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Further improvement for Dr. Deckoff-Jones

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Jemal, Nov 25, 2010.

  1. floydguy

    floydguy Senior Member

    That is one heck of a difference between 70 - 80. Also these scales don't seem to take into account the significant variation that can occur. Way too subjective to be taken too seriously I think. I always refuse to answer when doctors try to go down this road. They aren't very happy but I find them completely counterproductive.
  2. mojoey

    mojoey Senior Member

    Hey Dr. Jamie!

    Glad to see you posting here, and hoping you and Ali ontinue to improve.

    Thanks for giving us a more realistic view of the timeline involved with specific drugs. It is sobering, but I hope that the alternative scenario you mentioned about drugs that didn't make it to HIV possibly working for X and drug and the financial incentive for pharma to jump the gun will both be huge factors that override the plodding process known as our drug trial & delivery system.

    Thank you for also posting your thoughts on ampligen. It would seem gcmaf is also an immune "stimulator" since it stimulates macrophages. Is it possible that innate immunity (NK cells, macrophages) needs to be simulated whereas adaptive immunity (b-cell production, cytokines) needs to be suppressed? Ampligen seems to work by stimulating interferon production, yet somehow it helps out NK cells, calms cytokines, and lower rnase-l dysfunction. Perhaps once we figure out exactly how XMRV works, we can develop more targeted immune modulators, but that will surely take a backseat to ARV development?

  3. jdeckoffjones


    I hate rating scales too. I don't have the fortitude to look at the new thread. I chose the Karnofsky Perfomance Score after looking at all of the ones currently in common use for CFS, because it is the most basic. None of them really work for us, because we are very skewed with respect to generally being better cognitively than physically. I kind of like hours upright as a scale, but don't like keeping track. I have only been using KPS points because I have to use something and it is the most basic. Frankly, if anybody doesn't want to believe that we are better, that's fine. For those who do want to believe it, we are very much better. It isn't linear and it seems we still have to be careful of the consequences of trying too hard. We are suffering so much less than we were. The real problem isn't whether we are better or not, but why. The disease is relapsing and remitting all on its own, though it is extremely rare for a CFS patient to improve as much as we have after so many years of being completely disabled. And there are two of us, though historically we do go up and down together.

    That said, using the KPS scale, I have been all the way to 10 and Ali to 30. We were 50 when we started arv's. Self-sufficient with respect to ADL's, but that's it. 80 allows function in the world, with difficulty, and that's where we are now.

    Our TGF beta's and C4a's do reflect what has happened, though I think it lags behind the clinical picture. It looks like the drugs flare inflammation, consistent with our experience, though Ali didn't think the drugs made her worse particularly, sick as she already was. Our C4a's were both normal initially, went sky high when we started treatment, have been coming down and were normal again when we were drawn the end of Sept. My TGF beta-1 was 25,000+ at baseline and has been coming down the whole time, most recently 6000+. Ali's was 9000+, went up to 28,000+, has been drifting down and was 7000+ last check. We will send new labs in the beginning of the month. They take a month to come back.

  4. floydguy

    floydguy Senior Member

    Thanks so much Jamie!
  5. jdeckoffjones


    I don't think anybody is close to being able to answer your question. The best model that we have now is HIV. The Mogensen paper (link on the top of the list on my blog) is fantastic. I've read it a few times and learn something more each time. Lots of answers in that paper.

  6. jenbooks

    jenbooks Guest

    There's nothing bad in the new thread. It mainly talks about how I hate the Karnfosky and other scales and it is such a poor reflection of my lived experience, as I feel I can vary from about 65 to 90, even in just a few days. Meaning the scale is useless for me, and useless to me in knowing how others are really doing. I don't like any of the other scales either. Why do we need a scale? Then some others chime in with similar thoughts (last I looked, anyway). Dreambirdie notes that on a given day she might not feel up to shopping but might create a painting or video etc...

    80 on Karnofsky is working full time (I went and found it and posted a URL to it).
  7. jdeckoffjones


    I agree with what you are saying. If this makes it clearer, we were essentially from the bed to the couch for years. Now I might be able to work a good part of a day in a chair in a quiet environment (though I haven't done it yet and wouldn't choose to start that way). As a doctor. I guess it depends on how you define work. I certainly couldn't do anything that required much of me physically. When I started arv's I was lying down most of the day. Now I sit most of the day. Some days I can stand more than others, but sitting is reliable now. When I started, leaving the house alone was difficult. Now no big deal. When I went down before it was for a week, now it's hours. A full dip is days and it's only a small incremental change. It's much harder to take me down. Much more resilient, but not even near normal stress tolerance. Not here to argue about it, but happy to share.

    Here's the scale as I've been using it:

    Able to carry on normal activity and to work; no special care needed.
    100 Normal no complaints; no evidence of disease.
    90 Able to carry on normal activity; minor signs or symptoms of disease.
    80 Normal activity with effort; some signs or symptoms of disease.

    Unable to work; able to live at home and care for most personal needs; varying amount of assistance needed.
    70 Cares for self; unable to carry on normal activity or to do active work.
    60 Requires occasional assistance, but is able to care for most of his personal needs.
    50 Requires considerable assistance and frequent medical care.

    Unable to care for self; requires equivalent of institutional or hospital care; disease may be progressing rapidly.
    40 Disabled; requires special care and assistance.
    30 Severely disabled; hospital admission is indicated although death not imminent.
    20 Very sick; hospital admission necessary; active supportive treatment necessary.
    10 Moribund; fatal processes progressing rapidly.
    0 Dead

  8. jenbooks

    jenbooks Guest

    For me, the description you just gave was far more insightful than all the scales. I remember Ali posting about taking a short walk. If she'd just said, I took a walk, I wouldn't know if it was 5 minutes or 5 hours. I would even have liked to hear, I took a walk on a flat grade, or, I took a brisk walk, or I took a stroll, or I took a walk up a steep hill. Etc. Not that people in any way are required to give such detail, but the failing of the internet is these vague reports...

    That Karnofsky scale has different wording than the one I found on (it's in the other thread). It's similar, but the other one uses work...It is certainly a very worthwhile life to quietly work, at a desk, as a doctor, helping people, even if on your own property. It's certainly a far improvement over couchbound. But what you just wrote gives me a picture of where you're at, which is helpful to me in trying to figure out where I'm at (sounds silly, but when everybody is gathered together on the internet, I kind of want to know how sick or well I am in comparison, so I can figure out if what I'm doing is effective enough, or I should be considering more/other options. And depending what board I am on, the options vary from EFT to antiretrovirals).

    It is curious to me that you and Ali sync together; is that because you do many activities together, perhaps, and push or relax and influence either (like when one person yawns another yawns too). It is also curious that the women (you and Ali) got so hammered, while the men (husband and son) seem fairly spared. Perhaps that is genetic vulnerability. Often that is passed down in curious ways.

    It is all one big mystery to me at this point, and I still think we are largely a heterogenous population with many different primary (first mover/cause) triggers, or various different perfect storms.

    Edit addition: Another thing the Karnofsky scale can't take in, is what kind of work. For instance, you can't do physical work, but medical sleuthing requires good cognitive function. Since a hallmark of this condition is often brain fog/cognitive loss, a good scale should include both mental and physical functioning for "work".
  9. jdeckoffjones


    One day, soon I hope, we will have a viral load measure and all this discussion will be unnecessary. I do believe that the protean manifestations of the disease can all be reduced to manifestations of persistent immune activation. Whatever the phenotype, it seems to me that in the end you will have to deal with the virus to get well, at least once the disease has really gotten up a head of steam.

    I am really uncomfortable with the aspects of this that feel like I'm tweet'ing about my symptoms. We all know how protean the symptom clusters are and how skewed any rating scale is. Obviously the difference between 70 and 80 KPS points is vast. I won't truly know if I can work until I work. Also "normal" activity covers a huge range of possibilities. What I consider normal now or adequate is very different from what I expected in the past. What I need for function is different than what Ali needs.

    My intention is only to inform, not to convince anybody of a course of action for them. When I started the blog, I expected that there would be hundreds or thousands of people on treatment by now. I am stunned that the numbers are so tiny and even anecdotal information so limited. The powers that be sure got a strangle hold on this one quickly. God forbid anybody should actually try to help the patients.

  10. slayadragon

    slayadragon Senior Member

    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


    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
    XX Lack of dreams
    XX Sleeping during day instead of at night
    Muscle pain
    Tender point pain
    X Trigger point pain
    Joint pain
    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
    X Hair loss
    X Deep skin “dents”
    Irritable Bowel Syndrome
    XX Constipation
    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
    X Overweight
    X Loss of libido
    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
    Passing out
    XX General feelings of agony

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