small percentage of patients recover, others go into partial remission
but are never 100% again and others who do not recover at all. First
of all, very few researchers actually study this part of ME and CFS or
include such subgroups in their research to see what the difference
are. Those that do cannot agree on how patients should be defined and
how remission or recovery should be defined. The result is a hodge
podge of research that may or may not apply to individual patients.
Lack of standardization nearly always tends to hamper science as does
failure to account for all variables. Furthermore, anecdotal evidence
tends to assume that recovery can always be attributed to the
treatment du jour. Effective treatments assume the causative issues
are being successfully addressed.
Other possibilities are that because ME has been subsumed into CFS in
some cases it has become a diagnostic dumping ground or has multiple
subgroups/diseases under one umbrella term including tired people who
do not have a disease.
However it is sliced the case may be that there are never enough
advocates and those that have recovered or are in partial remission
may be among the most effective voices - they have the energy to do
more in addition to having personally experienced a severe
disease/condition.
Chronic Fatigue Syndrome: Too Healthy To Be a CFS Voice?
By Jody Smith HERWriter
I have taken my place amongst the creatures of fabled lore -- the Loch
Ness monster, the unicorn, the Yeti ... Yes, I am highly controversial
and hotly disputed. I am recovering from Chronic Fatigue Syndrome.
Some say I don't exist. Some say I can't exist. There are a number of
different schools of thought on this position.
Some say there is no such illness therefore I can't be recovering from it.
Others say that there is no such thing as recovery from Chronic
Fatigue Syndrome. That I am a cruel joke, taunting those who are sick
with something that nobody with CFS can never have -- a life once
again.
Still others say that since there is no such thing as recovery from
Chronic Fatigue Syndrome, that I must never have had it in the first
place. I have read such things written about me, by people who don't
know me, who have never met me.
It was a shock the first time but I don't take it personally now. And
though I think it's too bad that they wasted their time writing about
someone they don't know, on a subject they know nothing about --
meaning, me -- I can kind of get where they were coming from.
I am now in an interesting spot. I'm just not as sick as I was. I am
able to have a life.
I still have my times of contending with CFS symptoms but they are so
much less than they used to be. I'd compare it to someone with
diabetes who mostly is fine, as long as they monitor themselves, and
build in a few protections for themselves.
When I was very ill I couldn't write at all. I could hardly write my
own name. Having to do anything with pen and paper -- or computer --
would exhaust me mentally and physically in under five minutes.
I would have to retreat to my bed, to vibrate there helplessly while
the inside of my brain was like a tilting kaleidoscope or a runaway
rollercoaster ride off its rails and slicing at all angles across the
sky.
I was like a ship lost at sea, being tossed by storming waves and riotous gales.
I was certainly in no shape to report such goings on. It was taking
all I had to survive it.
And that was all I was doing for a number of years. But things have
changed dramatically since I was a vegetable.
The full article can be read here:
http://www.empowher.com/chronic-fatigue-syndrome/content/chronic-fatigue-syndrome-too-healthy-be-cfs-voice
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