BFS Survey

[pbohan]

We have 155 participants in the survey. The BFS paper still has not been accepted by a journal - we can only submit to one journal at a time and it can take several weeks to hear back. In other words, it is a long process.

[pbohan]

We now have 159 participants. I have no updates on the article, it is currently being reviewed by our third journal choice. The data and statistics has been updated on my web page. Thank You all. Remember, if you have updates to your survey information you filled out over the past year, let me know, I can update the information for you.

[pbohan]

We have 160 participants and the data has been updated. Important, I have moved my web site to the following location:

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

I needed more space to store documents.

Our medical article was just rejected by our 3rd submission, but we got a lot of feedback. Mitra and I will try to take this feedback, update the article and try again.

[raindog]

Very professional and thorough piece of work, travesty that this cant get the recognition it deserves.

[pbohan]

Thanks Raindog. We will keep trying.

We now have 163 people in the survey. I just finished recompiling all the data including the models and this information is up on the website. This will force us to make some updates to the article which should be available soon.

[Randal]

Hi My names is Randy and i live in puerto rico, so my english is very poor. I answered the survey but i want to suggest the following questions to be added to the survey

Do u have tremors? if so, where? arms, hands, face
Di the fasciculation started after a seizure? my case
Do u have involuntary movements like jerks? feet, hands, torso


My island is in none of those places, so i coulndt answer correctly that question.

[pbohan]

Hi Randy,

Your English is very good. We now have 167 people in the survey - thank you for joining. At this point it would be hard to update the survey - April 17th would be one year. However, over 20% of the people in the survey claim something not in the survey triggered their symptoms. From reading the forum this could be anyone of a number of things such as substance abuse - which can cause seizures. I am sure epilespy is a cause. I also know many people (most with limited success) use anti-seizure medications for BFS. It therefore, seems locical that siezures could cause exasperated BFS symptoms (ie. jerking instead of simple small muscle fiber twitching). I have read many forum threads where people have jerking and other extreme symptoms, so this does happen. You may want to create your own topic and see what response you get.

[pbohan]

Almost 1 year since the survey was put in place and we have 173 participants (almost 1 participants every 2 days!). Thank you all. The latest data has been uploaded to my web site. No new news on getting this information published. It is a long process. Keep the responses coming.

[lynxminx]

You should change the verbiage on a number of these questions. The most significant to me being "did you develop symptoms after a flu shot?" I developed mine after a different kind of vaccination (tetanus), so I could not answer yes. But there would be value in grouping all vaccination-related cases in the same category.

[pbohan]

We now have 178 people in the survey and the data has been uploaded to my website.

Good point about the flu shot question. I will change it. What is your code number, I will update the data?

[tacitus]

I just took the survey, though I'm not sure how useful, scientifically, a self-conducted internet survey is. Still there is no harm in trying, so I applaud you for making the effort.

A couple of observations:

1. Question about cause of the onset -- there is certainly no harm in asking the question, but the usefulness of the answers must be highly suspect. It's hard enough for people to gauge how they feel right now, let alone try to remember when their symptoms first came on and what a proximal cause might be. We have seen from all the fuss over the causes of autism, and the general (unwarranted) backlash against vaccines, that people are very good at making connections that often don't exist when you study them scientifically. With mild chronic conditions like BFS, it's likely that people had some level of symptoms for weeks, even months before they noticed, so I would be highly skeptical, for example, of someone saying that a single event, like a flu shot, brought it on. (I understand that people do make such connections because one event happens right after the other, I just don't know if there is anything that can be concluded from the observations since if enough people have a yearly flu shot, at least 5% of them will always discover medical symptoms soon afterwards.)

2. Homeopathy and herbal remedies are not the same thing - at all. Herbal remedies typically have measurable levels of the natural substance in them -- i.e. a St. John's Wort pill will actually have 300mg St. John's Wort in it, and there is a chance that it may have some kind of effect on the body. Homeopathic remedies, on the other hand, do not. Homeopathy theorizes that the more you dilute a substance, the more powerful the effect on the body is, and typical dilutions are the equivalent of taking a single dose of aspirin (for example) and dropping it in a body of water the size of Lake Michigan. The remedies are so dilute that there is a good chance there isn't a single molecule of the original substance left in the dose you take. As you can well imagine, most people are highly skeptical that anything that dilute can do achieve anything at all. But even if you do believe in homeopathy, I think you really should distinguish between "natural" and "homeopathic" since they are not the same thing (though homeopaths would like you to believe they are.)

Anyway, good luck with the survey.

[pbohan]

We now have 182 people in the survey but I have not updated the data yet. Keep the responses coming. Thus far we have not had any luck with publishing the report - this is not surprising since I am not a doctor and as the previous person posted it is highly skeptical that an internet survey is scientific.

The main objective of the survey is to help BFS suferers feel at ease because they can see countless others going through the disorder. The other objective is to try to bring more attention to the disorder.

Anytime people fill out a survey it is highly subjective because each person has their own beliefs about how bad they have the disorder. As with any survey and mathematical analysis the person conducting it must ask if the data makes sense. The larger the sample the more we can clear out bad responses that were not eliminated by 3 sigma analysis of each question. I do know that much of the correlation makes sense - women are more likely to take yoga etc. However, I have seen responses from individuals that do not make sense such as individuals claiming a remedy helps them ranks as a 6, 7, or 8 but claim that their symptoms are still a 10. These responses do not pass the eye test. I would expect responses to be inversely proportional hence a remedy that is 8 would yield symptoms that are a 2. But once again I try to eliminate outliers.

Many studies that come out are unfortanately dependent on how individuals fill out surveys or ask questions. I saw a recent study on Parkinson's Disease saying that people who were less likely to take risks had more of a chance in getting Parkinson's disease. The theory is that risky people tend to generate more dopamine. 60% of the people they questioned claimed to take less risks had Parkinson's, but still 40% of those taking risks still got Parkinson's - not very conclusive to me. Why? people considered taking risks were people who drove fast and did not wear seatbelts - this to me is not really risky. Besides, can we conclude with absolute certainty that people who answered the questions were self aware and were honest? No, so much I read about in scientific studies is subjective and dependent on individual survey or questionnaire responses.

Good point about herbal and homepathic treatments. However, the data shows that no remedies have been very successful in reducing symptoms, so I do not think the data is skewed because both have such low success rates even when they are combined.

[Yuliasir]

I am trying to input everywhere hope it is not annoying yet but what I know from my med translations is that anyway people taking part in CIs go through so called quality of life surveys, and there are a lot of them, well modelled and well respected. And they are also subjective of course because people gauge their own conditions, like level of anxiety ( I think there are 5 to 10 well respected scales to do it), level of pains (At least 5 different I think, well developed for rheumathoid artritis patiens, for example), etc.

so my general ideas are: we might probably adopt existing survey forms/scales (if they are publicly available) to meausre at least quality of life, anxiety level and level/intensity of pains or other unpleasant sensations, so it will improve our scientific approach part. it would make survey more staged and complicated, but improve it reliability in terms of using well known medical scales.

as for the rest - I feel the more info we can collect about general health status of BFS sufferes, the more helpful it would be anyway, as the picture would became clearer and clearer.

Finally, there are anyway two ways to gauge our conditions - external (exams, bloodworks, visualisation methods etc.) reveal certain conditions or their absence. But there is no meter to gauge happiness, intensity of twitches or pains, or anxiety level. That should be judged on the basis of our own response. Comparison of those two data arrays might be also useful in terms of clarifying what is BFS and how much it sucks sometimes and what to do with it.

anyway Patric i think you a doing great job for all of us.

[pbohan]

Actually, I appreciate the feedback - it is not at all annoying. I am up for any ideas to improve the survey. That being said, it is hard to change the current survey at this point because we have 183 people in it. If we make big changes to the survey then we will have to start over collecting the feedback. However, if someone can help generate a better survey that is more accurate in collecting information, I will compute the data from the survey.

Based on your feedback I did surf the internet looking for ideas on improving the survey accuracy and did not find anything that I thought would make a big difference - but I am sure something exists.

I hope the information is somewhat helpful.

[Yuliasir]

Hi Patric
here there are some references to health related quality of life surveys, maybe it would be of certain sence
http://www.healthmeasurement.org/Measures.html

here is a reference to DASS (depression anxiety stress survey) which also might be useful (because BFS people have all three issues, often combined)

http://www2.psy.unsw.edu.au/groups/dass/

and here are some info about pain assessment tools which probably might be useful or might be not very because not all of us feel pains

http://pain.about.com/od/testingdiagnos ... -Scale.htm

I provide those references only in order to show what kind of scales I had in mind (those to be accepted by any medical journal), and of course I understand that if any one has to be adopted, that would mean that all survey data should be gathered anew..

anyway I believe you are doing great job collecting all that stats.

my best regards
Yulia