ME, CFS, ME/CFS: Importance of Accuracy and Consistency in Terminology, Definitions, Diagnoses etc.

CFSAC Testimony - Jill McLaughlin - October 3, 2012

My name is Jill Mclaughlin. I have been involved in advocacy for 15 years and have attended many conferences and meetings. Once we realized that our daughter had ME, not CFS, I became an ME advocate.

For the last CFSAC meeting, registration required an "organizational affiliation." The vast majority of patients do not belong to these groups. By the time it was corrected, all of the spots were filled - by these ME/CFS groups. This hardly gives a fair, unbiased representation.

CFSAC

The CFSAC website states that the purpose is to advise "on issues related to Myalgic Encephalomyelitis and
CFS (ME/CFS)."

It is unclear as to what this means. A name change? The purpose of a name change has always been to eliminate  the trivializing and demeaning CFS, which this will not do. We do not need 2 names.

There is no WHO recognition or ICD codes for ME/CFS. The CFSAC Charter and by-laws specify CFS, not ME or ME/CFS. An advisory committee should advise, not implement or change policy or terminology and meanings.

For example, Fibromyalgia and RSD are pain syndromes, with overlapping symptomatology. But an FM committee should not take over RSD, become about RSD/FM, or change or combine terms and diagnoses.

Case Definitions

CFS should not be combined with, called, classified or coded to ME.

ME has been classified by the WHO as a distinct neurological illness since 1969.

The CFS definition is fatigue plus 4 minor, non-specific symptoms. This hardly describes or identifies a neurological illness.

In fact, CFS specifically excludes neurological illnesses.

Also, ME and CFS are in different Chapters of the US ICD 10-CM, which specifically excludes R53.3 CFS from G93.3 ME, and vice versa.

That which is an exclusion cannot be an equivalent.  So according to CDC and NCHS, ME and CFS are different.

This ME=CFS=ME/CFS paradigm is the false illness beliefs being espoused by these "ME/CFS" groups, such as the CFIDS Association of America, Pandora, Phoenix Rising, Coalition 4 ME/CFS etc.

US ICD Coding

CDC and NCHS currently have ME and CFS accurately - and separately - classified according to their respective case definitions.

CFS is a syndrome, which is defined by symptoms. A disease (such as ME) is characterized by symptoms plus objective and measurable findings. Fatigue has always been ill defined and has no objective markers.

Whatever CFS is, the CFSAC can ponder, rename, redefine; but it is not ME and should not be combined or connected to it.

There are also serious clinical implications of combining, conflating or mislabeling ME and CFS. For example, exercise is recommended for CFS, but is harmful - or potentially fatal - for ME patients.

The use of blended or combined terms and diagnoses creates mixed cohorts, yielding inconsistent or meaningless research results.

Yes we need a new paradigm: ME is ME and CFS is CFS. Fatigue research will never help those with serious neurological impairments.

Yet ME/CFS case definition is on the agenda.  And the ME/CFS groups, under the guise of the Coalition 4 ME/CFS, again this year continues to push NCHS to code CFS to ME, when this proposal was rejected last year.

Coding and classifications are scientific determinations, not consensus issues, which are based on opinions and preferences.

For example, infectious agents have often been associated with Schizophrenia, but could advocates lobby to re-classify Schizophrenia as an infectious disease? I doubt it.

WHO Classification

There has been a good deal of misinformation on the WHO classification of ME and CFS.

CFS is not classified in the Tabular listing, but is only in the Alphabetical Index, referenced to ME.

WHO does NOT say that ME and CFS are synonymous. WHO gives various possible relationships between terms in the Alphabetical index and the term to which it is indexed.

One possible choice is "an imprecise and undesirable term." Given the stigma and derision that CFS has caused, it would be hard to disagree with this.

HHS

All HHS agencies correctly use the term CFS, except NIH-ORWH and CFSAC.

Patient groups can call it or make up whatever they want on their blogs and websites, but federal agencies cannot summarily change, substitute or make up terms and meanings.

HHS must adhere to the US Department of Health and Human Services Policies and Principles for Assuring Scientific Integrity.

 http://www.cdc.gov/od/science/docs/Scientifc_integrity_principles_12-19-11.pdf

HHS requires that all agencies, employees, and committees must comply by adhering to official rules, regulations, policy and procedures, which must include the recognition of official terminology, criteria, classifications, diagnoses etc.

Therefore, CFSAC should as well.

Respectfully Submitted by Jill McLaughlin