ME-opathy -questions & remarks

[Guest guest]

From: Lajla Mark

Via: CO-CURE

Some questions and remarks about ME-opathy

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It's always educational to listen to both sides of an issue, and

one always should do so.

Regarding the arguments pointing at the choise of the name

Myalgic Encephalopathy, I have a few questions and remarks to

make:

How can we argue, that ME-opathy is 'diagnostical correct' when

we don't yet know for sure, that ME-itis is not involved?

Some claim that Ramsay in the end wasn't sure, that ME-itis was

the right name. Can this be verified?

(~jvr: I don't think so - source: unreliable)

Poliomyelitis was 'lucky' enough to have a virus that could be

recognized. On the other hand - to find signs of poliomyelitis

today in polio patients affected 40-50 years ago is, as far as I

understand, not possible. ME occured simultaneously or

following polio outbreaks and ME was first assumed to be

atypical poliomyelitis. Why was that?

So far very little research has been performed on ME - and only

ME. Do we have any information on wether it is standard

procedure to perform autopsies, looking for signs of

inflammation in the root ganglia, in any deseased ME diagnosed

patient? And do we have any information on how often this has

been standard procedure in diagnosed CFS patients?

There have for many years now been a history of muddering ME

waters. We never doubted what ME is until mountains of terribly

confusing Fukuda-CFS research began to occur. So now in

USA ME is not only added to CFS - ME-itis is at the same time

also changed into ME-opathy suggesting that we all know how to

differentiate between ME and a CFS being almost, but not

entirely, the same as ME and a CFS which covers many kind of

diseases (including ME), because not many CFS studies

showed any signs of encephalomyelitis ....

To us within the ME community it should not be a question of

chancing the name (for God knows which time) but " to recognize

the validity of an already existing name until we are

ABSOLUTELY SURE, that -itis cannot be involved in ME " . The

constant chancing of names makes IMHO the whole ME issue

very untrustworthy. We have very good and highly qualified

serious working researchers who focus on ME. They should be

the ones telling the medical world what ME is or is not - when

they are ready to do so.

I might be wrong, but it occurs to me that the 'trouble' with the

'encephalopathies' mentioned in recent posts of

Sheperd is, that most of them have a measurable recognized

virus or bacteria present. ME has not - which makes ME-opathy

open for being considered one of 'all kinds of brain-opathies' -

also the psychiatric ones.

I believe my opinion about this subject appears in this post, but

I'm certainly open for any argument that can convince me to think

otherwise.

Best wishes

Lajla

www.MEsite.dk/