Discussing ME ( Myalgic Encephalomyelitis M.E. )

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Discussing ME ( Myalgic Encephalomyelitis M.E. )

Postby Mr.A » Sat Feb 27, 2010 6:01 pm

This has be loosely discussed before, but I wish to start a new discussion specifically in light of the following definition and list of objective tests, outlined here:

http://www.hfme.org/testingforme.htm

Has anyone been for these tests?
Of anyone who has been diagnosed with M.E. what was the basis for the diagnosis?

The reason I've started this thread is because I use to think (or was unsure about) there was no difference between M.E./CFS/FMS but I've changed my mind. I don't think it's fair on M.E. sufferers to use M.E. as a blanket term. Like I've said before there's an explanation to all the symptoms that we all live with on a daily basis, but they are not all necessarily the exact same illness. The problem being, most doctors aren’t interested in researching and isolating the various causes of our symptoms.
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Re: Discussing ME ( Myalgic Encephalomyelitis M.E. )

Postby princess » Sun Feb 28, 2010 6:48 pm

I was diagnosed with ME Chronic 16 years ago.
It came after a bad infection that they couldnt find a name for.
But with it came Myalgia and heart valve defect found.
I would say that the ME side of things is the tiredness and the heavy arms stuff - the Fibro is more the cramps and forgetfullness.
Well that is my take on things.
I will gladly speak to you even on p m if you wish
princess

ps my only test was a pressure point test and i had 16 different points and at that time it was only 8 needed to have ME - my mobility was only 40% - after getting the proper medication my mobiltiy increased to 60% but hte pain etc. is just the same only i now know how to handle it and i dothings at my own pace now - i have learned that is the way to have a decent life a different life but a life.
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Re: Discussing ME ( Myalgic Encephalomyelitis M.E. )

Postby LinzWorld » Mon Mar 01, 2010 11:47 pm

There is no pressure point test that I have heard of for ME.

Btw, although that link contains some interesting information, it does not count as a proper review of the evidence. And some of the tests (e.g. SPECT scans) have also been used in research to show abnormalities in Fibro patients. They are only used in research though.
I run FibroAction, a small national charity raising awareness of Fibromyalgia Syndrome. I am not a qualified healthcare professional. If you would like medical references for any facts quoted, just PM me.
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Re: Discussing ME ( Myalgic Encephalomyelitis M.E. )

Postby hamstergirl » Tue Mar 02, 2010 10:34 am

Hi

I'm not sure whether these are the same or not. I started with pains in my back and arms 16 years ago. Only got a diagnosis for fm december 08.

However, the fatigue in my legs, heavy, weak and feel like concrete. I was told that was CFS. For me personally this weakness in my legs is far worse than all my pains put together!

At the end of the day i know i have to exercise to keep mobile and its the only thing (Not medication) that keeps me going.

Lets hope a cure will be found for all syndromes that exist!

Lorraine
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