More on What's in a Name?

       >>>> Help ME Circle <<<<
>>>>    4 February 2008    <<<<
Editorship : j.van.roijen@chello.nl
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References:


*Name Change Website Launched* (Co-Cure)
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0801e&L=co-cure&T=0&P=2672

*Our Cause: Working for a fair name*
http://www.afairname.org/cause.cfm

"....In August, 2006, we launched a serious effort to
bring more validity to CFS, to give it a name that
more closely reflects the severity of the condition.
Toward this end, eight of the most highly regarded
CFS experts in the world came together and formed a
Name Change Advisory Board (NCAB). In January,
2007, they discussed recommendations for this new
name, finally deciding on ME/CFS. Their reasons?

1)  ME/CFS is medically and diagnostically correct,
reflecting the science of this illness, giving it the
credibility it deserves.

2)  Used as an umbrella term, ME/CFS will satisfy
those who wish to use Myalgic Encephalopathy,
and those who prefer Myalgic Encephalomyelitis.

3)  ME/CFS maintains "CFS," avoiding problems with
insurance or disability claims.


~jvr


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From: Frank Twisk < frank.twisk@hetnet.nl >



WHATS IN A NAME?

ME OR NOT ME THATS THE QUESTION...


I think most of us will agree that Chronic Fatigue
Syndrome is a dreadful and denigrating name for a
disease, once described as "Forever Dead Syndrome"
by Keith Jarrett.

As far as abolishing the name Chronic Fatigue
Syndrome is concerned, I can fully comply with the
thought behind/intention of the campaign for a fair
name.

However, the alternative [Myalgic Encephalopathy:
brain or nerve disease, as a free-to-choose
interpretation of ME: an abbreviation already used
for a well-defined disease!] is a big step in the
wrong direction. Myalgic Encephalopathy

1* is a non-existing "disorder",

2* is not defined,

3* is not known by scientists,

4* creates even more confusion (e.g. -opathy studies
      will be mixed up with myelitis studies), and

5* even more important, is not recognized by the
      WHO.


As prof. Jason has concluded in two studies (Jason,
Taylor, Stepanek, Plioplys, 2001, Jason, Taylor,
Plioplys et al, 2002, see also:
http://www.iacfsme.org/WhytheNameofAnIllnessisofImportance/tabid/100/Default.aspx )

the name of the disease is important for the
perception and attitude and behaviour of medical
trainees and students.

And the name will undoubtedly be very important for
perception and attitude and behaviour professionals,
politicians and the public


BUT....

My disease already got a fair name: Myalgic
Encephalomyelitis.  A name which is used in medical
literature for more than 70 years, a name of a
disease well defined by dr. Melvin Ramsay, a name
used for all epidemics in the last century, and above
all, a name acknowledged by the WHO as a
(neurological) disease.

AND

What is even more important is the connotation, the
definition, the criteria.

ME is a disease well-defined by dr. Ramsay (officially
classified by the WHO).

CFS (Fukuda 1992, Reeves 2005) is just a garbage
bin, a syndrome, the only disease defined by
symptoms. The diagnostic criteria define a disorder
with strongly resembles somatization disorder
(Nightingale definition/Byron Hyde, 2006:
http://sacfs.asn.au/download/NightingalesDefinitionofME.pdf ).

Instead of putting a lot of effort and enthusiasm in
changing a dreadful name (CFS) in a new name (of
an non-existing disease Myclagic Encephalopathy),  it
would be wiser to utilize the scarce energy into
disseminating and advocating:

1* the name Myalgic Encephalomyelitis,

2* a clear difference between the ME and CFS , (in
     line with the suggestion of dr. Byron Hyde)

3* The use of clinical diagnostic criteria for
     ME  (for the time being called ME/CFS),
     like the Canadian Guidelines (Carruthers
     et al,
2003:  http://www.investinme.org/Documents/PDFdocuments/CanadianDefinitionME-CFS.pdf, or the Nightingale definition
     (Hyde 2006:
http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf )

4* the definition of subgroups based upon biological
     parameters, and

5* the use of biomarkers in scientific research.



In conclusion,

Although the initiative is probably a well-meant one,
the proposed double name standard (leaving the
interpretation of ME open) is a very dangerous one.

An example to illustrate this view: Professor van der
Meer, a well-known proponent of the biopsychological
school in the Netherlands, has already embraced the
name Myalgic Encephalopathy in an interview, while
calling the name Myalgic Encephalomyelitis
misleading
(http://www.me-cvs-stichting.nl/JosvanderMeer.htm ,
Dutch). The same fatigue expert proposed 4 months
ago! that TNF-a, part of the inflammation cascade, in
the brain is causing the fatigue syndrome
(http://www.nijmegenonline.nl/nieuws/radboud-vermoeidheid ,
Dutch).



Frank Twisk