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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

#81

Post by emodendroket »

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…

> A lot of people really, really just want a name for what's wrong with them. So you take a constellation of symptoms and slap a name on it, like CFS. But does that help?

I don't know that that is really all people want. But even the name itself is helpful, yes -- it gives you something you look up and understand what is happening to you, it helps you find and connect with others, and for practical purposes (say, negotiating reasonable accommodations at work) being able to name a disease you've been diagnosed with is obviously helpful.

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

#82

Post by vacri »

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…

> if someone is in pain/unhealthy there is a reason. Rarely it is psychological

Work in medicine, and you'll find a lot of malingerers. Some of them don't even realise that they're faking it. Yes, it sucks from your point of view that no-one believes you, but from the other side, a lot of people fake it, and you have to sort out what's actually going on.

https://en.wikipedia.org/wiki/Munchausen_syndrome

https://en.wikipedia.org/wiki/Munchausen_syndrome_by_proxy

I used to be a neuro tech and have done a lot of EEGs in my time. There are enough people faking seizures to make it a non-trivial issue. Munchausen-by-proxy is a particularly sad problem, where parents make their kids sick in order to get some attention or compassion from others.

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

#83

Post by maxerickson »

inopinatus wrote: post #60
joools wrote: post #55

Earlier quoted context omitted.

The problem for me is that currently the choice is between accept definitions of "authority" as it is decided for you, or "you've crossed into arrogance and idiocy." And the consequences ultimately are most severe for the patient, who has more skin in the game, literally, than the provider. I'm not talking about quack authority figures, though, either. Let's say, for example, that you, as a patient, have been reading…

If it's a matter of degree, then here's my take on your remark. Your comment has not merely crossed the line into "I-know-better"-land, it is days into that territory, is lost without a map, is desperately looking for water and shelter, but is still having terrible trouble admitting to itself that it might have made a horrible mistake. > Let's say, for example, that you, as a patient, have been reading the literature…

Did they edit their comment to say "treatment" instead of "procedure"?

Because there's lots of things that fall under treatment that have pretty effective legal gatekeeping around them.

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

#84

Post by Mz »

tomhoward wrote: post #77
inopinatus wrote: post #69

Earlier quoted context omitted.

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 o…

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.

This has been my experience as well. MCT oil has long been medically recommended (i.e. by actual doctors) for serious gut issues, such as stomach cancer and cystic fibrosis. It is not routinely recommended by doctors as a standard treatment for CF, but it is popular in the CF community. It isn't not a drug. It is not an unproven treatment. It has a solid track record.

But, it seems to not be actively promoted in part because it isn't a drug. It is cheap and effective, but no miracle cure.

What gets actively touted are new drugs that cost $250k or more annually and are only effective on about 5 percent of patients.

There is no big fortune to be made in telling seriously ill people "If you eat better and avoid triggers, you can have higher quality of life, need fewer drugs, etc." There is a huge fortune to be made on these extremely niche drugs with insane price tags. So, doctors and other business people often promote the things that are lining their pockets, rather than the things that help patients improve their quality of life at little cost and low risk.

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

#85

Post by Mz »

maxerickson wrote: post #83
inopinatus wrote: post #60

Earlier quoted context omitted.

If it's a matter of degree, then here's my take on your remark. Your comment has not merely crossed the line into "I-know-better"-land, it is days into that territory, is lost without a map, is desperately looking for water and shelter, but is still having terrible trouble admitting to itself that it might have made a horrible mistake. > Let's say, for example, that you, as a patient, have been reading the literature…

Did they edit their comment to say "treatment" instead of "procedure"? Because there's lots of things that fall under treatment that have pretty effective legal gatekeeping around them.

I don't believe so. Inopinatus has wildly misquoted me and others here.

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

#86

Post by TimPC »

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…

This actually depends on how rare the disease is. With a relatively high false positive rate and the disease being quite rare (given symptoms that arguably match), the false positives dominate the true positives anyways.

It does get worse if you run everything on a healthy patient though.. you definitely get back many false positives.

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

#87

Post by kevin_thibedeau »

emodendroket wrote: post #78
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.

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

You don't maximize profit by spending more than 15 minutes on each patient. That is how American medicine is reasoned. Time is money and medical mysteries are a waste of time.

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

#88

Post by inopinatus »

tomhoward wrote: post #77
inopinatus wrote: post #69

Earlier quoted context omitted.

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 o…

Nutrition. Exercise. Stress management. I think these are mainstream health practices.

There are practitioners with other qualifications. Although I've met physios with some peculiar ideas that subsequently turned out to be have a very high proportion of adverse effects (e.g. spinal adjustments).

My message is consistent, I hope: try what you will, but never pretend to expertise, and steer clear of recommending or suggesting anything to anyone, because at that moment one becomes a snake-oil peddler and are risking harm to someone else. Recognise that even medical practitioners are taught not to treat themselves or family because you cannot, cannot be objective about it.

I do not express an opinion on your personal journey, except to say that despite not knowing you from Adam it's still gladdening to learn that you are feeling better.

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

#89

Post by Mz »

inopinatus wrote: post #88
tomhoward wrote: post #77

Earlier quoted context omitted.

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 o…

Nutrition. Exercise. Stress management. I think these are mainstream health practices. There are practitioners with other qualifications. Although I've met physios with some peculiar ideas that subsequently turned out to be have a very high proportion of adverse effects (e.g. spinal adjustments). My message is consistent, I hope: try what you will, but never pretend to expertise, and steer clear of recommending or su…

Nutrition. Exercise. Stress management. I think these are mainstream health practices.

If you have a very serious medical condition, like cancer, and you talk to a doctor about things like taking vitamins, most of them will pooh-pooh it as if any impact it has is merely a placebo effect. Using nutrition, exercise and stress management as part of your defense in the face of something that doctors don't really know how to treat gets dismissed and attacked and basically lumped in with snake oil. In fact, you are basically doing this yourself with your wild misquotes of people here in service of some agenda that has nothing whatsoever to do with trying to comprehend anything being said here, as best I can tell.

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

#90

Post by taneq »

FLUX-YOU wrote: post #49
koube wrote: post #34

Earlier quoted context omitted.

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.

It's not bad for something we found in a cave.
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