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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

#41

Post by mschuster91 »

Mz wrote: post #32
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…

Allowing people to take health purely into their own hands leads down to a very dangerous path I said nothing whatsoever to adovocate allowing such a thing. But thank you for providing evidence of my statement about how controlling a lot of people want to be when it comes to such topics.

> But thank you for providing evidence of my statement about how controlling a lot of people want to be when it comes to such topics.

In most areas I tend to be a libertarian - but not when single stupid decisions can affect other innocent people. Fine with me if you want to kill yourself with measles, but leave other people out of this mess.

People refusing vaccinations are a threat to society, and should be exiled in my opinion. As a matter of fact, many countries have shifted to exiling the kids from school when unvaxed in order to combat both the antivax movement and the exploding numbers of (mostly) measles infection. Measles has the very real potential of killing you (or your child), and up to 30% of cases get severe complications as a result.

Remember that the antivax movement basically was hyped up by that Wakefield study? This is something that should not even have been published. It should have been eradicated from the history books.

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

#42

Post by noshbrinken »

komali2 wrote: post #29
o_____________o wrote: post #26

Earlier quoted context omitted.

What incentive do they have besides being a heroic, indefatigable person? If anything, they're increasing their attack surface for being blamed or sued.

Curious about this. I often find engineers motivated purely by the desire to solve the problem. Was just at defcon - witnessed many people vaguely wandering around the tables of teams trying to hack devices, then getting sucked in as they offered solutions and inevitably got involved with trying to solve the problem. Did it myself a couple times, even though I had planned on attending more talks.

I've wondered the same thing myself pretty much every time I've come into contact with a doctor. The fundamental lack of curiosity for someone in a field related to science (seemingly based on science) is astonishing.

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

#43

Post by Mz »

mschuster91 wrote: post #41
Mz wrote: post #32

Earlier quoted context omitted.

Allowing people to take health purely into their own hands leads down to a very dangerous path I said nothing whatsoever to adovocate allowing such a thing. But thank you for providing evidence of my statement about how controlling a lot of people want to be when it comes to such topics.

> But thank you for providing evidence of my statement about how controlling a lot of people want to be when it comes to such topics. In most areas I tend to be a libertarian - but not when single stupid decisions can affect other innocent people. Fine with me if you want to kill yourself with measles, but leave other people out of this mess. People refusing vaccinations are a threat to society, and should be exiled…

Wow, you are completely twisting everything I have said. So twisting it that engaging you in good faith is essentially impossible. You are basically determined to tar and feather me, and never mind what I actually said.

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

#44

Post by noshbrinken »

propman wrote: post #9

If someone comes to you with a whole lot of pain and loss of function, ignoring it and thinking it's just in their head/they just need to toughen up and get over it because nothing showed up in thier blood reports is something that is almost ubiquitous in the medical field today. I have a connective tissue disorder that was ignored for years because nothing showed up in my blood report and I looked healthy. There is…

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 emotional support and sometimes it promotes alternative treatments of dubious efficacy and speculative science based on amateur readings of research. What's really overwhelming is the disconnect between the medical profession and the people they exist to serve. These people need help and yet doctors seem to push them away because doctors are too uncomfortable with a state of not knowing or not understanding.

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

#45

Post by inopinatus »

Mz wrote: post #39
inopinatus wrote: post #37

[flagged]

Your assertion that "policy makers" are systematically withholding "solid information about your body" is paranoid nonsense. I said nothing of the sort. Both of the replies to me seem to be reading in enormous amounts of bs that isn't in my remark at all. Patients being informed about their condition is not all about people promoting snake oil. For some conditions, the patients themselves are often better informed th…

You said everything of that sort.

If that was not your intent, then perhaps in future you might say what you mean, rather than defending the vendors of false hope and perpetuating the extremely harmful myth that one can treat oneself.

As in this:

> patients themselves are often better informed than general MDs

No, that is a gross overgeneralisation and not true of any condition. A few patients may have slightly better information in one dimension of their condition than a GP. Presuming otherwise is foolhardy arrogance that misses the profound interconnectedness and subtle complexity of body systems. And this is especially the case with endocrine and immune systems.

Patients should be as informed as possible, yes, because this is always a benefit to one's treatment. Crossing the line into "I-know-better"-land is arrogance and idiocy.

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

#46

Post by Tobani »

komali2 wrote: post #29
o_____________o wrote: post #26

Earlier quoted context omitted.

What incentive do they have besides being a heroic, indefatigable person? If anything, they're increasing their attack surface for being blamed or sued.

Curious about this. I often find engineers motivated purely by the desire to solve the problem. Was just at defcon - witnessed many people vaguely wandering around the tables of teams trying to hack devices, then getting sucked in as they offered solutions and inevitably got involved with trying to solve the problem. Did it myself a couple times, even though I had planned on attending more talks.

Yes, you could potentially "solve the problem." Unless there is a test or a treatment that is easy and effictive enough to use empirically it is much harder to diagnose that person. Physicians have to balance quality of life improvement for patients along with treatment. There may be a trade-off between efficacy rate of treatments and the likelihood of adequate compliance. People may not change their diets or take their meds appropriately to improve their health for example.

If you can't rely on the patient you might never find the solution. You may just be better off at improving their quality of life even if it doesn't ultimately solve their underlying condition.

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

#47

Post by bogidon »

propman wrote: post #9

If someone comes to you with a whole lot of pain and loss of function, ignoring it and thinking it's just in their head/they just need to toughen up and get over it because nothing showed up in thier blood reports is something that is almost ubiquitous in the medical field today. I have a connective tissue disorder that was ignored for years because nothing showed up in my blood report and I looked healthy. There is…

> Rarely it is psychological

"Medically unexplained physical symptoms (MUPS) are physical symptoms for which no relevant organic pathology can be found. MUPS are very common, comprising up to half of all consultations in primary care and up to one third of those in hospital outpatient clinics.1 Some studies indicate higher prevalence; a landmark study of medical outpatients in North America with new complaints of common symptoms such as chest pain, dyspnoea, dizziness, and headache, found that an organic cause was demonstrated in only 16% of cases.

...Although MUPS are a major clinical problem and widely regarded as being difficult to manage,4 sophisticated approaches to management or even recognition of the problem are unusual, especially in hospital medicine." [1]

I do realize that a case being marked as MUPS is not proven to be psychosomatic (psychological). Yet if even a small amount of MUPS cases are correctly diagnosed, there'd probably be enough of them to surpass the term "rare".

Yes, ideally we would run every possible test on any patient that walks in with a stomachache. But there are limits to our economy and to doctors' time. It's a complex problem.

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564157/

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

#48

Post by inopinatus »

noshbrinken wrote: post #42
komali2 wrote: post #29

Earlier quoted context omitted.

Curious about this. I often find engineers motivated purely by the desire to solve the problem. Was just at defcon - witnessed many people vaguely wandering around the tables of teams trying to hack devices, then getting sucked in as they offered solutions and inevitably got involved with trying to solve the problem. Did it myself a couple times, even though I had planned on attending more talks.

I've wondered the same thing myself pretty much every time I've come into contact with a doctor. The fundamental lack of curiosity for someone in a field related to science (seemingly based on science) is astonishing.

That has never been my experience with any doctor, and I have met many doctors of many different specialties.

Perhaps the problem here is not doctors, but the way you are communicating (or not) with them. Your sotto-voce "seemingly based on science" is exceedingly derisive; perhaps that is carrying across. I too tend to minimise the length of conversations with people that treat me with contempt.

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

#49

Post by FLUX-YOU »

koube wrote: post #34
komali2 wrote: post #29

Earlier quoted context omitted.

Curious about this. I often find engineers motivated purely by the desire to solve the problem. Was just at defcon - witnessed many people vaguely wandering around the tables of teams trying to hack devices, then getting sucked in as they offered solutions and inevitably got involved with trying to solve the problem. Did it myself a couple times, even though I had planned on attending more talks.

They hate solving problems when someone comes up to them with a strange and incomplete description and says "can you fix my problem"? The made a whole show about this called the IT Crowd where they play a tape that says "Have you tried turning it on and off again" instead of legitimately answering phones. https://en.wikipedia.org/wiki/The_IT_Crowd Here's a subreddit where people complain about the problems that peopl…

The human body apparently has pretty terrible UI/UX.

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

#50

Post by joools »

jdietrich wrote: post #22
carbocation wrote: post #2

The article is here: http://www.pnas.org/content/early/2017/07/25/1710519114.full... It's worth noting that their false discovery rate was not study-wide, but rather group-wide. As they state at the very end of the paper, " FDR control was performed separately by group (e.g., severity level) to allow for group differences in the proportions of truly null hypotheses ". So, if you try to look at all significant P-value…

It's also worth noting that there is no clear causal relationship. There is a strong and well-established association between depression and inflammatory biomarkers, but we have very little idea of whether depression increases the risk of inflammatory illness or vice-versa. http://www.mdedge.com/currentpsychiatry/article/76288/depres...

The research I'm familiar with (and teach) suggests you see associations prospectively in both directions, but no clear evidence of causality (although I've grown skeptical of causality as a concept).

This PNAS paper is nice to see, although as some are pointing out, there's a bit of p-hacking probably going on.

My sense is that certain research topics are kind of ground zero in this misled, outdated mind-body war. So you see people trying to demonstrate something along the lines of "see here, there's a biological basis to this, so patients aren't just inventing this," as if the psychosomatic conceptualization of the problem was ever just "inventing it," and as if people with psychogenic psychosomatic problems can't mimic the same things in their subjective reports (what happens when you do have this cytokine screen, and you still have people who look normal on that?)

As you're alluding to here, the problem is that even if you do find inflammation markers it's difficult to tell if this is due to stress in a broad sense, and how these markers relate to perceptions of stress across a broad range of individuals.

Just to take an example: how do these markers look in psychiatric patients who don't report CFS symptoms? I don't mean to suggest that these individuals have psychiatric problems, but it's unclear to me from this study what is going on with these inflammatory markers.

Let's say these cytokines do cause increased pain and fatigue experience. Do CFS patients have a stronger relationship between those inflammatory markers and experienced pain? If so, what does that mean?

The paper itself is more appropriate in tone than the NPR article, for what it's worth.

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