Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome • Hacker News Board

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

#101

Post by inopinatus » Tue, Aug 01, 2017, 2:37 AM UTC

Mz wrote: post #95

inopinatus wrote: post #93

Earlier quoted context omitted.

> Anyone with a scientific background and a vested interest in studying a specific uncommon disease You totally missed my point there, which was rebutting that patients "often know better", which is just plain crap.

You are "rebutting" things that haven't been said by anyone. And then insisting you are right. Here is what I actually said, which you intentionally misquoted and are now twisting into something else entirely: For some conditions, the patients themselves are often better informed than general MDs. Only actual specialists in the condition really know more

And that is not so except for a very small minority of presentations. If you'd said "very occasionally" rather than "often" I might agree. Everyone else is simply pretending to a much higher level of expertise than they possess.

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

#102

Post by ScottBurson » Tue, Aug 01, 2017, 2:38 AM UTC

saalweachter wrote: post #54

noshbrinken wrote: post #44

Earlier quoted context omitted.

Unfortunately, CFS is not the only illness whose existence the medical profession generally refuses to admit. There are a host of other syndromes or symptom constellations that doctors can't find markers of and thus call psychosomatic. Generally, people suffering from these conditions congregate on message boards where they develop a culture and community. Sometimes this is truly productive research sharing and emoti…

At some point you start edging out of the realm of medicine and into the realm of expectations. So you're feeling bad, and you go to the doctor. The doctor listens to your symptoms, and does some tests -- blood tests, MRIs, listening to your chest, whatever -- for the most common causes. They come back negative. So he talks to some colleagues, reads his old reference books, Googles around a little, and comes up with…

This is why, as someone with a mild case of this illness, I greatly prefer the recently suggested name "Systemic Exertion Intolerance Disease". At the very least, it is a more precise description of the most distinctive attribute of the illness: that for someone with it, overexertion causes a particular cluster of symptoms: headache, brain fog, general malaise. (Those symptoms are nonspecific by themselves, of course, but they way they show up after overexertion -- often hours later -- is, AFAIK, unique to this disease. The threshold of overexertion varies from person to person and perhaps even from day to day.)

I think you're probably right that there people with other conditions, which present somewhat similarly, who get diagnosed with CFS even though their condition has a different cause from what I have. I'm not even sure that fibromyalgia, often discussed in the same breath with CFS, is the same illness I have (I've never had muscle pain with this).

I don't have a problem with doctors saying they don't know what they can do and waiting for more information. It's the ones who can't admit they don't know, and therefore say it must be psychosomatic and should be treated with antidepressants, that I have trouble with. Fortunately my doctor never did that.

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

#103

Post by jacobolus » Tue, Aug 01, 2017, 2:46 AM UTC

gozur88 wrote: post #70

narrator wrote: post #66

Earlier quoted context omitted.

Stress can show up as chronic cortisol elevation which is not an expensive test. Instead we get the cheapest cure of all: gaslighting.

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 chronically stressed in any kind of unusual way, as far as I could tell.

Maybe “gaslighting” is a slightly unfair name. I would describe it more along the lines of “patronizing indifference”.

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

#104

Post by _ywdj » Tue, Aug 01, 2017, 3:02 AM UTC

There seems to be a desire evident in the commentary on this topic to categorise CFS as either completely psychological, or completely physiological.

My own experience, having had the condition for much of the past 10 years, and having (after many years of frustration) found treatment methods that have enabled me to achieve almost full recovery, is that it is very much both physiological and psychological, and that only by treating the mind and the body together can full recovery be achieved.

Whilst many people will want to read this study as evidence that CFS is fundamentally physiological in nature, it doesn't do anything to dismiss the role of psychology as a causal or perpetuating factor. It is equivalent to using a lab test indicating (for example) imbalances of serotonin as evidence of depression, without taking into account the many years of stress and trauma that may have led up to the issue manifesting as a physiological (and debilitating psychological) condition.

Whilst I have no doubt there is scope to develop treatments that can ease CFS sufferers' physiological symptoms, and I hope research findings like this can help to bring about these kinds of breakthroughs, I have no expectation that a comprehensive remedy for CFS can be found that doesn't include profound psychological healing as a key part of the treatment.

It also occurs to me that a major reason why this condition continues to evade explanation and treatment by mainstream medicine, is that the profession is unaccustomed to looking at things as both psychological and physiological in nature, and that it will take a change in mindset on this to pave the way to discovering effective treatments for CFS and other such "mysterious" conditions.

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

#105

Post by Nightshaxx » Tue, Aug 01, 2017, 3:22 AM UTC

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 that hard, I can go to that social event, but I just am so tired I can't do it.

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

#106

Post by kens » Tue, Aug 01, 2017, 3:24 AM UTC

Gibbon1 wrote: post #96

kens wrote: post #28

I looked at the paper and the data is kind of strange. Looking at figure 2, there are a bunch of cytokines that have a nice linear progression with increasing levels corresponding to increasing severity of disease. This seems like solid evidence that more cytokine = bad. But if you compare with the controls, mild cases of ME/CFS have less than the control, moderate cases have the same as controls, and severe cases ha…

The thing that currently spazs me out is the Simpson Paradox (Yule–Simpson effect) https://en.wikipedia.org/wiki/Simpson%27s_paradox In short, if your population has two (or more) diseases with similar enough symptoms that they are grouped together, statistical analysis can and does totally fail. And your experiment will produce garbage. So what if Chronic Fatigue Syndrome is really caused by a couple of different th…

That's a very good point. The paper suggests that "severity may be a key variable for subgrouping ME/CFS." So it's possible that there are three different ME/CFS diseases that can be distinguished by cytokine levels. Hopefully once these are separated, statistical analysis will succeed and medical progress would follow.

In the bigger picture, you have to wonder how many things that we currently categorize as one disease are really many different diseases. (Like how in the 1800s, people would die of "a fever" but we now know there are many different diseases causing fevers.) It's kind of a cliche now that cancer is not a single disease. I expect conditions such as autism and schizophrenia will fragment once the right tests are available. What else?

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

#107

Post by Terr_ » Tue, Aug 01, 2017, 3:30 AM UTC

Gibbon1 wrote: post #96

kens wrote: post #28

I looked at the paper and the data is kind of strange. Looking at figure 2, there are a bunch of cytokines that have a nice linear progression with increasing levels corresponding to increasing severity of disease. This seems like solid evidence that more cytokine = bad. But if you compare with the controls, mild cases of ME/CFS have less than the control, moderate cases have the same as controls, and severe cases ha…

The thing that currently spazs me out is the Simpson Paradox (Yule–Simpson effect) https://en.wikipedia.org/wiki/Simpson%27s_paradox In short, if your population has two (or more) diseases with similar enough symptoms that they are grouped together, statistical analysis can and does totally fail. And your experiment will produce garbage. So what if Chronic Fatigue Syndrome is really caused by a couple of different th…

Makes me think of Anscombe's Quartet.

https://en.wikipedia.org/wiki/Anscombe%27s_quartet

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

#108

Post by Alex3917 » Tue, Aug 01, 2017, 3:33 AM UTC

tomhoward wrote: post #59

inopinatus wrote: post #37

[flagged]

> "Do you know what they call 'alternative medicine' that's been proved to work? Medicine." - Tim Minchin, Storm, 2008 I've been a big fan of Tim Minchin's, and thanks to living in one of the cities where he built much of his early fame, I've seen and enjoyed much of his work. But I feel like a form of Godwin's Law should apply to this quote. It's been done to death, it contributes nothing of value to the discussions…

> I feel like a form of Godwin's Law should apply to this quote.

I would liken it more to the "nothing to hide" argument or "it's what plants crave." Some things actually are Nazi-like even if it's cliche to point it out. Whereas the Minchin quote is just something that people mindlessly repeat, seemingly detached from any sort of objective reality.

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

#109

Post by inieves » Tue, Aug 01, 2017, 3:36 AM UTC

CFS is most likely "Candidasis". An overgrowth of candida bacteria/yeast in the gut.

This is very well known, and easily and cost effectively treatable.

Consistent overconsumption of processed sugars leads to candida overgrowth. The body addresses this naturally through inflamation. Prolonged inflamation yields depression symptoms, and a host of other things.

Google: candida

You can recover from this mostly in one night for $5 and fully in about 2 weeks for $30.

Ultimately these Stanford guys will try to design and patent an anti-inflammitory and it will cost you alot and not solve the problem. Address the source of inflammation.

Im surprised no one in this thread knows this and debate has wandered into little to no value.

If you are suffering from this, please please research candidasis or candida cleanse.

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

#110

Post by revscat » Tue, Aug 01, 2017, 3:40 AM UTC

dEnigma wrote: post #16

revscat wrote: post #6

Can I ask an honest, albeit admittedly cynical, question? In a world run by libertarian capitalists, what good comes from such studies? I know such things can be used to determine policy. But let's say that in turns out cytokines do, in fact, cause CFS, and that -- for the sake of argument -- banning them would be a good thing. How would this newfound knowledge go from being something known to having action taken upo…

Cytokines are actually produced by the human immune system, so banning them wouldn't do much good. See the slides linked in the article[0] Unless you were making a joke, in which case I didn't get it. [0] http://www2.nau.edu/~fpm/immunology/lectures/Chapter012.pdf

Missing the point. The causal agent is secondary to the overarching question of what good this (or similar) research does in a predominantly libertarian political environment.