day, and I spend most of my time in bed with my laptop and my cat Dvon. CFS is often tremendously isolating.

My goal: End CFS and find a cure for me and others

My goal is to raise awareness, generate understanding, and support the search for a cure for all people with CFS-ME and similar diseases.

In my post I have loved the stars too fondly, you can see clearly why every patient with CFS is so important to finding out what causes CFS and how to cure it. In the absence of adequate information on our disease, we have become scientists, each with a study group of one. We also share and discuss recent CFS research, educate doctors, encourage positive and incisive CFS journalism, and support the push to discredit deeply harmful and flawed studies which are harming us every day.

Are you ready to help us?

 

Further Resources

Visit MEPedia, a crowd-sourced knowledgebase about CFS-ME
Check out The Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative
Read the wonderful description of CFS-ME from the Open Medicine Foundation