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Watch US CFSAC meeting NOW!

Discussion in 'Action Alerts and Advocacy' started by Hope123, Oct 11, 2010.

  1. CBS

    CBS Senior Member

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    During the panel discussion, Dr. Klimas asked Alan Light about the practicality of using his exercise tests to guide treatment. While Dr. Light suggested that his test had potential to guide treatment, he was concerned about asking CFS patients to excessive because of the damage it does. In addition, he stated that one of the keys was to determine how much exercise would illicit a detectable and detectable response while at the same time minimizing harm to the patient.

    I was very much under the impression that Dr. Light is well aware of real damage and not just issues in pain signaling. His comments did not seem to support a conclusion that he feels nothing harmful is happening.
     
  2. Dolphin

    Dolphin Senior Member

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    Just to be clear: I think their research is interesting and like you say, could be useful.

    I just feel a simpler explanation is that there is something abnormal going on in the muscle rather than this complicated and questionnable view that the body is somehow imagining it (that might not be the best word).

    As I recall, they said one time that exercise is good for patients. This seems to be where they are coming from. It's like the view one sometimes hear about Fibromyalgia. I think there are real reasons people can't exercise and I don't imagine it will be that easy to get over it.

    We may perceive pain a bit more acutely. But that is not the same as there not be abnormalities in our bodies when we exercise. It's late here so I'm not going to try to remember all the abnormalities there could be but some might be: mitochondrial abnormalities, oxidative stress, cytokines - basically I think there could be lots of "real" causes that might cause us pain on exercising.
     
  3. Dolphin

    Dolphin Senior Member

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    Firstly, nothing harmful happening and nothing harmful in the muscle are not necessarily the same thing. Anyway, we shall see how things develop. I didn't see the talk today. Perhaps their views have changed in time. I recall something either he or Kathleen saying something, perhaps at an OFFER conference, that did not seem right.

    And in general, I think something does happen in the muscle. Somebody today told me he said the muscle contracted normally but that's not the only way to measure muscle function/not the only abnormality possible in a muscle.

    But as I said I am interested in their work. I'm not dissing it, just thinking they may be putting too much emphasis on one means of analysing the data.
     
  4. Stone

    Stone Senior Member

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    I truly can't for the life of me figure out how any self respecting scientist can stand there and talk about contamination when it's proven that people with XMRV (or whatever) actually do produce an antibody response. Antibodies can not be the result of lab contaminants.

    And as another has stated, I would like to know what these CFS treatments are from which they think we may have contracted murine viruses? I have yet to be treated for anything other than some of my symptoms, all of which also appear in other conditions and are treated conventionally. That is to say, my doctor gives me flexeril for muscle spasms; the same flexeril she would give to someone else with back pain. People with back pain aren't popping up with murine viruses, are they? It's insane! What and where are these nameless treatments from whence the murine viruses have come? Why doesn't someone ask them this? We have our most prominent patient advocates from the most visible CFS organization just sitting there with their mouths shut, not saying a word. What is this? Why aren't they saying anything?

    And what about the German study that found XMRV in the respiratory tract of people with acute respiratory illness? What treatments did they receive that could have conceivably contaminated their respiratory tracts? Or was the lab that studied the samples contaminated?

    Shame on those present who are supposed to know better for not speaking up.
     
  5. George

    George waitin' fer rabbits

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    Hey Dolphin I hope I didn't sound combative. If I did I apologize. You are correct that many of the doctors including Dr. Klimas have advocated exercise but I think part of the problem is the sound bites that get taken out of context by media and other doctors. Dr. Klimas would never have us walking a mile a day for exercise which, is what my doctor tried to get me to do in the beginning.(eye roll) What get's meant by exercise, stress and other words that are being used by some of the researchers and clinicians is defiantly no where in the realm of how the words would be used "normally". I agree that there is definatley abnormal things happening and my "evidence" is purely anecdotal. If would not pass a Dr. Coffin sniff test. (grins)

    Hey CBS we musta been posting at the same time! Great minds . . .er well brain cells anyway.

    Thing is that I'm down with the Dr.(s) Light study from a personal place. Like the fact that I know I can wash the car, clean the house and mow the lawn and have no problems physically the first day. Even though I "feel" tired and "achey" I can push through and get er done. BUTTTTT

    Like the Dr.(s) Light show in their work the next 24 hours to heck as much as weeks I have - spinal swelling, headaches, nausea, edema, erratic heart rhythms ya know the basic stuff. (grins) The problem with most test's that have been done in the past is that they only do it the first day. The results look pretty good not to far off of normal. But nobody checks on us the day after or the day after that. The Light's work shows not only that we look like he** on the inside the day after but that the up-regulation of pro inflammatory cytokines actually cause us all kinds of problems that are physically harmful, like inflammation of the gut, blood vessel linings, heart, brain etc.

    So anyway I'm partial, can ya tell???
     
  6. George

    George waitin' fer rabbits

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    Yeah the "Magic show" today makes ya want to shoot someone that's for sure. But were keeping hensue. (grins)
     
  7. Dolphin

    Dolphin Senior Member

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    Perhaps somebody who has access to the following could tell us what it says:
    http://www.offerutah.org/OFFER Patient Conference Summarty 9.13.08.htm
    OFFER
    PATIENT CONFERENCE SUMMARY
    SEPTEMBER 13, 2008
    (that could be the author saying it rather than paraphrasing what was said)

    I don't think exercise training necessarily helps reduce pain and fatigue symptoms. Other explanations are possibly such as they have a different illness, are less severely affected, etc.
     
  8. Dolphin

    Dolphin Senior Member

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    I don't think what Dr. Klimas advocates is perfect either. I know that may be heresy to some people.

    I agree the research is interesting. I just don't think one should make the assumption that the muscles are behaving normally (as in the example of a muscle contracting normally, etc - which may not be true either - I spent years trying to stretch a tight hamstring after this illness with very little effect).
     
  9. Stone

    Stone Senior Member

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    And another thing! The idea that the reason there are more women than men who have CFS is because men are less likely to go to the doctor is utterly stupid. Okay, maybe that accounts for a small percentage of the difference, but they act like men are Neanderthals and this disease is barely perceptible. I don't know about you guys but this isn't the kind of thing that's subtle. It knocks people off their pins!!!! I can't imagine 3/4 of a million American men who one day suddenly find they can't think, stand or raise their arms over their heads, are dizzy, can't tolerate light, sound, smells and whose glands are swollen and throats are sore NOT GOING TO THE DOCTOR FOR THAT on account of their male egos! Also ridiculous!
     
  10. suezen

    suezen

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    I'm new to all of this but it looked like his job was to discredit and cast doubt wherever possible. This serves the interests of the government very well. Above all, they don't want the public to freak out about a retrovirus that could be too close for comfort, and they can always come back and say they were mistaken, but in the meantime, they won't have to worry if everyone thinks that XMRV is a joke.
     
  11. Forbin

    Forbin Forbin

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    I'm a man who wasn't too fond of seeing doctors. My illness struck me out of the blue with a sudden attack of vertigo (a few weeks after a horrible flu). I was in a doctor's office within two hours.
     
  12. George

    George waitin' fer rabbits

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    I don't have access to this article but I'll ask a friend if she can get it for me. If I get it do you want me to send it to you??

    When Dr. Light was presenting he stated that Fibromyalgia and ME/CFS were two very different illness's. That Fibro didn't have the same cytokine or chemokine signature. He also stated that he was surprised that the two turned out to be so different. We may well see a complete teasing out of Fibro as a separate and distinct illness that is co-morbid in CFS but is not related to CFS. Also both Dr. Klimas, Dr. Jason and Dr. Lerner (as well as Dr. Light) talked about the fact that to much de-conditioning causes it's own set of problems and some "judicious exercise" is warranted in order to keep patients from becoming worse.

    I think the biggest problem is that "exercise" has this whole ideal of sweaty workouts and aerobic thresholds. Which isn't even in the ball park of what we're able to do so it's like CFS folks have their own version of the English language sometimes. Four years ago I could get out of bed, pee and eat. The rest of the time I slept. Today I can pee, eat, wash the dishes, and go for a very slow walk for 20 minutes as long as I don't do anything else for the day. I still sleep 12 hours straight, I still have to lay down 3 to 4 times per day and I still have complete days that I sleep through. I still have to give myself the "gift" of extra rest daily.

    There are some folks who are lucky to just do exercise daily like moving their hands or lifting their arms out in front of them. We live in a parallel universe on so many levels.
     
  13. George

    George waitin' fer rabbits

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    And yet my ex refuses to go to the doctor. (grins) He's afraid he'll lose his job! So he does his job, barely and then sleeps the rest of the time. Granted he's not totally knocked out . . .yet but it won't take much to tip him over. I will say he follows the research avidly right now. Sometimes he calls me to see if he's missed anything. (big grins)
     
  14. Dolphin

    Dolphin Senior Member

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    That'd be great. I'll PM you my E-mail address.

    I think the biggest problem is the idea that one can exercise oneself better. Or that one should be so terrified of deconditioning that one "wastes" a lot of energy on "useless" exercise rather activities of daily living.
     
  15. Hope123

    Hope123 Senior Member

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    I don't have as much concern about the Lights' work having read their papers and e-mailed them in the past with questions, which they've been kind enough to answer.

    This is because their work on CFS symptoms and "oversensitivity" isn't some hand-waving gooble-de-gook science about "mixed brain signals" (I'm looking at you, Dr. Susan Vernon) or people not being able to tolerate stress (ala what I could pick up from Dr. Glaser) but a genuine exploration of physiological mechanisms that could account for why we can't handle the activity levels we had pre-CFS or those of most ordinary people -- the latter could be labelled as "oversensitivity." The point I picked up today, which was a quick and small point but important to me, was their comment that pro-inflammatory cytokine elevation can increase white blood cell sensitivity to the usual signals. [trying to paraphrase here]

    ***I'm really glad Bob Miller asked about Glaser's use of the work "stress" over and over. Perhaps Glaser meant differently but his examples of using med student exam stress makes outsiders (and insiders) think that it has to with primarily psychological stress. Nancy Klimas also tried to clarify this in her reply to Bob's question. Maybe Vernon meant differently when she talks about "signals" as the CAA funds (including my $$) Lights' study but it'd be nice if she could be clearer that these are "physiological" oversensitivities vs. "psychological" oversensitivities.
     
  16. Dolphin

    Dolphin Senior Member

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    (Kathleen Light)
    (from: http://aboutmecfs.org/Conf/IACFS09Surprise.aspx)

    Also:
    As I say, I think there research is very useful and I'm glad they're doing it. I just think they should keep an open-mind on the muscular fatigue (something known as peripheral fatigue) angle, etc.
     
  17. CBS

    CBS Senior Member

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    Again from today, Alan Light said that his immune profiles for CFS patients who have undergone exercise testing are clearly distinct from all other patients including fibromyalgia patients (he then stated he would like to but he could not go into more detail at this time).

    I suspect that his thinking has evolved on the issue. I also had questions about his work focusing on the perception of pain rather then real damage. My concerns were very much put to rest after his participation on today's panel.
     
  18. urbantravels

    urbantravels disjecta membra

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    Well, this is all very interesting. Of course there is really no distinction between "perceived" pain and "real" pain - they are the same thing. If the pain system is sending pain signals, you experience pain whether it's being caused by "damage" or not.

    And I completely buy the argument that we have elevated cytokines post-exertion that increase our feelings/perception of pain and fatigue. And in general, it seems that we have lowered pain thresholds - I know that little things, not related to CFS, hurt a lot more than they used to - burning myself on the stove, eating wasabi, whatever.

    But it just struck me odd that Dr. Light emphasized the "normal" activity of the muscles. Maybe on initial challenge in a rested non-flaring patient....but then all they do post-exertion is continue to measure the cytokines. Have they not tried a second exercise challenge the next day to see if the muscles still have "normal" capacity?

    I've been poring over these Pacific Fatigue Lab reports pretty carefully and it seems clear that there *is* an abnormal capacity for exercise on the second day re-test. Not just a 'perception' of fatigue, but a real decrease in the ability of the same muscles to do the same work, despite the subject's every attempt to put in maximum effort. So this seems to me a malfunction in the actual delivery of energy to the muscles which cannot be completely explained by cytokines...can it?
     
  19. George

    George waitin' fer rabbits

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    That should be coming out in the next Light study waiting to be published but yes the lactate build up and the fact that the pro inflammatory cytokines do not return to a normal level anywhere from 4 to 48 hours post exercise. But you are absolutely right and Dr. Jason pointed this out as well, the fact that day two we are in a much different place than day one. There are a lot of studies that show Lactic Acid build up in the mussels because ME/CFS patients don't have the correct ATP and dang something else that would remove the lactic acid from the mussels normally. So what the Lights', Jason, Lerner and even Klimas seemed to agree on was the possibility of mussel damage because of the "abnormal" signature in CFS.

    Dr. Light even made comment about the study of lactate build up in CFS brains by Marshall/Chow ??? dang it's all starting to fade, but he referenced the fact that the same thing that they measured in the body maybe happening in the brain of ME/CFS patients.
     
  20. Dolphin

    Dolphin Senior Member

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    That's sounds good that they've broadened their thinking from what I've heard before (directly/indirectly).
     

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