On February 10th, the Institute of Medicine released the findings of a report it had been working on for approximately a year and spent over a million dollars on. Their task: come up with new diagnostic guidelines for patients with myalgic encephalomyalitis/Chronic Fatigue Syndrome and decide on a new, single name to replace both ME and CFS, which are generally used interchangeably for the same disease.* Considering that ME/CFS gets only a pitiful three million dollars in government funding per year (which may sound like a lot, but consider that male pattern baldness, which is not life-threatening, gets $16 million, and you realize how very, very little that is), this is a cost we cannot afford.
The IOM’s findings are so upsetting to me, I can hardly organize my thoughts into rational sentences. But while I may want to sob and punch a hole through the wall (which, let’s face it, I’m probably not strong enough to do anymore), I need to speak up about these incredibly vital points and I need to do so in a way that other people won’t dismiss me as merely a “hysterical woman.”
I’m going to be generous here for a minute; here are the few good things gleaned from the IOM’s 304-page report.
- They recommend retiring the trivializing name “Chronic Fatigue Syndrome.” I fully agree with that. I could not agree with that more.
- They admit that far more research needs to be done to understand ME/CFS.
- They admit that ME/CFS is a real and physical disease.
- They recommend that the Department of Health and Human Services should develop new, more accurate ways of diagnosing ME/CFS.
For about half a second, I was happy when I heard the IOM recommended changing the name of “Chronic Fatigue Syndrome” to what they’ve proposed: “Systemic Exertion Intolerance Disease.” Mostly I was happy because I saw the word “disease” instead of “syndrome.” And I will, begrudgingly, admit that their SEID is ever-so-slightly better than CFS. If CFS is a kick in the balls, SEID is a kidney punch. Neither is good, but I suppose if i were given the choice between the two (and I were male) I might choose the kidney punch.
Here’s what’s wrong with SEID.
The IOM complained that the name “Chronic Fatigue Syndrome” is demeaning and only focuses on one symptom. Those are both true. They also decided that “myalgic encephalomyalitis” was unsuitable because it also only focused on one symptom. That is not true. “Myalgic encephalomyalitis” literally means “muscle pain and inflammation of the brain.” You have two symptoms being named, both of which are hallmarks of the disease and which have tons and tons of scientific proof backing them up, as well as patients’ own experiences aligning with them. Additionally, more documentation can be found in the UK documentary Voices From The Shadows where multiple autopsies of patients who died from ME/CFS all showed inflammation in the same area of their brains. Despite mountains of evidence to the contrary, the IOM decided that while nearly every person diagnosed with ME/CFS complains of chronic pain, that was not a general symptom for ME/CFS patients, and thus should be excluded from the name.
I know a lot of people with ME/CFS. We are a close community as this disease ravages us in ways only other sufferers can truly understand. We form deep online friendships since we are so often unable to interact with people in meaningful ways in the real world. We rely on each other for advice about treatments and medications, as we almost always know more about our disease than our doctors do. None of my doctors had ever even heard the name “myalgic encephalomyelitis” until I said it to them. We are our own biggest support system. And I do not know a single person with ME/CFS who does not experience chronic pain. Personally, I have not had a pain-free day in over seven years. To have healthy outsiders negate the 2,555+ days of pain I’ve experienced and say it’s not an important symptom is beyond a slap in the face.
But even those slights aside, “Systemic Exertion Intolerance Disease” fails their own test by simply naming only one of our other common symptoms; exertion intolerance.
Exertion intolerance is a very real thing for ME/CFS people. And it doesn’t have to be physical exertion; mental or emotional exertions can leave us just as sick for days, or weeks, sometimes months… or forever, as physical ones. For years and years, doctors have been advising us to exercise our disease away. And for many illnesses, exercise does help. But with ME/CFS, exercise can be absolutely deadly. Push yourself too hard and you can make yourself house-bound or bed-bound… sometimes for the rest of your life.
We walk a knife’s edge every day, trying to judge what we can and cannot do. It’s generally considered a fairly good idea within the ME/CFS community to try and remain as active as you can without overdoing it and making yourself worse. It’s like playing a very stupid game of blackjack with your energy each day. You don’t want to lose any ability to be active that you do have, but even hitting 21.01 could mean a week of being stuck in bed. It’s a serious and deadly game we are forced to play every single day.
So yes, exertion intolerance is a very real and dire threat, but even given that, we’re still left with a name which merely cites one of our symptoms again. And as I said, SEID is ever-so-slightly better than CFS simply because of trading out the word “symptom” with “disease.” Laymen hear “syndrome” and it doesn’t sound serious; replace it with “disease” and their view shifts. I have serious doubts that busy doctors, who have no time to read a 304-page document, will hear anything but “exercise avoidance” in place of “exertion intolerance.” After all, exercise is a cure-all! There’s nothing it doesn’t help! That’s the mantra they’ve been taught again and again and it will take very dramatic events to undo those decades of conditioning.
Almost every ME/CFS sufferer I know has had at least one doctor who refused to believe there was anything physically wrong with them. I had one of those too. Mine decided I was simply depressed and anxious. In a way, she was right; I was getting very depressed because I felt terrible every single day and nothing was helping it, and I was becoming increasingly anxious about my appointments with her because I was sensing she didn’t believe me. I have experienced clinical depression. There was one solid month in a very dark period of my life where I had to rationalize not killing myself every single day. I know what depression looks and feels like. It is a completely different beast than ME/CFS.
It’s like saying sharks and bears are the same threat. Well, no, one lives in the water and generally attacks you if he mistakes you for a seal; the other lives in the woods and might attack you if she thinks you’re a threat to her cubs… You get the picture. Both can kill you, but trying to issue a blanket statement that they are both the same threat, coming from the same place, using the same methods to avoid them would be absurd.
ME/CFS is not “just” depression. I put “just” in quotes because I know how serious depression can be and I never want to be dismissive of it. It kills too. But they are completely separate entities. There is a tendency for people who have ME/CFS to become depressed because they have ME/CFS, but that does not mean they are one and the same. Almost anyone with a chronic, incurable illness is going to get depressed. You never hear people accusing cancer patients that the cancer is all in their heads; they’re just depressed and if they went for a nice jog, everything would be fine!
And lest you think I am fear-mongering and making ME/CFS out to be more than it is, let me remind you of a quote by Dr. Nancy G. Klimas, who specializes in treating both HIV/AIDS patients along with ME/CFS patients. In 2009, she was quoted with the following: “…But I hope you are not saying that C.F.S patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale 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 participate in the care of their families. I split my clinical time between the two illnesses, 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 people in the United States alone, has had a small fraction of the research dollars directed towards it.”
The overwhelming majority of ME/CFS patients would have liked to have had our name officially changed to “myalgic encephalomyelitis.” We made our preferences known loudly during the entire time the IOM worked. ME is, after all, what most of the modern world calls it. It was only because of one insidious man that the United States switched to “Chronic Fatigue Syndrome.” And why was such a name invented? To create a legal loophole where insurance companies would be able to deny sufferers coverage. The schism between the United State’s naming of the disease and the rest of the world began with greed from insurance companies. These are your US tax dollars at work.
And what’s even worse is that there is speculation that the IOM is intentionally confusing the issues around ME/CFS; making the definition unusably broad, ignoring patients’ wants and needs. Once again, making sure we’re worse off than we were before they came along.
The second of the IOM’s tasks, coming up with a diagnostic criteria for ME/CFS, was also unnecessary. Two excellent, specific and scientific definitions already exist (and are used by most of the modern world as well.) It was loudly advocated by ME/CFS patients and specialists alike that the IOM adopt these guidelines. In fact, 50 of the world’s leading ME/CFS experts sent letters asking that the IOM’s contract be canceled along with countless letters written and petitions signed by patients.
That brings up another salient point… who are these people chosen by the IOM for this heavy and delicate task, ripe with repercussions which will ripple through the decades? They are 15 people, only seven of whom specialize in ME/CFS in any way. Some are not even doctors. How is this at all ok? How was it allowed that a group of people who don’t have anything to do with the disease at hand would be asked to redefine it?
Let’s give them the benefit of doubt for a moment and assume they’ll really try and do a good job. Who knows. What did they come up with? They decided that to be diagnosed with ME/CFS, you need only three of the following core symptoms:
- A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue – which is often profound – of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest.
- The worsening of patients’ symptoms after any type of exertion – such as physical, cognitive, or emotional stress – known as post-exertional malaise.
- Unrefreshing sleep.
And at least one of the two symptoms is also required:
- Cognitive impairment.
- The inability to remain upright with symptoms that improve when lying down – known as orthostatic intolerance.
Do you know how many diseases and conditions fall under this umbrella? It’s so broad, it’s utterly useless. You wouldn’t even need to have a physical ailment to qualify for ME/CFS. This is a big deal. If this new standard is adopted, this is the criteria that will be used to find patients to test new drugs and treatments. Can you imagine how murky and confusing the results will be if your patients could potentially have almost any disease? Answers will never be found under these guidelines.
As people online have pointed out, SEID backwards spells DIES. And it’s hard to feel like that isn’t exactly what the IOM, HHS and CDC want us to do. We are an embarrassment to them because they don’t know what our disease is, what causes it or how to fix it… and, of course, a great deal of that confusion was created intentionally; a fact they’re desperate for us to forget. They would rather sweep us under the rug, ignore us, talk over us. And sadly, that is very easy for them to do. With so many patients house- and bed-bound, it’s extremely difficult to show our numbers, organize protests, or object to our treatment in any meaningful ways.
But this is what they haven’t counted on.
When you are backed into a corner by illness, you can either crumple under it or develop a steel core in the deepest part of your soul to bear it. Some days you may flip back and forth between the two, but ultimately, your will strengthens. The stakes are personal to us and they are very high. Though it might take the help of our caretakers or cost us a week of energy or send us back to bed for months, we will not be silenced again. Shifty, snakey policy-makers may have the energy and money we don’t, but they do not have this core to draw on.
We will fight. And we will win.
Are you pissed off? Good. We need you to be pissed off. We need a public outcry so loud that it simply can’t be ignored. And we need the healthy, compassionate people of the world to join us in demanding change.
Here are some things you can do:
Pass around the image above, Silenced, on your social media platforms. Linking to this post would be helpful! I am giving you permission to use the Silenced image to help get our message across! Put it on Facebook, Twitter, Instagram, Tumblr, Pinterest… wherever you hangout online! The more people who see it and become aware of the problem, the better!
Tweet to @TheIOM, @HHSgov and @CDCgov letting them know your displeasure in the proposed name change. We DO have the power to stop this from becoming our reality! Please use the hashtag #MENotSEID. Not sure what to say? Here are a couple examples you are free to use!
Additionally, you can:
Every voice counts!
Would you also like to support me in my quest to continue making art in spite of ME’s constant presence in my life? How lovely of you! 🙂 I have added the new Silenced image to my RedBubble shop as well as my Etsy store; you can get it (or most other images) as museum-quality prints, tshirt, stickers, covers for your phones and i-Devices, travel mugs, blank greeting cards, even pillows and tote bags! Every purchase goes toward helping me continue to produce new art as well as spend the countless hours necessary to delve into issues like this post. And every single purchase is hugely appreciated!
Images are from my Enchanted Sleep series, which portrays living with ME/CFS/fibro.**
Istagrammers! Here is a square version of the image, already Instagram-friendly 🙂
*When you dig into it, no, ME and CFS are not describing the same disease, mainly because the current US diagnostic guidelines for CFS are so sloppy and wide-open. Further information on the subject can be found here, along with countless other places online. Since there is a lot to talk about in this post as is, for brevity’s sake, I’m using the term people are most familiar with, ME/CFS, though the definition I have in mind is the CCC and ICC definition of ME.
**Fibromyalgia is, for the most part, also used interchangeably with ME/CFS in the US. This is not entirely accurate, much like ME and CFS are not really the same thing, but for the sake this post, when I talk about ME or CFS, I am also talking about fibro.