BFS Survey

[pbohan]

We now have 120 participants. Please go to my web page (link in previous posts on this topic) to pull down the latest data. Remember, I plan to close this survey in 23 days (October 15th). It will take me at least a week to crunch all the data after the survey closes.

[pbohan]

We still have 120 participant. I will close the survey in 17 days. I have been updating my data files with more data and information explanating the data. Go to my BFS website at: http://patrickbohan.home.bresnan.net/BFS.htm and pull down the latest Survey Data and Explanation of BFS Excel Data files to see the updates. Mike Robison also gave me a statistical averages summary of the data that is included on the site. Thank You

[pbohan]

We have 123 participants in the BFS Survey. I will close the survey next Friday. I will keep the survey open indefinately, but the survey will be closed if you want to be included in the data analysis. I may do another data analysis if the sample size grows significantly over time. I have been updating my data files with more data and information explanating the data. Go to my BFS website at: http://patrickbohan.home.bresnan.net/BFS.htm and pull down the latest Survey Data and Explanation of BFS Excel Data files to see the updates. Mike Robison also gave me a statistical averages summary of the data that is included on the site. You can also pull down the survey from the above page. Per a request, I will try to get the study published (probably will be hard to do). I have placed a technical paper on the study on my website (needs to be updated with data results - in some cases I put in old data as place holders) for everyone to view. If you proof read it, I will include you in the authors list, but I will need contact information. This paper is a good reference to understand the results of the survey.

[bobajojo]

Patrick,
I think I can speak for everyone when I say THANK YOU for all the work you've put in. You're probably doing more than the entire medical community combined as far as trying to find some answers about BFS.
-Matt

[pbohan]

This is the final reminder, if you want to be part of the BFS statistical survey please get your results in no later than this Thursday. If anyone wants to update a response on the survey, they can email me with the update (or you can post the update on this site along with your data code - the last 5 digits of your phone number so I can line up the data). I will keep the survey up longer to continue to gain data. The data will be updated periodically, but no new models will be run unless we get a significant higher number of responses. You can reach the survey and data results from my BFS website: http://patrickbohan.home.bresnan.net/BFS.htm. My email is also on the this web page. It may take a few weeks for me to finish the study.

Matt - Thank You for the kind words. I just hope when it is done it will be useful to us all.

[Malnory]

Patrick,
It is quite wonderful that you are doing this. I agree you are doing more to investigate our experience than anyone, it appears. And all without an NiH grant or years in waiting. Brilliant.

[pbohan]

Okay, I started crunching the data today - got a full day in and got about 1/3 done - so I got a little heard start. We have 125 people in the survey. It will probably take at least another 5 days to finish things off - if nothing else comes up (hopefully, including the write up). I have only been crunching data - not looking at the results yet.

Thanks for the kind words - but maybe we should wait on the compliments until after the study is complete. I think the study will at least help alleviate some of our worries - and hopefully that leads to lower symptoms.

[pbohan]

I have finished crunching and posting the data. Go to my web site: http://patrickbohan.home.bresnan.net/BFS.htm and click on the file called "Technical Paper on BFS Survey Results" (this explains the data). You can find a data results by clicking on the link "Survey Data". If you want to see even more detailed data you can click on the "Statistical Data Summary" link. The excel file with all 330 model simulations was too big to fit on my web page, but I can email it to anyone who wants it. All of this data is explained in the paper. Let me know what you think.

Per a suggestion, I will attempt to submit the article for publication, but I am not holding my breathe. We'll see where that goes.

I am keeping the survey open to continue to pull more data. If we get another 100 people or so I could redo the data, but will update the data when I can. I think we all can learn alot by the data we analysed - even though there is no "smoking gun" to pin point a cure.

[pbohan]

The survey is still open, so it is not too late to join. We have 126 participants (1 more since I released data). Also, if anyone has updates to their survey responses (anything except age, years diagnosed, years with symptoms) such as you tried a new remedy or symptom changes you can let me know your "code number" (last 4 or 5 digits of your phone number) and the updated data and I will update the data in the spreadsheet. You can leave a message on this forum or send me an email at [email protected] with the information that needs to be updated.

I have no further updates on the statistical analysis being accepted by any medical journals - but I did submit the study to a few. It is probably a long shot, but we have nothing to lose.

[pbohan]

Just a quick update. We have 128 participants and the survey is still open. I have not had any luck in getting the results of the first 125 participants published and am working on rewriting the document with the help of another BFS sufferer. Remember, if you have any updates you want to make to your responses in the survey you can send them to me at [email protected]. And of course, if you have any questions about the results, please do not hesitate to contact me. Take care for now.

[pbohan]

Hey All, we now have 130 people in the survey. Keep the responses coming and please send me any updates to your survey (symptom change, tried a new remedy etc.). I have updated the latest data to my BFS site. I did not run new models, I only updated the general statistics: mean, standard deviations, etc. I also added a new catagory called generalized. The generalized statistic can be a number from 0 to 10 and the lower the number the more generalized the symptoms are for each person. A higher number means a persons symptoms are more localized. As you can see, most of have symptoms that are generalized.

[pbohan]

We are up to 133 particpants in the survey, thanks for participating and keep them coming. Remember, please send me any updates to your survey and I will correct them in the survey. I am close to finishing a technical paper (based on the first 125 particpants - but it can be amended if we get a much larger sample size) that I will submit for publication - which is long shot, but we got nothing to lose. I did submit a paper with results (statistical analysis that it is on my web site) and no thesis and it got rejected. So now I am retrying with a hypothesis or thesis to see if it gets any interest. My thesis is that there are different types of BFS with unique symptoms depending upon what triggered the disorder (vaccine, prescription drugs, stress, exercise, history, illness, spine injury, chemicals, or other). Hopefully, we can get some exposure for the disorder and then maybe a little more attention.

[pbohan]

We not have 135 participants and I have updated the data and uploaded it to my website. http://patrickbohan.home.bresnan.net/BFS.htm. If you have not already done so, please participate in the survey. Please let me know if you have any updates to the responses you previously supplied to the survey.
I am still working on a document to be submitted to medical journals for publication. I hope to have that complete soon.

[pbohan]

Here is an intersting article that was forwarded to me by a BFS sufferer: http://articles.mercola.com/sites/artic ... _DNL_art_1

[pbohan]

We now have 138 participants in the survey - keep them coming, it is never to late to statistical analyze BFS!