BFS Survey

Information about how to manage or reduce the severity of BFS symptoms

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Re: BFS Survey

Postby pbohan on May 14th, 2012, 3:31 pm

We have 183 participants and I uploaded the new data to my website.

Yulia, thanks for the information. Yes, this would be very informative information to make a good survey. Wish I saw it sooner.
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Re: BFS Survey Update

Postby pbohan on May 26th, 2012, 9:24 am

We now have 188 people in the survey. I have updated the data on my website for reference. Thus far I have gotten about 8 rejection notices from journals I submitted the article to for this study. I will keep trying, but it does not look good. I added this study to the reference list on the Wikipedia BFS sites. Mitra and I have been discussing a rewrite of the article and submitting it to a magazine instead.

Thanks for participating, keep the responses coming and if you have any updates to your survey information, please forward that information to me. For instance, if you have tried a new drug since you first filled out the survey and would like to update it in the survey - give me your code (last 5 digits of telephone number) and I will update the informatiion.
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Re: BFS Survey

Postby ImOK on June 1st, 2012, 11:23 am

Just read through the paper on 163 participants - pretty good work! It does help to clarify some trends in the those afflicted with BFS and IMO people here should get some assurance from giving it a read through if only to read the abstract and summary). However, I don't agree that BCFS is a separate form - I think it is a variant. There are just too many similarities to BFS.
What journals are you applying to? It seems that most would not accept online surveys, with the exception perhaps of a few psychology journals and not sure about them. Maybe you could try for presentation at a conference instead? Looking forward to your recalculation and summary update with more participants.
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Re: BFS Survey Update

Postby pbohan on June 5th, 2012, 6:20 pm

We now have 194 participants. I uploaded the updated excel data file to my webpage (general statistics). If we get 250 participants I will redo all the correlation models.

Thanks IMOK for the comments and glad you found the paper acceptable to see trends. I think you make a valid point about BCFS and BFS, maybe some day they will be considered one in the same - time will tell.

Your assumptions about journal acceptace is right. I think I am 0 for 10. I have submitted to a couple of epidemiology journals including neuroepidemiology - which I thought would be my best shot. I submitted to a bunch of neurology journals including Nuerology, Neurosurgy, and Physchiatry. Right now I waiting for a decision by "Practical Neurology".

I am in the process of writing a more personal and shorter version that can be submitted to magazines. This may have a better shot. Many magazines take articles from people suffering from an illness.

The fact I am not a medical doctor really hurts my chances for journal publication.
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Re: BFS Survey

Postby ImOK on June 9th, 2012, 7:02 pm

How about a co-author that is a medical doctor, who participates in research, and is interested in your results? Maybe a post here as we have a few docs on the forum? Someone who could possibly add some depth to the dialogue and also to your summary and conclusions? Have you tired trolling the medical test sites where they are asking for participants in studies? Or medical studies at universities? It seems like a practical use of this information you're collecting is for diagnosis; which reminds me, we have had quite a few medical students here reporting bfs symptoms.....you could search here for them and see if you can make contact?

Well, good luck - I'm sure you could get some magazine interested if you can simplify it enough and just make references to your website for data. It would be good to do that - get something published - as it will protect your data as yours at least.
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Re: BFS Survey

Postby raindog on June 10th, 2012, 4:21 am

ImOK wrote:How about a co-author that is a medical doctor, who participates in research, and is interested in your results? Maybe a post here as we have a few docs on the forum? Someone who could possibly add some depth to the dialogue and also to your summary and conclusions? Have you tired trolling the medical test sites where they are asking for participants in studies? Or medical studies at universities? It seems like a practical use of this information you're collecting is for diagnosis; which reminds me, we have had quite a few medical students here reporting bfs symptoms.....you could search here for them and see if you can make contact?

Well, good luck - I'm sure you could get some magazine interested if you can simplify it enough and just make references to your website for data. It would be good to do that - get something published - as it will protect your data as yours at least.


What about NORD they might be interested regarding PNH CFS http://www.rarediseases.org/
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Re: BFS Survey

Postby pbohan on June 12th, 2012, 4:04 pm

Thanks for the feedback. I will look into this. I went to the NORD site and they have some personalized stories - this may be an option.

Great idea about getting a doctor on the paper. This may help alot. I will make a separte post on the site looking for such a person.
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Re: BFS Survey

Postby pbohan on June 14th, 2012, 5:01 pm

We now have 199 participants in the survey. I have updated the excel spreadsheet with the general statistics and it is loaded on my BFS website. Thank you for participating.
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Re: BFS Survey

Postby pbohan on June 22nd, 2012, 3:23 pm

We now have 203 participants. I have not updated the statistics yet, but did a rewrite or the Medical paper (based on feedback and more research on my part) and more personalized one that I am trying to get published in a magazine. Both of these have been added to my web site along with a video of my leg and my BFS. Thank you to Mitra and my wife for their help editing some of these writings.

http://patrickbohan.elementfx.com/BFS.htm

As far as the medical paper is concerned some of my assumptions about statistical significance may not be true, so I will have to add a Spearman correlation model to my results. What was even more troubling was that I calculated what type of sample size we need for our survey to have 5% error and 95% confidence level - 384 is the magic number. We will get there as people join our social network, but it will take time. I may not update any models until we get to this point, since it is a lot work considering I have to add the Spearman correlation models as well. I should have calculated all of this earlier and done a better job researching statistical significance. I apologize for this. For those who do not want to read the whole piece on my web site below is what I added to the medical paper (Statistics can be very confusing):

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 to 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 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. Our present level of survey participation has approximately a 75% confidence level.

Correlation

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 be used. [9] Once this survey reaches its goal of 384 participants, a Spearman correlation study will be conducted on those parameters that show high statistical significance. Spearman results can be broken down as follows: +/- 0.5 to 1 as strong correlation, +/- 0.3 to 0.5 as moderate correlation, +/- 0.1 to 0.3 as weak correlation, and 0 to +/-0.1 as no correlation. [9]

Discussion
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.

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. [9] In this survey, since the sample size is becoming large, it is probable that the data may indicate strong statistical significance between various parameters, but only weak to moderate correlation – yet this data can be practical significance. Weak correlation, strong statistical significance, and large sample size is usually better than weak statistical significance, small sample size, and strong correlation. [9] My original assumption that if moderate to high statistical significance only yielded weak Spearman correlation, this would be practical significance because BFS is a syndrome we know nothing about. Hence, any correlation weak or strong would be new and helpful information. For this reason, I did not run the Spearman correlation models. After all, if weak correlation was practically significant than why bother with the models. My assumption might be true, but based on [9] the results of Spearman correlation still need to be calculated and added to this writing.

9 DA De Vaus, Analyzing Social Science Data, Sage Publications 2002; p178-85.
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Re: BFS Survey

Postby pbohan on June 24th, 2012, 5:53 pm

We have 206 particpants, the statistical analysis excel file has been updated and uploaded to my website. I also upded the latest and greatest Medical Paper document, but I will wait to submit to a journal until we meet our sample size requirements. I will work on submitting to magazines in the meantime - shorter more personalized account of my BFS.

Thanks for participating - keep the replies coming and thank you to all of you that have participated.
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Re: BFS Survey

Postby pbohan on July 4th, 2012, 4:23 pm

We now have 211 particpants in the Survey. Thank you for your input. I have not updated any of the general statistics yet and have no more information about publication, but still working on it.
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Re: BFS Survey

Postby pbohan on July 15th, 2012, 5:59 pm

We now have 215 people in the survey. I will probably update the general statistics around the end of the month. Keep the responses coming.
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Re: BFS Survey

Postby acudoc11 on July 16th, 2012, 11:02 pm

I sent this to several individuals. Even though it appears that some of my private questions never got answered I am still willing to share. Feel free to add to your survey some extremely relevant valid experiences and information.

Hi Amacra
It is interesting that someone (who ignored my comments) posted a few months ago about Myalgic encephalitis/encephalopathy coupled with Chronic Fatigue Syndrome and one of the causes as being toxoplasmosis (cat parasite). Something I was saying early on in my posts but was scoffed at because I arrived at it through Chinese medicine and how certain invasions of the body attack the liver which in turn can cause what is called internal wind (fasciculations, cramping, certain eye problems, etc).
The combination triggers for me was an emotional occurrence losing a cat-buddy of 17 years, cleaning lots of cat liter at the end; taking a nasty blood pressure medication over two previous years prior to Aug/Sept 2011. Along with the regular constant fasciculations around calves, glutes, knees, hips, elbows and shoulders.... I had distance double vision. The double vision is totally resolved by herbally and nutrionally supporting both my liver and eyes, while the fasciculations although substantially reduced to slight vibrations.....have been difficult to totally resolve. Then the light bulb went on. The enzyme inhibitor blood pressure messed with my liver and kidney tubules by causing a huge blockage of potassium in the body along with the potassium channels. I have been a daily tea drinker and been on a kick for the past several years of almost a daily intake of one cup of Earl Grey tea at night. I was checking for a friend whether that tea might contribute to constipation and lo and behold found that not only is that a possible side effect but MORE importantly the flavor enhanced ingredient called bergamot in many Earl Grey formulas actually CAUSES muscle twitching and muscle cramping. Of course everyone is different in regard to the amount of tea. I believe my system was so delicate that even one cup has been too much. Thinking back there were days the fasciculations were greater and days they were lesser which coincided with the days I either had the tea or missed it (not often). I do not believe that this is a primary cause of BFS but as with many causes/sub-causes it is something that others might consider removing from their drink regimen and see if they improve even if just a little. BFS'ers need to pay attention to what they are eating and drinking.
Regards,
Richard
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Re: BFS Survey

Postby pbohan on July 22nd, 2012, 7:33 pm

We have 220 participants in the survey. The general data statistics has been updated on my website, hit the link Survey Data under the Questionnaire Results for 161 Participants. The Model Data will have to wait until we get upwards of 384 participants. No new news on the publication front. Thank You.
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Re: BFS Survey

Postby pbohan on July 29th, 2012, 11:08 am

We now have 229 people in the survey. Thank you. I have updated the general statistics and loaded them back up to my website.

http://patrickbohan.elementfx.com/BFS.htm

Click on survey data under the BFS questionnarie results for first 161 participants.
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Re: BFS Survey

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