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On Wed, 27 Sep 1995, Don Wiss wrote:
 
> As one who believes gluten (and casein) are the cause of many
> autoimmune disorders, I have to wonder if not absorbing sodium
> properly isn't just another of the myriad possible celiac symptoms.
> Now, with 96% of CFSer treatable with steroids or beta blockers, and
> eating more salt, nobody will have any incentive to do a study on diet
> and CFS.  Any comments from those celiacs who have been diagnosed CFS?
 
Yes!!
 
I am a 36 yr-old male, diagnosed with celiac disease in 1981 (biopsy),
and have had many of the sympotoms of CFS for 2 1/2 years now.  My
doctors have as much as labelled it CFS, yet how can anyone be certain?
No one understands the pathology of CFS, there is no accepted model for
even what the disease process may be or what causes it, and there is no
accepted means of testing for it!!  Along comes the Hopkins study,
claiming to offer a "cure" for CFS....hmmmm.....maybe, maybe not.
 
Don has made the statement that "Now, with 96% of CFSer treatable with
steroids or beta blockers, and eating more salt, nobody will have any
incentive to do a study on diet and CFS."
 
Two points:
 
(1)   This isn't what the study claims.  It states that 96% of the people
in their group who had CFS also suffered from NMH, under test
conditions.  It also states that of these 96%, ..."who underwent treatment for
NMH, 76% saw improvement within one month; 43% "reported complete or nearly
complete resolution (improvement)."
(see below).
 
I don't want to sound picky, but we must not arrive at incorrect
conclusions.  If "improvement" (quoted from their study) is what we
define as effective treatment, then in fact 73% of CFS sufferers will be
helped.  If "complete or nearly complete resolution" is what we define as
effective treatment, then only 41% of CFS sufferers will be helped.
 
(2)   Yes, this may likely be an unfortunate result of their study.
 
I am not criticizing Don....he has done well to point out an interesting and
intriguing possibility between celiac disease and CFS (at least for me).
 
Thanks,
 
Mike Nofziger
 
If anyone would prefer to reply in private, that's fine with me:
 
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 .........(text cut).....
>            JOHNS HOPKINS BREAKTHROUGH LINKED TO MYSTERY ILLNESS
>
> Study shows 96% of chronic fatigue syndrome (CFS) patients suffer from
> neurally mediated hypotension (NMH), a known cardiovascular condition.
> Treatment options and cautions offered. 500,000 Americans with CFS, also
> known as chronic fatigue and immune dysfunction syndrome (CFIDS), may
> benefit from results.
 
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