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.







12 comments:

  1. We have the same problem in Spain.
    I wonder what have to say my doctor who recently said that fibromialgya and CFS are 'perceptions', not real diseases.
    But its funny how they say your fatigue is due to deconditioning bc my CFS or *pls this name is good enough* SEID started when I used to go to the gym for an hour from Monday to Friday so...

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    1. When I first got sick I went to a school that made every student play a sport every season. I was very active. In the years between onset and diagnosis I had to stop doing things like sports, marching band, and going to the gym. But after a year of resting, I was still able to shop and go to work or school, but not regularly or without crashes.

      But now in the last few years I can feel that I am deconditioned. I can't open heavy drawers or lift the little dog without my heart rate surging. I've been mostly housebound. I have been unable to shop or go to school or work. But I know deconditioning is not the cause. That would be ridiculous.

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  2. To Domando Al Lobo: Tell your doctor to do immunoglobulin and virology tests, and when the results come back, he/she will still refute them, but you'll have proof that you have a legitimate illness. I convinced all kinds of doctors I am sick simply by showing them the results of my blood tests. There are still a couple who ignore those tests, including genetic defects that contribute to the symptoms. But they are morons.

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    1. I think doctors are unimpressed by tests like this because everyone has abnormalities. I once heard a doctor say on the radio, in reply to CFS patients having abnormal inflammation, "Lots of people have inflammation, people with obesity have inflammation."

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  3. I hope you will be able to deliver a copy of the IOM full report and brief to that uninformed doctor

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    1. I am tempted! But I'm afraid if I bring in too much to an appointment I'll just set off a red flag right away. I probably will though, along with some carefully chosen studies.

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  4. I tried telling some doctors that one week I could walk 4 miles to/from work, and a week later just 4 blocks from the bus stop to my desk left me so exhausted that I needed to rest for an hour before doing any work. There is NO WAY you get deconditioned from lack of exercise that quickly, so it has to be a serious medical problem. Nope, they found ways to twist it around to continue to tell me I was just depressed and remembering wrong.

    The ones who don't want to believe will never accept the facts, no matter what name is given to it.

    www.CFSfacts.org

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    1. I know what you mean. It's like some doctors just want to believe everyone is lying and exaggerating for attention or to get out of things. Depression is not the answer to everything.

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    2. CFS facts and everyone else here, please please consider that you may have Lyme disease and other tick-borne illnesses. I was initially told that I had CFS (and was indeed bedridden with fatigue and weakness). I had tested NEGATIVE for Lyme disease and didn't have joint pain so it was off my radar. People on the Facebook convinced me to find an Lyme Literate MD (LLMD). I was tested for LOTS of tick-borne illnesses through IGeneX labs (they specialize in tick-borne disease testing). I came back positive for Lyme, anaplasmosis, bartonella, brucellosis and mycoplasma. I've since been to a doctor in Mexico who does dark field microscopy--I was able to see the Lyme spirochetes swimming in my blood! Please know that Lyme testing looks for only ONE strain of the bacteria, even though we have 100 known strains in the U.S. and 300 known strains worldwide. The testing is so inadequate that states are now passing laws that doctors must disclose that Lyme is a clinical diagnosis. A positive test means you've definitely been exposed, but a negative test means nothing at all.

      Lyme patients endure the same kind of crap with the medical community that ME/CFS patients endure. In fact, when I was pursuing disability because I was too sick to work, my attorney said, "Thanks goodness you have a diagnosis of CFS--the courts take it more seriously than they do Lyme."

      I am not denying that anyone is sick. I 100% believe it. But I now know SOOOOOO MANY PEOPLE who were told they have CFS or fibromyalgia who eventually learned that they actually have Lyme. I now view my CFS as a symptom of my tick-borne illnesses.

      By the way, a leading LLMD has tried to change the name of Lyme to "multiple systemic infectious disease syndrome" for the exact same reason the IOM is trying to change the name of CFS--so that doctors will drop their biases and take us and our disease more seriously!

      Good luck to all! <3

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  5. ..and the treatment remains: 1) treat your depression; 2) stretching & 3) aerobic exercise

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  7. The IOM report is a major step forward and recognises the severity of the disease. I was happy to see the science of the 2 day cardiopulmonary exercise test recognised.

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