New Name, Criteria for Chronic Fatigue Syndrome

How well will they be accepted?

Man listening to doctor
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Does chronic fatigue syndrome finally have a new name? That depends largely on whether anyone will use the new one that's been suggested.

On February 10, 2015, an Institute of Medicine panel proposed a new name and new diagnostic criteria for the condition. But they didn't put forth "myalgic encephalomyelitis" or ME/CFS, so experts are skeptical as to whether the patient community will accept the name.

To give you some perspective, the panel reviewed more than 9,000 scientific studies, heard expert testimony, and got information from the public before making its recommendations. It then put together a 235-page report titled, "Beyond Myalgic Encephalitis/Chronic Fatigue Syndrome: Redefining an Illness."

A New Name

What is the name? Systemic exertion intolerance disease, or SEID.

Panel members say this name describes a key feature of the illness — the inability to tolerate exertion, either physical or mental, which is called post-exertional malaise. They agreed with patients and experts who said for decades that the name "chronic fatigue syndrome" makes light of the serious illness, with people often commenting about how they get tired too, so they must have it.

However, according to the New York Times, some experts think the committee should have checked with the ME/CFS community before coming up with a new name to make sure it's something patients would accept.

This debate has raged so long and has been so heated and emotional that some people are extremely attached to the names myalgic encephalomyelitis, ME/CFS, or CFS/ME.

The panel points out, though, that there are problems with the name myalgic encephalomyelitis. That name means inflammation in the nervous system, which does not have strong evidence behind it, as well as muscle pain, which they say is not a prominent enough symptom.

Many in the patient community have criticized the panel because the majority of members don't have any known expertise with illness. It did have several members with extensive experience in treating ME/CFS, though.

Points to be Happy About

The panel seems to understand the damage the historic name has done to patients by stigmatizing and trivializing a life-changing and often severe illness. That's a great start. Also, some panel members have said they don't believe it's the perfect name, but that it's a better one for now.

Two things to point out about the name itself -- it includes "systemic," which points to a physiological basis, and "disease," a word many people have long waited to hear in connection with ME/CFS.

One expert says the report is the best summary of the evidence he's ever read. The panel also noted how little research has been done on ME/CFS compared to how many people it impacts.

A companion to this report will outline research priorities for moving forward. It's currently being revised for publication by the National Institutes of Health.

And then there's the thing that could be the most important part of this report: the new diagnostic criteria.

Diagnostic Criteria

The patient community has long pushed for the US to adopt what's commonly called the Canadian Consensus Criteria. It's a positive step, then, that  the new criteria are built on, but not identical to, that.

The new criteria include:

A lot of doctors have complained that the CDC's definition, which has been used to diagnose people since 1994, can misdiagnose people who have other causes of prolonged fatigue, including depression. Those criteria included six months of persistent, unexplained fatigue plus four or more symptoms from a list that included all of the new criteria except for orthostatic intolerance. However, it's possible, under the CDC criteria, to diagnose ME/CFS without any of the new criteria's symptoms save fatigue.

Acceptance of the Report

The long-standing controversy over and ME/CFS has pitted patients and researchers against the government for decades. While this report and the panel that produced it are certainly not perfect, I do have to wonder if anything will please all of the people who have a dog in this fight. I suspect that some will continue to embrace ME in some form no matter what.

I hope, though, that enough people will accept the new name that we can finally leave behind the stigma of chronic fatigue syndrome and re-educate the public about the true nature of this illness.

Even more, I hope that the medical community will recognize the amount of research and expertise that went into compiling this report and come to accept whatever we call it as a serious physiological condition. The new diagnostic criteria better highlight the key features of the illness and could well lead to more consistent and reliable diagnosis and research. (After all, in the last few decades we've seen no less than 20 definitions, at least five of which are still in play.)

If this report and its companion can do all this as well as leading to heightened research interest, it'll go a long way toward healing the battle scars of the controversy as well as improving the outlook for people living with this condition.

Sources:

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Institute of Medicine, National Academy of Sciences. February 10, 2015. All rights reserved. Accessed: January 2016.

Cohen, Jon. Goodbye chronic fatigue syndrome, hello SEID. Science insider, American Association for the Advancement of Science, February 10, 2015. All rights reserved. Accessed: February 2015.

Tuller, David. Chronic fatigue syndrome gets a new name. The New York Times, February 10, 2015. All rights reserved. Accessed: February 2015.

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