What Is M.E.?


Every site and info sheet has a “What Is M.E.?” at or near the beginning.  Like all of them I could write a long long list of symptoms, or expound on the latest theory on it’s cause and effects, or go on and on about neurological, endocrine, immune, muscular skeletal,  multisystem dysfunction, boring doctor talk crap zzzzzzz.

And if I was really lucky my “What Is M.E.?” might even be almost the same as ONE of the hundreds of other (often conflicting) definitions out there. 

But the fact is:  I don’t know what Myalgic Encephalomyelitis is.

But then, neither, it seems, does anyone else.

Doctors sort of know it exists, and might even think they recognise some of the symptoms, and their diagnosis will depend on which bit of the medical literature they’ve read lately…and if they actually believe that lit which will contradict other lit they may or may not have bothered to read, or have not thrown the whole lot into the too-hard rubbish basket (along with the patient).

They can’t test for it.  Yeah, there’s a couple of tests which will point towards M.E. but not actually prove inconclusively that the patient has it, and they are very expensive & time & effort consuming to perform.  Most doctors are reluctant to recommend these tests, if they even know about them.  So, if the patient can get the doctor to listen instead of dismiss them out of hand, mostly what testing is done is to exclude other illnesses.  And a lot of the time most of these are not done.

And when all the tests come back normal, or at least somewhat inconclusive, or point vaguely toward something or other undefined, then the doctor MAY decide Myalgic Encephalomyelitis if s/he has heard of it or if s/he can spell it.  More likely the label will be CFS or Fibromyalgia or Depression/Anxiety Disorder/other psychiatric illness or half a dozen other illnesses (also poorly understood).  Or conversely say M.E. when in fact it isn’t.

Confused?  Well so is almost the entire medical profession.

But never mind.  The multitude of anti-depressants you are mis-prescribed will soon fix that.

(Well they won’t but at least the doctor will feel better)

About M.E. In The 21st Century

At time of writing, I live in Oz, am a 61 y o grandmother, have had M.E. for about 33 years along with Fibromyalgia and Bilateral Tenosynovitis, among other health problems. The blog isn't really about me. Sure some of it will be, but mostly it's about M.E. and how it affects people who have it, and the ways M.E. patients are treated (or not treated) by the medical profession, allied health industry, disability groups, and their families & friends. There will be other subjects commented upon too. I really cannot, refuse to, concentrate on just one area of interest to the exclusion of everything else. I intend to update this info later.

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