Compiling Data from Essential Oil Use

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LouLou

New member
I was thinking that with so many of us trying this oil of oregano thing out with or without additional oils. I thought it would be good to start keeping track of some of the data - qualitative and quantitative. I'd be willing to put together some sort of simple system - Q/A, Excel spreadsheet, etc. and keep populating it as people send me info. Is this something that people would be willing to participate in? Sean, since you're the OO guy if you'd rather be doing this that would be fine too...maybe you already are?! I would like to take suggestions from you all for what data to record or other suggestions you might have.

I talked with someone who works in the research department of University of Pennsylvania (Penn) yesterday and she said that pharmaceutical companies as well as individual doctors come to them with requests for clinical trials on findings they have. The mention of doctors suprised me a bit. I was thinking that along with Sean's research on OO and this 'mini patient study' (even though it would be ghetto compared to what real clinical trials are like) some doctor could really latch onto it and push it through to more professional research levels. Would it have value? Do any of you have any experience in anything like this? Maybe those that have been involved with FDA clinical trials have some knowledge to share. Of course, we wouldn't be asking anyone to participate only those that independently decide to take OO and participate in this because no one can be sure of the effect of these oils on our bodies. How do the FDA deal with that by the way? Do they make participants sign something that says the health benefits or negative effects are unknown for the ABC drug. You are entering this agreement with possible risks under your own free will. I could see them making some sort of statement like that so they don't get sued. I don't want to get into that sort of mess at all. Thoughts?
 
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LouLou

New member
I was thinking that with so many of us trying this oil of oregano thing out with or without additional oils. I thought it would be good to start keeping track of some of the data - qualitative and quantitative. I'd be willing to put together some sort of simple system - Q/A, Excel spreadsheet, etc. and keep populating it as people send me info. Is this something that people would be willing to participate in? Sean, since you're the OO guy if you'd rather be doing this that would be fine too...maybe you already are?! I would like to take suggestions from you all for what data to record or other suggestions you might have.

I talked with someone who works in the research department of University of Pennsylvania (Penn) yesterday and she said that pharmaceutical companies as well as individual doctors come to them with requests for clinical trials on findings they have. The mention of doctors suprised me a bit. I was thinking that along with Sean's research on OO and this 'mini patient study' (even though it would be ghetto compared to what real clinical trials are like) some doctor could really latch onto it and push it through to more professional research levels. Would it have value? Do any of you have any experience in anything like this? Maybe those that have been involved with FDA clinical trials have some knowledge to share. Of course, we wouldn't be asking anyone to participate only those that independently decide to take OO and participate in this because no one can be sure of the effect of these oils on our bodies. How do the FDA deal with that by the way? Do they make participants sign something that says the health benefits or negative effects are unknown for the ABC drug. You are entering this agreement with possible risks under your own free will. I could see them making some sort of statement like that so they don't get sued. I don't want to get into that sort of mess at all. Thoughts?
 
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thelizardqueen

New member
I think getting some sort of spreadsheet together is a great idea. Finding out just how much people are using, etc would give us an idea of what is working better for some, etc.
 
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thelizardqueen

New member
I think getting some sort of spreadsheet together is a great idea. Finding out just how much people are using, etc would give us an idea of what is working better for some, etc.
 
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AngieM

New member
Hi. You read my mind. I was just thinking that it would be great to compile all the results of how people are doing who have started the Oregeno Oil. I find myself "surfing" all over forums to see how people are doing on the oils. I have been in contact with a friend who has a contact in the CFF. She is interested in this OO.... all the data that could be compiled the better. Would be nice to see CFF do a clinical study on OO! I would think a list of data, including FEV 1 before and after, Doctor and CF Clinic they go to etc. would be great.... so info. can also be checked with that persons Doctor. I hope people are willing to participate.

Angie
 
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AngieM

New member
Hi. You read my mind. I was just thinking that it would be great to compile all the results of how people are doing who have started the Oregeno Oil. I find myself "surfing" all over forums to see how people are doing on the oils. I have been in contact with a friend who has a contact in the CFF. She is interested in this OO.... all the data that could be compiled the better. Would be nice to see CFF do a clinical study on OO! I would think a list of data, including FEV 1 before and after, Doctor and CF Clinic they go to etc. would be great.... so info. can also be checked with that persons Doctor. I hope people are willing to participate.

Angie
 
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skh

Guest
Great idea! I just order the facial sauna from target.com last night and will be ordering the oil of oregano today. I am hoping to not only have my daughter with CF start this but my daughter and granddaughter who have sinus problems I think will benefit from this also.

Once I receive the facial sauna and oil I will let you know the details so you can log it. Thanks for being willing to take this on.

Sue
 
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skh

Guest
Great idea! I just order the facial sauna from target.com last night and will be ordering the oil of oregano today. I am hoping to not only have my daughter with CF start this but my daughter and granddaughter who have sinus problems I think will benefit from this also.

Once I receive the facial sauna and oil I will let you know the details so you can log it. Thanks for being willing to take this on.

Sue
 
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anonymous

New member
Great Idea

I would write up the name of the product, experiences, download people's before and after PFT's and tell each doctor what exactly you are doing, How much you take, time of the day, amount of sputum coughed up, sputum test results before and after. There might be weight gain too (less production of mucus) people's oxygen saturation and whatever I am missing.

I see this working as a group effort in the beginning and then having a few doctors take this to the CFF for further research.

FRom what I have seen with natural remedies there are many beneficial and natural supplements that really work.

Why not contact the administration of this site and ask her to make you a link where you can discuss natural remedies. Post an article too how you thought about it and why you are taking it and the results. Have a link connected to the article taking you to the link on this site where there is a discussion.

Good luck and I hope you all can put an end to CF or at least make it so there is a long life to live

Sincerely
Risa
 
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anonymous

New member
Great Idea

I would write up the name of the product, experiences, download people's before and after PFT's and tell each doctor what exactly you are doing, How much you take, time of the day, amount of sputum coughed up, sputum test results before and after. There might be weight gain too (less production of mucus) people's oxygen saturation and whatever I am missing.

I see this working as a group effort in the beginning and then having a few doctors take this to the CFF for further research.

FRom what I have seen with natural remedies there are many beneficial and natural supplements that really work.

Why not contact the administration of this site and ask her to make you a link where you can discuss natural remedies. Post an article too how you thought about it and why you are taking it and the results. Have a link connected to the article taking you to the link on this site where there is a discussion.

Good luck and I hope you all can put an end to CF or at least make it so there is a long life to live

Sincerely
Risa
 
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michellerose

New member
Yes i agree i think it is a great idea, somewhere where we can all look at to see what works etc. Im up for it and i just had my OO oil delivered today so am starting using it today. I know what my lung functions and SATS etc are now so will be good to see whether they improve over coming weeks!

Michelle 19/cf/cfrd
 
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michellerose

New member
Yes i agree i think it is a great idea, somewhere where we can all look at to see what works etc. Im up for it and i just had my OO oil delivered today so am starting using it today. I know what my lung functions and SATS etc are now so will be good to see whether they improve over coming weeks!

Michelle 19/cf/cfrd
 
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Faust

New member
For those who are interested, myself and the admin of this site have been discussing things for a little while now, and this among other things are in our plans. We feel it will help the site, get the word out, and be a good reference point for others to sift through the real patient use reports and the other research information all over the net. I used to mess with spreadsheets way back when, but don't have one now and probably wouldn't know how to operate one if I did have one.


I could work on a general FAQ regarding the oil based on what I see asked her so often, and also supply a temporary stickied thread at the top with the information that I have found, and then when we have enough patients (myself included) who have been on the oil atleast a month, and hopefully have a before and after reference point PFT/culture wise/doctor visit to go on, we can start compiling that information from the patients, with any comments they might have to add to the project.


I kind of have a few things on my plate right now, but I would be able to have the time to share my personal information regarding my current and previous health after and before the oils useage, my PFT's etc (still havent gotten the news back on my culture, but that is open for sharing when I do), and also the FAQ, and link as much research information as I can find.


Let me know if any aspiring spreadsheet people want to put some of the elbow grease into this project. I personally know for a fact that the oils work incredibly well, but just like with anything natural, you have to know what to use and in what amounts. As it is now, there use in general is just a try and see approach, and people are using a trial and error method to see what works best for them, in what dosege, and which way to administer it.
 
F

Faust

New member
For those who are interested, myself and the admin of this site have been discussing things for a little while now, and this among other things are in our plans. We feel it will help the site, get the word out, and be a good reference point for others to sift through the real patient use reports and the other research information all over the net. I used to mess with spreadsheets way back when, but don't have one now and probably wouldn't know how to operate one if I did have one.


I could work on a general FAQ regarding the oil based on what I see asked her so often, and also supply a temporary stickied thread at the top with the information that I have found, and then when we have enough patients (myself included) who have been on the oil atleast a month, and hopefully have a before and after reference point PFT/culture wise/doctor visit to go on, we can start compiling that information from the patients, with any comments they might have to add to the project.


I kind of have a few things on my plate right now, but I would be able to have the time to share my personal information regarding my current and previous health after and before the oils useage, my PFT's etc (still havent gotten the news back on my culture, but that is open for sharing when I do), and also the FAQ, and link as much research information as I can find.


Let me know if any aspiring spreadsheet people want to put some of the elbow grease into this project. I personally know for a fact that the oils work incredibly well, but just like with anything natural, you have to know what to use and in what amounts. As it is now, there use in general is just a try and see approach, and people are using a trial and error method to see what works best for them, in what dosege, and which way to administer it.
 
L

LouLou

New member
It's great to hear about the excitement from everyone on this matter. I feel it would be good to begin data collection ASAP so that details don't get lost (such as the exact start dates, etc.)

Sean if you could do the FAQ area of the site I think that would be a tremendous help to people who do not have the time or knowledge to surf for it. It would also save you the time of repeating as much as you have over and over. I would be happy to collect the data and put it into a file type that the webmaster could publish periodically. I know quite a few programs and am always willing to learn something new.

I think there will be things such as weight questions, sputum amounts that we might get more accurate results on if people don't feel pressured to publish publicly (rather private email). We can work together on creating a list of questions for which I have already done some work on. I'm thinking I could make an editable .pdf that people could download from the natural therapy section, fill in and and email to me. I'd re-enter this info into a spreadsheet so that all data is in one document and things like averages, etc. can be deduced.

Sound good?

Had you or the admin. been especially interested in doing the data collection? If not, I'd be happy to. That being said I have never done this and have no idea how much work is entailed but have a fair amount of time to dedicate to this.

So, maybe you'd post research links and keep up with 'oils in the news'and general FAQ - The admin. would post and manages all your findings and my report to the natural therapy (or what ever it is called) portion of the site - I would collect data and feed it to admin.

Is the admin. also the webmaster for this site?
 
L

LouLou

New member
It's great to hear about the excitement from everyone on this matter. I feel it would be good to begin data collection ASAP so that details don't get lost (such as the exact start dates, etc.)

Sean if you could do the FAQ area of the site I think that would be a tremendous help to people who do not have the time or knowledge to surf for it. It would also save you the time of repeating as much as you have over and over. I would be happy to collect the data and put it into a file type that the webmaster could publish periodically. I know quite a few programs and am always willing to learn something new.

I think there will be things such as weight questions, sputum amounts that we might get more accurate results on if people don't feel pressured to publish publicly (rather private email). We can work together on creating a list of questions for which I have already done some work on. I'm thinking I could make an editable .pdf that people could download from the natural therapy section, fill in and and email to me. I'd re-enter this info into a spreadsheet so that all data is in one document and things like averages, etc. can be deduced.

Sound good?

Had you or the admin. been especially interested in doing the data collection? If not, I'd be happy to. That being said I have never done this and have no idea how much work is entailed but have a fair amount of time to dedicate to this.

So, maybe you'd post research links and keep up with 'oils in the news'and general FAQ - The admin. would post and manages all your findings and my report to the natural therapy (or what ever it is called) portion of the site - I would collect data and feed it to admin.

Is the admin. also the webmaster for this site?
 
F

Faust

New member
I am currently in the process of creating a rough draft survey of the oil and it's use amongst the community here. That will be gone over and disseminated by the admin and others, and then plan on having something linkable before too long, preferably early next week if all goes well. We have some big plans, and want to really help boost awareness of different substances that might be good options for CF patients to look into to help their disease.
 
F

Faust

New member
I am currently in the process of creating a rough draft survey of the oil and it's use amongst the community here. That will be gone over and disseminated by the admin and others, and then plan on having something linkable before too long, preferably early next week if all goes well. We have some big plans, and want to really help boost awareness of different substances that might be good options for CF patients to look into to help their disease.
 
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