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Use Myalgic Encephalomyelitis in ME/CFS
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Posted by: Mary Schweitzer
February 13, 2008 |
I signed the petition for ME/CFS in the United States because it is the only way to teach people that there was another name for the disease before the name "Chronic Fatigue Syndrome" was thrust upon us in the 1980s.
I am, however, concerned about the term "Myalgic Encephalopathy" being thrown around as a viable alternative.
Myalgic Encephalomyelitis was defined in the 1950s and again in Melvin Ramsay's textbook 30 years later. It was coded by the World Health Organization in the late 1960s.
In contrast, CFS has roughly 7 different definitions that conflict with each other. As a scientific term, it's nearly meaningless. And it focuses on a symptom (fatigue) that is present in all serious illnesses.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has a very good clinical definition - probably the best out there - in the Canadian Consensus document.
There is no definition for Myalgic Encephalopathy.
The name originated in the 1990s when patients were frustrated with having Myalgic Encephalomyelitis renamed Chronic Fatigue Syndrome. Those in positions to make names official or not complained that there was no "evidence" of "itis" in Encephalomyelitis.
That's actually incorrect. Unfortunately, the evidence is not always available until the patient is dead. Sophia Mirza had significant damage to the basal root ganglia consistent with inflammation. So did a patient autopsied by John Richardson after an automobile accident where she fell into frigid water and therefore the tissue was preserved. There are two cases, then, where M.E.-itis was precisely the right name - but nobody could "prove" it while they were alive.
Advocates responded to the challenge with a compromise - why not use Myalgic Encephalopathy - change the "inflammation" part of the name ("itis") to simply unspecified brain damage?
But Myalgic Encephalopathy was not accepted by scientists or by governmental organizations as an alternate to either M.E. or CFS.
Now it has resurfaced, nearly 10 years later.
Here are reasons why I am concerned about the name Myalgic Encephalopathy:
1. It has no definition - which means if the Wessely-Sharpe-White-Chalder group decide to define it, what will you do with it then?
2. There are patients who have had the diagnosis of Myalgic Encephalomyelitis for DECADES. It is known as M.E. To take that name away from them is, in my opinion, just as wrong today as it was in 1988, when "chronic fatigue syndrome" was invented.
There is a good, logical reason to dispense with Chronic Fatigue Syndrome: it is a detour that didn't work. The name (according to the Holmes article) was intended to refer to patiens who thought they had chronic mononucleosis. It has lead to a plethora of "fatigue studies" with no understanding that, in any serious disease, the patient is "fatigued". And it has also led to ridicule and dismissive behaviour towards patients.
What was the name before Chronic Fatigue Syndrome? What SHOULD the patients in the multiple cluster outbreaks in the United States in the 1980s (that led to the name CFS) have been diagnosed with?
Epidemic neuromyesthenia. That is what it was called in the U.S. But epidemic neuromyesthenia simply ... disappeared in 1980.
Epidemic neuromyesthenia was the name the U.S. used for Myalgic Encephalomyelitis. Somehow I don't see the CDC resurrecting a name with "epidemic" in it.
That leaves us with Myalgic Encephalomyelitis as the ONLY name in contiguous use for over half a century for the disease that I have. I can understanding using it with CFS to get people in the United States used to it; I proposed that to the CFSCC over a decade ago. However, while most patients with M.E.-itis fit the definition for CFS (Fukuda or Holmes), not all patients with CFS fit the definition for M.E. (which focuses on encephalitis and CNS disruption - assumed to be caused by a virus or immune damage or toxic assault or a combination thereof).
As Byron Hyde has noted, CFS is a misdiagnosis. Those who meet the definition for M.E. (either Ramsay's or Hyde's) have Myalgic Encephalomyelitis. Those who do not need to find out what it is they really have.
While I am delighted to see an effort to get us off the wrong road, the one taken when "chronic fatigue syndrome" was chosen for the patients stricken in the cluster outbreaks of the U.S. in the 1980s - I hope that another ill-defined and unknown name, Myalgic Encephalopathy, does not take its place.
M.E./CFS as in the Canadian consensus document - YES.
M.E./CFS with M.E. vaguely defined as "anything you want it to be" - NO - because patients don't get to do the defining.
Myalgic Encephalomyelitis - YES.
Chronic Fatigue Syndrome - NO. It is meaningless
Mary Schweitzer, Ph.D., USA |
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Indeed
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Posted by: Guido den Broeder
February 17, 2008 |
Some excellent points by Mary, as usual. There is another: just like CFS, a syndrome, Myalgic Encephalopathy does not point to a single disease entity. It is rather an umbrella, a name for a group of diseases, which would include Myalgic Encephalomyelitis, but also others. Patients with Myalgic Encephalomyelitis would be a minority.
By condoning Myalgic Encephalopathy we would quickly find ourselves more neglected than ever.
Regards,
Guido den Broeder
ME/CVS Vereniging, The Netherlands |
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Great post,Mary
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Posted by: dlmurphy0520
March 16, 2008 |
Mary: Thank you for a great post. I have had a terrible time with he name "chronic fatigue syndrome" and do have myalgic encephalitis...probably caused by HPV (am having a severe relapse currently with two ear infections, and also pyelonephritis)...but am told that I need to keep appointments for a study for which I was recruited. They knew that I had CFS/ME...and I tell most people that I have an illness similar to MS or lupus, as at the very least, they don't think that I just am tired all of the time, and can grasp the idea of a serious illness. My main disability is my cognitive function, and although I regained my short term memory and most of my photographic memory (by working on word gamesdaily). However, when I relapsed so severely this time, I thought that I had lost it, but it is returning as I am feeling better, and taking care of myself.
However, the name "chronic fatigue syndrome" has caused me a good deal more than distress (not good for us anyway). Like you, I am worried about the name change to be myalgic encephalopathy. I met a gal from Australia the other day, and when I told her that I had myalgic encephalitis, she immediately knew what I meant.
Why does the US have to fight to have a different name for this disabling and misunderstood illness?
Thank you for your post and keep writing! I truly hope that this argument that has gone on for way too long, does not continue. If the name is simply "M.E."...then that would help those of us who are severly debilitated and at the very least,
help all of us who have to keep trying to explain the current name and misconceptions.
You write so well! This arguing back and forth is only hindering the name change, and is not helping any of us.
So, let's quit arguing and join the rest of the world!
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