Newsgroups: alt.med.cfs
Date:         Sun, 10 Jan 1993 22:39:19 EST
              <CFS-L@NIHLIST.BITNET>
From:         Roger Burns <BFU@NIHCU.BITNET>
Subject: Re: sleep; It's Possibly/Probably Lyme; Survey request

My apologies to John for not finishing our private discussion about
what are and are not appropriate ways of debating on CFS-L; I haven't
had the time to continue this important topic.

> Well, here I go again.  The sleep disorder you describe exactly
> matches that described in virtually every medical paper about the
> neurological effects of Lyme disease.  Steere et al. in New England
> Jnl Medicine 11/22/90:  "...89 percent had a mild (sic) encephalopathy
> that began 1 month to 14 years after the onset of the disease and was
> characterized by memory loss, mood changes, or sleep disturbance."
> (Also see Krupp et al, Arch Neurol 11/91; there are other references
> if you're interested.)

It's good to know that there are other conditions (Lyme disease,
fibromyalgia) that have symptoms similar to CFS; it's important to
distinguish between different conditions, lest a patient waste
precious time pursuing the wrong treatment.

I personally believe that there are *some* instances where Lyme
disease is mistaken for CFS.  This is quite unfortunate since, as
I've been reading here, Lyme is much more treatable *if* it's
diagnosed early enough.  HOWEVER, the idea that John promotes, that
there is no such thing as CFS or fibromyalgia and that everyone who
has such symptoms is actually a Lyme victim, is without foundation
and is, quite frankly, absurd.  I am actually rather upset to see the
promotion of this idea.  It is an immense disservice to those CFS &
FM patients who do in fact have a serious condition that is different
from Lyme but who might drop CFS/FM-oriented treatments because
John's advice sounds reasonable.

In the excerpt from John's latest posting shown above, he quotes a
medical journal article which describes the symptoms of Lyme disease
which include memory loss, mood changes or sleep disturbance.  I hope
that the quoting of this description is not intended to serve as proof
that there is no CFS or FM, but only Lyme.  If that kind of logic were
actually sound, then all other medical conditions which generate
those symptoms should also be considered to be false and all should
be re-diagnosed as being Lyme; these would include sleep apnea,
depression, narcolepsy, withdrawal from alcohol/drug abuse, jet lag,
disease of or damage to the hypothalamic region of the diencephalon
(e.g., after severe head injury or encephalitis), emotional
disturbance, etc.

I know that John is deeply frustrated that the medical research
establishment does not give Lyme disease the attention that it
deserves, and he'd like as many people as possible to write to the
U.S. Congress & NIH and ask that they fund research on this serious
condition.  It is going too far, though, to lead CFS victims to
believe that they don't have CFS; would the next step then be to ask
these people to forget CFS and to instead write to Washington
demanding funding for Lyme research only?  It would be well to learn
about all these conditions and to lobby for the needed research
attention to them all; but everyone should be very careful about
finding out what their own illness actually is, and should go to
great lengths to find and seek guidance from a health care
practitioner who is familiar with that condition.

I find much of the information that John posts here to be valuable;
however, as is already apparent, I don't trust many of the claims
that he makes and I would recommend that people use a lot of caution
when considering his advice.

All this said, there is still the outstanding question:  how does one
distinguish between CFS and Lyme?  (And perhaps we should throw in
fibromyalgia as well.)  To answer that we should refer to some
expert(s) who is/are very familiar with all of these conditions.  I
myself will try to find such person(s) and report back to the list
(it may be a week or longer).


Roger Burns      bfu@cu.nih.gov / bfu@nihcu.bitnet / fidonet 1:109/432
List-owner, Chronic Fatigue Syndrome discussion
CFS-L  on LISTSERV at NIHLIST.BITNET or LIST.NIH.GOV
Newsgroup: alt.med.cfs

   Every task takes twice as long as you think it will take.  If you
   double the time you think it will take, it will actually take
   four times as long.