[ Article crossposted from alt.med.cfs ]
[ Author was Duncan Peter G. Thornton ]
[ Posted on 11 Dec 1993 21:08:06 GMT ]

Tuesday of last week in Winnipeg, Dr. Byron Hyde, head of the
Nightingale Research Foundation, gave a talk
largely on the results of a new epidemiological
survey of 1826 people with M.E./CFS Q the largest
ever done, he said. Hyde also spoke on other
aspects of M.E., and since his Ottawa clinic has
seen some 6,000 people, his ideas carry a lot of
weight as far as I'm concerned.

Anyway, I'm going to try to summarize some of the key points, but this
is going to be a long article. Anyone else who was there, or has heard
him report on this elsewhere, please correct any mistakes I make.

Analysis of the survey was just completed a few weeks ago, and the
survey itself was just a pilot project testing questions and software
for what they hope will be a major survey covering 10,000, for which
they'll need a half million dollars. Since the Canadian government has
given them only a few thousand in the last five years, this might be a
difficult goal to reach, but Hyde has some hope that the new liberal
government might be more sympathetic.

THE BAD NEWS

- Recovery Rates

First, the bad news. Of the 1,826 sufferers surveyed, only 2% had made
a complete recovery.  36% had made no recovery at all. Most had had
the condition for about 7 seven years.

- Chronic Pain

88% suffered from chronic pain as well. Hyde said that a key
conclusion from the survey was that Fibromyalgia Syndrome and CFS/ME
_are the same_ condition; the study revealed no difference in the
epidemiological patterns between those with fibromyalgia symptoms and
those without. Those without are just luckier.

RISK FACTORS

The study revealed that the risk factors for getting ME are, first,
being female (females outnumber males 4:1) and second, working as a
teacher, professor, nurse, or lab tech. Even though these are
professions in which women outnumber men, these are _separate_ risk
factors; among children, girls with ME outnumber boys at the same 4:1
ratio, and being a teacher is a risk factor for men as well as women.

Hyde's explanation was that a woman's immune system is just more prone
to trouble than a man's; women make up a large majority of people with
Lupus, M.S., etc., as well. And the professions are those in which
people are exposed to viruses more than any other.

EPIDEMIOLOGICAL PATTERNS

- An Epidemic that began in 1984

He showed an epidemiological graph based on the year-by-year increase
in the number of new cases.  (That is, if the same number of people
were getting sick every year, the graph would be flat.  The graph went
back about 20 years, and showed only small fluctuations (1973 had a
significant rise) until 1984, when a five-year period of dramatic
increases began -- an epidemic pattern which has since 1989 has
levelled off and dipped down.

- An entirovirus pattern

What was particularly interesting was that he compared the graph to
graphs tracking other diseases and viruses. None of them looked close
until he showed a graph for the various polio (entirovirus) family of
viruses combined. The two graphs were identical -- that is, new
occurences of ME have waxed and waned _exactly_ in step with new
entirovirus infections.

Further, he showed a graph of the month of onset for ME - it rose
dramatically in late summer, and fell off by winter (with small rises
in January and March, if I recall correctly). Hyde noted that late
summer onset is also typical of entiroviruses and speculated that
there may be a sepate causal entity for the January surge..

- Not Like Depression

If any of you are still having trouble with those telling you it's
just depression, these facts might be helpful in shutting them up -
especially since midwinter is when depression really hits, but is also
when new cases of ME fall off.

- Age of onset

The data also revealed that ME rarely begins before age 10. Hyde
speculated that this may be because that's when certain immunizations
(including, I believe, poli) are given, though he was clear in
pointing out that even if ME is a risk, the risks of _not_ being
immunized are greater and more serious.

GOOD NEWS:

As we all probably know by now, although the recovery rate is very
low, the disease does _not_ tend to get worse over time.

- Cancer Rates

Although lower natural killer cell counts in ME patients suggest we
might be especially prone to cancer, this study found no striking
cancer risk -- in fact, though 50 {*filter*} cancer cases would have been
expected, there were only 2 (though there were slightly higher rates
for brain tumours and one other kind of cancer whose name I can't read
from my notes.

---

That's about all I can still make out from my notes; I'll post another
message with the various misc. bits of information and advice from the
lecture.

- Duncan

Duncan Thornton           |      In the 'Nineties, it will become cool