A Few Words...

What is written here is my opinion and personal experience only. I am not qualified to give advice - medical, legal, or otherwise. Please be responsible and do your own research regarding treatments, diets, doctors, and alternative therapies.

Thursday, June 4, 2015

Evaluating Scientific Claims

As an oncology dietitian, it is an integral part of my job to help my patients navigate nutrition and dietary supplement claims they come across through a variety of resources.  While some alternative and complementary therapies have a very low risk of harm and can provide some relief, some can actually be quite dangerous.  Differentiating between something that is safe and effective, safe and not effective, and downright risky can be a daunting task, especially for someone without scientific training.

To make matters worse, anecdotal claims or treatments promoted by (dubious) physicians or others with medical or healthcare credentials can sound so promising, especially when conventional medicine isn't meeting the all of the expectations and needs of the sufferer.  As those of us with Meniere's know, this phenomenon is not limited to cancer patients.

I will be giving a presentation in August on just this subject and will share my slides with you all then.  But in the meantime, consider the following guidelines when evaluating claims regarding treatments and supplements promoted as therapies for Meniere's disease.

It is not lost on me that by promoting cautious evaluation of scientific-sounding claims, that I might be called a hypocrite due to having sought out and chosen to take part in a treatment which is not yet widely known or accepted as standard medical practice in the management of Meniere's disease.  However, between my own training and background, that of my husband, and some of our friends and colleagues, we have been able to sufficiently evaluate and extrapolate from the existing data enough information to form a positive opinion of this treatment option.  And it's this same standard which I encourage others to apply to claims being made for the use of any other particular treatment or dietary supplement.

Sorting out Sources: Guidelines for EvaluatingScientific Information

The goal of this page is to help you evaluate information, specifically scientific information.  This skill is critical not only when conducting research using the internet or traditional print media, but also in helping you sort out claims you may encounter in your daily life.

Be aware of ‘pseudoscience’ (‘false-science’).  Pseudoscientists make claims that may appear scientific, but don’t follow scientific principles.  Distinguishing between science and pseudoscience can be difficult.  When trying to discern whether something is scientific, check the following:

INTEREST

Who is funding the research and who may profit from it?
Biased organizations may give themselves neutral-sounding names.  An organization will often have an interest in the outcome of a study they are funding.

AUTHOR and PUBLISHER

Who conducted the research? Where was it done? Where was it published?
Look at the background of the people involved in the research, if possible. What kind of training have they had? Have they done extensive research in the field? Have they published other papers on the topic? Do others frequently cite them? Was the work conducted at an established facility, which could provide the support necessary to conduct thorough research?

Scientists publish their results in peer-reviewed journals so that others in the same field can critically evaluate their work.  View with suspicion any discoveries that are ‘secret’ or rely on ‘secret formulas’. Results that have been originally published in journals such as Science, Nature, the New England Journal of Medicine, etc. will have been examined more closely, and are therefore are more reliable, than those that are directly announced to the media.

HYPOTHESES

Are hypotheses testable and capable of being falsified?
Hypotheses and theories (even those which cannot be tested directly) should be able to be used to make predictions and allow the collection of evidence to test those predictions.  Often pseudoscientific claims can’t be proven wrong by any possible evidence.  For example, there is no way to disprove the claim that only someone with special powers can sense a certain phenomenon.

There is a large body of knowledge in science that is not influenced by trends in public opinion and is not likely to change.  However, scientific ideas should be capable of changing should new evidence arise. In contrast, ideas in pseudoscience either stay the same (if there is an unchanging idea behind them) or change randomly (if criteria for accepting ideas and rejecting others do not exist).

PROCEDURE

1. Are experiments repeatable? Have they been repeated?
Experimental procedures are reported so that others may repeat them. Valid results can be reproduced by others.  Check to see that there has been more than one study, and that the studies support past research.  One single study may produce results that other studies can’t repeat.  The more independent studies that exist which can support a claim, the more likely it is to be true.

2. Are specific, well-defined predictions made?
Scientists use careful, precise language and make quantitative predictions if possible. Pseudoscientists use vague and imprecise terms that can be interpreted in many different ways, such as the language used in many horoscopes.

3. Are appropriate controls used?
If a drug is being tested, for example, scientists compare an experimental group (getting the treatment) with a control group (not receiving the treatment).

Controls (which should be identical to the experimental group except for the factor being tested) ensure that results are due to the drug itself and not some other factor.  Test subjects should be randomly assigned to either group (‘randomized’). Blind studies (subjects don’t know which group they are in) and double-blind studies (neither subjects nor researchers know which group subjects are in) provide additional safeguards.

4. Was a representative sample used?  Was it large enough? Were enough trials done?
Scientists use samples that represent larger groups.  If only men were used in a study, claims about how the study applies to women would be suspect.

Pseudoscientific or unproven claims will rely on case histories, anecdotal evidence, or personal testimonials (Jane lost 30 lbs. in two weeks with Slim-X!)  While case studies might be a starting point for future research, scientists require many trials combined with statistical analysis in order to evaluate their claims.  Furthermore, ethical scientists wouldn’t reveal the names of people involved in tests.

Sometimes, a statistical claim may be made without reference to the sample size (‘3 out of 4 dentists surveyed’…but how many were surveyed?)  The larger the sample size, and the longer the study lasted, the more confident scientists are about their results

RESULTS

1. Were the results statistically significant?
‘Statistical significance’ measures how often a particular result would occur due to chance alone, assuming that the experiment were repeated many times.  The convention is to say that results are statistically significant if there is a 5% probability or less that the results were due to chance alone.

2. Are logic and statistical analysis used to help distinguish between coincidence (chance), correlation (association), and causation?
Correlation and causation are commonly confused with each other.  For example, ‘people who exercise have a lower risk of heart attack’ is a statement of correlation, but ‘exercise lowers the risk of heart attack’’ is a statement of causation.

It is very hard to prove causation (that A causes B).  In order to do so, one needs to show that A must always be present for B to occur, and that B will always occur when A is present (‘A is both necessary and sufficient cause of B’). An example of how this can be done in science is the use of Koch’s postulates for determining whether a microorganism causes a particular disease:

The organism must be associated with every case of the disease
A pure culture of the organism must be able to be grown outside the body
When introduced into a healthy subject, the pure culture of the organism must cause the disease to occur.
The organism must be recovered from the subject and cultured again.
Because of limits on time, funding, or because of ethical considerations, often the best that can be done is to evaluate a relationship using logic and laws of probability.

When looking for a cause of an illness, scientists would look for large differences between people who had and didn’t have exposure to a suspected cause. They would check to see that those differences are present between groups that would otherwise be at similar risk for developing an illness. Scientists would also check that a logical reason for a suspected relationship exists.

3. Are new ideas or results viewed critically and with skepticism?
Scientists should ideally presume a new idea wrong until it is well supported with evidence.

Pseudoscientists aren’t skeptical of their own results, but are skeptical of the results of others.

Types of Arguments and Persuasive Devices

Certain techniques are commonly used to attempt to convince the reader of the validity of an argument.  Be aware of some of these techniques when you are evaluating a source.

The following types of arguments are discussed in What Science is and How it Works, by Gordon Derry:

1. Straw Man
An argument directed not at someone’s actual position, but at a weaker version (the ‘straw man’) created by the opponent. This weaker version would seem, for example, illogical or irrelevant.

2. Ad Hominem (‘to the man’)
An argument directed at an individual, rather than the individual’s position.  The person themselves is attacked, rather than the evidence or the logic of their argument.

3. False Dilemma
Two choices are proposed, and one of these is more easily attacked.  This leaves the other choice as the only obvious possibility.  However, in reality there may be many other alternatives or complexities which are not addressed.

4. Begging the Question
This type of argument (also called ‘circular reasoning’) assumes the truth of its conclusions as part of the reasoning leading up to the conclusion.

5. Slippery Slope
An argument in which the position argued against is depicted to result in something terrible. The terrible result is then argued against, rather than the position itself.

The following types of persuasive devices are described in Forests: Identifying Propaganda Techniques, by Anderson and Buggey:

6. Bandwagon
‘Everyone else is doing it.’ This technique takes advantage of the desire of many people to feel as though they belong to a group.  The argument is that if most people believe a certain way, then the reader should also feel that way.

7. Slanted Words or Phrases
In this technique, emotionally charged or biased words are used to convince the reader of a certain position (contrast ‘mature citizen’ with ‘old fogy’).

8. Scare Tactics
This technique tries to scare the reader into siding with a particular position. The argument is evaluated on the basis of emotion (fear) rather than logic and reason.

REFERENCES

Aaseng, Nathan. Science vs. Pseudoscience. New York: Franklin Watts, 1994.

American Cancer Society: ACS Newsstand, Interpreting the Science in Scientific Studies (1997), http://www.cancer.org/media/1mar4.html (accessed 7/5/97).

Anderson, Robert, and JoAnne Buggey. Forests: Identifying Propaganda Techniques. San Diego, CA: Greenhaven Press, Inc., 1992.

Arthritis:  Unproven Remedies, Arthritis Foundation, Atlanta, Georgia, 1987.

Derry, Gregory. What Science is and How it Works. Princeton, NJ: Princeton University Press, 1999.

Park, Robert. "Voodoo Science: the road from foolishness to fraud," Oxford University Press, 2000.

Weiss, Noel S. "Distinguishing Cause From Coincidence", Alaska Airlines/Horizon Air Magazines July 1993.

Special thanks to:

Cynthia McClellan, Steve Collins, Nancy Hutchison,
Karen Peterson, Diane Rosman, and Dave Vannet.


Money and Meniere's

Glenn over at Mind Over Meniere's has outdone himself with this post.  He has put together a pretty creative list of ways people disabled with MD might be able to bring in some cash.  For ease of reading, I've copied and pasted the article below. But please considering going directly to the page and subscribing to up-dates.

10 Ways to Make Money From Home with a Chronic Illness

Posted by Glenn


Chronic illness can take so much from so many of us.

We march along enjoying our lives, families, hobbies, passions, and work, until one day, the unthinkable happens. Disaster strikes and you quickly find yourself in an entirely new reality. One where you are suddenly dependent on others and you must be willing to ask for help. The simple chores of daily life become mountains to climb.

But often, the most challenging obstacle is losing the ability to work and provide for yourself and your family. We spend so much of our lives working that it can come to define you. Sometimes, it’s not just a loss of income, but the loss of purpose as well. I know how devastating this can be.

But when your world is turned upside down, it’s important to never lose hope. There are ALWAYS opportunities available; you just have to know where to look.

Regardless of your limitations, there are many ways to generate income, even when you’re stuck at home. With a little bit of effort and creativity, you can find fulfilling work and start making money again.

Here are 10 ways you can start earning money today:

1) Rent out a room in your home:
If you have an extra bedroom in your house, you can rent it out to travelers on Airbnb.com. If you have never heard of it, Airbnb is a website that connects travelers who are looking for a place to stay with people who want to rent out their entire home or just an extra room. It’s a great way to generate extra income and meet some interesting people. Through Airbnb, people can reserve your extra bedroom, just like they would book a hotel room. You can sign up and start today!

2) Rent out your car:
If you are stuck at home and unable to drive, you can easily rent out your car with Relayrides.com. It works just like Airbnb, except you are renting out your car. The service is available in every state across the US except for New York. Plus they offer a $1 million liability insurance policy to keep you covered in case of an accident. You set the price and availability, and Relayrides takes care of the rest.

3) Hire your friends to drive your car with Uber:
Another way to make money with your car is to hire your friends to drive your car for Uber.com. Uber is an innovative company that enables people to make money by driving their car as a taxi. Drivers sign up, and can work anytime they want, simply by launching the Uber app (Android) (IPhone) on their smartphone. Uber connects their drivers with people nearby who need a ride and handles the entire transaction. If you can’t drive yourself, you can hire a friend to drive for Uber with your car and split the earnings. (You will need to add your friend/family member to the insurance policy for your car)

4) Make money watching other people’s pets:
If you still have some degree of mobility, you can make money by dog sitting from your home. Rover.com and Dogvacay.com are two great websites that connect you with people who need pet sitters. If you love animals, this can be an entertaining way to make extra money. Like all of the other companies listed above, both Rover.com and Dogvacay.com handle the entire transaction. Simply sign up, list your availability and you’re all set.

5) Rent out your driveway as a parking spot:
If you live in a big city, near an airport or train station, or near a tourist attraction, you can make money by renting out your garage, driveway, or parking spot to travelers who need a place to park. You won’t make as much money as the other methods listed here, but if you have the space it may worth it. Remember every little bit adds up. You can list your parking spot for rent on JustPark.com and ParkingSpotter.com.

6) Make money buying and selling on Craigslist:
Craigslist.com is an online classifieds page and a great way to buy and sell things locally. If you happen to be a collector or know a lot about a specific type of product, you can make money through craigslist. By finding undervalued products and getting a great deal, you can turn around and resell those products for a profit. Think of your hobbies. Are there things you know a lot about? Maybe you know a lot about baseball cards or vintage record albums. The more you know about a specific type of product, the better you will be at spotting these deals. Sometimes, people even give stuff away for free on Craigslist. It takes time but if you have a good eye for spotting deals, you can make a lot of money on Craigslist.com.

7) Become a paid consultant:
If you were successful in business and think you can help others in the same line of work be successful too, you can make money as a paid consultant. Clarity.fm is a relatively new platform that connects experts with business owners and entrepreneurs who need advice. When you sign up, you set a per-minute price, and through the app, people will be able to call you and consult with you. If you are knowledgeable, it can be a lucrative opportunity.

8) Become a Freelancer and sell your skills online:
If you have ever held a job at any point in your life, odds are you were being paid to put a skill to work. Through websites like Upwork.com, and Fiverr.com, you can sell your skills as a service. All three of these websites connect people who need work completed with the people who have the skills to do the work.

Can you write well? Maybe you are good at editing and proofreading. Maybe you can build websites or do graphic design. If you can do something well, you will most likely be able to offer it as a service to someone else. Some other common examples are creating PowerPoint presentations, translating documents, computer programming, and much more. You can also become a virtual assistant and help people complete various tasks.

9) Write an EBook and sell it through Amazon
Have you ever thought to yourself that you should write a book? Well, it’s easier now than ever before! Thanks to Amazon, you can now self-publish an EBook quickly and easily through Amazon’s Kindle Direct Publishing website. Within 24 hours of publishing your manuscript, you can have your book for sale in the Amazon Kindle store and start earning royalties.

You can even offer a paperback version through another Amazon owned company called Createspace. After you upload your manuscript to Createspace, people will be able to buy a paperback version of your book on Amazon as well. After each order, a copy of your book is printed on demand, shipped to the customer and you get paid a royalty!

You don’t need to write a long book either. A 10,000 – 15,000 word EBook (this translates to a 30-50 page book) can sell amazingly well on Amazon. To put it in perspective, this article is 1,428 words long. The trick is to plan out your idea and write a little bit each day. If you can write 300 words every day, you can finish your book in a month or two.

10) Teach a course online:
You can make a lot of money by creating a class and teaching students all over the world through websites like Udemy.com and Skillshare.com. If you are good at something and think you can teach it to others, this can be a fun and exciting way to generate money. Not to mention, if you can build a great course and a following of students, you can easily sell your students other courses in the future. Take a few minutes and browse the courses offered for sale. It will give you some ideas for courses you may be able to offer yourself!

Conclusion:
If you have been forced out of your job by your chronic illness, it’s a devastating blow, but you still have options. These 10 ideas are a good way to start making money again, but by no means an all-inclusive list. There are more opportunities to make money than ever before and the gatekeepers are gone.

So give these ideas a try! Even if you are still able to work, these opportunities are a great way to generate some extra income on the side.

There is always so much hope. Your chronic illness cannot and will not ever be bigger than your dreams. I wish you the best of luck!

Monday, June 1, 2015

Status Up-Date: Still Well!

I've had a few requests lately for an up-date on my health since starting the Stephen Spring Treatment Protocol (SSTP*).  As of June 11, 2015, I will have been on the treatment for exactly 21 months.

The first 3 months of this treatment were significant only for faster than usual cycling between my usual episodes.  Symptoms during this time were otherwise the same as they had been in the years before I started this, which included severe brain fog, frequent intense disequilibrium, chronic intense fatigue, roaring tinnitus, and vertigo or near-vertigo depending on my limited response to various treatments I had tried up to that point (IT dex, IT gent, antivirals, and allergy shots to name a few).

Between months 3 and 6, I began to notice periods of feeling well which lasted weeks rather than the usual few days.  Symptoms during my episodes were also becoming less intense and shorter.  Amazingly, the episodes started resolving without the occurrence of vertigo or near-vertigo attacks.  That was a first-ever after almost 5 years of vertigo or near-vertigo punctuating my attacks.

During this time, my hearing also improved significantly.  To better illustrate what I mean, my speech discrimination had been consistently declining and hovered between 55%-65% between January 2011 and October 2012.  In January, 2013 it had fallen to 20%!  It had crept back up to 40% a couple of months later and again hovered there.  I started this treatment in September, 2013 and one month later I happened to have a hearing test scheduled and found the results of the speech discrim then were 75% .  Three months later they bounced up to 95%, a level I had not had since the first months after diagnosis in 2009.  Today I still use my hearing aid because in real world settings the tinnitus interferes with my speech discrim.  I would guess that currently, if I had a professional audiogram, that my speech discrim would probably be consistently greater than 80-85%.  I want to say that not everyone I have spoken to on this treatment has had nearly the improvements in hearing that I have had.  I don't know why, but it seems most people are not reporting such drastic hearing improvements.  Though some have observed more conservative improvement.

By the 6th month of treatment, I had developed a whole new symptom which were these short, intense bursts of dizziness.  They were not preceded by aural pressure, changes in tinnitus, brain fog, or generalized fatigue as my dizziness and vertigo had been before.  They would just happen out of the blue maybe 3 to 6 times per day.  Once I realized they would not turn into full-blown vertigo episodes, I learned to live with them  The best explanation for these was they were probably a result of the changing shape of my endolymphatic sac and the resetting of the valve of Bast.  By about the 9th month, they disappeared as quickly as they started.

One year into treatment, I continued to have longer periods, maybe 4-6 weeks, of feeling 95% normal.  These would be sandwiched between symptoms of increased tinnitus, mild-ish brain fog, and fatigue lasting 12-72 hours.  As of now, I would say this is pretty much where I remain.

Today I continue to take the vaccine, albeit at a lower dose in the last few months to see if I can sustain the effects.  I work 20-30 hours per week and am able to do all the things I did before Meniere's without fear of an attack.  I make plans and am able to keep them.  Even when I am experiencing symptoms, they are not so severe that I cannot carry out whatever it is I need to do that day.  Yes, some days are still a little rough, but NOTHING like they used to be.

Overall, I don't take any of this for granted.  I don't believe I am cured, only that this treatment has perhaps corrected, or rehabilitated, my immune system enough to minimize the effects that Meniere's disease has on me.

*SSTP is not for everyone.  It requires commitment, dedication, and for some people a leap of faith.  Also, each person's circumstances, length and extent of disease are unique, so the treatment course may vary from person to person.  Some may require additional medical intervention with prescription medications prescribed by their physician.  I neither encourage nor discourage others from seeking more information about it.  It is a deeply personal decision that should be made with the support of your family and your physician.  It is probably wise to attempt to exhaust all conventional treatments and to consider just how disabling your symptoms are for you.  On the other hand, it would seem reasonable to believe that earlier intervention might mean better, more durable results.  Until there can be large, well-designed studies, we won't know the answers to many questions.  While I am happy to answer general questions, it is best to reach out directly to Stephen Spring at stephen_spring@me.com for specific details of the treatment and to determine if it is right for you.


Sunday, May 31, 2015

A Couple of Cool New Tools

Wanted to take a minute to share a couple of neat tools that showed up in this week.

The first is a thought-provoking questionnaire to help assess dizziness which can be found here.  Check it out!

The second is a super-neat, comprehensive, fillable form for tracking Meniere's developed bn blogger, Glenn, over at Mind Over Menieres.  I could post the pdf, but I imagine Glenn would like to generate some traffic to his site and it's well-worth putting an email address in to get this cool tool.