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Admin
Admin


Posts : 6
Join date : 2015-05-07

PostSubject: News update   Thu May 19, 2016 12:42 am

Dear registered users,

Firstly, thank you to the registered users who made donations and a special thank you to the Medical College of Virginia Foundation for their generous contributions. These are greatly appreciated and are all tax deductible.

This is my first update after returning from a conference in China, in which I also looked at several different new imaging technologies.

Dr Antonina Volikova has also attended the AIUM conference in New York and had discussions with medical imaging professionals regarding the recent developments in ultrasound machines which we will use to study patients with chronic bladder and pelvic pain. Dr Volikova will be putting a conference report on the website shortly.

We have identified the machine that we will use for our study but we still do not have the complete funding as the estimated cost is at list US$150,000.

Dr Volikova’s initial project has the necessary approvals but we are still seeking funding for the new ultrasound machine.

We plan also to specifically address the bladder microbiome, deep genomic sequencing, and the role (or not)
of chronic bacterial infections/biofilm in the etiology of this disease.

I still think that IC/BPS is going to be a multi-factorial disease with multiple etiologies in different age groups.
Gathering diagnostic information and ruling out various possible causes will be the initial strategy at this time.

This type of bulk e-mail is going to be infrequent and very brief, so you are not going to be “spammed” excessively.

Yours sincerely,

Prof. Barry Marshall
Nobel Laureate Urology

Dr. Antonina Volikova
Urology Research Fellow
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Strandsidemol



Posts : 64
Join date : 2016-02-15
Age : 39
Location : Leicestershire,uk

PostSubject: Re: News update   Thu May 19, 2016 4:25 am

Thank you for the update. I agree i think it will more than likely take a multidisciplinary approach to assess patients as individuals. Could it be some of us have biofilm infections, lyme/co infections, inflammation of an unknown cause etc?
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Andi2016

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PostSubject: Re: News update   Thu May 19, 2016 9:59 am

There is no thumbs up symbol, so thanks for the update.
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Jill1947



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Join date : 2016-01-30

PostSubject: Re: News update   Thu May 19, 2016 5:30 pm

Thank you, and so pleased to read this update. Can you give details of the imaging machine you will use?
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joseph_abney34



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PostSubject: Re: News update   Fri May 20, 2016 1:09 am

Thank you so much Professor Marshall and Dr. Volikova! You all are wonderful.
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Tina2



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Join date : 2016-02-15
Location : Queensland Australia

PostSubject: Re: News update   Fri May 20, 2016 5:53 am

Thank you, great to see things moving forward, would be interested in details of the Ultrasound Machine is this in some way different to what we normally see used currently ?
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IC Queen



Posts : 42
Join date : 2016-04-13

PostSubject: Re: News update   Sun May 22, 2016 3:21 pm

Would love spamming from your group! There is no one I would rather hear from actually. Three cheers for Professor Marshall, Dr. Volikova, and team! I have never met an IC patient who is not eternally grateful for researchers of our disease and especially you guys.
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Andi2016

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PostSubject: Re: News update   Thu May 26, 2016 7:25 am

Prof Marshall and Dr Volikova, are you able to tell us what the shortfall is?  Perhaps patients can come up with fundraising opportunities, like some type of crowd funding?  There's an online crowd funding platform in Australia called Researchable https://www.researchable.com/  (after Googling, there are lots of medical research crowd funding sites).

There are a lot of people around the world in IC/PBS online support groups - so any online fundraising approach could reach a lot of people quickly.
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EL

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Location : Perth, Australia

PostSubject: Re: News update   Wed Jun 08, 2016 11:05 am

Hi Andi2016,
Thank you for your reply.

Just to let you know, we do have a Donation page on our website if you would like to offer a donation.

Please find link below:

https://www.ic-bps.com/donate/

-- The Programmer --
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lak78



Posts : 24
Join date : 2016-01-05
Location : Brisbane, Australia

PostSubject: Re: News update   Wed Jun 08, 2016 3:03 pm

Hi EL

My husband and I would like to make donations through workplace giving however I'm unable to organise this without the research obtaining deductible gift recipient status (as mentioned on the donations page). Do you know how far off this might be?
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Andi2016

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PostSubject: Re: News update   Thu Jun 09, 2016 7:12 am

Thanks EL - yes I have donated, but only a small amount. The amounts you have on the donation page must be aimed at investors.

I wonder if it could be worthwhile targeting lots of people who will donate small amounts, simply because they have a personal link to the condition. There are lots of online networks where these people can be reached. Crowdfunding seems to gain momentum when you least expect it. Did you see the story about the Australian father and son who invented the new bee hive (Flow Hive)? They were seeking crowdfunding for $70,000 to develop their invention and ended up with over $12 million. It's on Australian Story: http://www.abc.net.au/austory/content/2015/s4335344.htm

Lak78 - Prof Marshall says in the post above that donations are tax deductible.
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dantheman



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PostSubject: Re: News update   Thu Jun 16, 2016 3:28 pm

I'm going to send out the donation link to all my friends and family and make a donation myself
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dantheman



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PostSubject: Re: News update   Thu Jun 16, 2016 3:37 pm

Hello Dr volikova and Prof Marshal, I note that you will look at bio films and bacteria for possible links to IC. What about viral links too? Here's a study which found strong correlation with IC and a particular virus. Adenovirus and Polyomavirus found in people with gunners ulcers.

http://www.ncbi.nlm.nih.gov/pubmed/24973060
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dantheman



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PostSubject: Re: News update   Thu Jun 16, 2016 3:49 pm

Hello Dr volikova and Prof Marshal, I note that you will look at bio films and bacteria for possible links to IC. What about viral links too? Here's a study which found strong correlation with IC and a particular virus. Adenovirus and Polyomavirus found in people with gunners ulcers.

http://www.ncbi.nlm.nih.gov/pubmed/24973060
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dantheman



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PostSubject: Re: News update   Thu Jun 16, 2016 4:47 pm

I sent the donate link to everyone on my contacts link and also in my Facebook page. I have a very big family and many have already pledged donations. I have also asked them to forward my text to their friends that might be able to help.
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Tina2



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Join date : 2016-02-15
Location : Queensland Australia

PostSubject: Re: News update   Tue Jul 26, 2016 6:46 am

May I ask as you are located in WA how will your investigations work in regards to people who live in other states ? Will you be sending out survey type requests or will people have to physically be in WA to be involved ? Thank you so much for all you are doing you are out hope for the future to end the nightmare we all live.
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dantheman



Posts : 130
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PostSubject: Re: News update   Tue Jul 26, 2016 8:57 am

[quote="Admin"]Dear registered users,

Firstly, thank you to the registered users who made donations and a special thank you to the Medical College of Virginia Foundation for their generous contributions. These are greatly appreciated and are all tax deductible.

This is my first update after returning from a conference in China, in which I also looked at several different new imaging technologies.

Dr Antonina Volikova has also attended the AIUM conference in New York and had discussions with medical imaging professionals regarding the recent developments in ultrasound machines which we will use to study patients with chronic bladder and pelvic pain. Dr Volikova will be putting a conference report on the website shortly.

We have identified the machine that we will use for our study but we still do not have the complete funding as the estimated cost is at list US$150,000.

Dr Volikova’s initial project has the necessary approvals but we are still seeking funding for the new ultrasound machine.

We plan also to specifically address the bladder microbiome, deep genomic sequencing, and the role (or not)
of chronic bacterial infections/biofilm in the etiology of this disease.

I still think that IC/BPS is going to be a multi-factorial disease with multiple etiologies in different age groups.
Gathering diagnostic information and ruling out various possible causes will be the initial strategy at this time.

This type of bulk e-mail is going to be infrequent and very brief, so you are not going to be “spammed” excessively.

Yours sincerely,

Prof. Barry Marshall
Nobel Laureate Urology

Dr. Antonina Volikova
Urology Research


I think that many people on the forum rely on little more than hope these days. How are things going?  Do you have an ETA when research will start in earnest?  How can people from other states be involved or is it just people from Western Australia? I guess testing for things like biofilms can be done from any where. When might biofilm testing start? Any update would be nice. I also think that this study might have spin off benefits for other conditions like prostatitis in men.
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joseph_abney34



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PostSubject: Re: News update   Fri Jul 29, 2016 12:11 pm

Dan I think in another thread Dr. Volikova said they estimate that research should begin this fall sometime. They are still getting funding for the high tech imaging equipment.
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lak78



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Location : Brisbane, Australia

PostSubject: Re: News update   Sat Jul 30, 2016 7:27 am

Hi Joseph

Do you mean fall in the northern hemisphere?
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Tina2



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PostSubject: Re: News update   Sat Jul 30, 2016 10:43 am

lak78 I remember mention of August / September Aus time
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lak78



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PostSubject: Re: News update   Sat Jul 30, 2016 3:09 pm

Not long then! Fingers crossed it starts on time
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Tina2



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PostSubject: Re: News update   Sat Jul 30, 2016 3:48 pm

lak78 wrote:
Not long then!  Fingers crossed it starts on time

Starting is not my major wish - finishing with a CURE is LOL
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Marie16725



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Join date : 2016-04-13

PostSubject: Re: News update   Fri Sep 16, 2016 7:49 pm

Has anyone else heard of the connection to Lyme disease for some? I tested positive for Lyme, and have Enteroccocus and lactobacillus in bladder. Now treating and have severe inflammatory labs and epic joint and muscle pain.
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Marie16725



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Join date : 2016-04-13

PostSubject: Re: News update   Sat Sep 17, 2016 4:23 am

Is there a research plan you can share in terms of phases and a targeted timeline. I see here the first phase is to rule out. Could you share the other steps?

"Dr Volikova’s initial project has the necessary approvals but we are still seeking funding for the new ultrasound machine.

We plan also to specifically address the bladder microbiome, deep genomic sequencing, and the role (or not)
of chronic bacterial infections/biofilm in the etiology of this disease.

I still think that IC/BPS is going to be a multi-factorial disease with multiple etiologies in different age groups.
Gathering diagnostic information and ruling out various possible causes will be the initial strategy at this time."
[/i]
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IC can be cured



Posts : 8
Join date : 2016-02-11
Age : 43
Location : Brisbane

PostSubject: Re: News update   Fri Sep 23, 2016 7:45 pm

Okay well here's an interesting point. I've been taking vitamin c (non acidic type) and grape seed extract for last 3 months and my IC symptoms have nearly all but gone. I'm not drinking coffee or anything silly, but I have much more scope now in what I can eat and yes even tomatoes and still no pain, frequency etc. Could this mean that it IC needs antioxidant therap?. Possibly bladder wall cells have had free radical damage and do not perform their normal function of protecting the bladder wall like normal healthy cells in non IC patients?
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