How many know that ME/CFS receives only a 10th of the research and awareness that Fibromyalgia does? So that means we are light years away
from letting the average Joe in on what is really going on in their
bodies or their loved one's body if they carry a diagnosis of CFS.
Resources which give simple suggestions for minimizing symptoms, such as
a recent Health Day article
(http://www.healthday.com/Article.asp?AID=617567 ) may be fine for
someone with chronic fatigue (not to be confused with CFS/ME) but many,
many who are diagnosed with CFS are probably afflicted with myalgic
encephalomyelitis and are being a done a grave disservice. People read
an article like this and think that is all they have to do to improve
their health. Meanwhile, the old timers like myself (coming up on 25
years November 6th) know that what we've had is much more serious and
cannot be helped to any great degree by those "suggestions."
If you are helped...GREAT! But far too many who are more than "tired"
but are very, very sick, just laugh at those suggestions. Truly they
do... as I did a small survey.
Of course, what do we do? Now here's the thing. M. E. is not being
researched here. However, in Canada, they developed an ME/CFS Case
Definition that does a pretty fair job of presenting the information for
any doctor to know in diagnosing and treating ME(CFS). The irony is that
one of the authors of this document is one of our best and most
experienced ME/CFS experts. Ponder that a moment.
You can read it at
http://www.mefmaction.net/Portals/0/docs//ME-Overview.pdf .
You can also read Mary Schweitzer's points on "why" we need to adopt the
Canadian document at http://www.cfids-me.org/petitionlong.html . Be
sure to check out Mary's link to Melvin Ramsay's definition of M. E. at
http://www.cfids-me.org/ramsay86.html .
This has to stop - only you can help. We aren't going to get it from the
CDC or the NIH or anybody else until we convince our government
representatives of the seriousness of our illness and let them know we
are not going to stop until they do something to "really" help us.
Nancy Henson
aka GrannyCFS
* * *
Most of the doctors I've seen over the past 21 years have had "simple solutions" for me. They take the easy way out, and when it doesn't work, they blame me. Not the fact that I have a disease, but me personally -- I'm either lazy, crazy, or lying about compliance.
The solution that I was originally offered for my chronic digestive problems was "don't eat what makes you sick". The problem is, I've thrown up everything, including plain water, so I guess there's absolutely nothing safe for me to eat. I was told to report in after two weeks of following the IBS diet; I handed the paper with the diet on it back to the nurse and said I hadn't eaten any of the stuff on there in a lot more than 2 weeks. In fact, I was introduced to the IBS diet in the late 1980s. She refused to believe that I had not eaten anything greasy, spicy, or acidic in two weeks, couldn't remember the last time I'd had pizza or fast food.
In fact, the problem is not what goes into my stomach, but what goes on around it. For example, the vagus nerve can stimulate vomiting.
The simple solution to my sleep problems has almost always been to go to bed at the same time every night, get up at the same time every morning, and don't take naps during the day. In other words, exactly what I did for years while I was working, including the last few months where I was falling asleep between 5-6 AM and continuing to get up at 7-7:30 AM in order to get to work on time. The cause of the insomnia was not staying up till dawn; still being awake at 5 AM was the result, not the cause.
Oh, but you haven't worked in a while, so you need to get back on a schedule and train yourself to sleep at night. During the clinical trial, I had to take the sleeping pill at the same time (11 PM) and get up at the same time (7 AM) every day for a full year, and not take naps. And after a year of sleeping at night, every night, was my system "retrained" to a more normal schedule? No.
The first night without the sleeping pills, I didn't sleep at all. In a matter of days, I was back on the schedule I'd had before the sleeping pills: falling asleep at 5 AM, no matter what time I went to bed. It has nothing to do with when I go to bed, and everything to do with when my cortisollevels naturally reach the level that induces sleep.
I finally got someone to listen to me, that the problem isn't stress or partying or excess noise ... the problem is intense chronic pain that makes it impossible for me to get comfortable enough to sleep, and when, at 5 AM, I finally did fall asleep from exhaustion, the pain would soon become bad enough to wake me up. When the root of the problem was addressed, a pain pill prescribed to be taken at bedtime, I was more likely to fall asleep than to spend 6 or 8 hours tossing and turning trying to find a comfortable position.
It was a solution that required listening to the patient instead of jumping to the simple solution, and then accusing the patient when the simple solution didn't work.
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