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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

#61

Post by tomhoward »

inopinatus wrote: post #45
Mz wrote: post #39

Earlier quoted context omitted.

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 bette…

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.

In my experience, people with chronic illness who take their own treatment into their own hands have a far better a appreciation for the "interconnectedness and subtle complexity of body systems" than do mainstream physicians.

My own recovery from chronic fatigue has come about because I developed a deep understanding of this and undertook an assortment of practices that enabled these systems to correct themselves.

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

#62

Post by [deleted] »

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.

[deleted]

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

#63

Post by jaggederest »

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…

> Well, what do you want to happen? The doctor doesn't know what's wrong with you. Maybe someone else does; do you want the doctor to refer you to someone else who might be able to figure you out? Maybe no one does; there's a lot of things that go wrong with people and we haven't even identified them all yet, let alone figured out any sort of treatment.

I think the thing that I see missing most in medical treatment is a sense of empiricism. That's part of why I really value my doctor - he's less about "what particular disorder", and more about "how is your quality of life?"

If I go to him with a particular problem, we focus on that problem, but he's always referencing back to overall quality of life and management, rather than "fixing a problem" and walking away. Every time I see him there's a recheck on any existing or recently addressed problems, and usually a screening for something that they're trying to reduce on a patient-population basis (alcoholism, for example)

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

#64

Post by bogidon »

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…

To be clear, I'm not at all saying that false negatives are acceptable. I'm sorry that your migraines went undiagnosed for so long and am happy to hear that you were eventually helped.

I just wanted to point out that it is a complex issue because there most likely are a significant number of patients who have pyschosomatic pain. And because of them it's, unfortunately, difficult to achieve comprehensive testing. (But I don't want to sound like I'm blaming this group very much. Stress can be terrible, especially when it's chronic. Though freeloaders are a different problem..)

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

#65

Post by jdietrich »

Reason077 wrote: post #35
jdietrich wrote: post #22

Earlier quoted context omitted.

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...

You'd think the answer would be easy to figure out. If you successfully treat the inflammatory illness, does the depression go away?

The answer to that question just muddies the waters further. Anti-inflammatory drugs have been shown to have some anti-depressant effect, while anti-depressant drugs have been shown to have some anti-inflammatory effect. In both cases, the effect size is fairly small.

It would be nice to find a simple cure for a complex and diffuse set of symptoms, but we haven't had any luck so far. In all likelihood there are multiple interacting factors that affect the progression of depressive disorders, with no singular cause.

http://www.nature.com/mp/journal/vaop/ncurrent/full/mp201616... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3194072/

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

#66

Post by narrator »

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.

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

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

#67

Post by bogidon »

ucaetano wrote: post #58
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…

"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?

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

#68

Post by jonlucc »

smallnamespace wrote: post #38
Reason077 wrote: post #35

Earlier quoted context omitted.

You'd think the answer would be easy to figure out. If you successfully treat the inflammatory illness, does the depression go away?

> If you successfully treat the inflammatory illness How do you know you completely succeeded?

This is not my field, but you can measure inflammation a couple of ways. One is by quantifying cytokines present and another one is to count blood cells.

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

#69

Post by inopinatus »

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…

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 active dislike of the phrase, because it fails to capture just how harmful they can be, and how rarely they are actual remedies. "Unproven interventions" might be a better name.

More precisely, they also serve to mask those treatments deserving of more research that might actually have some potential, because such signal is lost in the torrential noise of snake oil and quackery.

I join your criticism of the externalities in the US market-led system that incentivise research into drugs of symptomatic relief rather than cures.

Nevertheless I believe that is a short-term systemic malfunction, and in any event is not a severe problem elsewhere where drug pricing is regulated. Large amounts of money and time are routinely allocated around the world for fundamental research into many difficult and poorly understood conditions. Pointing out that medicine can't treat everything is fine, because if it could we wouldn't need more research. But claiming the research doesn't get done, that's simply untrue.

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

#70

Post by gozur88 »

narrator wrote: post #66
gozur88 wrote: post #40

Earlier quoted context omitted.

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.

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.
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