FWIW, here goes
the Ego part. For better or worse, i am one of the smartest people i have
ever met. so, all of you who hate me because
i am a smart ass, can sign off or hit the delete button now. Also, I have
sent my old Videos from CNN's Larry king Live (twice) and the
MacNeil/Lehrer News Hour, and numerous other cable TV shows and CBS's 48
Hours, and NBC's Dateline, and ABC's 20/20, and forty or fifty hours more
of TV shows on VHS, has now been transferred to Digital media and sent
to at least 50 people in more than 20 countries who are ready to go the
Internet, in case i accidentally get Hit by train, or have my brakes fail,
or some other seeming "accident" in the next few months, i will predict
here and now, that it won't be an accident.
OK, Now for the meat in this sandwich. Personality wise, she is tough to
deal with, but i think Jill McLaughlin is MUCH closer to the facts than the
so-called "ME/CFS" coalition.
I have told her repeatedly, that i agree with her almost completely on the
facts, but that she rubs soooo MANY people the wrong way (including my late
father), that her message gets lost in the delivery.
After reading more than 30,000 emails, letters, faxes, FB messages and
personal meetings with people from all over the world, IMNAHO (In my NOT
always Humble opinion)
These are NOT one disease, nor do they have ONE trigger.
I believe that these are cases of Multiple CHRONIC IMMUNOLOGICAL AND
NEUROLOGICAL DISEASES aka CIND. that is where the name RESCIND, INC. comes
from, some 20 years ago.
The Coalition 4 ME/CFS submitted a proposal to NCHS to reclassify Chronic
Fatigue Syndrome (CFS) as neurological and code it to Myalgic
Encephalomyelitis (ME) at G93.3.
[Coalition 4 ME/CFS ICD-10-CM & ICD-9 revisions for Chronic Fatigue
Syndrome (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
definitions are different. ME is not a fatigue syndrome. Some symptoms may
overlap, as with many illness (and considering that CFS is so broad), but
they are 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_7-15-2011.pdf]).
This is not true, with regard to ME/CFS (as the Canadian Criteria) or just
the generalized use (or misuse) of the term. A medline search for ME/CFS
listed 46, not 4000. Is this yet another haphazard, general unofficial
substitution of the term ME/CFS?
The rationale upon which they base their request to change the ICD codes
for CFS can be broken down as follows:
1. The Coalition 4 ME/CFS states that the purpose for the changes to the
ICD codes is to bring the codes in line with the definition [
http://coalition4mecfs.org/ICDPR.html].
This proposal does not accomplish this intention. NCHS has coded them
properly. The current US ICD codes are already in line with the
definitions. NCHS has coded ME and CFS accurately in the ICD-9 CM and the
intent for the ICD-10-CM. CFS does not strictly define a neurological
illness. Codes should accurately reflect and match the definition and
classification. CFS is by definition a symptom syndrome and coding is
accurate at R53.82 (under general signs symptoms).
The Coalition 4 ME/CFS states:
"... the goal is to ensure alignment with the best case definition for CFS,
which includes both viral and bacterial triggers."
[http://coalition4mecfs.org/ICDPR.html]
No CFS definitions include viral and bacterial triggers.
The Coalition 4 ME/CFS does not designate what the "best case definition"
is as there are several, which may be different. NCHS is part of the CDC.
This NCHS Committee is to properly code existing illnesses. It should
adhere to US/HHS policies. This would require staying within the confines
of the current recognized and accepted HHS/CDC definitions. Codes do not
define illnesses nor change case definitions.
If the Coalition wanted to specify a "best case definition," they should
have done so and THEN push for its acceptance and THEN code it accordingly.
If this is what they were getting at, they skipped a critical step in the
process.
2. The Coalition 4 ME/CFS states that the purpose of the proposal to NCHS
is to code CFS as neurological.
"The Coalition 4 ME/CFS on July 15, 2011, submitted a proposal to the
National Center for Health Statistics (NCHS) for reclassification of
chronic fatigue syndrome (CFS) as a neurological disease in the United
States International Classification of Diseases-10-CM (ICD-10-CM) and
International Classification of Diseases-9-CM (ICD-9-CM)."
http://coalition4mecfs.org/ICDPR.html
None of the CFS definitions define what would be recognized as identifying
a neurological disease.
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
April, 2011) The abstract notes that *"this is at odds with the WHO
classification." They do not view it as neurological because the definition
does not support it as neurological DESPITE the WHO classification. Codes
will not override the definition.
3. WHO ICD 10 and other countries have adopted the coding of CFS to ME at
G93.3.
There are many CFS definitions 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. The purpose
of the Clinical Modification is to allow for such convention and changes or
modifications can be determined according to each countries standards 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
is not without problems. The primary concern with the current WHO
placement in ICD-10 has been that the abnormalities of the brain in chronic
fatigue syndrome patients most often cited in the literature are not found
in all chronic fatigue syndrome patients. While chronic fatigue syndrome
may be a heterogeneous group of disorders, some but not all are
neurological in nature. Likewise, not all patients have experienced a viral
infection prior to being diagnosed with chronic fatigue syndrome, nor are
immune system anomalies universally found. Also of potential concern is
the similarity between the type of neurological findings in chronic fatigue
syndrome and in depression, which is a psychiatric disorder."
[A Summary of Chronic Fatigue Syndrome and Its Classification in the
International Classification of Diseases Prepared by the Centers for
Disease Control and Prevention, National Center for Health Statistics,
Office of the Center Director, Data Policy and Standards,
http://www.co-cure.org/ICD_code.pdf]
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
with the definitions used by the US federal health agencies.
The Coalition 4 ME/CFS claims that adopting the WHO convention of coding
CFS 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
worldview.
4. The Coalition 4 ME/CFS claims that research findings support their
request.
[http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf pa=
ge
5]
A section in the proposal is entitled neurological pathology. It states
"Pain, debilitating fatigue and *especially post exertional malaise are
hallmarks of CFS."
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
exertional malaise is minor and optional. If something is optional it is
not a hallmark.
Symptoms that are listed in the CFS definitions, some may be neurological
but not necessarily (see # 2). In total it would not reflect a neurological
illness.
Cited research shows findings in some patients (see NCHS statement, #3).
Again, researchers may use different terms and definitions so findings may
not be generalizable and will not be specifically identifiable in CFS. 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
within 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
association of schizophrenia with infectious agents. Infectious agents have
been found, but schizophrenia would not be reclassified as an infectious
disease.
5. CFSAC has made recommendations to change the name to ME/CFS and code CFS
to ME as neurological.
"The CFSAC recommended that CFS should be classified in ICD-10-CM in
Chapter 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
their own health system and conventions. They have a specific ME/CFS
definition (Canadian Criteria CCC) that they use based on a Health Canada
panel. Health Canada established the "Terms of Reference." Any researcher
may use these criteria but they are not recognized or referenced in the US
or by US health agencies in any official capacity. There is no ICD code for
ME/CFS so is not a recognized diagnosic entity.
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
reflect the definition congruent with the US federal health system. They
should only recommend that which is in accordance with sound scientific and
taxonomic principles, and not based on politics or PR or influenced by
signs, slogans, posters or tee shirts.
6. The Coalition 4 ME/CFS mentions that NIH has used the term ME/CFS.
Other agencies have not. HHS should not allow different agencies to change
names or definitions or adopt or use different terminology or meanings,
especially any that would run counter to that of other agencies within the
department.
7. The Coalition 4 ME/CFS mentions that people use ME/CFS or use ME and CFS
interchangeably.
Using terms incorrectly and repeating a falsehood does not make it true. In
fact, this group is most guilty of publishing and advertising all kinds of
ME=3DCFS=3DME/CFS (mis)information. One cannot cite ones own information 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 this
proves it.(?) Say-so medicine is not acceptable.
Anyone can call it or use whatever term they want (e.g. CFIDS), and
researchers can research whatever they want, but federal health agencies
should adhere to scientific principles which require specificity and
consistency of accurately designating what they are studying and to which
patient cohort it applies and what it is called, *and all must match, not
used differently or to mean different things. It is this disconnect
regarding definition/codes/terminology which has confounded research
results and created the inconsistency and confusion, and resulting in the
lack of acceptance, understanding or progress. Without agreed upon
objective diagnostic criteria that is named 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.
This is not true. ME is diagnosed in the US. It is not well recognized,
which is a problem, but this does not justify keeping it as a CFS
(mis)diagnosis. It is of course not as common as a vague, broadly defined
fatigue syndrome, but prevalence does not justify eliminating ME.
9. Myalgic Encephalomyelitis - International Consensus Criteria (ME-ICC)
["Myalgic Encephalomyelitis - International Consensus Criteria"
Journal of Internal Medicine, Volume 20, Issue 4, p 327-338
[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.
ME-ICC states:
"The label =91chronic fatigue syndrome=92 (CFS) has persisted for many year=
s
because of the lack of knowledge of the aetiological agents and the disease
process. In view of more recent research and clinical experience that
strongly point to widespread inflammation and multisystemic neuropathology,
it is more appropriate and correct to use the term =91myalgic
encephalomyelitis=92 (ME) because it indicates an underlying pathophysiolog=
y.
It is also consistent with the neurological classification of ME in the
World Health Organization=92s 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 consistency of diagnoses in adult and paediatric patients
internationally and facilitate clearer identification of patients for
research studies."
"Using =91fatigue=92 as a name of a disease gives it exclusive emphasis and=
has
been the most confusing and misused criterion. No other fatiguing disease
has =91chronic fatigue=92 attached to its name =96 e.g. cancer/chronic fati=
gue,
multiple sclerosis/chronic fatigue =96 except ME/CFS. Fatigue in other
conditions is usually proportional to effort or duration with a quick
recovery and will recur to the same extent with the same effort or duration
that same or next day.The International Consensus Criteria (Table 1)
identify the unique and distinctive characteristic patterns of symptom
clusters of ME".
The ME-ICC conveys that ME has been erroneously called CFS and should not
be. ME should be called ME, NOT CFS. It highlights the misuse of "fatigue"
and the confusion it has caused. It specifically objects to and rejects
having fatigue attached to the name so it would NOT support the use or
creation of ME/CFS, which is the basis for all of the Coalition's
ME=3DCFS=3DME/CFS positions.
This ME-ICC definition is clearly about the distinction between them. The
ME-ICC is about the definition, scope and application of ME. The stated
purpose of the ME-ICC was to "help clarify the unique signature of ME."
Not CFS. The Coalition 4 ME/CFS proposal to merge ME and CFS with the same
ICD codes would be the opposite of what the ME-ICC is calling for.
10. The Coalition claims that coding ME and CFS together would offer
protection 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
ensure consistency and to achieve =91harmonization between ICD-11 mental an=
d
behavioural disorders and DSM-V disorders and their diagnostic criteria.=92
The concern with the harmonization of the ICD and DSM is related to the
overlap and mixing of these terms and definitions that allow the constant
shifting. CFS definitions are so broad and vaguely worded that those with
mental health issues can fit the definition, thus allowing psychiatrists to
cherry pick the patients. But if they fit the definition, they "have" CFS.
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
eventually be moved to the mental health category. If ME is recognized as
a distinct neurological illness with testable pathology and not an
unexplained fatigue syndrome, it would not belong in the DSM.
ESME recently released a statement.
ESME recommend that: Researchers use the ICC exclusively and call the
disease ME in all written documents about their research. Government
agencies/foundations give research grants to scientists using the ICC.
Government agencies/institutions officially adopt the ICC and post them on
official websites. Doctors use the ICC to diagnose patients and write only
ME G93.3 in patient journals or in all written documents about these
patients. Advocates/patient associations speak with one voice by agreeing
to call the disease ME.
ME should not be called CFS. CFS should not be called ME. Thus ME/CFS
should be abandoned, which is what the Coalition 4 ME/CFS is using. This
proposal by the Coalition 4 ME/CFS to NCHS is the antithesis of the ME-ICC
and ESME statement.
To voice your objection to this proposal to code ME and CFS together,
contact NCHS <nchsicd9CM@cdc.gov>, Donna Pickett <dfp4@cdc.gov>
Deadline for comments is Nov.18.
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