As someone who is extremely cautious about any medical information found on the Internet, I would wonder whether that cautiousness is heightened or lessened when talking about rare diseases. How do these power users know who to trust?
As someone who suffers from a rare disease I have to be skeptical about whose information I trust. I tend to rely more on scientific papers and resources like PubMed. Many times you hit a paywall but with some good searching techniques you can usually find the full articles/publications for free.
As for my disease there is some very good scientific information out there and I have even found that there is an experimental procedure using stem cells (hematopoietic cell transfer) that could potentially cure me. The main problem is that there is a lot of misinformation on the Internet about stem cell transplants. There are a lot of places that are taking advantage of "medical tourism" revolving around stem cell transplants. These places are giving patients false hopes by providing a version of stem cell transplant that is IMHO not effective. You need to make sure to validate your findings and stick to respectable scientific sources. If someone is saying they have an amazing cure it is most likely snake oil.
As someone with a less rare disease, I can say a bigger danger is getting a very negative picture about your condition. The people that are very active in these communities are often the ones that are dealing with the disease more often due to severity (i.e. those that are dealing with the disease fine are often not seeking out these communities). This creates a selection bias that can give you a very negative picture of your prospects that doesn't correlate well with reality.
I'm not saying that these communities are bad. You just have to take everything into consideration when dealing with them.
I completely agree with you. Having a positive outlook is essential to coping with any disease. I find myself felling more depressed when I really focus on my disease. I understand the need to relate with other people with a similar condition. However, it is important not to let other people's experiences directly affect your state of mind.
I'm going to guess "hightened". My mother was recently diagnosed with a myeloproliferative neoplasm, and has been reading & connecting online with great vigor since. I can't speak for her, of course, as to how she knows who to trust, but my sense is that it's not quite like googling for diabetes or toenail fungus and getting homeopathy links in the results. Rather, it's more like exchanging emails with other patients with the same disease, and reading documents offered by the Mayo Clinic etc. No doubt she still needs to exercise critical thinking, and not everybody is equally equipped for that.
One big problem with the rare diseases is that there may not be any science on a given subject. By that I mean not merely that nobody may have studied it, but that papers are quite narrow, so there may only be published research on two or three possible therapies out of several that may be promising. Yet you must make decisions relevant to your disease and life in general; maybe diet changes, maybe exercise changes, etc. If you can't have science, anecdotal evidence and personal conversations may be all you have. I would be cautious and skeptical, but on the other hand, you may have nothing else to turn to.
I love science, but no one can avoid having to function beyond the light it casts, the moreso for those with rare diseases.
I've got Celiac; whether it meets the fewer-than-200,000-in-the-US criterion depends on who you ask, but it's certainly less well covered by science than I'd like. Yes, there's a relatively easy treatment for me: Don't eat gluten. But I also am having children, and the science on what's best to do for them is very unsettled. There's hints of the importance of breast feeding, but, suppose my kid has all the genes and is breast fed and ends up with the condition masked by it, but still present. Is that possible? Is it better or worse than the obvious manifestation I experienced? Should I just cut them off from gluten entirely preventatively, or might that make it much worse if they ever accidentally get some anyhow, which is inevitable? Nobody knows, the available science only provides somewhat contradictory hints, yet my wife and I have to decide something.
That's true. I have run into the same thing. At times I get a little frustrated by all the research going on for other diseases. For example cancer is a multi billion dollar business. Where I go for treatments I almost feel like a second class patient. The cancer patients have access to all of these programs and support. Those of us with the rare diseases are often overlooked.
Still we need to realize that advances in these other diseases can still our diseases. For example, advances in stem cell therapies for other autoimmune diseases could help people like you who suffer from celiac disease. I have found that even when there is no specific information about your disease it is still possible to connect many of the dots. In my case it helps to have a wife who has multiple degrees in chemistry and biology. Combine that with my technical ability and we are a serious researching team. At times it is hard to sift through all of the information. The one thing I have really learned is that you have to take control of your disease. Sadly our doctors are not going to look out for us. It is our job to make sure we get the care we need and deserve.
The fact that some are managing to make a put-their-kids-through-college living doesn't undermine his point in the least. The fact of the matter is that the number of content creators who can meet that threshold continues to plummet at an alarming rate. Those who speak so glowingly of the promise of "the new models" are almost inevitably either succeeding with one already (at least temporarily) or not at all personally dependent on doing so. Not only are new models needed, but they need to scale or the number of content creators sending their kids to college will continue to dwindle.
Is the number actually plummeting? Breaking into the traditional publishing industry (or the art-gallery scene) has always been notoriously difficult, which is why aspiring authors spent years mailing out manuscripts, publishing pieces in literary magazines for very small fees that weren't enough to live on, waiting tables while living in garrets, etc. And then even once you got published (a tiny minority of writers), you didn't necessarily get enough in advances and royalties to actually live on it unless you were in the top tier of sellable writers. It's possible it's even worse now, but I haven't seen figures.
I think you have to consider journalists as well as "people looking to sell books".
I don't have anything constructive to add about the number of professional journalists, but I think they belong in this discussion as well as the "trying to sell books" crowd.
I don't think they do. Print journalists compete directly with the 6am/12pm/5pm/10pm news on radio and TV in that they're providing exactly the same material.
An author isn't competing directly with Radio, TV or Cinema, in fact the three are generally seen as complimentary markets. I've barely seen a good/great movie in the past decade that hasn't come from a book. From these films made from books, they explode the sales of the books.
Movies and TV is never going to replace literature, the cost->outcome ratio is far too big for movies than it is for books. I'm a writer, I'm currently working on a novel and I only have to do a couple of hours a night to be doing 1,000 words a day. Supposing I'm hitting only 250 words an hour (about 1/2 of what I usually do and I'm by far from the ideal writing situation that I used to have when I was working as a reviewer; this would easily factor in editing and other work for sale) it would take about 320 hours to write a novel length book would cost me as an author about 3300 dollars (as I'm unlikely to get paid any more than ontario minimum wage if I get a second job), which would more likely be 2500 after taxes.
That's 2500 dollars for a book you could publish. Worst case, self-pub an eBook on Lulu at $0.99 with their 50% royalty rate and you'll only have to sell to 5,000 people to break even. If you actually sold the book, you're likely to see between $2,500 to $5,000 for a first-time advance at a genre imprint, which means break-even or profit from the get go.
Break even for a movie is in the millions of dollars. Survivability for most TV shows is in the millions of viewers.
There's such naivety, yes traditional publishing sales have diminished and hasn't been immediately translated into eBook sales of the same figures (no shit sherlock the books cost a lot less, meaning there'll actually be market for more books for the same dollar value). In the 1940's 60% of the US population went to the cinema weekly. Since the late 1960's it has been steady at 10%. IIRC Nielson reported a 6% decline in TV viewership between 18-34's during the 2010 summer months.
Markets change, which is a fact of the free economy. The written word isn't going to die off because the paperback declines. Video isn't going to die off just because we stop going to the cinema or watching TV.
Just look at webcomics and the dozens of artists who are self-sufficient because of it. Look at Mike and Jerry of Penny Arcade, they employ eight people besides themselves because of a webcomic and this is before the traditional medium (comic books) are seeing the kind of declines that newspaper comics are.
I don't think they do. Print journalists compete directly with the 6am/12pm/5pm/10pm news on radio and TV in that they're providing exactly the same material.
That's the case for the news journalists but not for the specialist media which I'd suspect employs rather more. I know I don't buy IT magazines any more because websites do the job better; I can see other fields heading in the same direction, and you're then competing against fan blogs with vastly lower costs.
Patent attorney at link below explains why this stick patent is useless in addition to being silly. He also notes that it is no longer held because the "inventor" failed failed to pay a fee.
Those who are blaming the victim here illustrate the problem perfectly: some of them either do or will get to run their own businesses and their screw-the-guy-he-didn't-read-the-fine-print attitudes will surely result in similar customer experiences. And business failures.
A fascinating inside look but the guy is far too quick to excuse his leading role in what is unquestionably an unethical enterprise. Drug dealers, too, say they're just fulfilling a demand that someone is going to fulfill ... and they show equal contempt for their customers.
Something else in common with drug dealers: if you tossed this guy in jail, someone else would move happily in to fill his niche. Prohibition does not, has not, and will never work.
There is a major difference between "there are some sucky parts that I do because they enable me to do this awesomeness, and those are called work" and "it's work, it sucks and is not fun". I have never held a job I feel the latter about (well for more than a month anyway), yet I do pretty darned well for myself.
I like the camera idea. It would probably work just as well if the unauthorized user merely believed a picture was being taken; just have a pop-up message saying so before the transaction is finalized and skip the picture altogether.
Wouldn't any halfway smart person cover the camera?
Just saying that a confirmation email will be sent is likely not much less effective than a camera - in either case, the owner will find out that someone did something nasty.
Agreed - We just need more devices with front facing cameras - which definitely will happen. Add the fact that location/time data could captured associated with it as well and it's likely make some people at least think twice!
20 to 30 minutes doesn't seem sufficient to make a big difference, especially if you're not able to drop right off. And exactly where is your typical office worker supposed to take this nap?
Not a day goes by when I don't see some no-name blog or other scraping a post of mine word-for-word. That's plagiarism. Unless there's more to it, this complaint seems entirely without merit.
A troll is someone who is deliberately attempted to derail conversation and waste people's time for his own amusement. A 'peasant' in this guys nomenclature is merely someone who is too opinionated for his own good.
