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"Chronic Fatigue Syndrome: What’s in a Name" - Neurology Now

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
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Canada
http://journals.lww.com/neurologynow/blog/webextras/pages/post.aspx?PostID=17

Does anyone have access to "Neurology Now" to see the rest of the content mentioned (on the IOM report ) ?


Chronic Fatigue Syndrome: What’s in a Name?
chronic-fatigue-symptoms.png

In the October/November issue of Neurology Now, we dive deep into an Institute of Medicine report on chronic fatigue syndrome. Along with new diagnostic criteria, the report also recommended a new name for the condition. We've asked some experts their opinion of the new moniker.


BY DARRACH DOLAN


What’s in a Name?

The panel of experts convened by the Institute of Medicine (IOM) looked at whether the current names for chronic fatigue—chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME)—accurately reflect the symptoms of the disease.


Many people in the CFS community prefer ME because it sounds more “medical” and doesn’t carry the stigma that tends to be associated with CFS. However, many doctors, including Thomas Sabin, MD, FAAN, vice chair of neurology at Tufts University School of Medicine, object to ME. “Myalgic encephalomyelitis” means muscle pain or fatigue caused by inflammation in the brain and spinal cord, but not all people with CFS show signs of inflammation on brain scans, he explains. “I don’t like calling it by a name that has a pathological implication that isn’t true,” he says. While there have been some indications that the syndrome involves inflammation, and Dr. Sabin does believe inflammation is involved, he thinks ME is still clinically incorrect.


Calling it CFS, on the other hand, trivializes the condition, according to many people who have it. Often, doctors and friends say they have fatigue, too, as if all types of fatigue were equal. And CFS is still associated among some with the term “yuppie flu,” which implies that only the privileged can afford to get it and that those who have it are faking it.


For others, the term CFS just doesn’t reflect how the disease affects multiple systems within the body.


Given the ambiguity and imprecision of ME and CFS, the IOM proposed calling the condition “systemic exertion intolerance disease,” or SEID. Susan Levine, MD, an infectious disease and allergy and immunology specialist in New York City, thinks the IOM is on the right track, but Dr. Sabin is on the fence. He prefers the term CFS, if people were to take it more seriously. But he is not against a name change if it will remove the stigma and draw more positive attention to it.


It is unclear whether SEID will become the new name for this complex disease. However, the IOM report points out that having two competing names, CFS and ME, along with the numerous clinical definitions of the disease, makes it more difficult for researchers to compile data and access funding to study it.


While Dr. Levine does not agree with everything in the report, she does believe that a consensus on diagnostic criteria and a single name would help doctors diagnose the condition more easily and encourage more research. Dr. Sabin believes that whether the name is changed or not, the report succeeds in making it “easier for new doctors being trained in medical school to recognize the disease.” And that’s an important first step.
 

jimells

Senior Member
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northern Maine
Many people in the CFS community prefer ME because it sounds more “medical” and doesn’t carry the stigma that tends to be associated with CFS.

How condescending. The author is ignorant of the history or disingenuous, probably both. It's not exactly a secret that "ME" was the name until CDC decided to define the illness out of existence, on orders from disability insurers.

The excerpt suggests that the essay is just another distraction from the fact that there is *still* inadequate funding for research and patient care and that government agencies intend to maintain this policy for as long as possible. If the author follows the usual methods of modern "journalism", these issues might be mentioned - in the last paragraph.
 

alex3619

Senior Member
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Logan, Queensland, Australia
How condescending. The author is ignorant of the history or disingenuous, probably both. It's not exactly a secret that "ME" was the name until CDC decided to define the illness out of existence, on orders from disability insurers.

"Many people in the CFS community prefer ME because it sounds more “medical” and doesn’t carry the stigma that tends to be associated with CFS."

I think this qualifies as a myth. So many have said it so many times that people just presume it has some validity. A lot like an urban legend.
 

alkt

Senior Member
Messages
339
Location
uk
well if we are allowed to have a preference for the name of a disease that steals our lives away. would return it to atypical polio which it was known as prior to ramsey naming it as m.e . at least that was a disease taken very seriously by doctors and governments.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The reason atypical polio was good was there was a close association with polio outbreaks and what came to be called atypical polio.

Now we do not have polio outbreaks any more. So selling this name would be very hard to do, it would be treated even more skeptically than CFS.

However we know that polio is from the enterovirus family. We know that, in animals at least, other enteroviruses can cause a polio-like problem. So there is a case that while polio is nearly fully eradicated the other enteroviruses do not even have a vaccine. They are also strongly implicated in many ME outbreaks, and there are occasional epidemics.

However, since polio was massively vaccinated against, I wonder if this made a difference to the number of ME outbreaks. They simply disappeared ... until you realize that many outbreaks that sound similar now go under other names. Post Q fever, post SARS, post Ebola, etc. Did they stop, or were they relabeled? If they were relabeled, what does this mean about the nature of ME?
 

Vic

Messages
137
"Many people in the CFS community prefer ME because it sounds more “medical” and doesn’t carry the stigma that tends to be associated with CFS."

I think this qualifies as a myth. So many have said it so many times that people just presume it has some validity. A lot like an urban legend.
Eh, from what I've seen it's true. CFS really isn't that bad of a name description-wise. To be fair, ME really isn't that bad either. They both have a large amount of truth to them. They're both incomplete, but the "encephalomyelitis" just doesn't fit everyone, and it's not because they're "different diseases."

"And CFS is still associated among some with the term “yuppie flu,”"

Maybe because journalists like you keep repeating it. FFS...
HAH! Yeah.
 

Forbin

Senior Member
Messages
966
Many people in the CFS community prefer ME because it sounds more “medical” and doesn’t carry the stigma that tends to be associated with CFS.

By a strange coincidence, many physicians prefer to be called "doctor" because it sounds more 'medical" and doesn't carry the stigma that tends to be associated with "sawbones." *


[* 19th century slang for a surgeon during a time when amputation was the most common form of surgery. Later, slang for any doctor.]
 
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jimells

Senior Member
Messages
2,009
Location
northern Maine
The name issue is such a powerful agent for distraction that even in this thread it we are once again lost in the weeds. Has anyone read the entire article? Does it discuss anything in the IOM report besides the name?

Personally, I prefer to focus on the policies and the institutions that created and support them. This publication is clearly one of those institutions.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
http://journals.lww.com/neurologynow/blog/webextras/pages/post.aspx?PostID=17

Does anyone have access to "Neurology Now" to see the rest of the content mentioned (on the IOM report ) ?

This is only part of the text so I'll withhold judgement but what I've seen here, it could be better, it could be worse. It seems a bit amateur to me, statements put in without checking validity etc. I agree with him that ME is inaccurate in most cases. But saying bizarre things like "but Dr. Sabin is on the fence. He prefers the term CFS, if people were to take it more seriously." Yet it is apparent that people are not taking it more seriously, if they were then it wouldn't be the issue that it is and he wouldn't be talking about it. It just doesn't seem logically thought out really.
 

mfairma

Senior Member
Messages
205
Whether the name is accurate or not is beside the point. We don't want a new name. We want the old name.

Discussions of the name place us in an unfair bind of having to justify the name to people who lack understanding of ME or awareness of the sociopolitical context and do not share uniform agreement of what disease is even to be named. Its ridiculous. That journalists all too often suggest this "discussion" has validity shows how little is understood about the situation.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Based on what evidence?
Exactly...Not many people are able to show they have Encephalo = brain, Mye = spinal cord, Itis = inflammation, and neither is there sufficient peer-reviewed evidence for it in the majority of people who are diagnosed with ME or ME/CFS.
 

Large Donner

Senior Member
Messages
866
“Myalgic encephalomyelitis” means muscle pain or fatigue caused by inflammation in the brain and spinal cord, but not all people with CFS show signs of inflammation on brain scans, he explains.

So should the people who do show those signs have the term taken away from them? What sense does that make.

Let me guess, if you have CFS then theres no point scanning you to see if you have signs of inflammation cos "CFS is a more accurate name .....errrmmm.... for people who don't have signs on a scan"?

How about doing different scans, more scans, higher magnet field scans?

Also notice he says ME means fatigue or pain caused by .....

inflammation in the brain and spinal cord, but not all people with CFS show signs of inflammation on brain scans

How many people on this site have had a scan of their spine?

Medical science is in a very bad way, if it prefers syndrome labels by removing any access to differential diagnosis and it has forgotten that the spinal cord is part of the CNS.