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scooky1

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Reply with quote  #1 
Hey Guys (sickies and moderators)

I was thinking about something this morning (uh-oh) I know or hear there is a new study/something/guidelines coming out but I am wondering if there could be a way for the people who are doing the studies can or could use the people here on the MB for help? like a form that we could fill out that lists things like what meds are working, stress reduction, foods to avoid, well I don't know but it seems like we (the sick people) are all right here on the board, perhaps there is a way to put us all to work or at least be part of working on our problem. I assume they use stats from Doctors and hospital records etc. I hear there is another MB on face book but have never been there (I don't FB) but for this board it seems that as long as we're all here, some how our experience in our journey through this HELL could be put to use some way. I don't know but it seems as long as we are all right here they could use our combined experiences.
                                                                   just thinking,Steve
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wynnak

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Reply with quote  #2 
Steve,

The Adult Guidelines have been an ongoing project for the last 3 1/2 years. It is solely funded and organized by CVSA. They assembled the doctors, researchers etc from CVS professionals all over the world. The Doctors that see the most like Dr. Venkatesan, who is the Chair of the committee, Dr. B Li who is the Co-chair and CVSA Co-Founder and President,  bringing in the patient perspective. So please be assured that CVSA is making the patient struggles known. CVSA does this because they not only developed the association because of the lack of care, but the lack of knowledge. Everyone involved with CVSA is personally affected by CVS in their lives. Whether they are caregivers or patients, they want to make a difference. 

This is most apparent by even looking at Ginny and myself. Volunteers in support others. Ginny is my idol for the amount of time that she has committed to CVSA. 

We all relay and bring a patient perspective to the Board of Directors and even our Medical advisors. 

You are heard Steve. 

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ginny

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Reply with quote  #3 

Thank you Blynda for the kind compliment.

Steve, the study has to be totally scientific.  We ran an anecdotal study on the Message Board years ago.  And CVSA has run several anecdotal studies.  This new Adult Research will be published in a major medical journal and should help provide a professional standard of care and a level of respect to the adult CVS patient-- we know how desperately care and respect are needed.

If you look on the CVSA web page for the NASPHGAN study, you will be able to appreciate the scope of the work.  Both studies were enormous undertakings, especially for such a small organization and for such a rare condition.  No one at CVSA ever seems to say "impossible".  I think this is the reason CVSA has remained a vibrant organization for such a long time.  

I am so excited that the new adult guidelines are almost here.  

When I first started to volunteer for CVSA the support group was by an email ListServ.  Then the VP of CVSA created a Bulletin Board.  After a few days of excitement and postings, the board crashed.  Next was finding an affordable alternative.  We have had Tool Box as our message board host since.  Now there are CVSA spin offs including some on Facebook.  Most are not endorsed by CVSA.  Some raise funds but not funds that benefit CVSA and not all the advice on some of these other support sites is not accurate.  If you do venture onto FaceBook, be sure to check out the CVSA Facebook page.  There are lots of spin offs so be careful!  


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ginny CVSA Moderator
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scooky1

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Reply with quote  #4 
UHHHHH OK! 
Thanks for clearing that up! and yes I do feel dumb now! so you can leave this post up so people  can read and freshen up on CVSA and what you wonderful people do and have done (which I thank you so much for!) Or you could take it down and we could pretend I never opened my mouth.                                                                                    up to you.Steve
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ginny

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Reply with quote  #5 
I thought your suggestion was great, and it would have been wonderful to have been able to go to members for this study.   You are a huge help to others and your support here on the MB is very much appreciated and looked forward to.

You are helping others. You are learning and contributing so please appreciate your importance to this support site.

The MB study we did was interesting, extremely helpful and is the reason that CoQ10 was added to the mix of supplements.  Dr. Boles had not been using the combo of Carnitine and CoQ10 until we did the study and presented him with the results.

I think you raised an excellent question.  
There are never dumb suggestions or questions.  If I have not said it before, thank you for your assistance and participation on this message board.  

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ginny CVSA Moderator
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fatty13481

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Reply with quote  #6 
Hi in . I've had this condition for 15-16 years . What guidelines are are you talking about and what will they entail.
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wynnak

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Reply with quote  #7 
Steve,

You never get answers if you don't ask questions. By you proposing the banding together to get information out there. You are literally describing what CVSA does. I think a lot of people don't know. Not just you. I know that I did not know the scope of what they do until I got more and more involved with them as a volunteer. So it is a very pertinent question, also allows us to share what CVSA does.

CVSA has known for awhile that the pediatric guidelines, that they also were the key component of organizing and funding, were a base for treatment. They were the first of their kind. CVS was originally thought to a pediatric condition. Learning through the support and engagement of our community, we have seen or personally experienced the issues with adults with CVS Adult onset, or even those that had it as pediatric patients and then struggled again as adults. With more and more adults needing a treatment guideline, CVSA went about having the Adult diagnosis and treatment Guidelines (Fatty13481 this is what we are talking about) developed.  See news on the website for more info on the guidelines development. THe pediatric guidelines are also 10 years old.. so much changes in the medical and pharmaceutical fields each year that they decided to start with the adult treatment guidelines.  

I would recommend that everyone be a CVSA member to get the most information and opportunities about what CVSA is working on. At least sign up for the newsletters.  If the membership fee is not something you can afford, watch for the occasional sale on them, or contact the office to discuss options. But, the newsletters that are mailed are very comprehensive and you get more information about what CVSA is working on. (Hint: people that fundraiser over $250 or volunteers can get membership free, Facebook is an easy way to fundraise) 

If you really want to have an impact on what CVSA is able to do, there is a form on the website to volunteer. There are a couple committees forming now that you may want to look into be involved with. Help CVSA in their mission of support, education of medical professionals, research and awareness. 

Let Ginny or I know if you have questions 😉 Because as you can see we are full of information and tips! 

Happy Friday everyone!

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Blynda
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