atigue Syndrome (CFS) as neurological and code it to Myalgic Encephalomyeli=
tis (ME) at G93.3.=20
[Coalition 4 ME/CFS ICD-10-CM & ICD-9 revisions for Chronic Fatigue Syndrom=
e (CFS) http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011=
.pdf]
The premise that the Coalition 4 ME/CFS has used is that ME is the same as =
CFS and thus the ME=3DCFS=3DME/CFS model. They are not the same. The defini=
tions are different. ME is not a fatigue syndrome. Some symptoms may overla=
p, as with many illness (and considering that CFS is so broad), but they ar=
e different in nature and outcome.
The Coalition states that "there are over 4000 scientific papers on ME/CFS"=
[page 2, http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-20=
11.pdf]).=20
This is not true, with regard to ME/CFS=C2=A0(as the Canadian Criteria) or =
just the generalized use (or misuse) of the term. A medline search for ME/C=
FS listed 46, not 4000. Is this yet another haphazard, general unofficial s=
ubstitution of the term ME/CFS?=20
The rationale upon which they base their request to change the ICD codes fo=
r CFS can be broken down as follows:
1. The Coalition 4 ME/CFS states that the purpose for the changes to the IC=
D codes is to bring the codes in line with the definition [http://coalition=
4mecfs.org/ICDPR.html].
This proposal does not accomplish this intention. NCHS has coded them prope=
rly. The current US ICD codes are already in line with the definitions. NCH=
S has coded ME and CFS accurately in the ICD-9 CM=C2=A0 and the intent for =
the ICD-10-CM. CFS does not strictly define a neurological illness. Codes s=
hould accurately reflect and match the definition and classification. CFS i=
s by definition a symptom syndrome and coding is accurate at R53.82 (under =
general signs symptoms).=20
The Coalition 4 ME/CFS states:=20
"... the goal is to ensure alignment with the best case definition for CFS,=
which includes both viral and bacterial triggers."=20
[http://coalition4mecfs.org/ICDPR.html]
No CFS definitions include viral and bacterial triggers.
The Coalition 4 ME/CFS=C2=A0 does not designate what the "best case definit=
ion" is as there are several, which may be different. NCHS is part of the C=
DC. This NCHS Committee is to properly code existing illnesses. It should a=
dhere to US/HHS policies. This would require staying within the confines of=
the current recognized and accepted HHS/CDC definitions. Codes do not defi=
ne illnesses nor change case definitions.=20
If the Coalition wanted to specify a "best case definition," they should ha=
ve done so=C2=A0and THEN push for its acceptance and THEN code it according=
ly. If this is what they were getting at, they skipped a critical step in t=
he process.
2. The Coalition 4 ME/CFS states that the purpose of the proposal to NCHS i=
s to code CFS as neurological.
"The Coalition 4 ME/CFS on July 15, 2011, submitted a proposal to the Natio=
nal Center for Health Statistics (NCHS) for reclassification of chronic fat=
igue syndrome (CFS) as a neurological disease in the United States Internat=
ional Classification of Diseases-10-CM (ICD-10-CM) and International Classi=
fication of Diseases-9-CM (ICD-9-CM)."=20
http://coalition4mecfs.org/ICDPR.html
None of the CFS definitions define what would be recognized as identifying=
a neurological disease.=20
A recent survey of members of a Neurological Association demonstrated that =
84% do not view CFS as a neurological illness. ("Chronic Fatigue Syndrome: =
Labels meanings and consequences," Journal of Psychosomatic Research, 9 Apr=
il, 2011) The abstract notes that *"this is at odds with the WHO classifica=
tion." They do not view it as neurological because the definition does not =
support it as neurological DESPITE the WHO classification. Codes will not o=
verride the definition.=20
=20
3. WHO ICD 10 and other countries have adopted the coding of CFS to ME at G=
93.3.=20
There are many CFS definitions=C2=A0 and other countries can make their own=
decisions and code them accordingly. Likewise the US should base it on the=
convention of our own policies, not based on other countries.=C2=A0 The pu=
rpose of the Clinical Modification is to allow for such convention and chan=
ges or modifications can be determined according to each countries standard=
s and policies.
NCHS has given the following explanation:
"While it appears most appropriate to classify chronic fatigue syndrome in =
ICD-10-CM in the same way that it is classified in ICD-10, this placement i=
s not without problems.=C2=A0 The primary concern with the current WHO plac=
ement in ICD-10 has been that the abnormalities of the brain in chronic fat=
igue syndrome patients most often cited in the literature are not found in =
all chronic fatigue syndrome patients.=C2=A0 While chronic fatigue syndrome=
may be a heterogeneous group of disorders, some but not all are neurologic=
al in nature.=C2=A0Likewise, not all patients have experienced a viral infe=
ction prior to being diagnosed with chronic fatigue syndrome, nor are immun=
e system anomalies universally found.=C2=A0 Also of potential concern is th=
e similarity between the type of neurological findings in chronic fatigue s=
yndrome and in depression, which is a psychiatric disorder."=C2=A0=20
[A Summary of Chronic Fatigue Syndrome and Its Classification in the Intern=
ational Classification of Diseases Prepared by the Centers for Disease Cont=
rol and Prevention, National Center for Health Statistics, Office of the Ce=
nter Director, Data Policy and Standards, http://www.co-cure.org/ICD_code.p=
df]
This statement by NCHS is accurate and this is why the US should not make =
the changes requested by the Coalition 4 NCHD as it is not in line with wit=
h the definitions used by the US federal health agencies.=20
The Coalition 4 ME/CFS claims that adopting the WHO convention of coding CF=
S to ME together at G93.3 would improve the diagnosis and patient care (see=
# 2). Actually in countries that have made these changes there has been no=
improvement in research, diagnosis, recognition or the general CFS worldvi=
ew.=20
4. The Coalition 4 ME/CFS claims that research findings support their reque=
st.=20
[http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf pa=
ge 5]
=20
A section in the proposal is entitled neurological pathology. It states "Pa=
in, debilitating fatigue and *especially post exertional malaise are hallma=
rks of CFS."=20
This is not true. Post exertional malaise is not a hallmark of CFS. In CFS =
(Fukuda), the definition most widely recognized and used in the US, post ex=
ertional malaise is minor and optional. If something is optional it is not =
a hallmark.=20
Symptoms that are listed in the CFS definitions, some may be neurological b=
ut not necessarily (see # 2). In total it would not reflect a neurological =
illness.=20
Cited research shows findings in some patients (see NCHS statement, #3). Ag=
ain, researchers may use different terms and definitions so findings may no=
t be generalizable and will not be specifically identifiable in CFS.=C2=A0 =
And some ME findings would be excluded from some CFS definitions. Research =
findings then may not be applied or will not be recognized or included with=
in the CFS definition or treatment guidelines. If an illness excludes that =
which you have, then you do not have that illness.
These citations used by the Coalition 4 ME/CFS would be like citing the ass=
ociation of schizophrenia with infectious agents. Infectious agents have be=
en found, but schizophrenia would not be reclassified as an infectious dise=
ase.
5. CFSAC has made recommendations to change the name to ME/CFS and code CFS=
to ME as neurological.=20
"The CFSAC recommended that CFS should be classified in ICD-10-CM in Chapte=
r 6 under "diseases of the nervous system" at G93.3, to be in line with ICD=
-10 and ICD-10-CA (the Canadian Clinical Modification)" (May 2011 meeting =
minutes)
(See # 3.)
We should not try to be in line with the Canadian ICD-10-CA. They have thei=
r own health system and conventions. They have a specific ME/CFS definition=
(Canadian Criteria CCC) that they use based on a Health Canada panel. Heal=
th Canada established the "Terms of Reference." Any researcher may use thes=
e criteria but they are not recognized or referenced in the US or by US hea=
lth agencies in any official capacity. There is no ICD code for ME/CFS so i=
s not a recognized diagnosic entity.=20
Otherwise ME/CFS is another made up term with different meanings and should=
not be used in the US any official capacity.
CFSAC should recognized the importance of having the codes accurately refle=
ct the definition congruent with the US federal health system. They should =
only recommend that which is in accordance with sound scientific and taxono=
mic principles, and not based on politics or PR or influenced by signs, slo=
gans, posters or tee shirts.=20
6. The Coalition 4 ME/CFS mentions that NIH has used the term ME/CFS.=20
Other agencies have not. HHS should not allow different agencies to change =
names or definitions or adopt or use different terminology or meanings, esp=
ecially any that would run counter to that of other agencies within the dep=
artment.=20
7. The Coalition 4 ME/CFS mentions that people use ME/CFS or use ME and CFS=
interchangeably.=20
Using terms incorrectly and repeating a falsehood does not make it true. In=
fact, this group is most guilty of publishing and advertising=C2=A0all kin=
ds of ME=3DCFS=3DME/CFS (mis)information. One cannot cite ones own informat=
ion or errors as an example or for justificattion. It is as if saying that =
they are the same makes it so. And repeat: CFS, also known as ME.... so th=
is proves it.(?) Say-so medicine is not acceptable.=20
Anyone can call it or use whatever term they want (e.g. CFIDS), and researc=
hers can research whatever they want, but federal health agencies should ad=
here to scientific principles which require specificity and consistency of =
accurately designating what they are studying and to which patient cohort i=
t applies and what it is called, *and all must match, not used differently =
or to mean different things. It is this disconnect regarding definition/cod=
es/terminology which has confounded research results and created the incons=
istency and confusion, and resulting in the lack of acceptance, understandi=
ng or progress. Without agreed upon objective diagnostic criteria that is n=
amed specifically and used consistently there can be no compelling science =
or meaningful research results.
8. The Coalition maintains or agrees that ME is not diagnosed in the US or =
seen in medical records.=20
This is not true. ME is diagnosed in the US. It is not well recognized, whi=
ch is a problem, but this does not justify keeping it as a CFS (mis)diagnos=
is. It is of course not as common as a vague, broadly defined fatigue syndr=
ome, but prevalence does not justify eliminating ME.=20
9. Myalgic Encephalomyelitis - International Consensus Criteria (ME-ICC) ["=
Myalgic Encephalomyelitis - International Consensus Criteria"
Journal of Internal Medicine, Volume 20, Issue 4, p 327-338=20
[http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full]
The Coalition 4 ME/CFS claims that the ME-ICC supports their position.=20
ME-ICC states:
"The label =E2=80=98chronic fatigue syndrome=E2=80=99 (CFS) has persisted f=
or many years because of the lack of knowledge of the aetiological agents a=
nd the disease process. In view of more recent research and clinical experi=
ence that strongly point to widespread inflammation and multisystemic neuro=
pathology, it is more appropriate and correct to use the term =E2=80=98myal=
gic encephalomyelitis=E2=80=99 (ME) because it indicates an underlying path=
ophysiology. It is also consistent with the neurological classification of =
ME in the World Health Organization=E2=80=99s International Classification =
of Diseases (ICD G93.3)."
"The scope of this paper is limited to criteria of ME and their application=
. Clinical and research application guidelines promote optimal recognition =
of ME by primary physicians and other healthcare providers, improve the con=
sistency of diagnoses in adult and paediatric patients internationally and =
facilitate clearer identification of patients for research studies."
"Using =E2=80=98fatigue=E2=80=99 as a name of a disease gives it exclusive =
emphasis and has been the most confusing and misused criterion. No other fa=
tiguing disease has =E2=80=98chronic fatigue=E2=80=99 attached to its name =
=E2=80=93 e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue =
=E2=80=93 except ME/CFS. Fatigue in other conditions is usually proportiona=
l to effort or duration with a quick recovery and will recur to the same ex=
tent with the same effort or duration that same or next day.The Internation=
al Consensus Criteria (Table=C2=A01) identify the unique and distinctive ch=
aracteristic patterns of symptom clusters of ME".=C2=A0=20
The ME-ICC conveys that ME=C2=A0 has been erroneously called CFS and should=
not be. ME should be called ME, NOT CFS. It highlights the misuse of "fati=
gue" and the confusion it has caused. It specifically objects to and reject=
s having fatigue attached to the name so it would NOT support the use or cr=
eation=C2=A0of ME/CFS, which is the basis for all of the Coalition's ME=3DC=
FS=3DME/CFS positions.=20
This ME-ICC definition is clearly about the distinction between them. The M=
E-ICC is about the definition, scope and application of ME. The stated purp=
ose of the ME-ICC was=C2=A0to "help clarify the unique signature of ME."=C2=
=A0 Not CFS. The Coalition 4 ME/CFS proposal to merge ME and CFS with the s=
ame ICD codes would be the opposite of what the ME-ICC is calling for.=20
10. The Coalition claims that coding ME and CFS together would offer protec=
tion from inclusion in the DSM.
It is really the opposite. The WHO and the American Psychiatric Association=
(APA) are collaborating on the revision process for ICD-11 and DSM-V to en=
sure consistency and to achieve =E2=80=98harmonization between ICD-11 menta=
l and behavioural disorders and DSM-V disorders and their diagnostic criter=
ia.=E2=80=99=20
The concern with the harmonization of the ICD and DSM is related to the ove=
rlap and mixing of these terms and definitions that allow the constant shif=
ting. CFS definitions are so broad and vaguely worded that those with menta=
l health issues can fit the definition, thus allowing psychiatrists to cher=
ry pick the patients. But if they fit the definition, they "have" CFS.=20
The mixing and connecting of ME to CFS is what would CAUSE the possibility =
of inclusion of ME in the DSM. What is being proposed by the Coalition 4 ME=
/CFS is to create a mixed cohort at G93.3, and these conditions could event=
ually be moved to the mental health category. If ME is recognized as a dis=
tinct neurological illness with testable pathology and not an unexplained f=
atigue syndrome, it would not belong in the DSM.=20
ESME recently released a statement.
ESME recommend that: Researchers use the ICC exclusively and call the disea=
se ME in all written documents about their research. Government agencies/fo=
undations give research grants to scientists using the ICC. Government agen=
cies/institutions officially adopt the ICC and post them on official websit=
es. Doctors use the ICC to diagnose patients and write only ME G93.3 in pat=
ient journals or in all written documents about these patients. Advocates/p=
atient associations speak with one voice by agreeing to call the disease ME=
.
=C2=A0
ME should not be called CFS. CFS should not be called ME. Thus ME/CFS shoul=
d be abandoned, which is what the Coalition 4 ME/CFS is using. This proposa=
l by the Coalition 4 ME/CFS to NCHS is the antithesis of the ME-ICC and ESM=
E statement.=20
To voice your objection to this proposal to code ME and CFS together, conta=
ct NCHS <nchsicd9CM@cdc.gov>, Donna Pickett=C2=A0 <dfp4@cdc.gov>
Deadline for comments is Nov.18.
.
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