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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

#91
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…

> No, that is a gross overgeneralisation and not true of any condition.

Bullshit. Anyone with a scientific background and a vested interest in studying a specific uncommon disease will likely know more about it than most GPs. General Practitioners are just that - generalists. They know the basics, plus enough to refer patients to an appropriate specialist. It's unreasonable to expect them to be well versed in every single obscure condition that a new patient could possibly have, and it's a naive appeal to authority to state that they automatically "know better" due to having a medical degree.

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

#92
post #40
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.

Nah, it's because a doctor can't spend ten minutes thinking about what's going on with a patient, much less a couple of hours. This is what we got from our lame attempt to shoehorn health care into the commodity business model we use to manage fast food joints.

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

#93
post #91

Earlier quoted context omitted.

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…

> No, that is a gross overgeneralisation and not true of any condition. Bullshit. Anyone with a scientific background and a vested interest in studying a specific uncommon disease will likely know more about it than most GPs. General Practitioners are just that - generalists. They know the basics, plus enough to refer patients to an appropriate specialist. It's unreasonable to expect them to be well versed in every s…

> 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.

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

#94
post #85

Earlier quoted context omitted.

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.

When I quote someone, I put it in "quote marks", or > italic.

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

#95
post #91

Earlier quoted context omitted.

> No, that is a gross overgeneralisation and not true of any condition. Bullshit. Anyone with a scientific background and a vested interest in studying a specific uncommon disease will likely know more about it than most GPs. General Practitioners are just that - generalists. They know the basics, plus enough to refer patients to an appropriate specialist. It's unreasonable to expect them to be well versed in every s…

> 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

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

#96
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 things, but with converging symptomology. You have a real catch 22 situation. Can't identify the cause of the disease without a consistent experimental group. Can't select a consistent experimental group without a functional test.

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

#97

I can only hope/wish for some advancement in CFS/ME.. Having a loved one who has it makes you see how hopeless many people have been for so long and how little the healthcare system has been able to help. Really hope to see change soon.

Yes, at the moment doctors aren't really much help. However there are various things you can do yourself as a CFS patient to improve things, and possibly recover.

I suffered from CFS myself and recovered about 17 years ago (with no relapses since), so it is possible.

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

#98
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…

I'm glad you finally got some help. What was the name of the disease you were eventually diagnosed with?

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

#99
post #89

Earlier quoted context omitted.

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…

I am not surprised that you dislike that I have rebutted your remarks. Nevertheless, when I quote you, it is practically cut-and-paste.

Mz, I think your comments in particular in this thread have been worthy of such strongly worded reprimand because they could lead others to attempt self-treatment and to disregard medical advice.

The fact that you've done so by misrepresenting the character, motives, competence and behaviour of practitioners is something I take further umbrage at.

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

#100
post #89

Earlier quoted context omitted.

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…

I am not surprised that you dislike that I have rebutted your remarks. Nevertheless, when I quote you, it is practically cut-and-paste. Mz, I think your comments in particular in this thread have been worthy of such strongly worded reprimand because they could lead others to attempt self-treatment and to disregard medical advice. The fact that you've done so by misrepresenting the character, motives, competence and b…

When you misquote me and then wildly twist my meaning, with zero intent whatsoever to actually have any respect for me or understand anything I am saying, yes, you very selectively cut and paste in order to try to make it say whatever meaning you are attempting to force upon my words.
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