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Crohn's Disease Forum » Books, Multimedia, Research & News » MAP Vaccine Ready for Human Trials - Could be Used for Crohn's


 
01-25-2014, 05:00 PM   #31
Karma
 
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I wonder whether the minutes of the strategy board are published.

May I suggest all of us in the UK write to our MPs and try to get them to lobby, raise questions and so on about this. It might also be possible to try and get some news coverage?!

Edit: they do have a website. Lots of interesting info on there.

I wonder whether there's other places funding could be found. What about Kickstarter?
01-26-2014, 09:41 AM   #32
electrichead
 
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Sadly we're not allowed to promote charity collections on the forum for some reason. It would be nice to be able to get the word out to a large group of crohns sufferers so that some worthwhile donations could be made. I can't see why anybody with crohns wouldn't be willing to at least throw a tenner their way, even if they dont believe the MAP idea.

I know thats why I didn't post the link (winky face, see what I did there)
01-26-2014, 09:42 AM   #33
electrichead
 
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I wonder whether the minutes of the strategy board are published.

May I suggest all of us in the UK write to our MPs and try to get them to lobby, raise questions and so on about this. It might also be possible to try and get some news coverage?!

Edit: they do have a website. Lots of interesting info on there.

I wonder whether there's other places funding could be found. What about Kickstarter?

I've sent the story in to the BBC if loads of people did the same thing then they are bound to do some sort of story on it!
01-26-2014, 10:11 AM   #34
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just made a donation, granted small.
01-26-2014, 08:58 PM   #35
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Likewise. This has to get to trials.
01-27-2014, 02:50 AM   #36
rollinstone
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Electric head can u post the link to bbc so we can follow suite
02-02-2014, 11:05 AM   #37
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Electric head can u post the link to bbc so we can follow suite
Hey guys sorry this took so long
http://www.bbc.co.uk/news/10725415
02-07-2014, 04:28 PM   #38
JMC
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My Prof at another major London hospital has always been dismissive of the MAP theory, I must ask him about that again at my next appointment in a few weeks time. I hope Prof Hermon-Taylor is right, I would happily give him £50k if I knew it would cure me.
02-07-2014, 07:21 PM   #39
electrichead
 
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My Prof at another major London hospital has always been dismissive of the MAP theory, I must ask him about that again at my next appointment in a few weeks time. I hope Prof Hermon-Taylor is right, I would happily give him £50k if I knew it would cure me.
Hey there, it's a hot debate issue with those in the field, if you send me your email address in a pm I could send you the paper written by professor John Herman-Taylor and show you his evidence
02-07-2014, 07:39 PM   #40
electrichead
 
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Hi all, received an email from the professor this week regarding WHY the vaccine won't be receiving any further funding from the Technology Strategy Board;


"Yes....it was a great blow to be rejected by the Technology Strategy Board.

We had hired an excellent professional to assist us with the application, and intense period lasting the whole of November. He has done many of these and put our application in the top quartile for excellence. So also essentially did our top vaccine partners at the Jenner Vaccine Institute in Oxford. So our outright rejection doesn't make sense.

I think we hit political enemies.....as so often with this issue.

I think you should get as many Crohn's families as you can to complain strongly against the decision.

With the wonderful results of the vaccine against MAP in cattle and no side effects a great potential improvement has been denied to the Crohn's community.

please quote any of this email as you think appropriate.

An appalling decision. If you can persuade them to re-consider or launch an appeal so much the better.

best wishes...John "
02-07-2014, 09:41 PM   #41
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Definitely some political bullshit going on, think about the controversy that would come out if it indeed turned out map to be the main causative, food industry would take a beating. There has to be some sort of way we can appeal, change.org or something...
02-07-2014, 11:28 PM   #42
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Hi all, received an email from the professor this week regarding WHY the vaccine won't be receiving any further funding from the Technology Strategy Board....

An appalling decision. If you can persuade them to re-consider or launch an appeal so much the better.

best wishes...John "
electrichead, I wonder if Prof Hermon-Taylor has applied to the Broad Foundation for funding? As a philanthropic organisation with a particular interest in Crohn's, they actively look for and fund promising treatments. Since you are in email contact with Prof HT, maybe mention it to him?

Cheers
Helen
02-08-2014, 03:39 AM   #43
AJC - Australia
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Hey Sir Clausin - we need to crowndsource this! Something like kickstarter, where we all pledge like $5000…we all raise that $5000 ourselves, if everyone on here could raise $5000 and pledge it - the people behind the vaccines production would have a financial figure they need, say $4million to actually get it happening…..$4million divided by 20, 000 crohns sufferers is only $200 each! I rekon anyone with crohns would happily pledge $200-$5000 for the potential…..they wouldnt take the money unless the vaccine was approved for human use. I think some people with crohns would happily sign a form saying 'yep, try me'…..people who are having fecal transplants, for example. COME ON - lets get the crohns community together and raise some $$$$$$$$$$$ for this vaccine.
__________________
diagnosed 1994 aged 18. 3 surgeries. Remicade is my drug.

I believe this could cure crohns disease.

-Dr John Hermon -Taylor is trying to cure Crohn's disease.
02-08-2014, 07:15 AM   #44
rollinstone
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brilliant idea
02-08-2014, 11:46 AM   #45
JMC
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Hey Sir Clausin - we need to crowndsource this! Something like kickstarter, where we all pledge like $5000…we all raise that $5000 ourselves, if everyone on here could raise $5000 and pledge it - the people behind the vaccines production would have a financial figure they need, say $4million to actually get it happening…..$4million divided by 20, 000 crohns sufferers is only $200 each! I rekon anyone with crohns would happily pledge $200-$5000 for the potential…..they wouldnt take the money unless the vaccine was approved for human use. I think some people with crohns would happily sign a form saying 'yep, try me'…..people who are having fecal transplants, for example. COME ON - lets get the crohns community together and raise some $$$$$$$$$$$ for this vaccine.
I wholeheartedly agree with this, what Crohn's sufferer would not be happy to donate, say, 10% of their income for a few years to get a cure? The serious question though is, how do you mobilise people to make this happen? If this forum is not the right place, let's get a group of people together on another social media platform and make it happen.
02-08-2014, 03:28 PM   #46
AJC - Australia
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what does electrichead think?
It needs someone as the ringleader - someone to pull everyone together so there is one clear direction and strategy that involves media coverage and crowdsourcing (ie kickstarter or pozzible)….
straight up, the first thing that needs to happen is that the news in the this thread needs to be made into a concise document with the assistance of the professor and we need to make a press release to send to media. . . that press release needs some good photographs and quotes from doctors and sufferers.
Then we need to raise awareness of MAP within this crohns forum and every other crohns forum/newsletter/association/facebook page etc. . . with a link to the crowdsourcing website where people can donate.
Then we need to continue to promote that page and raise the funds.

Can someone explain the politics? The doctor states 'I think we hit political enemies.....as so often with this issue.' Who are the enemies in this situation?
02-08-2014, 04:57 PM   #47
sir.clausin
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I will speak with the professors daughter about this, I´ll skype her (Amy) in the coming week.

Let´s make this a reality! I would love to meet the professor and hear his thoughts.

PS. I remember bringing this up a loooong time ago with a doctor, and he said that "yeah well, we tried to go for the MAP-theory and treat for tuberculosis and that didn´t work". Can´t say I know how they tried, but my point being that I would like to speak to the doctor and see how the vaccine works and why he thinks it will "cure" all crohns sufferer.

Interesting times and may I say: FINALLY some real "medicine".
02-10-2014, 02:22 PM   #48
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Map vaccine would be dream come true! I will be donating on pay day and writing to my MP and the BBC. The more attention drawn the better.
02-10-2014, 04:01 PM   #49
AJC - Australia
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i saw my specialist yesterday and he said that they had done research on it and people with crohns had done 2 year courses with a three-pronged anti -biotic treatment, targetted towards the MAP bacteria, but it had not worked. I think his thoughts were 'yes you might have MAP in your gut but we dont think it causes crohns'….i want to know more.

Did the vaccine actually get rid of Joynes disease in cows?
02-10-2014, 04:05 PM   #50
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There is some great info here

http://www.crohns.org/treatment/vaccine.htm
02-10-2014, 05:49 PM   #51
rollinstone
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i saw my specialist yesterday and he said that they had done research on it and people with crohns had done 2 year courses with a three-pronged anti -biotic treatment, targetted towards the MAP bacteria, but it had not worked. I think his thoughts were 'yes you might have MAP in your gut but we dont think it causes crohns'….i want to know more.

Did the vaccine actually get rid of Joynes disease in cows?
There were many problems with that trial, and in comparison to remicade and humira it still had a higher remission rate. There's a post on here about it.
02-10-2014, 06:47 PM   #52
AJC - Australia
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thanks Joshua…i have contacted the people behind the vaccine but their website seems so dated!! I hope they write back……i am a believer in this MAP stuff….makes a lot of sense. Hope you are well at the moment.
02-11-2014, 01:21 AM   #53
kiny
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It's very rare they test anything on cows with Johne's disease. Who is going to pay for that? It would be really interesting for example to see what infliximab does in a cow with Johne's disease, but no one has tested it, a cow is 5, 6 times the weight of a human? No one will pay for it.

Same reason why antibiotics are never used on cows with Johne's disease. There is plenty reason to use antibiotics because they infect the whole herd, but no one does it since it's not economically viable to use antibiotics on a huge animal like that. It is much cheaper to cull the animal instead, or turn it into a hamburger while no one is looking.

There have been many tests with bovine MAP, but they're in vitro tests.
02-11-2014, 04:04 PM   #54
Karma
 
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IIRC the Daily Mail here in the UK has run stories about Crohn's before and, I think, mentioned the professor's work before. I bet there's a chance they'd run a story on this!

'Government Quango....'

Edit: What about Larry Smarr - he might be interested....

Last edited by Karma; 02-11-2014 at 05:33 PM.
02-11-2014, 04:53 PM   #55
electrichead
 
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electrichead, I wonder if Prof Hermon-Taylor has applied to the Broad Foundation for funding? As a philanthropic organisation with a particular interest in Crohn's, they actively look for and fund promising treatments. Since you are in email contact with Prof HT, maybe mention it to him?

Cheers
Helen
Hey Helen, I'll send him an email and ask him! Good thinking by the way.
02-11-2014, 05:00 PM   #56
electrichead
 
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Hey all, I informed my MP of the situation and within the week he has written a letter to Jeremy Hunt for the issue to be taken up in government in Westminster! Please everybody in the UK please please make your MP aware of the situation!!! If my letter comes to nothing they can't ignore it when everybody brings it up!!
02-11-2014, 05:20 PM   #57
electrichead
 
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The professor recently sent me the actual application they submitted to the board; it's extremely detailed (as you would imagine).
Some relevant facts from the application:
All Crohn's patients test positive for MAP (using Herman-Taylor's new diagnostic device).
The vaccine has been tested on MAP positive calves which reversed symptoms and MAP was not detected in autopsy.
02-12-2014, 08:17 AM   #58
puphead
 
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Hi electrichead is it possible to make the application freely available for others. If the results are indeed as spectacular as they say I think it would be better to make some sort of a template that could be easily signed by anybody interested before being handed over.
02-12-2014, 10:31 AM   #59
electrichead
 
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Hi electrichead is it possible to make the application freely available for others. If the results are indeed as spectacular as they say I think it would be better to make some sort of a template that could be easily signed by anybody interested before being handed over.
Hey puphead I would love to but 1. I don't know how I would do that because its like 20 pages long and formatted such that all I can really do is read it and
2. I wouldn't want to risk copyright infringement, hence the information isn't a direct quote but a re-wording if whats written.
I'll ask JHT if there is some way though!
02-12-2014, 10:32 AM   #60
electrichead
 
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But I promise you that is information in the official application.
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