Posts by Bart Janssen

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  • Up Front: Something Chronic,

    No CFS in the genealogical line that I know, but lots of allergies. I wonder if that's linked?

    If it is immune system linked then there will certainly be a genetic component. But the genetics of the immune system is far from straightforward so it won't be a simple relationship.

    I'm not sure we're in that much of a vacuum though.

    Cool fact sheet Russell, and yeah I guess it really is a disease that affects women more than men, hmmm now why could that be? So many of the points on this thread are listed clearly. Except for the care and support that PAS contributors share for each other.

    And sorry for the post spam there were just a bunch of things I wanted to comment on - especially the food - hungry now.

    Auckland • Since Nov 2006 • 3343 posts Report Reply

  • Up Front: Something Chronic,

    Heh, since I'm a make it up as you go kind of cook, there's no telling whether I can reproduce past successes :D

    I hate that. My better half does that and then can't remember next week how she made that wonderful dish so this time it will be different. Meanwhile unless I have detailed and precise instructions my cooking is fail :(.

    Auckland • Since Nov 2006 • 3343 posts Report Reply

  • Up Front: Something Chronic,

    This

    She says, and I agree, that we each has to cope in whatever way works best for us, and no one else should be dictating what attitude we should or should not have.

    From someone fond of giving advice (sorry bad habit) it may come as a surprise that I firmly believe in this.

    Whatever makes you feel better is what you should do. Modern medicine is great, modern drugs can do great things. But on top of all that anything you do, be it watching soap operas or yoga or driving fast cars or wallowing in misery or whatever, anything you do that makes you feel better is good.

    Auckland • Since Nov 2006 • 3343 posts Report Reply

  • Up Front: Something Chronic,

    So for the last couple of years I've been feeling vaguely guillty every time I braise lovely lamb -- and for nothing?

    The guilt probably added to the pleasure :P.

    mmmm slow cooked meat is my favourite. I'll add slow cooked ribs to the list it only take 2 days to cook but it's worth it.

    Auckland • Since Nov 2006 • 3343 posts Report Reply

  • Up Front: Something Chronic,

    those who say they were cured with exercise most probaly were never given a correct diagnosis, as all studies point to those experiencing CFS as needing to be very careful around exercise.

    Or, only after their CFS had ended were they able to exercise. Hence the ability to exercise and the ending of CFS coincides and that leads to the association of successful exercise with the end of the CFS. There is a cause and effect relationship but it is the wrong way around. Basically a recipe for confusing anecdotes.

    Auckland • Since Nov 2006 • 3343 posts Report Reply

  • Up Front: Something Chronic,

    I don't have any trouble believing there are many other diseases to which women are more prone.

    Neither do I. I'm just really cautious about anecdotal evidence. It's always worth following up on perceived trends but for something like CFS where cause(s) are still so uncertain even a simple misdirection like women get it more than men could create lots of confusion if it isn't really true.

    Women are most definitely different medically, I didn't mean to imply that couldn't be true. In fact the history of drug discovery and testing in the 20th century is littered with cock ups because drug testers didn't think to test the drugs on women. The most obvious result is that common anesthetics were all tested on men and nobody realised until far too late that women react really badly to most of them. Hence I'm up and about all bouncy after a general and my darling feels like crap for a few days.

    Auckland • Since Nov 2006 • 3343 posts Report Reply

  • Up Front: Something Chronic,

    I think you'll find that about every second person on PAS is a left-handed tattooed sleep-disordered chronically-ill technical writer with a philosophy degree.

    Hah! right handed and no tatoos, I sleep normally ... now that I'm no longer depressed ... does writing journal papers count ... oh shit Doctor of Philosophy ... crap!

    .
    .
    .
    checks carefully ... yup definitely no tatoos!

    Auckland • Since Nov 2006 • 3343 posts Report Reply

  • Up Front: Something Chronic,

    As far as men carrying on working when they feel like crap...if they can continue fulltime work, they don't have CFS. I tried to carry on working when I was having a relapse, and I was unable to stand up for more than a few seconds at a time and kept vomiting. CFS is a severe illness, not just an inconvenience.

    Yeah fair cop, sorry. I realised after I wrote that that it could read as if I thought men could work through it. Or that CFS was something you could work through. I know that's not true. I didn't mean to imply that they'd be any use at work but that they might be inclined to believe that turning up and being good for nothing at work was the right thing to do. Argh I can see myself digging a hole here because I know women who will do that as well.

    But men are notorious for being really bad at reporting chronic problems. Despite the "man flu" stereotype. So I'd be really cautious about there being a huge difference between CFS in men and women without some good stats. Especially for the CFS cases that are not as severe as you describe, and I'd argue that there are less severe CFS cases that are still CFS.

    You're right, there could be a hormonal component that make women more susceptible. But until we really understand the cause we won't know.

    Self-medication with alcohol makes the majority of CFS patients much worse, not better. There's even research to back that up.

    Yup and what you get is a drunk very ill man likely to be misdiagnosed at that point. I didn't mean to suggest it was effective but more that it might lead to misdiagnosis and hence to a reporting bias for CFS.

    Auckland • Since Nov 2006 • 3343 posts Report Reply

  • Up Front: Something Chronic,

    It's a moot point

    Yes and no. From the point of view of the patient it's completely moot. The aim is to deal with the symptoms until you can lead a decent life and with luck someday discover that you feel normal (whatever normal is). If that means vitamin D supplements that's great, and I didn't mean to imply you should "just get some sunshine" but rather that the deficiency is a result of the CFS not a cause but that treating the deficiency can make the other stuff more bearable.

    That's always the issue with secondary effects. It's worth treating them because it can make the person feel better but you aren't changing the underlying problem. And sometimes treating the secondary effects allows the body to heal the underlying problem.

    But from the point of view of getting a treatment that can cure CFS, then knowing exactly what the is the cause is far from moot. If it's an untargeted immune system then maybe suppressing that system might help, but that has huge risks. If it's an underlying infection then identifying the virus or bacteria and targeting that is important. But so long as we don't really know, then we are left treating symptoms, which can help, but since symptoms vary so much you're left with many people feeling like crap, which really sucks.

    as all they'd want to do is tell me how to fix it

    Sorry, it's fault/character trait. If it's any consolation I think part of that need to "fix it" is fear. Because CFS seems so damn random and all you really can do is offer help and support it is kind of scary. Not half as scary as it is for those suffering of course.

    Auckland • Since Nov 2006 • 3343 posts Report Reply

  • Up Front: Something Chronic,

    It's great to hear you and others talk about your experiences. You call it whining but it is not, it's just talking about stuff that is happening to you and there is nothing wrong with that. And from the responses obviously plenty things right with that.

    Who are, so far here, exclusively female. Is there some science on that?

    I doubt it. As Emma said it's more likely to be a reporting bias. I know a guy who got CFS after a dose of glandular fever. His experience was very similar to Emma's. It's likely that men for whatever reason don't report and self medicate (alcohol) or just carry on working when they feel like crap because they believe there is no other choice. There isn't a lot of science around CFS because it's so damn hard to study, very few patients are exactly the same for starters.

    As for causes, some kind of immune system stress seems to be very common. General stress is known to reduce the immune system function and hence more likely to allow viruses to infect so a relationship between stress and CFS is strong. But that is true of almost any health issue, stress is just plain bad.

    One thing that folks don't realise is that most of the crap feeling you have from a cold is as a result of your own body changing biology. It seems that one of the basic ways of beating a bug is to make the environment non-optimal for the bug. Your body can handle the non-optimal conditions better than the bug and so the bug dies. This is in addition to the really cool specific defenses like antibodies and the T-cell B-cell system.

    The most dramatic demonstration of this came when we discovered interferon. Interferon is an immune response factor that comes up in response to infections, particularly viral infections. It was reasoned that if you gave interferon boosters maybe you would get over a viral infection faster. What they found was that when they gave interferon to healthy folks they developed most of the symptoms of having a cold, feeling crap, fever, aches etc.

    It seems that most of the reason you feel crap when you are sick is a normal response of the body to make life difficult for whatever is infecting you.

    What seems to be happening in CFS patients is that they feel crap without any infection. It is common for it to have been triggered by an infection but so far nobody has found any consistent virus or bacteria. So the best guess is that CFS is the body changing it's own conditions to make life difficult for a non-existent infection.

    Anything that resets the system could break the CFS, which explains the effect of pregnancy which plays merry havoc with the immune system. Even a second viral infection could do it, although that should not be considered advice to hang out with sick kids. It's worth noting that a lot of viral infections are sub-clinical, that is you never even know you've been infected. So you may never know that a second virus triggered your (slow) recovery from CFS.

    Lots of other things like depression, weight loss, muscle wasting, even vitamin D deficiency (who wants to go out in the sun when you feel sick) are likely to be secondary effects, but that's not certain either. But sometimes treating the secondary effects does as much good as anything. Most CFS sufferers seem to get better with time as well, some of that is developing coping mechanisms but some of it is a real improvement over long time frames.

    I'm not sure I've heard anything convincing about brain injury being involved. Most of what I've heard and read (note not my field of expertise) suggest that brain function is not permanently affected and even during CFS brain function is good when the patient (victim) is having a good day.

    Whatever the cause or cure, CFS isn't fun for those who have it and sharing your experiences is not a bad thing to do.

    Auckland • Since Nov 2006 • 3343 posts Report Reply

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