Thoughts on the Sterling Incident

Sterling is a hypocrite and deserved the sanctions placed on him by the NBA. That being said, I believe everyone is a hypocrite to some degree and Sterling is probably the best kind of hypocrite. Millions more are worse hypocrites and will never be exposed.

Sterling was a bigot at home, but in the workplace he tried to make up for his bigotry by being generous to African-Americans and the NAACP. In fact, the NAACP said it could forgive Sterling and still plans on giving him a life time achievement award. Sterling did a better job hiring African-Americans than most NBA owners. But while other NBA owners say all the right things and therefore they will never be thought of as being a bigot - their actions speak louder but nobody calls them out on it. For instance, every professional sports owner says there should be more minority head coaches, but these numbers pale in comparison to the percentage of minorities playing professional sports. But time and time again owners, when given the opportunity, fail to fill these openings with minorities. FYI, Sterling had a minority head coach – Doc Rivers.

In my opinion, Sterling spent his life probably trying to make up for his bigoted thoughts. The closest analogy I can think of in politics is Robert Byrd (former West Virginia Senator and KKK member). Why did so many people forgive Byrd and elect him to the Senate for over 50 years running? Everyone claimed he was trying to make up for his mistake – well I think Sterling was also. The only difference is that in this day and age everyone has a camera and recorder trying to catch people making a mistake.

The worst kind of hypocrite is those that can keep their thoughts to themselves and say the opposite. These hypocrites will never be caught and they are all around us. And I am not just talking about racism.

Obama talks about equal pay for females and calls out corporations, but the White House fails to heed to these words. This is a hypocrite trying to compensate for his hypocrisy (Several books point out the Obama White House workplace is hostile towards women). Of course Obama blames his unequal pay in the White House based on experience, which is the same reason pay is unequal in the corporate world.

Everyone is a hypocrite about something, but we better watch out because it is no longer safe to be one in our own homes.

An Epidemiology Study of BFS (Part IV)

ACKNOWLEDGEMENTS, COMPETING INTERESTS, and FUNDING:

The authors would like to thank our fellow BFS patients for taking part in this survey and study. Due to their participation a decent sample size was obtained for this study and subsequently brought forth pertinent statistical information about the BFS ailment.

The authors received no funding for this work and have no competing interests.

Appendix I

Methods: Study Background

This survey meets human research criteria as outlined by the “Committee on Human Experimentation” and the “Helsinki Declaration of 1975” for the following reasons: 1. The survey was anonymous; 2. The participation in the survey was voluntary; 3. The privacy and confidentiality of the participants is maintained and protected; and 4. Survey participants were notified in advance that results would be shared publicly.

A video example of chronic BFS twitching in the primary author’s lower leg can be found on his website: http://patrickbohan.elementfx.com/BFS.htm. All tabulated data in this paper is original. The survey and subsequent data was not a clinical trial of any kind. However, the survey consisted of control questions to eliminate people from the data analysis who have not met at least two of the following conditions: 1. They have been diagnosed with BFS by a physician; 2. Their symptoms were bad enough to warrant an EMG; and 3. their symptoms were bad enough to warrant a MRI. This eliminates any survey participants who may falsely input responses into the survey and or may not have BFS. Finally, the authors of this paper have no conflicts of interest and therefore, no information to disclose. In fact, the authors are independent and have no affiliation to any university, group, organization, or company what so ever and therefore, received no funding for this project.

Appendix II

Methods: User Groups

The subjects for this study included 438 individuals who have been formally diagnosed with BFS and or had to have an EMG or MRI to rule out more serious ailments. If participants in the survey answered “no” to more than one of the 3 following questions: 1. “Have they been officially diagnosed with BFS?”; 2. “Have they had an EMG?”; and 3. “Have they had an MRI?”; they were omitted from the data analysis. This is the only way to ensure the survey participants have BFS and are not fabricating some response in the survey.

People were contacted via social network forums listed below to participate in the survey:

Facebook: https://www.facebook.com/#!/groups/88467288815/

Internet: http://www.nextination.com/aboutbfs/

It is understood and highly probably people who seek to join social networking sites dealing with medical conditions generally have a chronic condition. If the symptoms were inconsequential or insignificant then why would anyone reach out for assistance? Therefore, this is a study of people with chronic BFS conditions since there are probably very few people in the survey with mild BFS. This may skew results, but treatment is needed for chronic sufferers of BFS and not necessarily for mild sufferers of the syndrome.

Appendix III

Methods: Survey and Data

Information regarding all data gathering and the survey / tools used, is listed below:

A survey was created in Google Docs and can be found at the following link: https://spreadsheets.google.com/spreadsheet/viewform?hl=en_US&authkey=CJvBgaQM&formkey=dElCQkFBRWlvY1ZSTThKTmNsbEg4d0E6MQ#gid=0

The survey will be open indefinitely with the hope to grow the sample size and therefore, better understand the disorder.

The Survey can also be reached from the Author’s BFS webpage: http://patrickbohan.elementfx.com/BFS.htm Click on the link “BFS Survey”.

The data results for the 527 participants (total participation was 527; however, 89 were considered outliers due to not meeting certain criteria for this study) can also be found on my web page: http://patrickbohan.elementfx.com/BFS.htm. Click on the “Survey Data Summary” link. This will open an excel file. The “BFS” and “BFS No Zero” tabs contain the raw survey data with outliers removed (These tabs were used to calculate the statistics within this paper). The “BFS NO” and “BFS No Zero NO” tabs contain the raw survey data with No Outliers excluded. The “Data Summary” tab contains a complete statistical analysis of each variable or question in the survey. The “Statistical Significance 500+” tab contains the statistical significant data between variables (t-statistic data). [8] The “Correlation Results” tab in the excel file contains the correlation data between variables. Only those variables that show high statistical significance are analyzed for correlation. Since the survey data is based on a rank-order system (ordinal data), the Spearman method of correlation is used. [9] This excel file is included as supplementary data with this writing.

Appendix IV

Methods: Data Analysis

The data was first analyzed to determine if outliers exist. Survey participants who had more than 3 responses (data points) outside of plus or minus 3 standard deviations were considered outliers and omitted from the calculation by placing brackets [] around the result in the raw data on the “BFS” tab in the excel file.

Most of the linear regression models generated from the BFS survey have very low adjusted R² values (the results are not linear) and are therefore, not very good models to predict future outcomes. [8] However, t-statistic measurements are a good measure of statistical significance and are also computed during linear regression calculations. T-statistic results with an absolute value greater than 2 designate strong statistical significance between variables (~95% probability). A Spearman correlation study is conducted on those parameters that show high statistical significance. Spearman results can be broken down as follows: +/- 0.5 to +/-1 for strong correlation, +/- 0.3 to+/- 0.5 for moderate correlation, +/- 0.1 to +/-0.3 for weak correlation, and 0 to +/-0.1 for no correlation. [9]

Each question in the survey, e.g., “What is your age?”, “What is your sex?”, “Are you experiencing pins and needles?”, “How well yoga works for you?”, etc., is a variable or parameter (terms used interchangeably in this paper).

When modeling variables using a linear regression model, there are two sets of variables - x and y. In the data result array (on the “Statistical Significance 500+” tab in the excel file) the horizontal axis is for y variables and the vertical axis is for x variables (this is reversed from conventional algebra, but it facilitated getting the data into the table using this reversed format, in this case). Only one variable is allowed for y in a linear regression analysis, but multiple variables can be used for x (as long as there are more equations than unknowns). The data was computed by running each variable (y) against all other 55 variables (x). Hence, the “Statistical Significant 500+” tab in the excel file is a matrix of t-statistic results that is 55 long by 55 wide. The correlation results tab in the excel file has the Spearman correlation results for any t-statistic values greater than the absolute value of 2.

The data on the “BFS” tab was used to model all results except for Remedies. When Remedy parameters were the y variable the excel file tab “BFS No Zero” data was used to model the results. It isn’t necessary to find statistical significance for remedies that people have not tried (a “0” response means people did not try the remedy). Hence, the data within the “BFS No Zero” tab is the same as the data on the “BFS” tab except “0” responses to Remedy questions were omitted from the data. The model results of Remedy parameters using the “BFS No Zero” tab will result in fewer data points (smaller sample size, n) in the model. For this reason, the results from these models, including t-statistic results, may prove to be less conclusive because the data size is in some cases significantly smaller. Hence, when evaluating the data models for Remedy correlation, sample size should be noted. When Remedies are grouped together as the x variables, the data on the “BFS” tab was used to run the models. Only a few people have tried all potential remedies, hence the sample size would only be a single digit number if the “BFS No Zero” tab data was used to model Remedy results as the x variable. Also, Potassium Channel drugs and Acupuncture remedies were removed from the survey data because they had very few responses.

Appendix V

Methods: Sample Size

What is the correct sample size for this survey study? First, we need to determine (estimate) how many people suffer from severe and chronic BFS symptoms (Population Size). Symptoms must be bad enough for a patient to see a neurologist to be officially diagnosed with BFS after possibly having an EMG and or brain MRI performed to rule out ALS and MS. According to the Center for Disease Control about 1 in 10,000 people in the U.S. have ALS and about 1 in 600 people suffer from Parkinson’s disease. At these rates, it means as many as 700,000 people around the globe can have ALS and 12 million people can have Parkinson’s disease. If the rate of chronic BFS is comparable to the rate of ALS and even Parkinson’s disease, the sample size of the survey would need to be at least 384 people to tolerate a 5% error and a 95% confidence level. There are dozens of online calculators available to compute and verify these calculations. Hence, our current sample size of 438 meets this criteria.

REFERENCES:

^[1] Hart I, Maddison P, Newsom-Davis J, Vincent A, et al. Phenotypic Variants of Autoimmune Peripheral Nerve Hyperexcitability, Brain 2002; Vol:125(8),p1887-95.

² Newsom-Davis J, Buckley C, Hart I, et al. Autoimmune Disorders of Neuronal Potassium Channels, Annals of the New York Academy of Science 2003; Vol:998, p202-10.

³ AH Ropper, RH Brown, Adams and Victor's Principles of Neurology, McGraw-Hill 1987; Vol:8,Ch.55, p1277-8

⁴ Blexrud MD, Dr. Windebank AJ, Daube JR, Long Term Follow-up of 121 Patients with Benign Fasciculations; Annals of Neurology 1993; Vol:34(4),p622-5.

⁵ Kincaid JC, Muscle Pain, Fatigue, and Fasciculations, Neurology Clinic 1997; Vol:3:p697-709.

⁶ Dwayne M. Reed MD, Kurland LT, Muscle Fasciculations in a Healthy Population, Arch Neurology 1963; Vol:9,p363-7.

⁷Singh V, Gibson J, McLean B, et al. Fasciculations and cramps: how benign? Report of four cases progressing to ALS; Journal of Neurology 2010; Vol:258(4), p573-8.

⁸ Sarah Boslaugh, Paul Andrew Watters, Statistics in a Nutshell: A Desktop Quick Reference, O’Reilly Media 2008; p179-82.

⁹ Biau DJ, Kerneis S, Porcher R, Statistics in Brief: The Importance of Sample Size in the Planning of and Interpretation of Medical Research, Clin Orthop Relat Res 2008; 466(9):p2282-88.

¹⁰ Hrobjartsson A, Skou AS, Emanuelsson F, et al, Observer bias in randomized clinical trials with binary outcomes; systematic review of trials with both blinded and non-blinded outcome assessors, BMJ 2012; 344:e1119

¹¹ Lo B, Field MJ, "Conflict of Interest in Medical Research, Education, and Practice," Institute of Medicine of the National Academies 2009.

¹² De Vaus DA, Analyzing Social Science Data, Sage Publications 2002; p178-85.

¹³ Razin S, Hayflick L, "Highlights of mycoplasma research—An historical perspective". Biologicals 38 (2) 2010: 183–90. doi:10.1016/j.biologicals.2009.11.008.PMID 20149687

¹⁴ Liewluck T, Klein CJ, Jones LK, “Cramp Fasciculation Syndrome in Patients With and Without Neural Autoantibodies”, Muscle and Nerve; March 2013, Volume 49 Issue 3 pp 351-56

An Epidemiology Study of BFS (Part III)

Statistical Significance, Practical Significance, and Correlation

No survey discussion is complete without talking about statistics. Statistics can be vastly confusing and open to many interpretations. Statistical significance between parameters does not imply practical significance. Sometimes commonsense has to be used to determine practical significance from statistical significance. However, in a complicated survey on a complicated subject (in which we know little about) such as BFS this is hard to decipher. In fact, because we know little about BFS, one could conclude any statistical significance is also practical significance.

High correlation does not imply statistical significance especially if the sample size is small. Conversely, statistical significance may not imply strong correlation, it may only occur because the sample size is large. Hence, it important to report statistical significance, sample size, and correlation, together as one item, to determine practical significance. [12] In this survey, since the sample size is large, the data fails to indicate many instances of strong correlation between various parameters, but mostly weak to moderate correlation – yet this data can be of practical significance. Weak correlation, strong statistical significance, and large sample size is usually better than weak statistical significance, small sample size, and strong correlation. [12] And data from Table 1 through Table 7 indicates most correlation between parameters is of the weak variety. In any event, any correlation weak or strong would be new and helpful information on the subject of BFS.

Mycoplasma

Many people with BFS can point to a trigger that initiated the start of their symptoms. Some of these triggers were an illness (virus), prescription drugs, vaccination, spine injury, exposure to toxins, stress, trauma, exercise, or some other cause. But something has to happen within the body to act as a catalyst to convert these triggers into symptoms. Mycoplasma may be one such catalyst. I am not saying that mycoplasma is the catalyst for all BFS patients, but I do believe it is the reason for some.

According to the National Institute of Health and U.S. National Library for Medicine, mycoplasma is the smallest free living organism and is cross between a virus and bacteria. What differentiates mycoplasma is that they lack a cell wall and that makes them hard to treat because they are resistant to most antibiotics and penicillin. Mycoplasma can lie dormant in the body until another bacteria, virus, stress, or toxin activates the symptomatic phase. Once this occurs mycoplasma multiplies within the cells of our bodies and destroys the cell. Once the host cell is destroyed, symptoms are created by the release of three types of toxins into the bloodstream – Ednocytokines which cause inflammation and pain; Neurocytokines which produce symptoms found in MS, Depression, and anxiety; and Allergens causing allergies.

Most immune systems can fight these organisms; however people with compromised immune systems may develop chronic diseases and infections. Chronic infections implicated with mycoplasma are Rheumatoid arthritis, reactive arthritis, psoriatic arthritis, chronic fatigue syndrome, pneumonia, flu, allergies, fibromyalgia, Gulf War Syndrome, lupus, scleroderma, vasculitis, multiple sclerosis, Sjogren’s syndrome (dry eyes and throat), Crohn’s disease, irritated bowl syndrome, heart disease, depression, AIDS, ALS, appendicitis, Grave’s Disease, thyroiditis, Lyme’s Disease, asthma, Alzheimer’s, and a plethora of other autoimmune disorders.

There are four main types of mycoplasma found in humans: mycoplasma pneumonia, mycoplasma hominis, mycoplasma genitalium, and ureaplasma urealyticum. Some people are born with some or all of these forms of mycoplasma. They thrive during times of low pressure and live off body cholesterol. They are commonly found in animals and insects and can be transported by the dust in the wind. Mycoplasma can also be passed between humans similar to how the flu is transported. And some mycoplasma can be transported sexually. Needless to say, most people have mycoplasma. [13]

Mycoplasma symptoms include chills, cough, fever, shortness of breath, chest pain, headaches, fatigue, muscle pain and stiffness, joint pain and stiffness, sweating and clammy skin, diarrhea, ear and eye pain, skin rashes, sore throat, allergies, phloem, sleep disturbances, visual disturbances, memory and concentration impairment, arthritis, kidney stones, gall stones, testicular pain, asthma, heart attacks, stroke, burning while urinating, the sensation of a full bladder, Raynaud’s Syndrome like symptoms, low body temperature, hair loss, spine paralysis, weight loss, and dozens of other symptoms making mycoplasma infections hard to identify and treat. [13]

The good news is that people with chronic conditions caused by mycoplasmas can be corrected if not 100% to some degree. The common treatment is a certain type of antibiotics – tetracycline and minocycline work well. Unfortunately, it could take several months or even years of antibiotic treatment to rid the body of these toxic organisms. If a prolonged antibiotic treatment is required then they should be rotated to avoid the development of resistance. During the first few days or weeks of the treatment, symptoms can initially get worse before they improve – this is known as a Herxheimer reaction. [13]

Just like BFS, mycoplasma symptoms are unique for each person. Mycoplasma symptoms can be complicated when a person has an infection due to multiple forms of mycoplasma. Mycoplasma infections can also be complicated by the number of internal organs the infection infiltrates. The same can happen if a person with BFS has multiple triggers or causes – they can get very complicated symptoms. If some BFS cases are caused by mycoplasma infections, then this gives credence to the argument that BFS is an autoimmune disorder in some people. Is it feasibility mycoplasma infections can lead to BFS symptoms? Absolutely, in fact it is the most sensible argument of a catalyst working inside our bodies to transform a traumatic experience into actual symptoms. We know very little about mycoplasma and as more research comes forth, it may become more obvious of its role in BFS. If mycoplasma is shown to commonly coexist with ALS, MS, and fibromyalgia patients, then how hard can it be to accept that mycoplasma coexists with some percentage of BFS patients. What’s worse mycoplasma can be masking chronic conditions that can be cured in BFS patients.

BFS and Personality Types

Although a study on BFS and Personality Types was not conducted in this research survey, it may result in some interesting findings. One simple example of personality types is Type A and Type B personality theory. According to this theory, driven, demanding, and achievement-oriented people are classified as Type A, whereas easy-going, relaxed individuals are designated as Type B. The theory originally suggested that Type A individuals were more at risk for coronary heart disease, but this claim has not been supported by empirical research. However, there has been a study which proves that people with Type A personalities are more likely to develop personality disorders whereas Type B personalities are more likely to become alcoholics.

During the course of my research over 3 years I have been contacted via email and over the phone by several dozen BFS patients. A majority of these people I would conclude are Type A personalities. This may link, for instance, stress and exercise as triggers for BFS. High achievers will naturally put more stress on their lives and these same types of people do not necessarily use exercise to relax, but to train hard for competitions placing more stress on their lives. Hence, it may not necessarily be the exercise triggering BFS symptoms, but the stress to achieve athletically is triggering the BFS symptoms.

A disorder such as BFS creates a vicious cycle of stress on patients. Type A personalities already place unneeded stress on their bodies and the introduction of BFS symptoms only creates more unwanted stress for the body as patients fear the worse (ALS and MS). It is hard for Type A personalities to relax and accept what they have is benign when it is wrecking-havoc on their lives. Face it; it is hard for Type A personalities to accept they have a disorder when there is not much data or information the subject – they need concrete proof or evidence that they have BFS. On the other hand, Type B personalities are more able to relax and therefore can readily reduce stress that may trigger BFS symptoms and if they have BFS they can mitigate symptoms.

Are People Commonly Misdiagnosed with BFS?

According to some neurologists there are four types of Peripheral Nerve Hyperexcitation syndromes. The first is BFS and people with this should only have muscle twitches and experience no other type of muscle symptoms. This may explain the reaction most patients diagnosed with BFS get from doctors is it is “No big deal”. If patients only had twitches than their syndrome would certainly be much easier to live with. If you experience other types of symptoms than it is more likely you have Cramp Fasciculation Syndrome (CFS), Isaac’s Syndrome, or Morvan’s Syndrome and these syndromes are listed in the order of their severity.

According to the survey data, out of 438 people who have taken the survey to date and were not removed as being outlier, the following findings can be reported:

· The 438 people experience, on average, 7.7 of the 11 listed symptoms to some severity

· Only 2 of 438 people experience twitching as their only symptom

· Only 13 of the 438 people experience two or fewer symptoms

· Only 12 of the 438 people experience symptoms in fewer than 8 of the 11 body regions surveyed. The average person experiences symptoms in over 9.1 of the 11 body regions.

What can one learn from the above data? The following conclusions can be made:

· At a minimum, 436 people in the survey have been misdiagnosed and do not have BFS. They more than likely have CFS or Isaac’s Syndrome based on some neurologists’ definition of peripheral nerve disorders. In fact, my diagnosis was changed from BFS to CFS after seeing a fourth neurologist. Despite this change in my diagnosis, my symptoms remained constant.

· This may explain why so many people, including myself, thought there was an overlap of symptoms between BFS and other neurological syndromes and disorders such as RSD and Fibromyalgia. I clearly assumed (after telling three neurologists) my eight symptoms were part of BFS since they concluded I had BFS.

· Granted, people who reach out to social media forums on BFS are more likely to have more bothersome symptoms. This may explain why so many people in this survey have multiple symptoms over most of their bodies (Over 99% of the population). After all, a person diagnosed with BFS and only experiencing muscle twitches occasionally and has no other symptoms, may be far less likely to join social media and participate in this survey on BFS. 

The real question is why do neurologists misdiagnose so many patients with BFS? This is a tough one to answer but here are a few of my thoughts on the subject:

· Most neurologists are centered on an array of neurological diseases and Peripheral Nerve Hyperexcitation syndromes rank low on that spectrum of disorders.

· BFS is a convenient diagnosis that can send patients on their way without any worry that they have something more serious like ALS and MS.

· Fasciculations or muscle twitching is a symptom that can be viewed both visually and by EMG. Other symptoms such as pins and needles, cramps, muscle fatigue and weakness (not atrophy), headaches, itching, numbness, muscle stiffness, muscle pain and soreness, muscle buzzing or vibration sensation, and sensitivity to temperatures are all harder symptoms to verify and are mainly subject to patient input. Hence, it may be possible that neurologists may only diagnose what can be verified through technology and or observation. Maybe it was the fact that my muscles did something unusual that enabled my neurologist to change my diagnosis – he could see my muscles did not contract properly when they were hit with his reflex hammer. Or maybe it is because my neurologist has more experience in dealing with BFS and or CFS patients.

BFS / CFS Causes

Until recently there have been no studies on peripheral nerve hyperexcitation disorders to determine what may cause or trigger these symptoms. One possibility causing CFS and maybe even Isaac’s or Morvan’s syndrome can be a benign tumor in the body. [14] The study found that 25% of people with CFS have a specific neural autoantibody produced by a benign tumor that can cause CFS symptoms. If you have the antibody then you need to get a CT scan to find the tumor. So it is possible to have a benign tumor wreaking havoc in the bodies of BFS patients.

A Day in the Life with BFS

I take medication to help me sleep because the twitching and paresthesia symptoms are too bothersome. I wake up every half hour or so to rescue my arms that have gone dead from the elbow to the finger tips. Mix in a few foot and calf cramps and I finish another restless night of sleep. It takes about 10 minutes from the time I get up to begin feeling and regaining the strength back in my arms and legs. Once out of bed I take another 15 to 20 minutes to get the stiffness out. I teach myself how to touch my toes again and to put on my workout clothes every morning. After breakfast I hike, bike, or climb for several hours fighting cramps throughout the body. I exercise daily to prove to myself I have nothing worse than chronic BFS. The exercise exasperates my symptoms, but a long hot bath seems to help some. Most of my work is computer related and it is usually interrupted by finger oscillations, stiffness, muscle pain, or the fact my hands have lost their feeling. I have to wear big booties on my feet because they get cold even when the room is over 80 degrees. Sometimes I even wear gloves when it is 80 degrees. The evening hours of my day is usually confined to laying down on the couch thinking about another restless night of sleep all the while feeling the barrage of BFS symptoms ravaging my body. My muscles are too fatigued and sore by this time to do much of anything productive.

An Epidemiology Study of BFS (Part II)

CONCLUSION and DISCUSSION:

Why Publish a Survey Data Paper?

Most medical professionals have been trained to believe the only acceptable information for publication are studies consisting of a control group, clinical trial, or observation of patients. Here are the reasons this survey is acceptable for publication:

First, this paper is not statistically flawed like most medical research papers or clinical trials. One research paper estimates that 2 in 5 medical research papers are flawed due solely to an inadequate sample size. [9] This paper meets survey guidelines to meet a 95% confidence level for its data results because it has surpassed a sample size of 384. To dismiss this survey as insignificant is the same as saying a population of 25 million people are lying about their symptoms.

Doctors will question whether survey participants are being truthful and accurate with survey responses. This paper eliminates outliers – responses that are questionable and may not belong with the overall population in two ways. First, the survey questionnaire asks control questions to eliminate any participants that have not been officially diagnosed with BFS and or had an EMG or MRI. Secondly, a statistical analysis is performed on the survey data of each test to eliminate participants whose responses to the questionnaire are consistently outside +/- 3 standard deviations of the normal distribution.

Besides, most medical studies using “acceptable methods” are statistically flawed, and what’s worse most doctors that read these medical research papers do know they are flawed: “The increasing volume of research by the medical community often leads to increasing numbers of contradictory findings and conclusions. Although the differences observed may represent true differences, the results also may differ because of sampling variability as all studies are performed on a limited number of specimens or patients. When planning a study reporting differences among groups of patients or describing some variable in a single group, sample size should be considered because it allows the researcher to control for the risk of reporting a false-negative finding (Type II error) or to estimate the precision his or her experiment will yield. Equally important, readers of medical journals should understand sample size because such understanding is essential to interpret the relevance of a finding with regard to their own patients. At the time of planning, the investigator must establish (1) a justifiable level of statistical significance, (2) the chances of detecting a difference of given magnitude between the groups compared, i.e., the power, (3) this targeted difference (i.e., effect size), and (4) the variability of the data (for quantitative data). We believe correct planning of experiments is an ethical issue of concern to the entire community.” [9] The survey analysis for this paper follows these guidelines.

Secondly, we know very little about BFS so all the information in this writing is not only statistically and practically significant, but it is also novel regardless of no, weak, moderate, or strong correlation between parameters. Regardless of correlation status, this study contributes to the body of evidence related to this disorder. For example, there is no correlation between spine and neck injuries and symptoms in the legs, however this is good to know when evaluating future patients.

Thirdly, we must combat the fallacies about survey usefulness and accuracy and highlight inadequacies of controlled studies, clinical trials, and patient observation. Surveys are cost effective while controlled studies and clinical trials are in most cases cost prohibitive. Doesn’t it make sense to conduct a survey to find statistical and practical significance and correlation before moving on to an expensive controlled experiment or clinical trial? One would hope so.

Also, proximity is not an issue with surveys, they are global meanwhile controlled studies and clinical trials can limit the sample size to a more localized region. For instance, this study learned that stress related BFS is more statistically significant outside North America whereas people with BFS who have a family history of neurological issues are more likely to reside within North America. In fact, nearly one third of survey participants are located outside of North America. As a result, proximity sample size restrictions can hide relevant results. Observation and examination would miss this relevant connection and therefore can be overrated.

Observation and examination can be overrated for other reasons as well. In fact, observation of BFS patients has no practical benefit since most patients look normal and exhibit few symptoms that can be viewed – most are all internal. Doctors can only rate a BFS patient based on their response to questions – similar to a survey or questionnaire. Since doctors cannot see symptoms, for this reason, neurologists and doctors alike may falsely label BFS as benign. Also patient observation can also be influenced by stress. For example, my BFS symptoms and even my blood pressure are much higher every time I see my doctor due to anxiety.

In an anonymous survey the reviewer can only rely on the data and the statistical analysis – there is no human bias. However, in clinical research trials, bias and opinion are routinely injected in these studies by medical personal. One study on 21 clinical trials found “On average, non-blinded assessors of subjective binary outcomes generated substantially biased effect estimates in randomized clinical trials, exaggerating odds ratios by 36%.” [10] This can be eliminated if the clinical trial is double blinded and controlled.

There is also evidence that money used to fund clinical trials by industry and the government can bias outcomes. "Thus, although there is little direct evidence that industry sponsorship has led to deliberate skewing of the results or reporting, there are multiple cases in which industry and government sponsors have withheld important study results and in which the conclusions presented in the reports appear to overstate the study findings. The risk of undue influence in research exists." [11]

Fourth, some may argue my lack of a medical degree disqualifies me from publishing a medical paper in a medical journal. However, there is nothing medical about this paper. This paper is merely a thorough statistical or epidemiology analysis about a medical issue that we know very little about - BFS. In the discussion section there is an attempt to tie the correlation results of this paper to a few medical conditions tied to BFS in previous research.

Does the Data Make Sense?

Every person analyzing data for their study must ask themselves the question: Does the data make sense? This is a difficult question to answer especially regarding neurological disorders because no one really knows what the expected outcome will be. However, there are some control questions within this survey where the expected outcome of the question is more predictable. So it comes as no surprise there is strong correlation between symptoms such as muscle pain and soreness with cramps and stiffness; pins and needles are more likely to occur in the feet; stress exasperates stress induced BFS symptoms; exercise is more likely to exasperate exercise induced BFS; an illness is more likely to exasperate illness induced BFS; and headaches are likely to affect the head to name a few. These trends are what one would suspect, so we can conclude that people are answering the survey correctly. Many more of these logical trends can be found in Table 1 through Table 7.

Misconceptions of BFS

This paper also refutes a few myths about BFS. The first myth is that BFS is the same for everyone – easy to live with. For most individuals it is true, BFS is no big deal and easy to live with, but there are many chronic sufferers from this disorder that are ignored. Consider this, the average BFS patient in this survey suffers from muscle twitching (76% of the time), pins and needles (37.9%), cramps (35%), numbness (30%), muscle fatigue and weakness (42%), headaches (25%), itching (24%), muscle soreness and pain (47%), muscle buzzing and vibration (46%), and sensitivity to temperatures (32%). They feel these symptoms in their feet (56% of the time), lower leg (74%), upper leg (52%), back (34%), buttock (39%), abdomen (31%), chest (24%), head (38%), hands (46%), and arms (49%). The data suggests people in the survey feel on average 7.7 of 11 symptoms over approximately 80% of their bodies. From this data we can conclude that the people in this survey suffer from chronic BFS because they live with symptoms 24/7 over their entire body. What’s worse, the best remedies for relieving symptoms inebriate suffers – sleeping pills (2.85 out of 10) and benzodiazepine drugs (3.4 out of 10). None of this should be surprising since the people taking this survey belong to a BFS social networking site. People would only go to these forums if they have a chronic condition for which they cannot find any relief or answers. Besides, nearly 50% of the participants in the survey have had both an MRI and EMG and over 80% have had either an EMG or MRI. This is significant because only people with chronic fasciculation issues would be subject to such expensive testing to rule out other more serious neurological conditions.

This paper also refutes the claim that BFS is always “benign”. In medicine, benign is defined as “of no danger to health; not recurrent or progressive; not malignant.” However, the survey results show that only stress induced BFS patients (this is the most common form of BFS) can control their symptoms over time. Patients with BFS induced by anything but stress will see their symptoms get progressively worse over time. Since these patients symptoms are progressive, therefore by definition BFS is not “benign” in all cases. A better name would be Progressive Fasciculation Disorder (PFD) for chronic sufferers of BFS that is not stress induced.

Multiple Triggers or Causes?

There are nine suggested causes or triggers for participants to choose from in this survey. In many cases, people believe they have had more than one potential trigger over the course of their lives. For instance, with the author’s own experience with BFS, he believes there may have been a multitude of triggers for his symptoms including exercise (high altitude climbing and mountaineering), history (grandmother with Parkinson’s disease), sickness (had a gamma globulin deficiency that caused infectious boils as a youth), prescription drugs (regular use of antibiotics for folliculitis, and allergy medications), and like others surveyed, had experienced a great deal of stress.

It is possible that once afflicted with BFS that other triggers can make symptoms worse and introduce new symptoms. This should be explored further. The multitude of triggers is what can make BFS unique in each patient. Considering this uniqueness in this umbrella diagnosis, it is no surprise that it is difficult to cure or find solutions to alleviate symptoms. While BFS is benign, it is still an illness for which its sufferers would benefit from an effective treatment or cure.

Many potential triggers were purposely omitted from the survey, such as alcohol or substance abuse. [2] The survey did not want to scare participants away because they felt it was becoming too personal (checking into illegal activity). Conversely, many people have found the use of medical marijuana as good remedy and it was purposely omitted because marijuana is controlled substance that is illegal in the U.S. [2]

How to Solve Neurological Mysteries?

Doctors and researchers strive to be one to find the cure to ALS and Parkinson’s disease. If they do, what they uncover will surely help find a cure for BFS. The reverse is also true, if researchers find a cure for BFS it will undoubtedly go a long way in helping to find a cure for ALS and Parkinson’s disease. As an engineer I witnessed too many projects go awry when projects attempted to make a product that included too many features. The project would result in a costly failure and years later the company would develop three or four products to perform the job of the one initially attempted to achieve all features. Over time, the products eventually could be integrated into one product as technology and knowhow were obtained. I see the same mistake in medicine. Researchers are working endlessly and racking up billions in costs to try to find that magical cure that will end the suffering of millions of people with neurological disorders. Instead, it would make more sense to try to take small steps and gains in order to achieve that ultimate goal. This approach would be much more cost and time efficient. Finding a cure for BFS or peripheral nerve hyperexcitation disorders is that first baby step.

An Epidemiology Study of BFS (Part I)

ABSTRACT:

The purpose of this paper is to explore a statistical or epidemiology study about Benign Fasciculation Syndrome (BFS). In particular, the goal of the paper is to investigate if correlation exists between BFS symptoms, potential triggers, physical response, and remedies.

The method used was to collect data from an internet survey created on Google Drive. Data was obtained from 527 people over 3 years. Of the 527 responses to the survey a total of 438 were evaluated within this paper. Hence, 89 survey entries were deemed as outliers for a variety of reasons. The data was modeled using a linear regression analysis to determine if there is statistical significance between symptoms, potential causes or triggers, body areas affected by BFS, and potential remedies. Data points with high statistical significance were then evaluated using a Spearman Correlation method to find if correlation exists. The data results are shown in Table 1 through Table 7 and the outcomes are discussed in detail.

To conclude, this paper will combat the fallacies about survey usefulness and accuracy and highlight inadequacies of controlled studies, clinical trials, and patient observation. The paper tackles the misconceptions about BFS including it being truly benign to people chronically afflicted by the disorder and the true definition of BFS and what distinguishes it from other peripheral nerve hyperexcitation disorders. The discussion section of the paper also explores other possibilities about BFS such as mycoplasma acting as a catalyst to transform triggers or causes into symptoms; multiple causes triggering unique BFS symptoms; and the possibility of BFS afflicting certain personality types more readily.

INTRODUCTION:

Defining and understanding neurological disorders can be medically challenging. Benign Fasciculation Syndrome (BFS) is a disorder characterized by fasciculation or muscle twitching of unexplained causes. Other BFS symptoms may include muscle fatigue, cramps, pins and needles sensations, paresthesia, muscle vibrations, headaches, itching, sensitivity to temperatures, numbness, muscle stiffness, muscle soreness and pain. [1] BFS is considered to be a disorder of Peripheral Nerve Hyperexcitability (PNH). BFS or PNH causes are not entirely understood and hence the need for this study. Some theories state that the cause of BFS or PNH may involve the potassium channel of the nerve terminal's inability to properly close its gates when a motor nerve impulse reaches the nerve terminal, resulting in a still-remaining active muscle fiber. [2] This imbalance is what causes involuntary impulses that consequently stimulate the nerve endings causing them to fire and twitch. [1,3,4]

OBJECTIVE:

The objective of this paper and survey is to perform a statistical or epidemiology study of BFS to better define an understudied and misunderstood disorder, especially amongst those chronically afflicted by the syndrome. Like many neurological disorders, there is no known cure for BFS. While this disorder is considered “benign” it contains symptoms that are very real and in some cases both psychologically and physically debilitating. [5] This is primarily due to the chronic and progressive nature of the disorder in some individuals. Most neurologists and doctors will tell chronic BFS patients that their symptoms are “not debilitating”. This is a misconception about the disorder. The statistical analysis of BFS from the survey proves that symptoms in many people are chronic (high frequency and intensity) and progressive. One study claims that up to 1% of the population may suffer from BFS. [6] BFS, for most people, is benign and insignificant, but those individuals with chronic symptoms 24/7, BFS can wreak havoc on their lives. Chronic BFS patients are prone to dealing with anxiety since their early onset symptoms are similar to other crippling disorders such as Parkinson’s disease, Amyotrophic Lateral Sclerosis (ALS), Multiple Sclerosis (MS), and even brain tumors. Because of their symptoms, many BFS patients have often undergone advanced medical testing including Magnetic Resonance Imaging (MRI) performed on the brain as well as an Electromyography (EMG) to rule out other neurological disorders. [1] Based on a Microsoft Research Study conducted by White and Horvitz, there is a .50 probability that a quick internet search on “muscle twitching” leads them to sites related to ALS. Needless to say, this causes a great deal of distress for the individual knowing the relationship of twitching and ALS. In fact, some fairly recent studies have cited rare cases of individuals who started with twitching and cramping symptoms and developed ALS years later. [7] While these cases are extremely rare, the knowledge of them can cause continual anxiety in the chronic BFS patient.

Chronic BFS patients have similar symptoms to other neurological disorders including Neuromyotonia (NMT), Benign Cramp Fasciculation Syndrome (BCFS), fibromyalgia, Reflex Sympathetic Dystrophy (RSD), stiff person syndrome, continuous muscle fiber activity, continuous motor nerve discharges, Isaac Syndrome, and Morvan’s Syndrome with some differentiated by an EMG. [1] For this reason many remedies attempted to relieve BFS symptoms are exactly the same as those remedies used for NMT, BCFS, RSD and other neurological disorders. [1] At this time there is no evidence that BFS patients are any more likely to acquire other more serious neurological disorders, such as ALS or MS, than any person without BFS. [4] After all, if evidence existed BFS patients are more likely to contract ALS or MS then more doctors would be studying the syndrome.

If BFS is always benign in the eyes of most neurologists, then why do people with BFS go through advanced medical testing and take powerful medications such as anti-seizure, anti-depressant, sleeping pills, benzodiazepines, muscle relaxants and other strong medications to relieve symptoms? The answer is because there are people with extreme chronic cases of BFS.

METHODS:

The methods used to calculate results in this paper can be found in Appendices I, II, III, IV, and V. Each appendix covers Study Background, User Groups, Survey and Data, Data Analysis, and Sample Size computations respectively.

RESULTS:

Tables 1 through 7 below have the Spearman correlation data for a defined classification of variables. For this study, the variables were grouped into seven classifications – General, Causes / Triggers, Stressors (those variables that can make BFS symptoms worse), Symptoms, Body Parts Affected, Remedies, and Various. For instance, the General classification of variables consists of 7 parameters: age, sex, region, number of years with symptoms, years diagnosed, EMG, and MRI. The Various classification includes variables such as are symptoms getting worse over time or what part of the day is worse for symptoms. Results shown in italic fonts indicates moderate correlation and results in bold fonts indicate strong correlation. Normal font indicates only weak correlation. Parenthesis ( ) around the result indicates a negative correlation.

Parameter Definition Key (Most are self-explanatory):

General:

Age – What is the age of the survey participant?

Sex – What is the gender of the survey participant (Male or Female)?

Region – What continent of residence does the survey participant reside?

Symptom Stressors:

Sickness1 – Are BFS symptoms exasperated by an illness?

Exercise1 – Are BFS symptoms exasperated by exercise?

Stress1 – Are BFS symptoms exasperated by stress or anxiety?

Various:

Remedies – Did any remedies tried by the survey participant make symptoms worse?

Missing – Are any potential remedies missing from the survey list?

Time – Are symptoms getting worse or better over time?

Day – What time of day are symptoms worse?

Altitude – Do symptoms get worse at altitude?

Triggers / Causes:

Chemicals – Did exposure to chemicals such as organophosphates trigger symptoms?

Other – Does the survey participant feel their BFS symptoms were triggered by something not mentioned in the survey?

Table 1: General Parameter Correlation

Parameter	Parameters with Weak, Moderate, and Strong Spearman Correlation
Age	Years with BFS Symptoms, (Stress / Anxiety), History, (Stress Anxiety 1), Muscle Stiffness, Lower Leg
Sex	Region, (Feet), Lower Leg, (Hip Buttock)
Region	Sex, Stress Anxiety, (History), (Muscle Relaxant), (Diet), (Remedies)
Years Diagnosed	Years with BFS Symptoms, EMG, (Stress / Anxiety), Exercise1, Lower Leg, Anti-Seizure
Years with BFS Symptoms	Age, Years Diagnosed, (Stress Anxiety), Exercise1, (Stress Anxiety1), Twitching, Sensitivity to Temperatures, Lower Leg, Time
EMG	Years Diagnosed, MRI, Sickness, (Stress / Anxiety), (Stress Anxiety1), Back, Anti-Seizure, Benzodiazepine
MRI	EMG, Prescription Drugs, Spine and Neck Injury, Pins and Needles , Cramps, Diet, Remedies

What information can be processed from the correlation data in Table 1? One example will be evaluated from each table to show how to read and understand the data. It is important to note that positive correlation means the parameters track proportionally and negative correlation (parenthesis around the result) means the parameters track inversely proportional.

From Table 1 the Years with BFS Symptoms (YBFS) parameter is evaluated. From the correlation it can be concluded that older people in the survey have had BFS longer (no surprise); older people are less likely to have stress or anxiety induced BFS; exercise is more likely to exasperate symptoms in people who have had BFS for long periods of time; stress is less likely to exasperate symptoms in people who have had BFS for a long periods of time; twitching and sensitivity to temperatures will get worse over time; and symptoms will predominately remain in the lower legs.

Table 2: Symptom Stressor Parameter Correlation

Parameter	Parameters with Weak, Moderate, and Strong Spearman Correlation
Sickness1	Sickness, Exercise1, Stress / Anxiety1, Missing
Exercise1	YD, YBFS, Exercise1, Other, Sickness1, Stress / Anxiety1, (Anti-Depressant), (Muscle Relaxant)
Stress / Anxiety1	(Age), (Years with BFS Symptoms), (EMG), Stress / Anxiety, (Other), Sickness1, Diet, Benzodiazepine

From Table 2, the Stress and Anxiety (SA1) parameter is examined. Stress or anxiety is more likely to exasperate symptoms in younger people; people with stress induced BFS are less likely to get an EMG; people with stress induced BFS are more likely to have symptoms exasperated by stress; a sickness may also exasperate symptoms; people with stress induced BFS are less likely to have another trigger or cause; and diet and Benzodiazepine drugs may work best to control symptoms.

Table 3: Symptom Parameter Correlation

Parameter	Parameters with Weak, Moderate, and Strong Spearman Correlation
Twitching	Years with BFS Symptoms, Stress / Anxiety, Pins and Needles, Lower Leg, (Anti-Depressant), (Diet), (Benzodiazepine), Time
Pins and Needles	MRI, Twitching, Numbness, Vibration / Buzzing Sensation, Feet
Cramps	MRI, Numbness, Muscle Pain and Soreness, Lower Leg
Muscle Fatigue and Weakness	Muscle Stiffness, Muscle Pain and Soreness, Feet, Lower Leg, Anti-Seizure, Massage
Headaches	Itching, Neck / Head
Itching	(Exercise), Headaches, Muscle Stiffness, Sensitivity to Temperatures, Neck / Head
Numbness	Pins and Needles, Cramps, Muscle Stiffness, Sensitivity to Temperatures, Anti-Depressant
Muscle Stiffness	Age, Muscle Fatigue and Weakness, Itching, Numbness, Muscle Pain and Soreness, Diet
Vibration / Buzzing Sensation	(Vaccine), Pins and Needles, Feet, (Muscle Relaxant), Benzodiazepines
Muscle Pain / Soreness	Cramps, Muscle Fatigue and Weakness, Muscle Stiffness, Sensitivity to Temperatures, Hands, Anti-Depressants
Sensitivity to Temperatures	Years with BFS Symptoms, Itching, Numbness, Muscle Pain and Soreness, Homeopathic Treatments

From Table 3, the Twitching symptom is explored. Twitching will get worse for most BFS patients over time and it’s the primary symptom in stress induced BFS; people who have twitching as a symptom may also experience pins and needles as a secondary symptom; and twitching will generally occur in the lower leg and remedies such as anti-depressants, diet, and benzodiazepine drugs may not help or make matters worse.

Table 4: Body Area Parameter Correlation

Parameter	Parameters with Weak, Moderate, and Strong Spearman Correlation
Feet	(Sex), Spine or Neck Injury, Pins and Needles, Muscle Fatigue and Weakness, Vibration / Buzzing Sensation, Lower Leg, Hands
Lower Leg	Age, Sex, Years Diagnosed, Years with BFS Symptoms, Twitching, Cramps, Muscle Fatigue and Weakness, Feet, (Arms / Shoulders)
Upper Leg	Hip / Buttock, Abdomen, Arms / Shoulders
Hip / Buttock Region	(Sex), Upper Leg, Back
Back	EMG, HBR, Abdomen, Chest, Arms / Shoulders, Anti-Shoulders
Abdomen	Upper Leg, Back, Chest, (Yoga)
Chest	Back, Abdomen, Neck Head, Arms / Shoulder, Anti-Seizure
Neck / Head	Headaches, Itching, Chest, Hands, Arms / Shoulder, Massage, Remedies
Hands	Sickness, Muscle Pain and Soreness, Feet, Neck / Head, Arms / Shoulders
Arms / Shoulder	(Lower Leg), Upper / Leg, Back, Chest, Neck / Head, Hands

From Table 4 the Lower Leg parameter is examined. The lower leg is most likely to affect older male BFS patients; twitching is the primary symptom along with secondary symptoms of cramping and muscle fatigue and weakness; and people with lower leg symptoms are less likely to have BFS symptoms in the arms and shoulders, but highly likely to have symptoms in the feet.

Table 5: Remedy Parameter Correlation

Parameter	Parameters with Weak, Moderate, and Strong Spearman Correlation
Anti-Seizure	Years Diagnosed, EMG, (Spine or Neck Injury), Sickness, Exercise, Muscle Fatigue Weakness, Back, (Chest)
Anti-Depressants	(Exercise1), (Twitching), Numbness, Muscle Pain and Soreness
Sleeping Pills	Exercise
Muscle Relaxants	(Region), History, Exercise1, (Vibration / Buzzing Sensation)
Homeopathic Treatments	Sensitivity to Temperatures, Missing
Supplements	SA1, (Twitching), Muscle Stiffness, Neck / Head
Diet	(Region), MRI
Massage	Sickness, Exercise, Stress / Anxiety1, Muscle Fatigue and Weakness, Neck / Head
Yoga	(Abdomen), (Remedies)
Benzodiazepine Drugs	EMG, Stress Anxiety, (Twitching), Vibration / Buzzing Sensation

From Table 5 the Anti-Seizure (AC) remedy is evaluated. People are more likely to try anti-seizure medications after having been diagnosed for a long period, and more likely to have had an EMG; they are also more likely to have had their BFS symptoms triggered by an illness or exercise and experience muscle fatigue and weakness; and symptoms are likely to occur in the back, but less likely to occur in the chest.

Table 6: Various Parameter Correlation

Parameter	Parameters with Weak, Moderate, and Strong Spearman Correlation
Remedies	(Region), MRI, Chemicals, Prescription Drugs, Neck / Head, (Yoga), Missing, Altitude
Time	Years with BFS Symptoms, Twitching
Day	No Correlation
Missing	Vaccine, Sickness, Sickness1, Homeopathic Treatments, Remedies
Altitude	Sickness, Supplements, Remedies

From Table 6 the Remedies parameter is investigated. People from North America are more likely to have tried a remedy that has made their BFS symptoms worse and they are more likely to get an MRI; people with chemical or prescription drug induced BFS are more likely to have tried a remedy that has made their symptoms worse and the symptoms are likely to happen in the neck and head region of the body; yoga is not helpful and remedies that are helpful are missing from the survey; and altitude or low pressure can also make symptoms worse.

Table 7: Cause or Trigger Parameter Correlation

Parameter	Parameters with Weak, Moderate, and Strong Spearman Correlation
Flu Shot / Vaccine	Chemicals, (Vibration / Buzzing Sensation), Missing
Chemicals	Vaccine, Prescription Drugs, Spine or Neck Injury, Remedies
Prescription Drugs	MRI, Chemicals, Sickness, Remedies
Spine and Neck Injury	MRI, Chemicals, Feet, (Anti-Seizure)
Sickness	EMG, Prescription Drugs, Sickness1, Hands, Anti-Seizure, Massage, Missing, Altitude
Exercise	Stress Anxiety, Exercise1, (Itching), Anti-Seizure, Sleeping Pills, Massage
Stress / Anxiety	(Age), Region, (Years Diagnosed), Years with BFS Symptoms, (EMG), Exercise, Stress / Anxiety 1, (Twitching), Massage
History	Age, (Region), Muscle Relaxant
Other	Exercise1, (Stress / Anxiety1)

From Table 7 the Stress and Anxiety trigger parameter is examined. Stress induced BFS is more likely to happen in younger patients from Europe and they are less likely to have an EMG; stress will exasperate symptoms, but not necessarily twitching; and massage works best to alleviate symptoms.

The above examples should help the reader figure out how to read the correlation data for all parameters in all tables.