It is *International ME/CFS Awareness Day* so it's time to get embarrassingly earnest about my situation (and also to indulge in some irate text formatting).
First, please send a message to your congressperson today and ask them to send a staffer to our Capitol Hill briefing on ME/CFS next week. It will take one minute!
I've had Myalgic Encephalomyelitis (commonly known as Chronic Fatigue Syndrome) for eight years now. I made this short video about my daily life with this disease for the virtual concert #BedFest which was put together to showcase the lives/feels of people with ME/CFS last Saturday:
Should the video actually be titled, "Thank God for Cats"? Probably. Also THANK GOD FOR CATS.
As many of you know, most days I wake up, eat breakfast, and then spend part of the day shut in a dark room for 3-6 hours or more, depending, where I attempt to rest with no stimulation for as long as I can stand. When not "sarcophagusing" in that room, I still have to take it very easy. Because this disease punishes you for being active, everything I do, mentally, physically and emotionally, sets me back from my goal of eventually feeling better.
I go through periods where I can do things and go out, as long as I rest a lot and am careful not to overdo it, and one of those periods is likely when we've last hung out or I saw you at a comic show. But I also go through periods of months where I am mostly housebound and doing even minor household tasks makes my symptoms worse. As you can imagine, it is super grim and maddening.
What's difficult about this situation is not just the physical suffering. It's the loss associated with this disease and the knowledge that it doesn't have to be this way (see below for more on that point). I'd really, really like to be able to participate in the world outside of our apartment on a semi-regular (or even daily) basis. I'd like to be able to work full-time. I'd like to be able to work on comics regularly, or maybe have a kid, or a dog, or go for a walk around the neighborhood when I feel like it, or do the dishes without worrying that I'll pay for it in the coming days by becoming bedridden. I'd also really like to see you, my friends, family and cartooning comrades, and like, go to a movie. I say all this not in a bid for sympathy, but because I don't always talk about the reality of this situation, and after all, it's awareness day.
Over a million people in the U.S. have ME/CFS, and many of them have lower quality of life measurements than any other disease studied. 25% of patients spend part of their lives house- or bedbound. Less than 10% of patients recover, although some do improve over time. (I myself have thought I was seriously improving at times. Remember when I thought I was getting well enough to work part-time in a library?) In spite of this, the National Institutes of Health budget for research for this disease is outrageously tiny. Like, when I found out how small the budget is I almost punched a hole in our wall. ME/CFS is in the lowest 4% of diseases funded by the NIH, even though it's similar to other disabling diseases both in terms of how much it fucks up your life and its burden on the U.S. (medical costs + lost production costs our country $17-$24 billion annually).
The thing that drives me absolutely BANANAS, is that it doesn't have to be this way. It's not like they've been really pouring money into finding a treatment and just haven't found it. For years ME/CFS has been stigmatized and ignored by the medical community. Part of it is the name. "Chronic Fatigue Syndrome" just sounds silly and it's hard to grasp that many people with it live like they have late-stage cancer for decades. But also, for a long time, many doctors believed it was a psychosomatic illness. This likely has to do with the fact that there are no diagnostic biomarkers (yet), but another reason is that 75% of ME/CFS patients are women. Jennifer Brea talks about how the woman/disease connection has led to the neglect of ME/CFS in her brilliant 15 minute Ted Talk.
It took me five years to get correctly diagnosed. Once I finally found an ME/CFS specialist, I found out that he had a two year waiting list because there are only 12 ME/CFS specialists in the entire country. I've been seeing this specialist for a few years now, but because there is no FDA-approved treatment and no cure, I have not recovered. Without a treatment, it is unlikely I will recover, unless one of the experimental therapies I am trying happens to work. I cannot describe how it feels to contemplate never getting better.
This treatment of the disease by those with the power to direct research funding has been a problem for decades. In 1999 the CDC admitted it was funneling money intended for research on ME/CFS to other diseases instead. I think a lot of ME/CFS patients struggle not just because they're dealing with a horrible disease, but because their treatment by the medical community and our society has led to a deep sense of hopeless and desperation. Suicidal patients post in our online forums on the regular.
I want to talk about Vanessa Li here and post her memorial video. Is this a weird thing to do? I don't know. She was my age, though she got sick earlier and more severely than I did. She did a number of cool things to try to get help like organizing fundraising for groundbreaking research. She took her own life in 2015. You should watch the memorial video. It shows her life and the effect the disease had on her in a way that I haven't seen captured so clearly.
What's more, what she says on the park bench in minute 6:39 is something I have thought to myself many times. There hasn't been a serious intervention into this disease. The Institute of Medicine recently did a report on ME/CFS and found that there has been "remarkably little research funding made available" to investigate this disease given how prevalent and disabling it is. Francis Collins, the director of the National Institutes of Health, has said himself in a recent blog post that they really need to do more for ME/CFS patients. But change is slow. Like, slower than molasses on a cold day or whatever.
This week as part of the "ME/CFS Week of Advocacy" I got a meeting at Congresswoman Barbara Lee's office with the congressional aide who handles her health portfolio. He was really kind and genuinely interested--it was a great meeting.
He also told me that he hadn't really heard of ME/CFS until I contacted him and had to google it to find out what it is. This is not uncommon. More people need to know about this disease. And that is why I'm asking you to please share information about this disease with people you know whenever the opportunity presents itself. If you have the time, please consider signing up for email alerts at #MEAction or the Solve ME/CFS Initiative, buying a button or shirt (to support these groups but also so people can ask you about it, and you can be like, "Actually, it's interesting...." and then sound really smart talking about it), or, again, consider contacting your congressperson about ME/CFS.
Right now, two of our biggest concerns are
- Trying to get a piece of the $2 billion funding increase that's going to the National Institutes of Health in Fiscal Year 2017 to be directed towards ME/CFS research.
- Trying to ensure that in Fiscal Year 2018 our current single source of research funding won't be cut from the budget.
We also need to raise more awareness in the media. By any means necessary. *nervous laughter*
Your friend in bed with cats,
p.s. Here are some pics of the SF protest last year. Protests are rare because the whole point of the disease is that we can't really go anywhere and aren't very visible, but there will be more in the future. You should come to one!