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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

#121
post #116
post #72

Earlier quoted context omitted.

> 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…

We have diagnosticians? This is my first time hearing of them so they must be pretty rare.

Would have been nice when one of my family members was in the hospital for 6 months. Maybe he was talking about Dr. House?

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

#122
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.

imo one problem with your joke is that it's not clear what part of your post isn't a joke anymore. was the whole thing setting up for a punchline, or are you even from russia. ends up as kind of a bizarre post for that reason.

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

#123
post #107
post #96

Earlier quoted context omitted.

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 th…

Makes me think of Anscombe's Quartet. https://en.wikipedia.org/wiki/Anscombe%27s_quartet

I love Anscombe's quartet.

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

#124
post #106
post #96

Earlier quoted context omitted.

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 th…

That's a very good point. The paper suggests that "severity may be a key variable for subgrouping ME/CFS." So it's possible that there are three different ME/CFS diseases that can be distinguished by cytokine levels. Hopefully once these are separated, statistical analysis will succeed and medical progress would follow. In the bigger picture, you have to wonder how many things that we currently categorize as one dise…

> how many things that we currently categorize as one disease are really many different diseases.

Had a GI doctor tell me he thinks there are 'lots' of gastrointestinal syndromes that medicine has no way to identify. Also have read an epidemiologist years ago that wrote there are probably a lot more infectious diseases out there. Some of which may have serious long term complications.

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

#125
post #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 th…

Chronic Fatigue Syndrome is a syndrome - ie. "a group of symptoms which consistently occur together". The fact that it's called a syndrome rather than a disease is a recognition that it's not understood and may be in fact a grouping of different diseases with similar symptoms.

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

#126
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…

Would you please stop being so personally rude and thorny? Discussions are always of higher quality when we aren't and quality is what we're here for.

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

#127
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…

Uh-oh.

That is the point where your physician had to stifle a giggle, I'm afraid.

People who are sincerely and humbly committed to seeking truth on a topic, don't make sneering comments like this.

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

#128

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…

...except to say that despite not knowing you from Adam it's still gladdening to learn that you are feeling better.

Thanks for the constructive comment.

I would urge you to examine your own conduct in this thread however, particularly towards Mz.

You really do seem to be waging war against a straw man, and expressing fears about risks and dangers that everyone like myself and Mz are well-and-truly aware of and cautious to avoid.

I'm sure you are sincere in your belief that you are well-intentioned.

But in your quest to protect unwitting victims of snake-oil-touting charlatans, you end up being a bully towards people who have experiences and insights that you don't have, and infantilising people who are mature and educated enough to do their own research and make their own decisions.

Like I said, I'm sure your heart is in the right place. But you'd do well to be more considerate toward others' experiences and perspectives, and charitable in your reading of different opinions on issues of such importance.

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

#129
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…

It's probably not dismissal in the sense that they don't believe you. It's dismissal in the sense that they can't treat something effectively without a diagnosis.

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

#130
post #96

Earlier quoted context omitted.

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 th…

It isn't really that much of a problem. If you collect data on a large enough cohort of symptomatic individuals, you can recover separate subtypes through cluster analysis.

Cluster analysis will require thousands of not tens of thousands of cases to study. And since we don't know even how many diseases there are, this will have to be an unsupervised CA, so for each case you'll be looking tens if not hundreds of parameters.

Machine Learning techniques are well suited to crunching this type of data, but don't underestimate the difficulty in collecting so much data.

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