The other thing that this scale doesn't take into consideration is the pre-morbid condition. This is especially important when it comes to cognition.
Someone can be functioning "normally" cognitively but still be much lower than they were pre-illness. Because ME/CFS affects certain parts of the brain disproportionately, this may be the case even when IQ testing shows no before-and-after difference. Cognition (especially at a high level) is a subtle thing.
I was really excited when, at long last, my brain started functioning at pre-illness. That was much more meaningful to me than when I started being able to climb mountains, since I'd never once gotten the full mental functioning back since first getting sick.
(Now that "full speed ahead" feeling has slipped away a bit. Maybe it will come back.)
I think that the reason it came back was because I addressed the herpes viruses with Valcyte/Famvir. It's interesting to me that ARV's seem to have been better (based on your blog) at addressing the cognitive than the physical component. Apparently the cognitive issues aren't just a matter of runaway cytokines, but maybe actually viruses being present in the brain.
To try to give people a better sense of my before-and-after condition, I put together a list of common ME/CFS symptoms. Then I went down and marked each one with XX = moderately or severely affected every day and X = occasionally or mildly affected. Then for comparison purposes, I went down the list for where I was currently.
The symptom list I developed is below.
This seems to maybe give more of a "flavor" of this disease. The problem with this disease is not so much that people are disabled (though that's bad too) but also how horribly messed-up in so many different ways. "Not experiencing feelings of agony" may not be something that shows up on the Karnofsy scale no matter how you slice it, but it still matters a lot!
I do think that symptoms matter though. If we can be well regardless of the viral load, that means something. And if we get the viral load down and still aren't wholly well, that means something too.
Best, Lisa
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XX Physical fatigue
XX Mental fatigue
XX Physical post-exertional malaise (feel worse for an extended time after being active)
XX Exercise post-exertional malaise (feel worse for an extended time after exercise)
XX Cognitive post-exertional malaise (feel worse for an extended time after mental effort)
XX General malaise
XX Worsening of symptoms with stress
XX Loss of adaptability
XX Unrefreshing sleep
XX Inability to sleep deeply
XX Oversleeping
XX Insomnia
XX Waking up feeling groggy
Nightmares
XX Lack of dreams
XX Sleeping during day instead of at night
Muscle pain
Tender point pain
X Trigger point pain
Joint pain
Headaches
X Pressure/tenderness at the base of the skull
X Feeling of brain swelling
XX Vision issues
XX Brain fog
X Confusion
XX Concentration problems
XX Short-term memory problems
XX Long-term memory problems
XX Cognitive lethargy
X Disorientation
XX Difficulty absorbing written information
XX Difficulty absorbing orally presented information
XX Difficulty writing
XX Problems with categorizing
XX Difficulties organizing information
X Math difficulties
X Problems with word retrieval
XX Low cognitive stamina
XX Feeling that days all run together
XX Feeling of being disconnected from reality
XX Abnormal reflexes
XX Vertigo (or other perceptual disturbances)
XX Easy sensory overload
XX Sensitivity to light (photophobia)
XX Sensitivity to noise
Photosensitive epilepsy
XX Problems with coordination (ataxia)
XX Muscle weakness
Muscle twitching (fasciculations)
X Numbness
X Problems standing up
Problems sitting up
X Gait abnormalities
XX Body feels somewhat paralyzed
XX Convulsions
XX Easy emotional overload
XX Depression
XX Manic Episodes
XX Irritability or anger
X Suicidal feelings
X Obsessive-compulsive thoughts
X Anxiety
XX Lack of patience
XX Easily frustrated
X Extreme pallor
Rashes
Itching
Acne
X Hair loss
X Deep skin “dents”
Nausea
Irritable Bowel Syndrome
XX Constipation
Diarrhea
XX High urinary frequency
Bladder dysfunction
X Tender lymph nodes
Recurrent sore throat
XX Coughing
Recurrent flu-like symptoms
XX Difficulty breathing
Frequent nosebleeds
X Odd taste in mouth
Heart palpitations
Abdominal pain (dyspepsia)
XX Rapid heartbeat
XX Sternum/chest pressure
Heart pain
Kidney/liver/spleen/gall bladder pain
XX Body temperature dysregulation
Subnormal body temperature
XX Severe sweating (unrelated to exercise or heat)
XX Feverish feelings
XX Cold extremities
XX Easily chilled
XX Trembling
X Don’t feel like eating (anorexia)
X Excessive appetite
XX Excessive thirst
Underweight
X Overweight
X Loss of libido
Impotence
Infertility
XX Miscarriage
Fetal abnormalities
XX Vaginal infections
XX Toxic mold sensitivity
XX Other biotoxin sensitivity
XX Outdoor pollution sensitivity
XX Chemical sensitivity
XX Alcohol sensitivity
XX Sensitivity to certain indoor environments
XX Sensitivity to certain locations
Gluten sensitivity
XX Other food sensitivity
XX General feeling of being poisoned
XX General feeling of being hit with a Mack truck
XX General feeling that every cell in the body is dying
XX General feeling of overall weakness
Heart pain (such as stabbing sensation)
Heart palpitations
XX Sternum pain or pressure
X Excruciating headaches
Burning skin
Severe numbness
Bizarre memory problems (like forgetting how to get home or the name of your town)
Strong suicidal thoughts
Very deep skin dents
Sore throat that makes eating painful
Organ pain (kidney, liver, spleen, gall bladder)
Temporary or permanent inability to do any math
Temporary or permanent inability to make sense of written words
Inability to stand up
Severe gait problems
Severe trembling
X Feelings of being paralyzed
Mind goes totally blank for more than a minute or two
XX Lying comatose for hours or days without being able to sleep
XX Vision disappears or goes very dim
Convulsions
Passing out
XX General feelings of agony
http://www.forums.aboutmecfs.org/showthread.php?7675-Details-on-My-Recovery-from-ME-CFS