In Psychology Today beschrijft Toni Bernhard waarom de diagnose CVS nietszeggend is.
De eerste taak van belangengroepen is een onderscheid
maken tussen ME en CVS (rest)
en het aandringen op een verdere onderverdeling van ME en CVS
(bijv. m.b.v. genexpressie).
Why Can’t Medical Science Figure Out Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome: Are no two cases alike?
Published on May 10, 2012
by Toni Bernhard, J.D
The only symptom everyone appears to have in common is "post-exertional malaise" (PEM)
which refers to a bad flare-up of symptoms after a period of physical or mental exertion.
Which activities trigger PEM and how long it takes to trigger it varies from person to person.
I know from personal experience how horribly debilitating PEM is.
But I also know people with non-CFS illnesses who suffer from PEM - a friend with Multiple Sclerosis is one example.
Aside from PEM,
the variation in the constellation of symptoms among CFS-diagnosed people is staggering
and supports the view that CFS is not one discrete illness:
Some people suffer from terrible muscle and joint pain; others are relatively pain-free.
Some people suffer from a debilitating fatigue,
but not a sickly one; others suffer from a sickly fatigue, as if they have a permanent flu.
Some people’s fatigue is similar to that in narcolepsy -
they’re sleepy all the time and have trouble keeping their eyes open;
other people’s fatigue is similar to what typically accompanies other illnesses -
they feel a deep heaviness and lack of energy, but they’re not sleepy.
Some people have tender lymph nodes and chronic sore throats; others do not.
Some people pick up any virus or bacteria they’re exposed to;
others appear to be immune from these acute illnesses,
as if their immune system is on high-alert all the time.
Some people suffer from dizziness or serious vertigo; others do not.
Some people suffer so badly from Orthostatic Intolerance
that they can’t stand up for more than a few minutes at a time;
others don’t have this problem.
Some people wake up in morning as unrefreshed as when they went to bed;
others find sleep to be restorative or partially restorative, even if only temporarily.
Some people have blinding headaches; others do not.
Some people have terrible night sweats; others do not.
Some people have chronic digestive problems, including nausea, bloating, diarrhea; others do not.
Some people suffer from debilitating heart palpitations; others do not.
Some people have an extreme sensitivity to light, sound, and/or physical sensations on the skin; others do not.
Some people suffer from cognitive difficulties
that seriously impair their memory and/or their ability to concentrate; others do not.
Some people’s symptoms appeared and worsened gradually over a period of months or even years;
other people’s symptoms appeared immediately on the heels of an acute illness, such as the flu or another infection.
Does this parade of "symptom variation" and
the notable lack of overlap in the constellation of symptoms from one CFS-diagnosed person to another
sound like we could possibly be talking about one discrete illness?
It’s time for the medical community to acknowledge that
Chronic Fatigue Syndrome is not one illness and to begin the difficult task of separating them out.
We are sick. We are just not all sick with the same discrete illness.