ME or not ME that's the Question....

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>>>> Help ME Circle <<<<

>>>> 4 February 2008 <<<<

Editorship : j.van.roijen

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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

 

_ (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

 

_ (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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Frank Twisk <frank.twisk

 

 

 

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 Syndromeâ€

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 “disorderâ€,

 

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_

(http://www.iacfsme.org/WhytheNameofAnIllnessisofImportance/tabid/100/Default.as\

px) )

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_

(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/CanadianDefinition

_ (http://www.investinme.org/Documents/PDFdocuments/CanadianDefinition)

ME-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

 

 

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