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Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

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Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#171

Post by tomhoward »

nradov wrote: post #164
tomhoward wrote: post #162

Earlier quoted context omitted.

Indeed, I neglected to mention the other main motivator for undertaking research: to be published in journals. Thanks for pointing it out. Seriously though, can you not see how the medical research system (and most importantly, the kinds of things that will be included in studies) is influenced by the fact that any study must seek to deliver on a commercial incentive, a political one, or at the very least, be likely…

If the research isn't worth publishing in a reputable journal then it probably isn't worth doing. I'm not sure what point you're trying to make.

The point is that this qualifier - that research must be "worth publishing in a reputable journal" - imposes significant constraints on what kind of research may be attempted to begin with.

An hypothesis that is too far outside of mainstream accepted thinking may not be studied, if it seems (to the people proposing the study or the people considering funding it) like it will be too hard to get it through peer review or editorial review.

I'm not suggesting this is necessarily a flaw in the system; it is healthy that there are constraints on what kind of research gets funded, and for things that are way outside of established thinking, the bar should be higher [1].

But it does mean there will inevitably be a gap - quite possibly a very big gap - between what has been "proved to work" and what can be effective for those who want or need (like myself) to take matters into their own hands.

[1] Problems like politicisation, egotism and bullying are often said to be rife in scientific research institutions, so it's questionable whether the system is as healthy as it could be, but that's a separate discussion.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#172

Post by Mz »

nradov wrote: post #164
tomhoward wrote: post #162

Earlier quoted context omitted.

Indeed, I neglected to mention the other main motivator for undertaking research: to be published in journals. Thanks for pointing it out. Seriously though, can you not see how the medical research system (and most importantly, the kinds of things that will be included in studies) is influenced by the fact that any study must seek to deliver on a commercial incentive, a political one, or at the very least, be likely…

If the research isn't worth publishing in a reputable journal then it probably isn't worth doing. I'm not sure what point you're trying to make.

Hand wavy recollection of what a very knowledgeable cancer patient told me years ago: They were incredibly frustrated that most cancer research related to the type of cancer they had was variations on the same thing because it was the trendy thing to fund. This person was hoping for real progress, but was seeing just dozens of studies of the same thing with minor variations and nothing actually interesting or really new being done.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#173

Post by nradov »

Mz wrote: post #172
nradov wrote: post #164

Earlier quoted context omitted.

If the research isn't worth publishing in a reputable journal then it probably isn't worth doing. I'm not sure what point you're trying to make.

Hand wavy recollection of what a very knowledgeable cancer patient told me years ago: They were incredibly frustrated that most cancer research related to the type of cancer they had was variations on the same thing because it was the trendy thing to fund. This person was hoping for real progress, but was seeing just dozens of studies of the same thing with minor variations and nothing actually interesting or really…

That could just as well be confusing cause and effect. Particular avenues of research can capture a lot of funding and become trendy because they seem most promising at the time. Hard decisions also have to be made on risk versus reward; should we shoot for the moon or target limited incremental progress? It's easy to criticize after the fact with the benefit of hindsight.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#174

Post by Mz »

nradov wrote: post #173
Mz wrote: post #172

Earlier quoted context omitted.

Hand wavy recollection of what a very knowledgeable cancer patient told me years ago: They were incredibly frustrated that most cancer research related to the type of cancer they had was variations on the same thing because it was the trendy thing to fund. This person was hoping for real progress, but was seeing just dozens of studies of the same thing with minor variations and nothing actually interesting or really…

That could just as well be confusing cause and effect. Particular avenues of research can capture a lot of funding and become trendy because they seem most promising at the time. Hard decisions also have to be made on risk versus reward; should we shoot for the moon or target limited incremental progress? It's easy to criticize after the fact with the benefit of hindsight.

The individual in question worked for a major health organization themselves. I don't think they were confusing anything.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#175

Post by GFischer »

fcoury wrote: post #111
Nightshaxx wrote: post #105

As someone who has suffered from CFS I am so happy to see it becoming more recognized and understood. You see, the frustrating part of having an illness like this is it is not well known enough for people to really understand it, but it has major impacts on your life. I can't tell you how utterly angring it is to be sitting in front of my computer and I know that if I just finish this school paper that isn't anything…

As someone whose symptoms fits the bill, how did you get diagnosed and how did you get it under control?

Be careful, those symptoms are also for a lot of other things including depression and burnout which are far more common amongst programmers.

Do get diagnosed and get a second opinion, but it might or might not be CFS.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#176

Post by peteyPete »

jacobolus wrote: post #103
gozur88 wrote: post #70

Earlier quoted context omitted.

That's just false, and pretty insulting to the medical establishment.

It’s false that cortisol can be easily tested? Or it’s false that many doctors tell patients that their unexplained symptoms are probably just psychosomatic and they should try to reduce stress, as a way of getting them to go away and stop asking for diagnostic efforts beyond the doctor’s current level of expertise? I’ve experienced the latter first hand, and know many other people who have also, none of whom were ch…

As insulting as this may be to some doctors, perhaps the ones who care, it is exactly what most patients of hard to diagnose problems experience most of the time. I've seen many doctors with my girlfriend who suffers from CFS.

Patronizing indifference describes it quite well. They may run a few tests, then come up with nothing and insult you with the dumbest things.. Its especially bad when you go back multiple times and know more about the disease than they do, and the state of the research (this without spending an obsessive amount of time looking into things).

People's lives are totally ruined by this condition. Other diseases where you may experience pain, or discomfort, or reduced mobility, you may still be able to fight through the pain and achieve life goals. With CFS, the harder you fight, the harder you lose. You can go from being an extremely high achiever who works 3 times as hard as everyone else to get there to then being powerless over your own life, career, etc. The harder you try, the harder you fall. You have to learn to do little every day and hope that you're lucky enough that it'll lead you somewhere, or that some day, something will be discovered and it may help your condition.

The worse part is in many places, you get no help.. You may `appear` fine on the day you go in to the doctor, because it was the only thing you did that day and took it easy the day before because you wanted to at least make it to the doctor. Then they don't get it. Or they'll suggest you exercise, as if that makes your CFS better. Nope.. Because if you go at it a bit (10-15 minutes of light cardio) then you're out of commission for a few days, leaving you feeling pathetic and useless as your loved ones pick up the slack and try to provide you with everything you need and not make you feel guilty, while all you wish to do is get up and do chores or your part, or work, or anything productive, to feel alive, to feel like you're useful at something, have a purpose.

But nope. While there is research happening, the general medical community doesn't recognize CFS for what it is and the systems around it which should offer support don't exactly recognize it either. You're more likely to be referred to a therapist to go do some damn CBT than you are to get help. Telling that to someone who has a degree in psych who's done CBT and has CFS and knows the whole thing inside out is pretty demeaning and discouraging.

Anyway.. rant over.. but yeah, patronizing indifference. Hit it on the nail.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#177

Post by gozur88 »

alphaoverlord wrote: post #147
jacobolus wrote: post #103

Earlier quoted context omitted.

It’s false that cortisol can be easily tested? Or it’s false that many doctors tell patients that their unexplained symptoms are probably just psychosomatic and they should try to reduce stress, as a way of getting them to go away and stop asking for diagnostic efforts beyond the doctor’s current level of expertise? I’ve experienced the latter first hand, and know many other people who have also, none of whom were ch…

Not op but cortisol is elevated in "just stress" as well as critical illness. An elevated cortisol is not a diagnostic test that can deferentiate between a serious medical problem and stress.

Also, cortisol isn't always elevated when stress is the problem. So a negative test result doesn't really tell you anything, and a positive test result tells you something, but you don't know what that something is without a lot more testing, which may or may not tell you anything.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#178

Post by Sleeep »

vacri wrote: post #169
Sleeep wrote: post #148

Earlier quoted context omitted.

How do people fake seizures? Do they just flop around on the ground?

They just shake their limbs back and forth or their body. It's pretty easy for anyone familiar with seizures to tell a fake, since most fakers shake their limbs back and forth evenly - a sort of even sawtooth pattern of movement. However, jerky movement in seizures is contraction-relax-contraction-relax, contracting in one direction only, not back-and-forth jerking. People also aren't conscious during full-body seizu…

Wow, interesting. Thanks for sharing your experiences.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#179

Post by dang »

mschuster91 wrote: post #31

The problem is that once you "empower" people you also empower everything from straight out morons to manipulative sociopaths - which has led from relatively harmless homeopathic "medicine" (which is harmless but many people use homeopathic medicine even for serious illness and go to the doctor only when it's unbearable), to the rise of anti-vax movement (where lots of kids actually even died from measles exposure in…

"Please avoid introducing classic flamewar topics unless you have something genuinely new to say about them."

https://news.ycombinator.com/newsguidelines.html

We detached this subthread from https://news.ycombinator.com/item?id=14896531 and marked it off-topic.

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