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MED:RES: Myelin, Encephalomyelitis, and Encephalopathy

K. Weber kweber at efn.org
Mon Feb 19 15:07:37 EST 1996

Dear Bionet,

I was mildly ticked when I wrote this.  I would appreciate it if I could 
have feedback on any errors I may have made.  I can't read anymore and I 
tried to do research but cannot catch all the details or manipulate 
enough matter to go back to all my sources and do good footnotes.  Much 
gratitude for any consideration you may be able to give this.


On Sun, 18 Feb 1996, K. Weber wrote:

> Dear Mike,
> 	I enjoyed your post but found a rather critical misunderstanding 
> I think which was somewhat marring.  Encephalomyelitis indicates an 
> inflammation of the lining of the brain.  There need not be 
> demyelization, plaques, or any visible signs on MRI.  Encephalopathy 
> indicates white cell damage.  
> 	There is a form of tropical MS which appears to be moving north 
> and affecting individuals with immune impairment.  I am not at all sure 
> that it is not sometimes used as a synonym for CFIDS.  I know of a 
> mexican man in Portland who has it.  I wanted to call him but his friend 
> said that he was in too much pain to answer the phone. Pain is not a 
> symptom of MS.  
> 	Let me suggest to you what can happen to a PWC who is thrown in the MS 
> garbage can.  One of the chief treatments for MS is called Passive Range 
> of Motion.  This kind of treatment will make a PWC scream.  I tried it 
> once and was never afterwards able to use my commode which was a great 
> loss to me personally.  Home care agencies and institutions can treat a 
> PWC with the worst form so brutally because of their supposed diagnoses 
> that they can be mistaken for someone who is entirely paralyzed.  This 
> supposed diagnoses can rob a PWC of much that is dear to them and 
> endanger their lives.  They can be injured to the point where they cannot 
> care for themselves at all.  
> 	I only tried the Passive Movement Range of Motion once.  I never 
> again wondered what the difference was between MS and CFIDS/ME.  We have 
> myalgic encephalomyelitis.  I think the people down on the FM group do 
> too, or most of them.  The viruses and immune complexes seem to attack 
> the part of the brain which processes sugar in the blood.  If there were 
> not an attack on the brain, I doubt that the metabolic disorder would 
> exist.  It is not in our muscles, it is in the Kreb's Metabolic Cycle 
> which is controlled by the brain.  This defecit deprives our muscles of the 
> glycogen they need to control muscle function without pain and bodies the 
> ability to control their own temperature. 
> 	Your post reminded me a little bit of a scene in the SINGING 
> DETECTIVE.  A man with severe Parkinson's is being transferred to a bed.  
> The score is singing "it is always the one that you least suspect."  It 
> is the shadow who kills every time.  Don't try to escape your own at the 
> expense of those with the worst form of this disease.
> 					Kathleen
> P.S. The acronyms for tropical M.S. are: HEM and TSP

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