Cystic Fibrosis University project and Website, comments/opinions

C

CFstudent

New member
I think we are getting into an argument in semantics here,

I understand you feel strongly, and agree with you, I'm changing the wording and adding a disclaimer stating that a lot of what we have under comp/alternative medicine are in fact "proven" treatments and some of the main treatments used in CF treatment.

We're simpy trying to provide information on a variety of treatment strategies that really work, I think that the terminology is unfortunate, and hope it doesn't get in the way of the message.

I hope I haven't offended you, or anyone else, for that matter, I was only seeking to get some feedback and assistance. I obviously do not have the expertise and knowledge in this field that you do, hence me coming here for help. I will check out those websites you have listed, and am thankful for the resources.

Perhaps it was a mistake, sorry for offending anyone.
 
C

Chaggie

New member
Don't take it personally. We just get protective of about the perceptions of CF and information that is being passed.
 
C

Chaggie

New member
Don't take it personally. We just get protective of about the perceptions of CF and information that is being passed.
 
C

Chaggie

New member
Don't take it personally. We just get protective of about the perceptions of CF and information that is being passed.
 
J

JRPandTJP

New member
This was meant as constructive criticism not anything more. Often when you are in the middle of a project and haven't had the chance to look at it from the "audience's" standpoint, what you hope you've created and how it is actually perceived can be different. That's all. We as parents know what we needed when we were first diagnosed and we are immeshed in the research and knowledge base, therefore are happy to offer learning opportunities to students and those wishing to help.

If you want to help you must be willing to see it from our perspective, that's all. Otherwise you are creating what you feel is needed, not what is actually needed.
 
J

JRPandTJP

New member
This was meant as constructive criticism not anything more. Often when you are in the middle of a project and haven't had the chance to look at it from the "audience's" standpoint, what you hope you've created and how it is actually perceived can be different. That's all. We as parents know what we needed when we were first diagnosed and we are immeshed in the research and knowledge base, therefore are happy to offer learning opportunities to students and those wishing to help.

If you want to help you must be willing to see it from our perspective, that's all. Otherwise you are creating what you feel is needed, not what is actually needed.
 
J

JRPandTJP

New member
This was meant as constructive criticism not anything more. Often when you are in the middle of a project and haven't had the chance to look at it from the "audience's" standpoint, what you hope you've created and how it is actually perceived can be different. That's all. We as parents know what we needed when we were first diagnosed and we are immeshed in the research and knowledge base, therefore are happy to offer learning opportunities to students and those wishing to help.

If you want to help you must be willing to see it from our perspective, that's all. Otherwise you are creating what you feel is needed, not what is actually needed.
 
C

CFstudent

New member
I really do appreciate the info guys, another thing to keep in mind is that I'm trying to coordinate info from 4 other people. Also I think it's important to note that the Primary Research Journal articles often do not agree with what is widely considered "proven".

It's important to check your resources, for example that sharktank.org site while looking very flashy and impressive, if you read the about the site: "...<span class="FTHighlightFont">The remedies for cystic fibrosis mentioned on this site are hypothetical and untested</span ft>..." I'd be very leary of a site that on one section has therapeutic doses, and on another has that statement.

I had previously read the GSH pathway hypotheses as well, there are so many proposed pathological pathways I wanted to focus more on current widely used treatment options.

Also in no way is this meant to be a complete and in depth resource, just kind of a first read, and base. I'll reiterate that on the site as well and emphasize the importance of the more in depth links.

Not sure if you'd feel comfortable with me throwing a link to your site or not, if you are I will, if not that's fine too.

Thanks guys.

I've forwarded your links to the people in my group responsible for the Comp&Alt and WSM sections!
 
C

CFstudent

New member
I really do appreciate the info guys, another thing to keep in mind is that I'm trying to coordinate info from 4 other people. Also I think it's important to note that the Primary Research Journal articles often do not agree with what is widely considered "proven".

It's important to check your resources, for example that sharktank.org site while looking very flashy and impressive, if you read the about the site: "...<span class="FTHighlightFont">The remedies for cystic fibrosis mentioned on this site are hypothetical and untested</span ft>..." I'd be very leary of a site that on one section has therapeutic doses, and on another has that statement.

I had previously read the GSH pathway hypotheses as well, there are so many proposed pathological pathways I wanted to focus more on current widely used treatment options.

Also in no way is this meant to be a complete and in depth resource, just kind of a first read, and base. I'll reiterate that on the site as well and emphasize the importance of the more in depth links.

Not sure if you'd feel comfortable with me throwing a link to your site or not, if you are I will, if not that's fine too.

Thanks guys.

I've forwarded your links to the people in my group responsible for the Comp&Alt and WSM sections!
 
C

CFstudent

New member
I really do appreciate the info guys, another thing to keep in mind is that I'm trying to coordinate info from 4 other people. Also I think it's important to note that the Primary Research Journal articles often do not agree with what is widely considered "proven".

It's important to check your resources, for example that sharktank.org site while looking very flashy and impressive, if you read the about the site: "...<span class="FTHighlightFont">The remedies for cystic fibrosis mentioned on this site are hypothetical and untested</span ft>..." I'd be very leary of a site that on one section has therapeutic doses, and on another has that statement.

I had previously read the GSH pathway hypotheses as well, there are so many proposed pathological pathways I wanted to focus more on current widely used treatment options.

Also in no way is this meant to be a complete and in depth resource, just kind of a first read, and base. I'll reiterate that on the site as well and emphasize the importance of the more in depth links.

Not sure if you'd feel comfortable with me throwing a link to your site or not, if you are I will, if not that's fine too.

Thanks guys.

I've forwarded your links to the people in my group responsible for the Comp&Alt and WSM sections!
 
J

JRPandTJP

New member
I remember well working as a group in college. It is a dance indeed.

I don't see this statement as something to be leary of...it is simply making sure that people know to discuss things with their doctors. It is no different than making sure you tell your doctor that you're taking glucosmine for joint pain and echinacea for immune support. It is simply a reminder to use common sense when combineing approaches or trying new things. It is important to make these statements in a letigious society such as ours. That's how I look at it at least.

We don't consider Primary Research Journals as the deciding body of evidence where our son's health is concerned. It is ONE of them, as are his CF doctors, our naturopathic/homeopathic MDs and multiple other sources. See, when you have a child with a progressive, genetic disorder, you can't afford to close yourself off to just one way of looking at things. I really hope the CF care practices begin to embrace eastern modalities and complimentary therapies as time goes on...these systems are 5000 years old and still work..can't ignore that as "proven" :)

I think if you change things a bit, your site is a good "first read" about the disease. Passing along other links and even specific abstracts could be a wonderful way of helping people go deeper. You are welcome to make a link.

Again, just know this is how I see things as a parent and I think anyone trying to learn about CF and help is whole-heartedly welcomed and appreciated in my book. I hope you go on to do great things! Best of luck and let us know when you've finished.

Warmly,
Jody
 
J

JRPandTJP

New member
I remember well working as a group in college. It is a dance indeed.

I don't see this statement as something to be leary of...it is simply making sure that people know to discuss things with their doctors. It is no different than making sure you tell your doctor that you're taking glucosmine for joint pain and echinacea for immune support. It is simply a reminder to use common sense when combineing approaches or trying new things. It is important to make these statements in a letigious society such as ours. That's how I look at it at least.

We don't consider Primary Research Journals as the deciding body of evidence where our son's health is concerned. It is ONE of them, as are his CF doctors, our naturopathic/homeopathic MDs and multiple other sources. See, when you have a child with a progressive, genetic disorder, you can't afford to close yourself off to just one way of looking at things. I really hope the CF care practices begin to embrace eastern modalities and complimentary therapies as time goes on...these systems are 5000 years old and still work..can't ignore that as "proven" :)

I think if you change things a bit, your site is a good "first read" about the disease. Passing along other links and even specific abstracts could be a wonderful way of helping people go deeper. You are welcome to make a link.

Again, just know this is how I see things as a parent and I think anyone trying to learn about CF and help is whole-heartedly welcomed and appreciated in my book. I hope you go on to do great things! Best of luck and let us know when you've finished.

Warmly,
Jody
 
J

JRPandTJP

New member
I remember well working as a group in college. It is a dance indeed.

I don't see this statement as something to be leary of...it is simply making sure that people know to discuss things with their doctors. It is no different than making sure you tell your doctor that you're taking glucosmine for joint pain and echinacea for immune support. It is simply a reminder to use common sense when combineing approaches or trying new things. It is important to make these statements in a letigious society such as ours. That's how I look at it at least.

We don't consider Primary Research Journals as the deciding body of evidence where our son's health is concerned. It is ONE of them, as are his CF doctors, our naturopathic/homeopathic MDs and multiple other sources. See, when you have a child with a progressive, genetic disorder, you can't afford to close yourself off to just one way of looking at things. I really hope the CF care practices begin to embrace eastern modalities and complimentary therapies as time goes on...these systems are 5000 years old and still work..can't ignore that as "proven" :)

I think if you change things a bit, your site is a good "first read" about the disease. Passing along other links and even specific abstracts could be a wonderful way of helping people go deeper. You are welcome to make a link.

Again, just know this is how I see things as a parent and I think anyone trying to learn about CF and help is whole-heartedly welcomed and appreciated in my book. I hope you go on to do great things! Best of luck and let us know when you've finished.

Warmly,
Jody
 
C

CFstudent

New member
Jody,

You obviously have an immense knowledge on this subject and it has been quite the eye opener hearing from you. I also put the site out on the Canadian Cystic Fibrosis Foundation's listserve, and it really is amazing what you learn by talking to people who are really "in the know" with what works.

Also the perspective you get is amazing, I've been somewhat "consumed" by this project, it seems like it's not just school anymore! Probably a blessing and a curse since I have 4 other classes to worry about <img src="i/expressions/face-icon-small-smile.gif" border="0">

The difference between reading some third party info on the net and speaking to people going through all of this is astounding. I definitely think we need some info on naturopathic/homeopathic treatments up there, amongst a zillion other things that we don't have.

Just wanted to thank you again,
Craig
 
C

CFstudent

New member
Jody,

You obviously have an immense knowledge on this subject and it has been quite the eye opener hearing from you. I also put the site out on the Canadian Cystic Fibrosis Foundation's listserve, and it really is amazing what you learn by talking to people who are really "in the know" with what works.

Also the perspective you get is amazing, I've been somewhat "consumed" by this project, it seems like it's not just school anymore! Probably a blessing and a curse since I have 4 other classes to worry about <img src="i/expressions/face-icon-small-smile.gif" border="0">

The difference between reading some third party info on the net and speaking to people going through all of this is astounding. I definitely think we need some info on naturopathic/homeopathic treatments up there, amongst a zillion other things that we don't have.

Just wanted to thank you again,
Craig
 
C

CFstudent

New member
Jody,

You obviously have an immense knowledge on this subject and it has been quite the eye opener hearing from you. I also put the site out on the Canadian Cystic Fibrosis Foundation's listserve, and it really is amazing what you learn by talking to people who are really "in the know" with what works.

Also the perspective you get is amazing, I've been somewhat "consumed" by this project, it seems like it's not just school anymore! Probably a blessing and a curse since I have 4 other classes to worry about <img src="i/expressions/face-icon-small-smile.gif" border="0">

The difference between reading some third party info on the net and speaking to people going through all of this is astounding. I definitely think we need some info on naturopathic/homeopathic treatments up there, amongst a zillion other things that we don't have.

Just wanted to thank you again,
Craig
 
C

CFstudent

New member
Hey again folks,

I know a lot of you are probably getting sick of me, but I wanted to let you know that I've reviewed the site. Worked on some of the grammar/wording, changed around some things (ie. where the gastrostomy tube info was), added a testing section.

Once again I wanted to thank everyone for their feedback,
Also I want to add a small bit about a typical day of treatment, from what I've read the order of treatment is usually: bronchodialator, then Pulmozyme, then The Vest or CPT, and finally TOBI? Any problems with that, also this is repeated 2-4 times a day? is that correct?

Thanks a lot everyone, especially Jody, the info was indispensable.

Craig

<a target=_blank class=ftalternatingbarlinklarge href="http://web.mac.com/craigetherington">http://web.mac.com/craigetherington</a>
 
C

CFstudent

New member
Hey again folks,

I know a lot of you are probably getting sick of me, but I wanted to let you know that I've reviewed the site. Worked on some of the grammar/wording, changed around some things (ie. where the gastrostomy tube info was), added a testing section.

Once again I wanted to thank everyone for their feedback,
Also I want to add a small bit about a typical day of treatment, from what I've read the order of treatment is usually: bronchodialator, then Pulmozyme, then The Vest or CPT, and finally TOBI? Any problems with that, also this is repeated 2-4 times a day? is that correct?

Thanks a lot everyone, especially Jody, the info was indispensable.

Craig

<a target=_blank class=ftalternatingbarlinklarge href="http://web.mac.com/craigetherington">http://web.mac.com/craigetherington</a>
 
C

CFstudent

New member
Hey again folks,

I know a lot of you are probably getting sick of me, but I wanted to let you know that I've reviewed the site. Worked on some of the grammar/wording, changed around some things (ie. where the gastrostomy tube info was), added a testing section.

Once again I wanted to thank everyone for their feedback,
Also I want to add a small bit about a typical day of treatment, from what I've read the order of treatment is usually: bronchodialator, then Pulmozyme, then The Vest or CPT, and finally TOBI? Any problems with that, also this is repeated 2-4 times a day? is that correct?

Thanks a lot everyone, especially Jody, the info was indispensable.

Craig

<a target=_blank class=ftalternatingbarlinklarge href="http://web.mac.com/craigetherington">http://web.mac.com/craigetherington</a>
 
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