Friday, November 18, 2011

ME vs. CFS

Of course CFS is a particularly harmful diagnosis for children. The term could not be more dismissive if it had been created by a focus group.  Chronic as in chronic complainer, Fatigue as in "Yeah, I've been a bit tired myself lately," and Syndrome as in Fad Diagnosis.

But it is the name that, thus far in the United States, we were GIVEN. No one asked for it and no one likes it.

The question is not who prefers CFS over M.E. Nobody does.

The question is how do we get those in authority, and in a position to control our lives - doctors, government agencies, employers - to quit using the name (or what it always ends up as, "chronic fatigue") and shift to something respectful and meaningful.

There is no use debating how to lead the horse to water. It is refusing to drink.

And as Lenny Jason has shown aptly over the years, the definition is equally important.

The ME/CFS campaign goes hand in hand with the Canadian Consensus Criteria. The CCC was created in 2003 after Canada adopted its own clinical manual for ICD-10, called ICD-10-CA, which puts CFS and M.E. together in the tabular version.  They brought together about 20 clinicians from different nations, including the US, and hammered out a very good definition to go with the new name.

Those of us who have favored the name ME/CFS do not do so out of any love for or nostalgia for "CFS".  Rather, we are trying to accomplish two goals:

1.  Teach those in a position of power over our lives that most of us actually have M.E. - certainly, had the Incline Village and Lyndonville outbreaks occurred in England at the time, they would have gotten the diagnosis of M.E.  But they were in the US, and Washington/Atlanta annointed them first with CEBV, then with CFS. 

M.E. as a disease name was virtually unknown in the US because we had used Epidemic Neuromyesthenia when the UK and British Commonwealth adopted Myalgic Encephalomyelitis in the 1950's, when atypical polio no longer seemed appropriate. We need to teach those in power about Myalgic Encephalomyelitis so they can, in the NEXT step, dump CFS entirely.

In that context, the adoption by CFSAC of the name ME/CFS is progress towards abandoning CFS altogether.

2. We want physicians using the CCC for diagnosis, not the Fukuda definition.  Since the name ME/CFS is used throughout the CCC, it also helps take them towards the next step, dropping CFS altogether.

Yes, there is now a new published definition for M.E. But in the US, it does not help with those in power over our lives if they refuse to use M.E. in the first place.

When I write about the disease, I try to use the phrase "patients with M.E. or a diagnosis of CFS," but that is clumsy to use in every sentence, so it ends up shorthanded to ME/CFS.

Better than "chronic fatigue."

Mary M. Schweitzer
* * *
I agree with Mary.  I've been assaulted on any number of occasions for using CFS Facts as the name of the website and the e-group.  Those of you who've been in the CFS community for a long time probably know to google ME, but someone who's just been given a diagnosis of CFS won't know that.  And, make no mistake, in the US, 99.9% of patients are going to get a diagnosis of CFS; only the most militant of doctors will buck the CDC to call it ME.
 
So, do I use the name they've been told by their doctors, and educate them?  Or do I insist on calling it ME, and only ME, and lose the opportunity to catch the newly-diagnosed?
 
When doctors stop diagnosing CFS, I'll stop using the name.  I hate the name myself, and have since my diagnosis was changed in 1988.  But I was told that if we didn't play CDC's game of calling it CFS, my insurance company wouldn't pay; working only 2 days a week, I was in no position to stand up and declare "call it by its right name and I'll pay the bills myself!"
 
It is what it is, and going on a quarter-century of patients and experts *itching about it still has not gotten the name changed.  I can waste energy tilting at windmills trying to get the name changed, or I can use my limited energies more wisely in trying to raise funds for research.
 
"The CDC agreed to study the matter [of a name change] but later announced that the adoption of a new name is premature. In a catch-22, the present name trivializes the illness, thereby discouraging the research funding needed to uncover the pathophysiology of the disorder, which would help determine a more accurate name."  -- Katrina Berne

No comments: