BFS Survey

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

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Re: BFS Survey

Postby pbohan on August 9th, 2012, 3:19 pm

We now have 237 participants. The general statistics have been updated and loaded on my BFS website. Thank You.
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Re: BFS Survey

Postby pbohan on August 30th, 2012, 4:14 pm

We have 243 people in the survey. I have not updated the general statistics yet, but I have added a few more articles I have written trying to explain the statistical analysis I am doing on the data.

http://patrickbohan.elementfx.com/BFS.htm
Look at the links below the heading BFS/Statistics How to Understand it.

No luck on the publishing front. I am frustrated, but I am continuing to work on it.

As always, if anyone has updates to their survey response - let me know, I can update the data in the file. I only need to know your code.
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Re: BFS Survey

Postby pbohan on September 17th, 2012, 9:40 am

We now have 254 people in the survey, the statistics have been updated on my web site through the first 246 people in the survey. Keep them coming. Thank You. No good news to report on the publication front - but will continue to try.
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Re: BFS Survey

Postby pbohan on September 19th, 2012, 1:44 pm

We have 259 people in the survey and the general statistics have been updated and loaded to my webiste.

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

Thank you for contributing.
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Re: BFS Survey

Postby pbohan on October 10th, 2012, 4:04 pm

We now have 270 participants in the survey. I have updated the general statistics file and can be obtained from my website. I have gotten a total of 16 rejection notices on trying to get this information published. I will continue to explore options.
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Re: BFS Survey

Postby pbohan on October 18th, 2012, 2:54 pm

We have 278 participants in the survey and the general static file has been updated and uploaded to my website.
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Re: BFS Survey

Postby BFSBurger on October 18th, 2012, 4:25 pm

I have a couple questions about this survey:

1) I am confused why with a question like this, the option "0" means both "Have not even tried it" and can also mean "Made it worse" . Those seem to be extremely different responses. If someone has not tried something at all, should they be grouped in with people who did try it and had more severe symptoms?

"Please rate how much any drugs, supplements, or diet changes have affected your symptoms. Enter a 0 if you have not tried anything or it made your symptoms worse. "

2) I am only 1 month into this experience so I have not really had an opportunity to try 90% of these things listed. Someone like me would really throw the curve out of whack and make the overall data skewed. Should you maybe make a criteria of some sort so that those who participate are at least equal in some manner, such as duration of symptoms?

3) Questions like this: "Altitude (less oxygen) * Anyone notice their BFS symptoms get worse at altitude? Yes = 1, No = 0" ..... the majority of people here haven't taken a recent trip to Vail Colorado while in the midst of their BFS symtpoms. So you are going to have a ton of people saying "0" ... which is equal to "No" ..... even though they simply haven't had a chance to try it out yet. That is going to mess up the resulting data as well. How about an option for "Not applicable" in all of these?

Thanks
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: BFS Survey

Postby Bosley22 on October 18th, 2012, 4:43 pm

Kevin, it's actually hilarious that you say that cause i actually have been to Vail since all this started lol. :lol:
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Re: BFS Survey

Postby pbohan on November 12th, 2012, 5:21 pm

We now have 287 participants in the survey. I have not updated the data yet. Please go to this web page to get information, data, and join the survey.

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

BFSBurger, you ask very good questions. I wish I had the information and feedback that I have now before I started the survey. I will try to address a few things about why I asked the questions the way I did - not saying it is right.

As for the first point, I wanted to find if there is correlation between potential remedies and other variables such as potential triggers, body areas affected, and symptoms. I was primarly interested in correlation that helped relieve symptoms, not make them worse. I am not using the "0" responses in any matter in my data analysis.

As for the second point, I have asked people to tell me if there has been any change in their symptoms or if they have tried other remedies. People can give me their code and I will update their response in the excel file I keep. So far, very few people have given me updates to their original response (which is obviously not good because the survey should be fluid and kept up to date - I find it hard to believe someone who answered the survey last year has not tried a new remedy).

The third point about altitude is definately true. But what I am trying to do is to find out if someone has been to altitude and if there is correlation with this and some symptoms, triggers, and remedies. My theory is that potential triggers, such as altitude, cause a new set of symptoms and body areas affected that people who have not experienced that have not been at altitude.

This probably does not do much to answer your question and there is not much I can do about the survey. It has taken me over 1.5 years to collect this data so changing the survey would be difficult at this time.
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Re: BFS Survey

Postby pbohan on November 12th, 2012, 5:21 pm

We now have 287 participants in the survey. I have not updated the data yet. Please go to this web page to get information, data, and join the survey.

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

BFSBurger, you ask very good questions. I wish I had the information and feedback that I have now before I started the survey. I will try to address a few things about why I asked the questions the way I did - not saying it is right.

As for the first point, I wanted to find if there is correlation between potential remedies and other variables such as potential triggers, body areas affected, and symptoms. I was primarly interested in correlation that helped relieve symptoms, not make them worse. I am not using the "0" responses in any matter in my data analysis.

As for the second point, I have asked people to tell me if there has been any change in their symptoms or if they have tried other remedies. People can give me their code and I will update their response in the excel file I keep. So far, very few people have given me updates to their original response (which is obviously not good because the survey should be fluid and kept up to date - I find it hard to believe someone who answered the survey last year has not tried a new remedy).

The third point about altitude is definately true. But what I am trying to do is to find out if someone has been to altitude and if there is correlation with this and some symptoms, triggers, and remedies. My theory is that potential triggers, such as altitude, cause a new set of symptoms and body areas affected that people who have not experienced that have not been at altitude.

This probably does not do much to answer your question and there is not much I can do about the survey. It has taken me over 1.5 years to collect this data so changing the survey would be difficult at this time.
pbohan
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Re: BFS Survey

Postby pbohan on November 29th, 2012, 1:45 pm

We now have 297 people in the survey and the general statistics have been updated and loaded to my website.

With the new comment section added to the survey I can address a few of them. First thank you to the person who gave me some sleep adivce whose leg twitches similar to mine as shown in the youtube video.

Magnesium is a suppliment.

Sleep may help us, but it is hard to say if our symptoms actually get better when we sleep - so I do not think to add it as a remedy.
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Re: BFS Survey

Postby pbohan on January 4th, 2013, 3:37 pm

Okay we have 305 participants but I have not yet updated the statistics. It has been nearly 3 weeks since the last person entered the survey - so the results are slowing down. Hopefully this is just because of the holidays, it would be great to meet our goal of at least 384 participants no including data outliers.

Sorry for the long time out, but been real busy. I hope everyone enjoyed a happy and safe holiday season.
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Re: BFS Survey

Postby aztwitchy on January 4th, 2013, 7:54 pm

added my input phoban
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: BFS Survey

Postby pbohan on January 12th, 2013, 1:23 pm

We have 309 participants in the survey. I have updated the general statistics and added them to my website. I have also updated the article "BFS Medical Paper" and added a discussion on Mycoplasma. I also added an article on Mycoplasma and BFS from a personal experience.

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

Thank you all for the comments. To comment on a few - Paraesthsia symptoms I would break down as a combination of symptoms I post such as pins and needles, numbness, etc. Gatorade I would classify as a suppliment. Yes, alcohol use is an oversight on my part. As for the RN, I think most of the Neuro's think we are nuts.
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Re: BFS Survey

Postby pbohan on February 6th, 2013, 2:37 pm

There are now 321 participants in the survey. Thank you for your involvement. I have not updated any of the statistics since we hit 309 participants. Keep the inputs coming, our sample size is becoming very significant.
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