NAME: This explains the fuss!

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forwarding ...........

 

 

Lajla Mark <_lajla_ (lajla) >

 

 

 

NAME: This explains the fuss!

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MEitis has been known ever since 1934 and has been recognized by WHO since

1969. Long before CFS was invented. MEitis hasn't changed. Far too many

people still get very ill with MEitis.

 

The need for another name than the CFS umbrella term - is very

understandable and can only be supported. But what cannot be supported is the

intention

to replace CFS with ME obviously without at the same time adopting the

existing ME definition

(Ramsay 1988). This would be historically, medically and diagnostically

incorrect.

 

Reading the info on A Fair Name Campaign at _http://www.afairname.org/_

(http://www.afairname.org/) made me think, that this must be a last desperate

try before closing down on Myalgic Encephalomyelitis - a well defined

neurological disease, recognized by the WHO and by the Health authorities of

several

countries outside the US.

 

People in these countries actually suffer from ME - they do NOT suffer from

MEopathy or PVFS or ME/CFS and least of all from CFS. In the 80' and first

in the 90's MEitis was on its way to be accepted and respected - until names

like PVFS, CFS and ME/CFS showed up - and with them the huge and devastating

interest of the psychiatrists, which we all are too familiar with - God help

us!

 

No proper definitions are attached to PVFS, CFS and MEopathy. The CFS

definition is mostly a laugh because it is so broad that almost any disease

can

fit into these criteria, and do take into consideration, that this has

screwed up many years of vital research into MEitis. WE - the MEitis patients

-

are paying an unacceptable high a price for this.

 

PVFS is not identical to MEitis (according to Ramsay). In many countries

PVFS is mostly viewed as a post-infectious condition with a fairly good

prognosis, and which will typically, although not necessarily, fade away

within a

couple of years. This is definitely not a correct picture of ME.

 

ME-opathy can mean any disease in the brain - including MEitis. MEopathy

has no specific definition and it is not classified by the WHO or anywhere

else.

 

The term ME/CFS simply doesn't make any sense. ME and CFS are not two

medically identical diseases, like this term suggests. The closest ME gets to

CFS

is, that it may be a subgroup under the CFS umbrella. So what exactly is

ME/CFS?

 

And Mr. Carson asks: Why the fuss?

 

No signs of MEitis? This is not true. The first researchers doing studies

on MEitis certainly did find signs of MEitis when doing autopsies. That's why

WHO classified MEitis as a neurological disease in the first place. Today

researchers still find signs of MEitis also by using brain scans. And for

what it's worth: we, who do suffer from MEitis, have no doubts whatsoever

about

a previous or existing MEitis. We either suffer from it directly every

single day of our lives or suffer from it occasionally when having done too

much

or it reoccurs from time to time. It gives such special symptoms, that

having it once when falling ill, you will never forget how it's like.

 

Do we want to be labelled as having diseases we do not suffer from? Do we

want people with other - maybe treatable disease - to be labelled with a

serious disease they do not suffer from? We certainly do not. Physicians,

researchers and psychiatrist shouldn't want this either.

 

Mr Carson writes: " 'ME' is considered by most physicians and patients to be

historically and diagnostically correct, and it has been used worldwide to

describe the disease for close to 50 years. "

 

ME has been used to describe ME. Period! If ME has ever been used to

describe CFS or CFS has ever been used to describe ME, this has been medically

incorrect. ME and CFS are per definition not identical.

 

Sticking to MEitis would be historically, medically and diagnostically

correct! Why don't you stick to this?

 

You have all the good reasons to do it. And you have no reasons to link ME

to CFS, which per definition hasn't much - if anything - to do with ME.

Because some CFS diagnosed people inevitably suffer from ME doesn't make CFS

identical to ME.

 

Therefore, it's historically, medically and diagnostically incorrect to

switch CFS to ME WITHOUT at the same time adopting the already existing

definition for MEitis. Also I personally find it unethical!

 

 

 

Lajla Mark

 

 

 

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