t years on the subject and testified to CFSAC about it, I thought I should s=
hare what I know, and what I believe. (Besides, I don't want to have to wri=
te any more emails about it!)
The World Health Organization (WHO) puts out what is called the "Internation=
al Classification of Disease," so that nations keep comparable statistics on=
diseases. About once a decade they revised it, until ICD-10, which took 15=
years, and now ICD-11 has already taken more than 20.
Most nations just use the version published by WHO - and that includes the U=
K. A few nations (Canada, Australia, Germany, the U.S.) publish their own c=
linical manual. The rules they have agreed to as signatory nations is that i=
t is okay to add a disease not in WHO's version, and they may subtract a dis=
ease that WHO includes but is not diagnosed in that country. They are NOT s=
upposed to MOVE a disease into a different chapter altogether, because that w=
ould defeat the purpose of having international codes in the first place. T=
he US versions are called ICD-9-CM and will be called ICD-10-CM.
There are two versions - the "tabular" version, which is organized by catego=
ry, and the "index," which provides an alphabetized listing of specific medi=
cal conditions and directs you to the correct category. The tabular version=
is smaller, but the index version is just as authoritative. =20
For reasons that I cannot fathom, WHO only has the tabular version on Intern=
et. But I have on my hard drive photocopied copies of the page in the print=
ed index to ICD-10 that relates to CFS. "Syndrome, Fatigue, Chronic" goes i=
n G93.3.
In 1969, WHO placed M.E. In the neurology chapter, giving it the code 323.9.=
They gave it the formal name it was first blessed with in the mid-1950s, "=
benign Myalgic Encephalomyelitis," because it didn't have a high mortality r=
ate. However, The late Melvin Ramsay and other British experts immediately d=
iscarded the word "benign," because, as Ramsay put it, there was nothing "be=
nign" about this disease! Why WHO keeps that word is beyond me, but the poi=
nt is that M.E. had the code 323.9 under neurological conditions from 1969 o=
n.
In 1988, a new name and definition was introduced to the world. The name wa=
s Chronic Fatigue Syndrome, and the definition is known as Holmes 1988 for t=
he CDC epidemiologist who ran an earlier meeting to rename "Chronic Epstein-=
Barr." NOTHING, not even a footnote, in the Holmes 1988 article mentions M.E=
. or its American version, epidemic neuromyesthenia. But that same year the=
late Stephen Straus of NIAID at NIH published an article tying CFS to epide=
mic neuromyesthenia - and also to "mental health problems," citing two artic=
les published in the early 1970s in the BMJ insisting that M.E. was really m=
ass hysteria because the outbreaks occurred among female students and nurses=
living in residential dormitories. Soon British psychiatrist Simon Wessely=
had switched that to "neurasthenia" (citing a text written in 1869 - can yo=
u imagine the type of medical information available in 1869? The recommende=
d action for a bullet in the leg was to saw the thing off.). Straus, Wessel=
y, psychiatrist Peter White, and CDC's head of CFS, Bill Reeves, all juxtapo=
sed the insistence that this disease was psychogenic with statements about i=
t mainly impacting women - they even showed a slide of a woman in Edwardian d=
ress lying back on a fainting couch. The American version did not use neura=
sthenia (which is not in DSM-IV), substituting instead "stress" - at first y=
uppie stress caused by "trying to have it all," later, an inability to handl=
e "stress" caused by childhood traumas. =20
Chronic Fatigue Syndrome never made it into WHO's ICD-9 because by 1988, WHO=
was busy working on ICD-10, which was published a couple of years afterward=
s. So the US had carte blanche to put it where they wanted to. Since CDC l=
iked to diagnose it by beginning with "chronic fatigue" and narrowing that d=
own to "chronic fatigue syndrome," CFS was placed in the category "vague sig=
ns and symptoms," at 780.71.
Those who have complained that CFS is treated like a "garbage diagnosis" - w=
hat's left over after everything else has been ruled out - can point to that=
designation as the reason. That is the chapter where you PUT a garbage dia=
gnosis - and it would remain a "garbage diagnosis" in ICD-10-CM version if i=
t was coded in chapter "R" at R53.82.
When WHO got around to coding CFS, it went into the same category as M.E. an=
d a diagnosis not given that frequently any more, PVFS, or post-viral fatigu=
e syndrome. That does not mean they are the same thing. It does mean that W=
HO considers them similar, and it also means that WHO decided CFS belonged i=
n neurology, not "vague signs and symptoms."
British psychiatrists have tried to use "neurasthenia" (a nervous condition,=
the vapors, a nervous breakdown) instead of M.E., but they have been scold=
ed by Parliament for doing so because it violates ICD-10. So the Peter Whit=
e/Simon Wessely/Michael Sharpe crowd created the designation "fatigue syndro=
me," which IS coded to F48.0, or neurasthenia. =20
Trust me, this game is full of land mines.
ICD-10 was out and in use early in the 1990s. Canada adopted it soon after t=
he millennium change, but where CFS was only in the index of ICD-10, Canada'=
s version, ICD-10-CA, placed it in the tabular version at G93.3. Since some=
Canadian doctors diagnosed M.E. and others diagnosed CFS, the National M.E.=
/FMS Society of Canada brought together an international committee of clinic=
ians to create a CONSENSUS criteria, which was adopted by Canada in 2003. T=
he document ran 100 published pages with a huge bibliography in the Journal o=
f CFS, but Bruce Carruthers and Marjorie van de Sande wrote a summary, which=
we all know (and love) as that marvelous multicolored pamphlet that has bee=
n handed out all over the world, made available to all by the Canadian ME/FM=
S Society (with thanks to Lydia Neilson).
If you liked the Canadian Consensus Criteria, you should be pleased with the=
designation of CFS in G93.3 with M.E., because that is why it exists.
ICD-10 has been out in the world for twenty years now, and WHO is working on=
ICD-11. If it were up to me, we would, frankly, just skip ICD-10-CM altoge=
ther and wait a couple more years and then adopt ICD-11-CM, but we're not go=
ing to do that.
So, what are the choices for ICD-10-CM?
1. Reeves wanted it coded at R53.82 - that is, in the chapter on vague sign=
s and symptoms, the garbage diagnosis chapter. WE WOULD BE THE ONLY NATION I=
N THE WORLD TO DO SO. =20
2. CFSAC has twice recommended we follow Canada's lead and put CFS in G93.3=
with M.E. and PVFS. I think this is the simple and obvious solution - part=
icularly since it is probable WHO will continue to code CFS and M.E. togethe=
r in ICD-11.
3. I have heard of a compromise where CFS would be placed in neurology (the=
reby fulfilling the requirement that it remain in the same chapter), but pl=
ace it in a different location in G. I disagree with this for the simple re=
ason that we have NEVER fared well when CDC went against the rest of the wor=
ld where our disease is concerned.
Back in the 1950s, when the rest of the world was diagnosing M.E., the U.S. w=
ent its own way with the name epidemic neuromyesthenia. That hurt us in the=
1980s. Had the North Tahoe and Lyndonville outbreaks occurred in the UK, t=
he patients would have been diagnosed with M.E. But M.E. was unknown in the=
US, and very few clinicians still alive used epidemic neuromyesthenia (plus=
the word "epidemic" gave CDC hives).
I vividly recall years when NCHS at CDC pulled M.E. from ICD-9-CM altogether=
. Because of that, most computerized coding systems (which is what everyone=
uses) do not even include 323.9 - and that can make it hard to get reimburs=
ed for an M.E. diagnosis. I don't want to see G93.3 mysteriously disappear i=
n the same fashion.
So - I think the U.S. should quit playing the Lone Ranger here, and support M=
.E. by supporting the designation of G93.3 for CFS. We can distribute both t=
he 2003 Canadian consensus criteria and the new definition of M.E. that was p=
ublished with an October 2011 date in the "Journal of Internal Medicine."
I have attended almost every CFSCC and CFSAC meeting since 1996 - sometimes i=
n a wheelchair, but I was always there. I think our best argument for legit=
imizing M.E. is to point to it in ICD-10 and ICD-10-CA (Canada's version - G=
ermany followed Canada, but Australia followed the UK. NOBODY followed the C=
DC.)
Mostly, however, I have enormous respect for our pragmatic, intelligent neig=
hbors to the North. If Canada put CFS in G93.3, that's good enough for me.
Mary Schweitzer
Patient, advocate, author
=20=
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