0 Commentary: 20/20 And Needing A New Focus For Lyme Disease

This past Friday, the ABC program, 20/20, aired a show on medical mysteries. Included in this show were segments on people who fly into a rage at certain sounds (misophonia), eat rocks or other unusual non-food items (pica), and one on a girl with Lyme disease who is speculated by doctors to have developed a condition known as foreign accent syndrome (FAS) due to being coinfected with Bartonella.

While I have sympathy for everyone dealing with such conditions and hope everyone who was interviewed for the show gets better, what I'm about to write isn't about their personal interest stories.

Instead, I want to discuss how the media portrays the strange and unusual case to get higher ratings while other stories and information about tickborne infections are either downplayed or avoided.

On Dr. Phil's show several weeks ago, a young model was interviewed - a photogenic young woman who was having partial seizures and self-medicating to treat her pain. While there is evidence that people with Lyme disease can experience seizures, these cases are considered to be in the minority. In Friday night's 20/20 show, a teenager in high school who contracted Lyme disease and Bartonella was speculated to have developed a condition known as foreign accent syndrome (FAS). This is a documented condition, and while I think more evidence is needed to provide a link between Bartonella as its cause in this instance - FAS is even rarer than seizures are.

These stories are getting aired because the media tends to want to focus on the strange and unusual in order to grab viewers' interest and get ratings. The delivery must generate buzz and be sensational in approach in order to get traffic and fixed stares. And this is exactly what the promos for Dr. Phil's show on the young model, Stephanie, tried to achieve - as well as promos by 20/20's on Elaina, the teenager with FAS.

Most viewers at home seeing these shows are watching it because of the weird factor. They see the promo and want to know more, perhaps with their own internal dialogue of, "Wow, that's weird, I wonder how that happens - and does this really happen or is it just made up?" or, "Gee, that's messed up - glad it's not me. But I'm curious, so I'll watch." Some people just have a thing for watching other people's problems in general, and segments like these appeal to their nature.

For those of us who suffer from a disease that is portrayed on television, the first thing that happens is praise. The initial comments from the Lyme disease patient community are congratulatory. They contain the good cheer of finally getting more recognition for what ails us, those of us who have been suffering with chronic Lyme disease and/or coinfections.

And then, the next round of responses trickle in from other patients - a second wave which is not as cheery as the first and criticizes the shows for picking out one narrow and possibly rare symptom and putting it in the spotlight while the rest remain in the darkness.

Then the real, serious criticism gets rolling in the third wave, which is about how these shows will question the afflicted about the true nature of their condition and whether or not they are "faking it". From the perspective of a number of Lyme disease patients, this criticism could be heard regarding the exchanges about Dr. Phil asking the model if she was faking her condition, and in his not arguing against Dr. Auerwater's position that chronic Lyme disease is not a verifiable condition.

Indignant responses fly. Suddenly, what began as a great show for spreading awareness has become a show where a number of people see the value of airing it - yet admit it fell short of their hopes for letting people know what Lyme disease and coinfections are really like and what impact persisting symptoms have had on people's lives.

People just like them. People just like the guy next door, who was mowing the lawn one week and playing soccer afterwards - and now can't make the walk to his mailbox, let alone get to work.

As I see it, there has to be more of an effort in the media to offer education about what Lyme disease and coinfections are from a scientific perspective, and educate people on the most common symptoms which people will experience. From a personal interest perspective, more people need to see how these conditions affect middle class working adults with children of their own.

With this education, more people would be able to relate to the people on the screen and be willing to look into the possibility that they might have a tickborne infection and seek medical advice and testing. They would at least be alerted to the possibility.

With the edutainment of the strange and unusual offered, there isn't enough there for the viewer to grasp the possibility that they, too, may be suffering from this disease - or to know what signs to look for in the future if they do come down ill with tickborne infections.

If someone sees the story of a patient with partial seizures or FAS, they may shrug off the story and not apply it to their own experience of having joint aches, muscle pain, headaches, and blurred vision, and say to themselves, "Thank god I have fibromyalgia and eye problems and not Lyme disease or Bartonella - this stuff is weird". And maybe their current diagnosis is correct. However, there's a chance it's not. In which case, they are better off having the knowledge so they can decide to investigate another diagnosis.

The strange and unusual won't help viewers relate what they see on the screen to their own situation. Truly spreading awareness means educating people on the symptoms for conditions one is most likely to see. It doesn't mean that there aren't exceptions or that unusual symptoms can't occur. It just means that what most people with a given condition experience what one expects to see and to get based on the majority of cases which have occurred.

One more point about the media's focus and where I think it should be - then I'll go:

Why is it that we can easily find these sensationalized stories about unusual symptoms about Lyme disease - but there's seemingly little television coverage of what seems to be the most costly case of Lyme disease in the country - the Lyme disease contracted by senior banker Ina Drew, who worked at JP Morgan Chase, whose absence from work due to Lyme disease led to those remaining in the office making decisions leading to a $3 billion trading loss?

Yes, you did not misread that. $3 BILLION.

You would think this story would be pretty sensational and the media would put this on 20/20 and other shows right away.

There is the personal cost of Lyme disease to the individual. This the media does well to portray to a certain degree. But then there is the cost to their family, their job, and society as a whole. This has not been portrayed that well. It needs to be.

 Image Credit: Peter Wolber

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2 Looking At Camp Other Blog In A Different Way

I don't know how many of my readers are aware of this feature of  Blogger - not everyone's blog is set up this way, where you can change how you view the content.

Try this link out for fun: http://campother.blogspot.com/view/flipcard
(I don't know if it works on mobile; suspect it's web-only)

Note that you can change the format of the blog entries listed by using the pulldown menu in the upper right corner.

I think "flipcard" and "timeslide" are the two best formats, the other ones are not as interesting or useful.

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5 Google Trends On Lyme Disease

I have been having fun with this specialized search tool on Google called Trends, and also an advanced trend tool, Insights. You might want to give them a try here:

http://www.google.com/trends
http://www.google.com/insights

In particular, I've been looking up "Lyme disease" and "Borrelia burgdorferi" and breaking down the search into different data sets by region.

Check this out...

Between 2005 and 2010,  of all worldwide Google searches related to Lyme disease, these were the top keyword searches made:

Notice that most people worldwide have been interested in knowing about Lyme disease symptoms, ticks, and treatment - with tests weighing in at #9.  Some unfortunate people do not know how to spell  "Lyme disease" properly.

Now, take a look at this... Here is a list of the top ten worldwide keyword searches related to Lyme disease which are on the increase between 2005-2010:

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3 Can a computer more accurately diagnose Lyme disease than a human?

I came across this article earlier today, though so far I haven't seen mention of it in the Lyme disease community. (It was published earlier this month, though, so I might have missed it.)

The article, "Just Months After Jeopardy!, Watson Wows Doctors With Medical Knowledge" is about how a computer can make connections between seemingly unrelated symptoms to determine a patient's diagnosis.

In this case, the following scenario and outcome was presented:

"The trainee was sequentially presented the details of a fictitious patient: there’s an eye problem; vision is blurred; the family, living in Connecticut, has a history of arthritis. The trainee’s initial response was uveitis. More clues and the diagnosis was changed to Behcet’s disease until finally the trainee settled on Lyme disease. How sure was this seemingly hasty student of medicine? Seventy-three percent sure."

One important point to be made about the database-based doctor:

"Following its resounding victory on Jeopardy!, IBM’s Watson has been working hard to learn as much about medicine as it can with a steady diet of medical textbooks and healthcare journals. The mock case described above was part of a recent demonstration to the Associated Press showing just how much Watson has learned. The robot’s diagnosis was correct and it identified a link between symptom and cause that was “not common,” as one participating physician called it. After being told the patient was pregnant and allergic to penicillin, Watson suggested treating her with cefuroxine. Its human colleagues agreed."

A striking statement was made further on about how the amount of medical knowledge available doubles every 5-7 years and doctors struggle to keep up with it. This would definitely make the case for having a medical database at one's disposal to assist with diagnosis, but to me nothing is going to replace observation and good old hands-on examinations for many conditions.

We aren't quite at the level of Star Trek probes, but perhaps we're headed that way in the future.

Read more here, at the following link: http://singularityhub.com/2011/06/06/just-months-after-jeopardy-watson-wows-doctors-with-medical-knowledge/

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4 Video: What The Internet Is Hiding From You

I just watched this video with Eli Pariser, where he talks about what the internet doesn't let you see because it is tailored with you in mind.

This is almost ten minutes of video you don't want to miss, because it talks about how completely different results are shown for two people who are looking up the same keyword.

This means that one person who is interested in Lyme disease and conspiracy theories will get more results that include those two concepts - whereas a person who is interested in Lyme disease and scientific research will get more results that include those two concepts when they type the keywords, "Lyme disease" into their browsers.

It's important to be aware that what you don't see can be as important as - if not more important than - what you are actually seeing online. Anything that makes you uncomfortable, challenges your point of view, or is different may be hidden from you by design.

Watch this video. I think everyone should see it, the message is important whether you are looking up information on Lyme disease, US politics, health care plans, and anything you can think of entering into that little search box at the top of your browser...



How do you fix this?

Google needs to set it up so we have the option to turn filters on and off that involve personalization.

Until then, the wider a variety of different terms you use frequently in searches - including ones that you disagree with - the wider the number of results you are bound to get in return. They'll just get included in your filter by default if you use them often enough - even if you don't read all the results.

If you're liberal and searching for something on politics, put "GOP", "Republican", and "conservative values" into your searches every once in a while. Use "liberal Democrats" "social Democrats", "progressive values" into searches if you're conservative every once in a while. And for good measure, throw in "libertarians", "green politics", and "economy" in with any of those randomly and see what crops up.

You can do the same thing with just about anything to throw off Google's existing filter system, and use different search engines with different data sets just to see how their own internal algorithms work. Consider it your own science experiment in data manipulation - it's better you manipulate your own data than to let someone else do it.

Additional note: The spinning disk in the middle of the screen is a TED issue, if you see it - nothing to do with Camp Other. Keep watching despite it - it's worth the effort and you can see what you need to even with it there.

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4 Top 10 Tips For Doing Your Own Lyme Disease Research

Here are my top 10 tips to share for doing your own Lyme disease research. Pretty simple and straightforward - and if you have any to add, please share in comments below.

1) Use the scientific, Latin terms for everything. You can use common terms, too, but Latin will give you more results and more specific results.

Examples:

Instead of "Lyme disease" use "Borreliosis".
Instead of "Neuro Lyme" use "neuroborreliosis".
Instead of "Lyme bacteria" or "infection" use "Borrelia burgdorferi".

2) Find out which terms microbiologists and scientific researchers use in their own papers and classes and then apply them to your search.

Examples:

Instead of "coinfection" use "polymicrobialism" or "polymicrobial".
Instead of "can't think straight" use "cognitive symptoms".
Instead of "spinal tap" use "lumbar puncture".
Instead of "shooting and burning pains" use "paresthesia".
Etc. - you get the idea.

Look at online and offline medical dictionaries for words that describe your symptoms and plug those into a search engine.

3)  Move your search away from general Google search to Google Scholar. You can get specific results for only scientific papers and patents that way.


4) Whenever you don't understand a term, use Wikipedia for an explanation.

I add a note of caution here: Wikipedia is not always right, though it usually is correct on basic science definitions.

If you aren't sure, double-check by doing a more general search and rely on college and university web sites for definitions. You may want to restrict your domain search to .edu web sites.

5)  Read educational institution web sites in general.

You may be surprised to find out what research is being done now on Lyme disease and coinfections which hasn't been published yet. Bookmark these items and check PubMed for the university name and researcher(s) name(s) periodically, as a paper will eventually be published.

6) Passively collect research information on your own web site or inbox by using RSS feeds.

If you look at the right column of this page and scroll down, you will see a number of Lyme disease and other disease-related and alternative medicine articles that are directly getting posted to this site all the time.

You can do the same with your own web site - or if you don't have a web site - by using an RSS reader or by subscribing to an RSS feed that gets sent to your email address.

This way, research comes to you and you don't have to always go do a search for it.

7) Look at major professional organizations' web sites - even if you may not agree with everything said - at least you will know what's going on.

Read the IDSA's web site periodically and be aware of how they view the issues around Lyme disease and infectious diseases in general. See what the NIH, CDC, and organizations have to say, and even more, dig deeper and look at what people from those organizations say in their research on PubMed and other online publication hubs. Some of what you find may surprise you.

8) Look at major online science web sites geared towards  a more general audience  (not specifically written for professionals) periodically.

Science Daily is a good example of this, and if you look at the bottom of each article, you will often see a link to the original paper or source on which they based their article. Check out the original source for more information - often it leads to finding out about other research the same researchers did on Lyme disease and coinfections.

Also, use the search function in Science Daily to look up terms such as "Lyme disease", "Borrelia", "Babesia" and even "Malaria". You may find interesting articles and older research from their archives this way.

9) Buy microbiology, acarology, and entomology text books for cheap and used at college bookstores which are trying to get rid of all old textbooks, "fire sales",  Amazon.com, and independent used bookstores near you.

While these textbooks can be dated, you might find information in them that could be useful and give you ideas of where to search next. Note that a lot of the basic information on Lyme Borrelia hasn't changed - but there has been a more refined and detailed understanding of what Borrelia is about over time, though, and those details need to be picked up by reading more recently published papers and books. (I say this, stating that a lot of Lyme disease research I see being cited online for and by patients is a bit outdated - we need to update these sites to reflect the state of the science.)

(You can also see if any friends or relatives have some lying around they're willing to lend or give to you.)

10) Search various libraries online, and participate in your local interlibrary loan program.

Can't afford that $500. book on microbiology? See if you can borrow it through your library's interlibrary loan program.

You will usually have a shorter time limit on borrowing books that are in high demand - some books have to be returned in a week. So if you need more time to work on it, ask someone to copy select passages for you from it to make notes on them later after you return the book.

Also, in many areas you can sign up for a program that will allow others to pick up books for you at the library on your behalf if you are housebound and too ill to go out - see if your area has one and sign up if you need it. This is good program to use in general for any material you may want to borrow for your own personal use.

And a bonus, Number 11:

Have a family member, friend, or friend of a friend who is already studying clinical microbiology, molecular biology, and/or genetics (immunology is helpful, too) help you decipher what you don't understand - and to tell you whether or not they think the findings are significant and which questions are not answered by a particular study that would be useful to have answered.

This may be a tricker bit, because not everyone is going to either have the time to respond to your request for help on this or hold the belief that your research is not worth the effort because they may believe that Lyme disease cannot persist and you are wasting your time.

Unfortunately, this is the truth of it - but in the true spirit of scientific inquiry and basically being stubborn, some people may be willing to help you at least a little bit.

My advice here is the less well-known the person is to you, the better it is to keep personal details out of the query. Also, keep your email or discussion brief, polite, and to the point while avoiding discussing the controversy. This is not to invalidate or dismiss your experience - but being said out of practicality and diplomacy: Busy people are more likely to respond to something in an unbiased fashion if you keep it simple and short.

Happy researching!

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34 News: Institute of Medicine Releases Lyme Disease Workshop Summaries

Source link: http://www.iom.edu/Reports/2011/Critical-Needs-and-Gaps-in-Understanding-Prevention-Amelioration-and-Resolution-of-Lyme-and-Other-Tick-Borne-Diseases.aspx?utm_medium=etmail&utm_source=Institute+of+Medicine&utm_campaign=04.20.11+Report+-+Lyme+Disease+%26+Other+Tick-Borne+Diseases&utm_content=New+Reports&utm_term=Media

To read the Workshop Summaries, click on the link at the top and look in the righthand column - you'll see gray buttons that say "Download Report" or "Read Report Online For Free". If you want to download a pdf of the report, you'll need to supply your email address and other info. If you just want to view it online, click "Read Report Online For Free" and there will be no request for personal information.

Once you select "Read Report Online For Free", by the way, you have an opportunity to download a 21 page summary of the report (direct download) by clicking on a link for it on the lefthand column. Otherwise, the full report is 468 pages long.

[CO update: The 21 page summary gives the barest of outlines of what was discussed, along with a list of those who attended - you are much better off reading the 468 page report.]

One thing to note here is that this appears to be a report on what was discussed at the Institute of Medicine (IOM) workshop on tickborne diseases in October 2010 and not a final position piece stating the IOM's consensus on how Lyme disease and tickborne infections should be approached through research, prevention, or treatment.

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0 Research And A Personal Story: Computer scientist researches own Lyme disease

Well, this has been posted elsewhere, but I just had to share it here, too:

Computer scientist researched her own condition, Lyme disease

Source link: http://www.post-gazette.com/pg/11101/1138165-114.stm

Read the above article, and see if you see yourself (or someone you care about) in this woman's shoes. (I know that I can relate to her own search for reliable medical information, that's for sure.)

After much research from many different medical sources, Ms. Mankoff decided to try long-term antibiotics. After 18 months of antibiotic use she could stop treatment and go on to write professional papers, work full time, and do research on how members of the Lyme patient community seek out information on Lyme disease diagnosis, treatment, and support.

There is mention in the Post-Gazette article above that the paper based on her research of the Lyme patient community will be presented at an upcoming conference on computer-human interaction, CHI 2011.

That paper is:

J. Mankoff, K. Kuksenok, J. A. Rode, S. Kiesler & K. Waldman, Competing online viewpoints and models of chronic illness. In Proceedings of CHI 2011. To Appear (Full Paper)

And here is a link to the FULL TEXT (no subscription required):

http://www.cs.cmu.edu/~assist/publications/11MankoffCHI.pdf

If anyone happens to be in the Vancouver area this May 6 and would like to attend the session, it will be from 4:00-5:20 pm. (A link to the conference appears at the bottom of this post.)

A description is as follows:

Session Chair: Julie Kientz (University of Washington)
Competing Online Viewpoints and Models of Chronic Illness - Paper

Session Chair: Julie Kientz (University of Washington)
Competing Online Viewpoints and Models of Chronic Illness - Paper
Jennifer Mankoff Carnegie Mellon University,
Kateryna Kuksenok University of Washington,
Sara Kiesler Carnegie Mellon,
Jennifer A. Rode Drexel University,
Kelly Waldman Duke

Abstract »

People with chronic health problems use online resources to understand and manage their condition, but many such resources can present competing and confusing viewpoints. We surveyed and interviewed with people experiencing prolonged symptoms after a Lyme disease diagnosis. We explore how competing viewpoints in online content affect participants’ understanding of their disease. Our results illustrate how chronically ill people search for information and support, and work to help others over time. Participant identity and beliefs about their illness evolved, and this led many to take on new roles, creating content and advising others who were sick. What we learned about online content creation suggests a need for designs that support this journey and engage with complex issues surrounding online health resources.


If you wish to attend CHI 2011 for only a day session on site, you must be warned that registration is steep:
http://chi2011.org/attending/registration.html

If you can't make it to Vancouver and pay for admission, consider sitting at home, reading the pdf of the paper above, and emailing Ms. Mankoff with comments and questions.

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17 Video: Shortcuts To Learning Immunology

I realize I posted a 14 part mini-series on Immunology not long ago and know that could be a bit much to bite off at once in order to learn more about the immune system.

So I've been spending time looking for shortcuts - ways for readers to quickly get up to speed on some of the terms and processes used when discussing the immune system.

I figure videos usually are the best way to begin learning for many people - so I have been watching them on Youtube to decide what to post here.

Let me just say that as entertaining as some of them are, I wish more of them were factually correct or just had more educational content in them.

I love the idea of using battle scenes from The Lord of the Rings movies as an analogy for the immune system - some creative guy did this, and it was hilarious. But most of it had no mention of the immune system or how it worked, beyond "the good guys are these immune cells, and the orcs are the invading pathogens". And then there was the guy who went so far as to make a 1950's style documentary on angry macrophages, with retro props and a fake ad for Solomon cigarettes... this documentary compared pathogens to invading Communists.

Unique. Original. Points for style. And yet, next to no substance.

What could have been both an entertaining and educational clip ended up an abysmal failure. C'mon guys, you can do better.


Anyway, I found what I hope are some of the better videos on Youtube that you can watch to learn more about the immune system, and the material on the first one will help you advance to the next video. Also, each video reinforces what you've seen in an earlier one - it helps familiarize you with the terms and concepts used.

Let me know if you have any trouble following these. For those of you who are already more advanced students of immunology and have gotten past all of this, I will be posting more intermediate and advanced videos on the immune system later. (Those who have watched these basic and intermediate videos first will be able to move on to the advanced section, which will mention toll-like receptors and interleukins.)

If you are a more advanced student and already understand those, then I would like to encourage you to comment more here and perhaps start your own blog to let people know more about the science of the immune system and infectious diseases like Lyme disease.

Knowing more about the immune system opens the door to understanding research out there done by the IDSA guidelines panel, scientific researchers in microbiology and molecular biology outside of the IDSA panel, the statements LLMDs have made about Lyme disease and its treatment, and claims other Lyme patients have made online.

Okay, without further delay, here are four videos which may prove useful for beginners - each under 10 minutes:

Immunology Overview [Time: 4:42] - overview of basic parts and terms of the immune system

The Immune System [Time: 9:36] - Basic explanation of the immune system and how it works.

Immune System, Part 1 [Time: 7:59] - Barriers and Non-Specific Defenses
Note that this video is accompanied by this easy to view PDF:
http://www.kirkwood.edu/pdf/uploaded/695/immune_and_lymphatic2.pdf

The Immune Response (Garland Science) [Time: 1:43]

That should be good to get you started.

Note that each one has slightly different information about the immune system, but the core material is the same. Being exposed to this information in different ways over time makes it easier to learn.

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1 Part 1: The Value Of Anecdotal Evidence

A few people have asked me in email about why anecdotal evidence is not something that the scientific community tends to accept, and one person even went so far as to say it was stupid to ignore the stories that Lyme disease patients share about their experiences and how certain patients respond to different treatments.

After all, anecdotes are based on real life experiences - and it is possible that a treatment does in fact work and someone's personal experience may be the first indication that there is something meaningful happening - either an improvement in symptoms or a step closer to a cure.

Is ancedotal evidence ever acceptable in scientific research and in professional healthcare? Why or why not?

I'd have to say that in general, it's acceptable on two counts:

1) Cases. When anecdotes are documented very carefully, they are called case reports or a case series. These case reports or case series are about individual patients and doctors' experience in treating them, and their treatment is not part of a controlled experiment. But careful documentation over time of patients' treatments, symptom changes, test results, and other findings at least ensures that information is recorded as events and changes unfold and also can demonstrate other variables which may have led to the patients' conditions (preexisting conditions, addition of new medications, insomnia, etc.).

2) As a means for a starting point for future research. If enough case reports or case series are completed that are pointing to a useful treatment or cure, then this can be used to develop and design controlled studies that can ensure that treatment is specifically helping improve certain symptoms or cure patients. Controlled studies help reduce or eliminate variables which may cloud or muddy the issue of what is or isn't changing patients' conditions, which is why they get more weight as a valid scientific approach than anecdote does.

Under both of these conditions, the information would have to be scrupulously maintained and recorded by someone who is reporting honestly about patients' conditions and their treatments.

Now that these two conditions are defined, what other conditions make anecdotal evidence less acceptable to a scientist who is trying to learn the truth about whether or not a treatment is effective in reducing symptoms or curing a condition?

In a way, we can think back to what I wrote about tomatoes in a comment a little while ago.

Two centuries ago, people in North America and parts of Europe did not make tomato sauce. Pizza as we know it was yet to be invented. The reason was because no one would eat tomatoes, as they were members of the nightshade family and it was believed they were poisonous.

Somewhere along the line, someone must have gotten up the nerve to be the first person to eat a tomato and discover after eating it that they weren't dead. From there, perhaps they went on to discover the joy of fresh salads with tomato, tomatoes roasted over an open fire, and other tomato-based dishes before others began slowly adopting the tomato as an edible item.

That first person could be thought of as brave, stupid, or both. In retrospect, though, most people just eat their spaghetti today without much thought about how people got around to eating it. If that person had been wrong, we would all be sitting around here with more fettucini alfredo than we knew what to do with.

But here's the thing:

What if the first person had gotten sick after eating that first tomato, and lived to tell about it? Maybe people would look at their experience and still regard the tomato as something less than fatal if consumed - but still something toxic and bad to eat. And then they would have been wrong, without knowing what the whole story was.

One of the first flaws in using anecdotal evidence is not being able to consider all the variables that affect one's condition and the outcome. In order for anecdotal evidence to have more value, other variables must be eliminated to make sure of the truth.

Looking at the problem of the tomato and the first person who got sick after eating it, one can come up with the following basic question:

How can you be so sure it was a toxin in the tomato that caused their symptoms?

They could have done any of the following:

• Eaten a bad piece of fish an hour before they ate the tomato, and the fish really made them sick.
• Contracted a stomach flu or virus from their next door neighbor, and that made them sick.
• Eaten an insect that was within the tomato that didn't agree with them.
• Had a small amount of mold or fungus on the tomato that didn't agree with them.
• Been unlucky enough to eat a tomato that was a bad tomato - not ripe enough, or somewhat overripe; perhaps bordering on rotten.
• Had an allergic reaction to the tomato itself.
• Had a medical condition that was completely unrelated to anything they ate or a passing viral infection.

So, one can think of a number of reasons why someone could have eaten a tomato and got ill afterwards - but each of these reasons has nothing to do with the tomato itself being a toxic food.

Without knowing any of these potential reasons, from external observation, one could be led to follow simple cause and effect, where the person observed to have eaten the tomato got sick shortly thereafter and everyone assumed during that time that toxins in the tomato was the reason why.

Well, you know what they say: Never assume, because then you make an...

Anyway, eventually someone else probably heard that others enjoyed eating tomatoes in other countries and lived quite long and fruitful lives despite this, and tried eating a tomato and didn't have any problems. Once enough people began eating tomatoes and not puking their guts out or dropping like flies, then more people felt willing to try eating them - even if they might later turned out to have had a serious allergy to them, at worst - or decided they just didn't like them, at best.

In the end,  most people on the planet have had the experience of eating a tomato by now and most of them don't get horribly ill from consuming them.

It might have taken a while to build up enough anecdotal evidence to convince people that tomatoes were safe to eat. After all, people were convinced for a long time that they were poisonous, and any of the above issues listed may have led to people getting ill around the eating of a tomato. It was probably clearer tomatoes were okay if the people eating them weren't also coming down with the stomach 'flu', washed their tomato before eating it, and they hadn't eaten anything else all day.

So, tomatoes are, by and large, safe to eat - and many would say they're quite tasty, too. (I do.)

Let's talk about ancedotal evidence using the tomato in another way, though - by making a claim.


What if a person were to say, "I feel so much better after eating this tomato," or even "Symptom x has improved ever since I ate a tomato."

Well, I admit that many times after I've eaten a tomato, I feel better, too - but usually it's because I've been starving and finally had something to eat. And it was tasty. And filling. Which brings me a certain amount of emotional and physical satisfaction.

But once I begin saying something as specific as, "Symptom x has improved ever since I ate a tomato", well, then that provokes a question in response to that claim:

How can you be so sure it was the tomato that caused symptom x to improve?

The person who ate the tomato could have done any of the following or had them happen to them:

• Had a temporary improvement in that symptom based on the usual ups and downs of their condition.
• Had a lasting improvement that occurred for reasons unknown to anyone.
• Experienced an improvement due to some medication they'd already been taking over time, and just noticed a distinct improvement after eating the tomato.
• Experienced an improvement due to some medication they'd started recently.
• Experienced an improvement due to some other supplement or food they'd been consuming over time, and just noticed a distinct improvement after eating the tomato.
• Experienced an improvement due to some other supplement or food they'd started consuming recently.
• Experienced improvement because of their frame of mind - belief in the tomato making them feel better actually led to them feeling better. (Also known as the placebo effect.)

And of course, it is possible that symptom x really did improve because they ate that tomato, but then: How would you know?

The only way you could know for certain would be to eliminate all the other variables as much as one possibly could, and test it. Find some way to measure the improvement in symptom x in that person, and eliminate the other variables - then go on to repeat that experiment with a larger group of people.

To be sure that it is the tomato that is leading to symptom improvement, the highest test of the tomato-causes-symptom-x-improvement-hypothesis is to give a fairly homogenous group of people with symptom x (where the above variables are eliminated) a tomato and measure improvement in symptom x post-consumption, and to give another fairly homogeous group of people with symptom x (where the above variables are eliminated) a non-tomato placebo that looks and tastes like a tomato and measure improvement in symptom x post-consumption of that placebo.

Next, don't tell which group has the real tomatoes and which group has the fake or placebo tomatoes. Better yet: Don't even tell the scientists running the experiment who has the real tomatoes and the fake ones, either. That way, when scientists come around to record data from the patients, they can't accidentally let slip in conversation or body language whether or not the patients in front of them are consuming the real tomatoes or the fake ones. They don't know anything about it. So they can't influence the outcome much.

This is what double blind studies are all about - and with them, it's supposed to be easier to obtain more reliable evidence that a particular treatment works (or not).

One of the problems with discussion of improvement of subjective symptoms - such as reporting "I feel better", or "symptom x is better", is that they do not make good outcome measures.

How do you measure them? Where do you draw a line in the sand between, say, pain that is a 6 out of 10 in one person compared to pain that is a 6 out of 10 in the next? What does '5' mean? (Ask Allie - she'll tell you what she thinks it means.) Does one person count having a runny nose as having a cold? If that person takes some Vitamin C, thinking it will help them avoid colds, they might dismiss their runny nose and report (and even remember) that they did not get any colds while taking the treatment.

One thing scientists have said all along is this: The plural of anecdote is anecdotes - not data. 

One has to come up with a well-defined set of criteria that can be consistently measured across a larger population in studies, and subjective reporting is often a problem given the examples above.

So, knowing all of this, what is the person who has already tried all of the tried-and-true, scientifically-studied treatments going to do?

What if one is a Lyme disease (and other tickborne infections) patient and has already blown through a number of antibiotics and is still symptomatic?

These questions and more will be addressed in part 2.

This work by Camp Other is licensed under a Creative Commons
Attribution-NonCommercial-ShareAlike 3.0 Unported License.

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0 Quote on gathering knowledge and decision making

"Anyone who has a lot of information, thinks a lot, and by thinking increases his understanding of a situation, will have not less, but more trouble coming to a clear decision. To the ignorant, the world looks simple. ...Once we gather a little information, however, we run into trouble. We ... become more acutely aware [of] what we don’t know. This probably explains why we find so few scientists and scholars among politicians. It probably also explains why organizations tend to separate their information-gathering and decision-making branches. ... to provide decision-makers with only the bare outlines of all the available information so that they will not be hobbled by excessive detail when they are obliged to render decisions." 

Dietrich Dorner, The Logic of Failure, 1988

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