Red Hot researchers spice up Chilli ME Challenge — Live!
Watch renowned researchers Drs. Ian Lipkin and Mady Hornig take the Chilli ME Challenge, LIVE from New York by webcast this coming Wednesday, 1st July at 1 p.m. EST.
Discuss the article on the Forums.
  1. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,040
    Likes:
    488
    Raleigh, NC
    Symptom - patient data repository.

    These are several lists of symptoms that have been provided by several researchers. They are a good start but are not comprehensive!Each will be listed by frequency and severity. The first was suggested by Dr. Jason and Dr. Vernon. The second is from Dr. Katrina Berne's CFS symptom. I would like to get more standardized symptoms dealing with pain (fibromyalgia symptom list) and the gut ( irritable bowel syndrome symptom list) and perhaps TMJ. Basically we want to merge these lists together - keeping as many of the first list as possible because it's being used by the BioBank and Lenny Jason ie. it's a kind of standardized form.

    Its going to be a long list but we will allow people to take a break from the form and then pop back in when they're rested. Once we get a good list of symptoms then they can be mined statistically to see what patterns develop.

    For each symptom we should probably ask: I have experienced this symptom in the last six months/ I have experienced it at other times since I was diagnosed with CFS

    VERNON AND JASON

    For the following questions (13-66), we would like to know how often you have had each symptom and how much each symptom has bothered you over the last six months. For each symptom please circle one number for frequency and one number for severity. Please fill the chart out from left to right.


    Symptoms Frequency:
    Throughout the past 6 months, how often have you had this symptom?

    For each symptom listed below, circle a number from:
    0 = none of the time
    1 = a little of the time
    2 = about half the time
    3 = most of the time
    4 = all of the time Severity:
    Throughout the past 6 months, how much has this symptom bothered you?
    For each symptom listed below, circle a number from:
    0 = symptom not present
    1 = mild
    2 = moderate
    3 = severe
    4 = very severe

    13) Fatigue/extreme tiredness 0 1 2 3 4 0 1 2 3 4
    14) Dead, heavy feeling after starting to exercise 0 1 2 3 4 0 1 2 3 4
    15) Next day soreness or fatigue after non-strenuous, everyday activities 0 1 2 3 4 0 1 2 3 4
    16) Mentally tired after the slightest effort 0 1 2 3 4 0 1 2 3 4
    17) Minimum exercise makes you physically tired 0 1 2 3 4 0 1 2 3 4
    18) Physically drained or sick after mild activity 0 1 2 3 4 0 1 2 3 4
    19) Feeling unrefreshed after you wake up in the morning 0 1 2 3 4 0 1 2 3 4
    20) Need to nap daily 0 1 2 3 4 0 1 2 3 4
    21) Problems falling asleep 0 1 2 3 4 0 1 2 3 4
    22) Problems staying asleep 0 1 2 3 4 0 1 2 3 4
    23) Waking up early in the morning (e.g. 3am) 0 1 2 3 4 0 1 2 3 4
    24) Sleep all day and stay awake all night 0 1 2 3 4 0 1 2 3 4
    25) Pain or aching in your muscles 0 1 2 3 4 0 1 2 3 4
    26) Pain/stiffness/tenderness in more than one joint without swelling or redness 0 1 2 3 4 0 1 2 3 4
    27) Eye pain 0 1 2 3 4 0 1 2 3 4




    Symptoms Frequency:
    Throughout the past 6 months, how often have you had this symptom?

    For each symptom listed below, circle a number from:
    0 = none of the time
    1 = a little of the time
    2 = about half the time
    3 = most of the time
    4 = all of the time Severity:
    Throughout the past 6 months, how much has this symptom bothered you?
    For each symptom listed below, circle a number from:
    0 = symptom not present
    1 = mild
    2 = moderate
    3= severe
    4 = very severe
    28) Chest pain 0 1 2 3 4 0 1 2 3 4
    29) Bloating 0 1 2 3 4 0 1 2 3 4
    30) Abdomen/stomach pain 0 1 2 3 4 0 1 2 3 4
    31) Headaches 0 1 2 3 4 0 1 2 3 4
    32) Muscle twitches 0 1 2 3 4 0 1 2 3 4
    33) Muscle weakness 0 1 2 3 4 0 1 2 3 4
    34) Sensitivity to noise 0 1 2 3 4 0 1 2 3 4
    35) Sensitivity to bright lights 0 1 2 3 4 0 1 2 3 4
    36) Problems remembering things 0 1 2 3 4 0 1 2 3 4
    37) Difficulty paying attention for a long period of time 0 1 2 3 4 0 1 2 3 4
    38) Difficulty finding the right word to say or expressing thoughts 0 1 2 3 4 0 1 2 3 4
    39) Difficulty understanding things 0 1 2 3 4 0 1 2 3 4
    40) Only able to focus on one thing at a time 0 1 2 3 4 0 1 2 3 4
    41) Unable to focus vision and/or attention 0 1 2 3 4 0 1 2 3 4
    42) Loss of depth perception 0 1 2 3 4 0 1 2 3 4
    43) Slowness of thought 0 1 2 3 4 0 1 2 3 4
    44) Absent-mindedness or forgetfulness 0 1 2 3 4 0 1 2 3 4
    45) Bladder problems 0 1 2 3 4 0 1 2 3 4
    46) Irritable bowel problems (NEED TO ELUCIDATE) 0 1 2 3 4 0 1 2 3 4 NEED

    Symptoms Frequency:
    Throughout the past 6 months, how often have you had this symptom?

    For each symptom listed below, circle a number from:
    0 = none of the time
    1 = a little of the time
    2 = about half the time
    3 = most of the time
    4 = all of the time Severity:
    Throughout the past 6 months, how much has this symptom bothered you?
    For each symptom listed below, circle a number from:
    0 = symptom not present
    1 = mild
    2 = moderate
    3= severe
    4 = very severe

    47) Nausea 0 1 2 3 4 0 1 2 3 4
    48) Feeling unsteady on your feet, like you might fall 0 1 2 3 4 0 1 2 3 4
    49) Shortness of breath or trouble catching your breath 0 1 2 3 4 0 1 2 3 4
    50) Dizziness or fainting 0 1 2 3 4 0 1 2 3 4
    51) Irregular heart beats 0 1 2 3 4 0 1 2 3 4
    52) Losing or gaining weight without trying 0 1 2 3 4 0 1 2 3 4
    53) No appetite 0 1 2 3 4 0 1 2 3 4
    54) Sweating hands 0 1 2 3 4 0 1 2 3 4
    55) Night sweats 0 1 2 3 4 0 1 2 3 4
    56) Cold limbs (e.g. arms, legs, hands) 0 1 2 3 4 0 1 2 3 4
    57) Feeling chills or shivers 0 1 2 3 4 0 1 2 3 4
    58) Feeling hot or cold for no reason 0 1 2 3 4 0 1 2 3 4
    59) Feeling like you have a high temperature 0 1 2 3 4 0 1 2 3 4
    60) Feeling like you have a low temperature 0 1 2 3 4 0 1 2 3 4
    61) Alcohol intolerance 0 1 2 3 4 0 1 2 3 4
    62) Sore throat 0 1 2 3 4 0 1 2 3 4
    63) Tender/sore lymph nodes 0 1 2 3 4 0 1 2 3 4
    64) Fever 0 1 2 3 4 0 1 2 3 4
    65) Flu-like symptoms 0 1 2 3 4 0 1 2 3 4
    66) Some smells, foods, medications, or chemicals make you feel sick 0 1 2 3 4 0 1 2 3 4


    Katrina Berne's CFS Symptom List


    • Fatigue, worsened by physical exertion or stress
    • Activity level decreased to less than 50% of pre-illness activity level
    • Recurrent flu-like illness
    • Sore throat
    • Hoarseness
    • Tender or swollen lymph nodes (glands), especially in neck & underarms
    • Shortness of breath with little or no exertion
    • Frequent sighing
    • Tremor or trembling
    • Severe nasal allergies (new or worsened)
    • Cough
    • Night sweats
    • Low-grade fevers
    • Feeling cold often
    • Feeling hot often
    • Cold extremities (hands and feet)
    • Low body temperature (below 97.6)
    • Low blood pressure (below 110/70)
    • Heart palpitations
    • Dryness of eyes and/or mouth
    • Increased thirst
    • Symptoms worsened by temperature changes
    • Symptoms worsened by air travel
    • Symptoms worsened by stress

    PAIN


    • Headache
    • Tender points or trigger points
    • Muscle pain
    • Muscle twitching
    • Muscle weakness
    • Severe weakness of an arm or leg
    • Full or partial paralysis of an arm or leg
    • Joint pain
    • TMJ syndrome (NEED TO ELUCIDATE)
    • Chest pain

    EYES AND VISION


    • Eye pain
    • Changes in visual acuity (frequent changes in ability to see well)
    • Difficulty with accommodation (switching focus from one thing to another)
    • Blind spots in vision


    SENSITIVITIES


    • Sensitivities to medications (unable to tolerate a "normal" dosage)
    • Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes,
    • hair sprays)
    • Sensitivities to foods
    • Alcohol intolerance
    • Alteration of taste, smell, and/or hearing
    • Sensitivity to sunlight

    UROGENITAL


    • Frequent urination
    • Increased urination during cold
    • Darkened urine after exercise
    • Painful urination or bladder pain
    • Prostate pain
    • Impotence
    • Endometriosis
    • Worsening of premenstrual syndrome (PMS)
    • Decreased libido (sex drive)
    • Pain following Ejaculation (male)
    • Relapse following Ejaculation (male)
    • Pain During/Following Intercourse (female)


    GASTROINTESTINAL


    • Stomach ache; abdominal cramps
    • Nausea
    • Vomiting
    • Esophageal reflux (heartburn)
    • Frequent diarrhea
    • Frequent constipation
    • Bloating; intestinal gas
    • Decreased appetite
    • Increased appetite
    • Food cravings
    • Weight gain ( _ lbs)
    • Weight loss ( _ lbs)

    GENERAL NEUROLOGICAL


    • Lightheadedness; feeling"spaced out
    • Inability to think clearly (brain fog)
    • Seizures
    • Seizure-like episodes
    • Syncope (fainting) or blackouts
    • Sensation that you might faint
    • Vertigo or dizziness
    • Numbness or tingling sensations
    • Tinnitus (ringing in one or both ears)
    • Photophobia (sensitivity to light)
    • Noise intolerance
    • Music fasiculations
    • Temporary paralysis
    • Slurred Speech
    • Sensitivity to Vibration
    • Headaches with Auras

    EQUILIBRIUM/PERCEPTION



    • Feeling spatially disoriented
    • Dysequilibrium (balance difficulty)
    • Staggering gait (clumsy walking; bumping into things)
    • Dropping things frequently
    • Difficulty judging distances (e.g. when driving; placing objects on surfaces)
    • Not quite seeing what you are looking at

    SLEEP


    • Hypersomnia (excessive sleeping)
    • Sleep disturbance: unrefreshing or non-restorative sleep
    • Sleep disturbance: difficulty falling asleep
    • Sleep disturbance: difficulty staying asleep (frequent awakenings)
    • Sleep disturbance: vivid or disturbing dreams or nightmares
    • Altered sleep/wake schedule (alertness/energy best late at night)
    • Early Wakening

    COGNITIVE


    • Difficulty with simple calculations (e.g., balancing checkbook)
    • Word-finding difficulty
    • Saying the wrong word
    • Difficulty expressing ideas in words
    • Difficulty moving your mouth to speak
    • Slowed speech
    • Stuttering; stammering
    • Impaired ability to concentrate
    • Easily distracted during a task
    • Difficulty paying attention
    • Difficulty following a conversation when background noise is present
    • Losing your train of thought in the middle of a sentence
    • Difficulty putting tasks or things in proper sequence
    • Losing track in the middle of a task (remembering what to do next)
    • Difficulty with short-term memory
    • Difficulty with long-term memory
    • Forgetting how to do routine things
    • Difficulty understanding what you read
    • Switching left and right
    • Transposition (reversal) of numbers, words and/or letters when you speak
    • Transposition (reversal) of numbers, words and/or letters when you write
    • Difficulty remembering names of objects
    • Difficulty remembering names of people
    • Difficulty recognizing faces
    • Poor judgment
    • Difficulty making decision
    • Difficulty following simple written instructions
    • Difficulty following complicated written instructions
    • Difficulty following simple oral (spoken) instructions
    • Difficulty following complicated oral (spoken) instructions
    • Difficulty integrating information (putting ideas together to form a complete picture or concept)
    • Difficulty following directions while driving
    • Becoming lost in familiar locations when driving
    • Feeling too disoriented to drive
    • mentally spelling out words

    MOOD/EMOTIONS


    • Depressed mood
    • Suicidal thoughts
    • Suicide attempt(s)
    • Feeling worthless
    • Frequent crying
    • Feeling helpless and/or hopeless
    • Inability to enjoy previously enjoyed activities
    • Increased appetite
    • Decreased appetite
    • Anxiety or fear with no obvious cause
    • Panic attacks
    • Irritability; overreaction
    • Rage attacks: anger outbursts with little or no cause
    • Abrupt, unpredictable mood swings
    • Phobias (irrational fears)
    • Personality changes
    • Feeling that Mind is Racing
    • Loss of the fear response such as adrenaline isnt being created when it should
    Fatigue States


    • Wired but Tired
    • Flu-like Fatigue
    • Molasses Fatigue
    • Exhaustion physical
    • Exhaustion mental
    • Exhaustion emotional



    OTHER


    • Rashes or sores
    • Eczema or psoriasis
    • Aphthous ulcers (canker sores)
    • mouth ulcers
    • Hair loss
    • Mitral valve prolapse
    • Cancer
    • Dental problems
    • Periodontal (gum) disease
    • Crimson Crescents in mouth
    • Discoloration of tongue
    • Thrush
    • I am intolerant of many drugs and supplements
    • Cold Sores
    copyright 1999 and 2008 by Katrina H. Berne, Ph.D.,
     
  2. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,040
    Likes:
    488
    Raleigh, NC
    We need better pain, IBS symptoms
     
  3. rhiannon

    rhiannon

    Messages:
    19
    Likes:
    0
    north wales,uk
    i get pain in the lower right abdomen, where appendix is. I forget what that area is called.

    Pain can be described by many words, eg shooting, burning, dull ache, excruciating, how bad on scale between 1-10, etc. These would be standard medical assessments.

    IBS symptoms: spasm, cramps, hard abdo, bloating, severity of pain can be excruciating
     
  4. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,040
    Likes:
    488
    Raleigh, NC
    We need separate Pain and IBS symptom questionnaires. There's gotta be something standardized out there; I just haven't found it yet.
     
  5. Gemini

    Gemini Senior Member

    Messages:
    436
    Likes:
    427
    Cort,

    Symptoms….

    “Blood volume loss”, keeps coming up:

    Lerner(your interview); Klimas(latest video);
    Lapp(Stepwise Treatment); Vanderbilt research
    (space medicine www.mc.vanderbilt.edu/gcrc/space and
    clinical trial http://clinicaltrials.gov/ct2/show/NCT00580619)
    This 5 year trial to find a treatment for BV loss started in 2007.
    Can we get a progress report on it?

    BV loss doesn’t appear on symptom lists or in case definitions.

    Klimas says it’s a 1 liter drop in plasma and red cells.
    Does that make it Stage 2 hypovolemia, a 20% loss, in medical terminology? http://en.wikipedia.org/wiki/Hypovolemia

    Do Klimas, Lapp, Bateman, Bell test for BV loss? Do they use the Daxor BVA-100 an FDA approved system which indicates a CFS use on their website? www.daxor.com/indications.asp
    What percent of ME/CFS patients test positive for BV loss? How many patients have ever been tested?

    Astronauts in space experience a 22% blood volume loss (orthostatic intolerance, T-cell abnormalities, virus reactivation, sleep disorder, and other CFS symptoms )
    www.mc.vanderbilt.edu/gcrc/space. Do they recover spontaneously when they return to earth or is intervention required to restore their blood volume?

    To PR scientists, how might XMRV (or other infections) cause BV loss?

    How many other ME/CFS symptoms are caused by BV loss—PEM, cognitive, muscle/joint pain, weakness, immune dysfunction, MCS, exertion intolerance, etc?

    Can we pull together all that’s known about “BV loss” in ME/CFS?

    Gemini
     
  6. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,040
    Likes:
    488
    Raleigh, NC
    I agree - very important aspect of CFS - that'll have to go in Testing I think

    Why don't you do an article on BV loss - we could really use one.
     
  7. taniaaust1

    taniaaust1

    Messages:
    9,208
    Likes:
    6,526
    Sth Australia
    I noticed some of my symptoms are missing on the list.
    Hyper-reflexia (abnormal reflexes)
    Unequal pupils

    (have both happened to me during bad relapses and are definately ME symptoms as i know they happen to many others too). So i added them on the list under the general neurological symptoms). i hope that is right??? Im not sure if im doing the right thing, let me know cort if im doing the wikipedia wrongly as I went looking for the rules of it and cant find them.. so just added to it. Ive not a clue where its meant to be added to so i just put into a spot which looked kind of right (not sure what the "general" part of the neurological symptoms means thou).

    I also think it would be good if the actual medical terms can be used for symptoms too and put next to the laymans terms eg Inabiliity to recognise faces (prosophenosia). (Im not going to start to add in all the medical terms of things unless someone tells me to go ahead).

    Ive also had an issue with dermographia which i assume it is due to having ME but arent sure if it's related to ME or not, at this point i can only assume it was due to the ME?? (welted skin writing, skin drawing when arm is stroked, i ended up being marked all over my body due to normal daily activities, nothing could run along my body in anyway without causing a welt) .. http://en.wikipedia.org/wiki/Dermographia . (I didnt add it to the list as I havent really heard others with ME talking about it.. Ive never asked if anyone else gets it with their ME).
     
  8. lucy

    lucy Senior Member

    Messages:
    102
    Likes:
    3
    I would also add sun sensivity (me and another person had it, and for her it was the first symptom of cfs), tendon inflammations (I had unexplicable tendinitis with terrible pain in the wrists) and muscle acidity type of pain related to very minor excertion or sometimes no excertion at all (like watching a movie). I do not know if anybody else is also having a motion-sickness.
     
  9. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,040
    Likes:
    488
    Raleigh, NC
    How could we miss sun sensitivity? Motion sickness - is that like vertigo or just when you are in a car?
     
  10. Tammie

    Tammie Senior Member

    Messages:
    761
    Likes:
    12
    Woodridge, IL
    I would add frequent urination at night (nocturia) to the list - I know frequent urination is there, but there are definitely many of us who only have this issue at night (or whenever we happen to sleep)

    and as to the question re motion sickness, it can include vertigo and nausea and other symptoms and it occurs in a car or other moving vehicle.....while many of us certainly have those symptoms other times, too, I would say that they are two different things.....some people only get them in response to motion, some people get them separate from any motion, and some people seem to get them both times

    I never used to get motion sickness, in fact I used to be a total thrill seeker and very much into things like roller coasters, sky diving, etc, etc that involved lots of motion.....now I sometimes get motion sickness and often get other forms of vertigo, nausea, etc
     
  11. taniaaust1

    taniaaust1

    Messages:
    9,208
    Likes:
    6,526
    Sth Australia
    I noticed someone else has added in "Relapse following Ejaculation (male)" .. I'd like to point out that females can relapse from climaxing too.. when I was very ill I had to avoid climax as it was too intense for my body so would cause me to crash. (I had to actually avoid any kind of extreme emotion too be it a sad one or a very happy one as that could negatively affect me too).
     

See more popular forum discussions.

Share This Page