Monday, July 13, 2015

ME and CFS By Mary Schweitzer

ME and CFS

By Mary Schweitzer

This disease was first documented in a cluster
outbreak in Los Angeles in 1934, in the middle of a
polio outbreak.

It was given the name Atypical Polio, and through
other cluster outbreaks it either was called that, or
sometimes Icelandic Disease for an outbreak there.

In 1955, when the Polio vaccine supposedly
eliminated polio (not quite), there were three major
cluster outbreaks in the UK.

The most famous was an outbreak among medical
personnel at Royal Free Hospital in London. That
ended up being given the name Myalgic
Encephalomyelitis (actually, originally benign
Myalgic Encephalomyelitis because it didn't
immediately kill you - and WHO still includes the
word benign, tho it was soon dropped by
physicians because, as Ramsay said:

"There's nothing benign about ME"

In 1969, ME was added to the ICD codes under

ME is coded at 323.9 in the chapter on neurology
in ICD-9-CM, which the US is still using (until
October 1), though it has been known to disappear
for a while ...

Ramsay and Richardson and several other British
clinicians continued to work on ME for a while, and
Ramsay published a textbook on it in 1986, revised
in 1988. You can find his definition of ME from his
1986 textbook (reformatted with more white
spaces to be easier to read) here:

In the US, the term ME was simply not used.

Instead, the US adopted "Epidemic

The term had fallen pretty much out of use by the
mid-1980s cluster outbreaks, unfortunately. But
because of that, we in the US do not have a history
of ME diagnoses, and most doctors have never
heard of it.

Up through the 1960s, Multiple Sclerosis had been
diagnosed as "Hysterical Paralysis" - but the proof
of the deterioration of the myelin sheath ended

I include this because - what a coincidence -
suddenly in 1970 and 1971 there were two articles
asserting that ME was really "Hysterical Paralysis" -
solely on the evidence that some of the outbreaks
had occurred in women's or girls' dorms.

I've always thought they were looking for
somebody to take the place of the MS patients in
their clinics ...

"Hysterical" never caught on - but its flip side,
"Neurasthenia" (a nervous condition, the vapors)
became the favorite diagnosis of British

       It was not generally used in the US. But
       when British psychiatrists USED this
       diagnosis, they were violating the rules of
       WHO's ICD, because it was supposed to
       be coded under neurology, not psychiatry.

Then in the mid 1980s there were cluster outbreaks
of the disease all over the place - the United States,
Canada, the UK, Australia.
At first, the late Stephen Straus of NIAID (the
National Institute for Allergies and Infectious
Diseases at NIH) insisted it was Chronic
Epstein-Barr, because the trigger in many of these
outbreaks was a cluster outbreak of Epstein-Barr
(Mono, Glandular Fever).

THEN, Straus found it was not clearly due to EBV,
and for reasons that still escape me, he became
furious at the patients. Really....

Straus began using the phrase "the Chronic Fatigue
Syndrome" in 1986 in his funding requests. In
1988, there was a conference headed by Straus
and by Holmes of CDC to name and define this
"new" entity.

There were at least four researchers or clinicians
who knew what ME was at the conference, and
they strongly urged that the committee recognize
the outbreaks as ME.

They were ignored.

Holmes published a definition for the newly named
"Chronic Fatigue Syndrome" after the committee
met, and that became known as Holmes Criteria
(1988). The article never mentioned ME. 

Then the British shrinks came up with their own
definition for "CFS", where they did not exclude
psychiatric symptoms and any physical explanation
for the symptoms DID get the patient excluded.

As you can imagine, this definition has really
muddied the waters by producing very different
data sets, pulling in a lot of patients with primary
depression or anxiety.  It is called the "Oxford
In 1994 there was an attempt to reconcile the
international definitions, and the result was what is
called Fukuda (1994).

Most good biomedical research has been done
using Fukuda - but I personally think they started
out using a tighter-defined group of patients, often
from a cluster outbreak.

The Fukuda definition requires 6 months of
"debilitating fatigue," and then 4 of 8 symptoms
(substantial impairment in short-term memory or
concentration; sore throat; tender lymph nodes;
muscle pain; multi-joint pain without swelling or
redness; headaches of a new type, pattern, or
severity; unrefreshing sleep; and post-exertional
malaise lasting more than 24 hours).

       The biggest problem with Fukuda is that
       patients could have four symptoms that really
       aren't indicative of ME or cluster-outbreak

CFS was never put into WHO's ICD-9 codes
because WHO was getting ready to roll out

So the US put it under "vague signs and symptoms"
in ICD-9-CM, which will be in use in the US until
October 1.

In ICD-9-CM (which is what your doctor currently
uses in the US), CFS is coded at 780.71 and ME
is coded at 323.9.

The UK adopted ICD-10 in the mid 1990s;
Canada adopted its own version, ICD-10-CA in

Both ME and CFS are coded to G93.3 along with
Postviral Fatigue Syndrome in the WHO's ICD-10.
However, CFS was only in the index, not in the
more formal tabular version.

In 2003, Canada added CFS to the tabular version
to their ICD-10-CA, and put them all at G93.3 -
under Neurology.

The National ME/FM Action Network of Canada
created a very good definition to go with the new
Canadian category, calling the disease  ME/CFS.

So there IS a legitimate definition for ME/CFS - it
is the Canadian Consensus Criteria (CCC) for
Canada's ICD-10-CA classification of ME and
CFS at G93.3 (Actually, that is the "International
Consensus Criteria" (2003) - but since there are
two other sets of definitions called the International
Consensus Criteria, most of us use CCC.)

Meanwhile, in the US, in anticipation of moving to
ICD-10, CFSAC recommended in 2004 that the
US adopt the Canadian definition. It repeated that
recommendation several times over the next
decade, and finally, in 2014, CFSAC asked for an
open workshop of professionals to update the
Canadian Consensus Criteria, or CCC, as it is
often called, and then to adopt it.

The result was a flurry of activity, but not as
CFSAC had requested. And it may have been due
to other factors as well.

There was the IOM, which suggested renaming the
disease SEID (Systemic Exertion Intolerance
Disease), and the P2P. 

Both were very rushed and it is unclear how much
impact they will have on the government health
agencies they were supposedly advising.

However, both stressed that this is not a psychiatric
disorder. (The biggest problem with SEID is that it
omitted the exclusions that were in Fukuda and the
CCC, and that can result in a very strange data set,
a mess for both researchers and clinicians.

In the meantime, in 2011 a group of clinicians and
researchers met in Calgary in Canada to create a
new research definition for Myalgic
Encephalomyelitis, which they then published in the
Journal of Internal Medicine.

It REQUIRES post-exertional exacerbation of

As the US moves into ICD-10-CM in October,
CFS will not be put in G93.3 with ME.

It will be coded at R53.82 - back in vague signs
and symptoms.

Changing the chapter is a SERIOUS departure
from WHO's rules for using ICD (and your nation's
own version of it). I know of no other disease or
disorder where the US has done that, frankly.

NCHS (which is within CDC), who is in charge of
the various US ICD-CM codes, insists that the
R53.82 code means they are "not changing" how
CFS is coded - but they have definitely changed
how it is coded in WHO's ICD-10.

I think they are being deliberately misleading. I
heard them testify back in 2003 that CFS and ME
were both going to be in G93.3 in ICD-10-CM -
then they came back in 2005 and all that had
changed, after Bill Reeves of CDC had insisted
vociferously that they not "change" where CFS is
(from the US standpoint, but obviously not from the
international standpoint).

1 comment:

John Fredrik said...
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