Tuesday, February 10, 2015

The IOM Report proposes new name: Systemic Exertion Intolerance Disease

I know I haven't blogged in over a year, but I had to write something when I saw this headline on a New York Times article:

Chronic Fatigue Syndrome Gets A New Name

And the proposed new name is...

Systemic Exertion Intolerance Disease (or SEID)

I was actually so happy I cried. I know it's not the best name ever, but anything is better than CFS.

For those who don't like the new name because it doesn't describe the symptoms or experience completely, or doesn't do justice to our suffering, I don't know what to tell you. No one name could ever do that. Cancer doesn't. AIDS doesn't. It's not the name's job to tell the whole story. That's up to the culture around the name. And this is a good start to changing our story.

Of course this is just a proposed new name by the Institute of Medicine (IOM). As I read in The Occupy CFS blog's IOM report card, the US Department of Health and Human Services still has to accept this definition.

I had three main hopes for the IOM report:

1) That they would recommend a new name (one that was not worse than CFS)

 2) That post-exertional malaise (PEM) would be emphasized.

 3) That the two-day exercise test would be used somehow as a biomarker.

All three hopes have been met.

If you're unfamiliar with the two-day exercise test, also known as VO2 Max test, please read Cort Johnson's excellent blog post, which explains why this is such an important test when it comes to distinguishing CFS from depression and deconditioning.

I was afraid two-day exercise tests would be completely ignored. But they are actually recommended on page 46, "Objective Tests." Objective tests (!)

PEM - Two cardiopulmonary exercise tests (CPETs) separated by 24 hours Demonstrate marked inability to reproduce maximal or anaerobic threshold measures on the second day (note that this test may induce severe exacerbation of symptoms in these patients)
From Recommendation 4 on page 25 of the report:

The committee recommends that this disorder be renamed “systemic exertion intolerance disease” (SEID). SEID should replace myalgic encephalomyelitis/ chronic fatigue syndrome for patients who meet the criteria set forth in this report.
The term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used as the name of this illness. 

I hope the new name will lessen the stigma of this disease both with doctors and the general public. But it's really with doctors and researchers that it's needed. It's commonly known most doctors don't take CFS seriously. And no wonder.

“Less than a third of medical schools include (CFS) in their curricula and only 40 percent of medical textbooks contain information on it, the experts said.” - From The Washington Post, today.

I just moved to a new city and needed a regular, local doctor. I didn't expect her to be knowledgable about CFS. I even expected her to be hostile towards me.

That's right. I expected my doctor to not know anything about my disease and I expected her to be hostile to me about it. This is horrible. This is so messed up. And yet I've just come to accept it.

Still, I had taken the two-day cardiopulmonary exercise test last year at the Workwell Foundation. When I got my results I thought that this would be like my golden ticket with new doctors. "See? Something is really physically wrong with me! Look!"

Yeah, I was wrong.

I printed out my report and brought it with me to my first appointment with my new doctor. When she said my fatigue and post-exertional malaise were due to depression and deconditioning, I whipped out my results and said, "Actually..." Ha! Gotcha! I pointed to the part of the study that distinguished CFS patients from sedentary people and people with depression.

She didn't seem impressed.

At the end of the appointment, after I had told her about my symptoms and history and what I did all day, she said, "I'm going to be honest with you, I think it's just depression."

Well, at least she was honest. Completely wrong, but honest.

I went back to her last week for a prescription refill. She asked if there was any improvement with my "fatigue problem" and I said no. Then she got mad at me. This has happened with another doctor before. This one said, "You need to push yourself. You are making  yourself a cripple!"

No, I'm really, really not. And doctors should not be allowed to say that anymore.