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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

#71

Post by azernik »

bogidon wrote: post #67
ucaetano wrote: post #58

Earlier quoted context omitted.

"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." The problem isn't necessarily economical, a lot of those tests are actually very cheap. The problem is that most tests have high false-positive rates, which you account for by using bayesian inference: the probability of having the disease w…

I see. I was wrong to make assumptions about what the limitations are. Thanks for the link. I wonder how closely doctors follow bayesian inference (and how many know about it). It seems pretty intuitive, so maybe it's already largely applied?

It is at least implicit in testing practices; the reason diagnosis often involves a series of tests is that they first screen with cheap, low-false-negative testing, then apply more expensive tests to weed out the false positives. But of course the rarer the disease, the harder that second phase becomes.

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

#72

Post by fao_ »

propman wrote: post #53
bogidon wrote: post #47

Earlier quoted context omitted.

> 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 com…

The ailments you describe though can certainly be debilitating but require no underlying diagnosis. Me and my mother have horrible migraines, no one knows why but it doesn't matter because I was prescribed a medicine, didn't work. I was prescribed a second one and it worked and it is frustrating and it sucks but quality of life is the same. For all those ailments, we can treat stomach aches, dizziness, headaches. But…

> Also, if problems aren't certain as they are chronic, widespread or hard to diagnose you see certain specialists who are trained to diagnose. You don't see a general physician

This is actually (imo) one of the largest failings in the UK's various health systems -- Diagnosticians as you have them in the US, do not exist. The entire system relies on GPs keeping up to date on various diseases and symptoms. This means that a lot of the time diseases that typically present with vague symptoms, like cancer, can go undiagnosed for years.

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

#73

Post by kirrent »

bogidon wrote: post #67
ucaetano wrote: post #58

Earlier quoted context omitted.

"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." The problem isn't necessarily economical, a lot of those tests are actually very cheap. The problem is that most tests have high false-positive rates, which you account for by using bayesian inference: the probability of having the disease w…

I see. I was wrong to make assumptions about what the limitations are. Thanks for the link. I wonder how closely doctors follow bayesian inference (and how many know about it). It seems pretty intuitive, so maybe it's already largely applied?

I've actually been going through this recently with a series of cancer tests with a high false positive rate. When I was discussing it with my specialist he said that he and other doctors don't necessarily think of it in rigorously Bayesian terms, but they're familiar with the sensitivity and specificity of each test and have a pretty strong understanding of what that means based on priors.

Talking to medical students I get the same impression. The refrain I commonly hear is that high sensitivity tests can rule something out, and a high specificity test can rule it in. Obviously that's a reasonably shallow understanding, but when they combine that with their intuition of a prior it seems like they get pretty good results.

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

#74

Post by ucaetano »

bogidon wrote: post #67
ucaetano wrote: post #58

Earlier quoted context omitted.

"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." The problem isn't necessarily economical, a lot of those tests are actually very cheap. The problem is that most tests have high false-positive rates, which you account for by using bayesian inference: the probability of having the disease w…

I see. I was wrong to make assumptions about what the limitations are. Thanks for the link. I wonder how closely doctors follow bayesian inference (and how many know about it). It seems pretty intuitive, so maybe it's already largely applied?

"It seems pretty intuitive, so maybe it's already largely applied?"

It is! That's why doctors don't order every single possible test every time you show up sick!

That's also why consumers SHOULD NOT be testing by themselves without medical supervision (I'm looking at you, Elisabeth Holmes and Theranos).

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

#75

Post by azernik »

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…

Generally the solution is to come up with a descriptor like "Irritable Bowel Syndrome" or "Ideopathic XYZ" - these labels basically say that "you have some of so-and-so set of commonly co-morbid symptoms and we can't pin down a cause in your case". Not useful for cures, but useful for lumping together research projects and for managing symptoms. "Chronic Fatigue Syndrome" is one such label, and may be a cluster of diseases that present similarly.

The problem is when doctors and researchers lump these things into the "crazy patient" bin and time spent helping these patients as wastes of their time, rather than just hard cases.

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

#76

Post by azernik »

pault wrote: post #19
mudil wrote: post #17

I am an MD, born in Russia, but did medical school here in the United States. All the same, people constantly ask about the Russian medicine, and so I was recently asked if we have fibromyalgia in Russia. My answer was that I don't know about fibromyalgia. But what I know is that half of the psychotropic drugs that people are prescribed in this country we only give to political prisoners in Russia.

Can you elaborate? Why are political prisoners medicated?

Not GP, but I can elaborate a bit. It was common Soviet practice in the post-Stalin era to, instead of explicitly arresting political dissidents, to classify them as insane and have them involuntarily committed. Looks less bad than calling it a jail.

I haven't heard of this practice being continued in post-communist Russia, but I wouldn't be enormously surprised to hear that it was.

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

#77

Post by tomhoward »

inopinatus wrote: post #69
tomhoward wrote: post #59

Earlier quoted context omitted.

> "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…

On the contrary, I shared this quote having full knowledge of the cost and complexity and political barriers, having both studied the industry academically and being personally close to medical practitioners engaged in the research and implementation of new treatments. I think all suggestion of "alternative remedies" is dangerous, since it opens the door to those preying on desperation to sell false hope. I have an a…

I think all suggestion of "alternative remedies" is dangerous, since it opens the door to those preying on desperation to sell false hope.

I'm with you on practitioners who charge thousands of dollars offering to cure terminal cancer with carrot juice and coffee enemas. But this is a very small segment of the industry, and from what I've seen, anyone who does that for any amount of time gets regulated or shamed out of business.

Most natural health practice is nothing of that sort. It's things like diet/nutrition, exercise, stress/trauma therapy; all things that have significant evidence of being beneficial.

All the treatments I've tried in my journey to get well fit into this category: low-risk treatments for non-life-threatening conditions, that just support the mind and body to heal and strengthen naturally over the long term. I've been doing it for nearly 10 years and in that time my life has utterly transformed.

Do you have any objection to this that doesn't rely on dismissing every health provider without a medical degree as a dangerous charlatan?

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

#78

Post by emodendroket »

gozur88 wrote: post #40
tomcam wrote: post #24

Earlier quoted context omitted.

MD's are by and large incredibly non-curious about hard-to-diagnose chronic conditions

Because as a society we can't spend ten million dollars on every patient with a hard-to-diagnose chronic condition that may just be stress. It just isn't practical.

I find it hard to look at American medicine and conclude that reasoned, careful rationing of costs is actually a factor.

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

#79

Post by emodendroket »

tomcam wrote: post #24
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…

MD's are by and large incredibly non-curious about hard-to-diagnose chronic conditions

I found seeking treatment for RSI pretty frustrating until I went to an occupational therapist.

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

#80

Post by maxerickson »

gozur88 wrote: post #40
tomcam wrote: post #24

Earlier quoted context omitted.

MD's are by and large incredibly non-curious about hard-to-diagnose chronic conditions

Because as a society we can't spend ten million dollars on every patient with a hard-to-diagnose chronic condition that may just be stress. It just isn't practical.

That sure does leave a lot of middle ground with doing nothing.
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