MAP Vaccine Ready for Human Trials - Could be Used for Crohn's

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This broke my heart (from Run for Crohns website):

...

Where do I come in?...

This research is close to my heart for another reason; it is the culmination of the life's work of my father, Professor John Hermon-Taylor, a Professor of Surgery, Molecular Scientist and internationally renowned Crohn's Disease expert. My father has worked full-time UNPAID since his 'retirement' 11 years ago to develop this vaccine. He has quietly, resolutely pursued this goal despite the constant threat of research funds running out, despite opposition to his work from political enemies and despite cancer and heart disease.

And not for money or for personal glory but for an unspoken promise -to every Crohn’s patient he has cared for and to individuals from across the world suffering with Crohn's who contact him for help -that he will make this happen for THEM. They are willing him to succeed for their sakes.

Sadly, MAP research is not supported by the government or major Crohn's charities. I cannot understand why; 30 years of evidence just cannot be ignored. True, until we have a trial in humans, we will not know if the Vaccine will work as well as it promises. But who in their right mind would not want that question answered?!

As a doctor and as a daughter, I am not willing to stand by and let something with so much promise, which could help so many people, fall by the wayside.

...
 
Malgrave said:
Sadly, MAP research is not supported by the government or major Crohn's charities.
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This can sound very emotive, but let's be specific about this and rather than get upset about it take some action...
  • Which governments have been asked to fund it and refused and why? We need the name of the minister or department which made the decision so we can lobby.
  • What are the main Crohn's charities which provide research funding? Which ones have refused and what reason was given. Again, we need to get the names of the people who made the decision and lobby them.
 
Lets not forget, all the gastros laughed off Dr Barry Marshall and Dr Robin Warren when they proposed that stomach ulcers were caused by a bacteria (Helicobacter pylori). I believe one of the doctors actually infected himself, got diagnosed with a stomach ulcer and cured himself before the skeptics would believe him.

The gastros dont want to accept Crohns could be caused by a pathogen.
 
Malgrave said:
This broke my heart (from Run for Crohns website):

...

Where do I come in?...

This research is close to my heart for another reason; it is the culmination of the life's work of my father, Professor John Hermon-Taylor, a Professor of Surgery, Molecular Scientist and internationally renowned Crohn's Disease expert. My father has worked full-time UNPAID since his 'retirement' 11 years ago to develop this vaccine. He has quietly, resolutely pursued this goal despite the constant threat of research funds running out, despite opposition to his work from political enemies and despite cancer and heart disease.

And not for money or for personal glory but for an unspoken promise -to every Crohn’s patient he has cared for and to individuals from across the world suffering with Crohn's who contact him for help -that he will make this happen for THEM. They are willing him to succeed for their sakes.

Sadly, MAP research is not supported by the government or major Crohn's charities. I cannot understand why; 30 years of evidence just cannot be ignored. True, until we have a trial in humans, we will not know if the Vaccine will work as well as it promises. But who in their right mind would not want that question answered?!

As a doctor and as a daughter, I am not willing to stand by and let something with so much promise, which could help so many people, fall by the wayside.

...
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Can someone post an authentic link to make donations to??
 
Garbanzo said:
Can someone post an authentic link to make donations to??
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It's against forum rules for us to post links to sites that ask for money (Which is frustrating since that happens to be the best place to get info about the vaccine as well..).

To find it just search 'amy hermon taylor run for crohns just giving' and it'll surely come up as one of the first few pages. It's a justgiving.com site.
 
DamnitCrohns said:
It's against forum rules for us to post links to sites that ask for money (Which is frustrating since that happens to be the best place to get info about the vaccine as well..).

To find it just search 'amy hermon taylor run for crohns just giving' and it'll surely come up as one of the first few pages. It's a justgiving.com site.
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Ok I understand, but I'm down to a charity run etc.
 
Garbanzo said:
Ok I understand, but I'm down to a charity run etc.
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Yeah, it was originally set up as amy running to get donations but now it's the best place to send donations. (Confirmed by amy on facebook). I realise it's confusing, I believe they're in the process of setting something more clear up.
 
happy poo poo said:
Lets not forget, all the gastros laughed off Dr Barry Marshall and Dr Robin Warren when they proposed that stomach ulcers were caused by a bacteria (Helicobacter pylori). I believe one of the doctors actually infected himself, got diagnosed with a stomach ulcer and cured himself before the skeptics would believe him.

The gastros dont want to accept Crohns could be caused by a pathogen.
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I think they genuinely don't believe it because in the past (before Prof JHT) there wasn't enough evidence for it, so they need kind of need an extra push!
Also, interestingly, those doctors who made the discovery about helicobacter pylori went on to win the nobel prize for medicine! I don't know about anybody else, but I think if Prof JHT's vaccine works he should be in line for it!
 
I completely agree.

My husband and I are new to the world of Crohn's because our teenaged daughter was only diagnosed in December. My husband is a professional researcher and has focused most of his attention on IBD since that time. We are shocked and astonished to find that so little can be done for people with Crohn's, that the number of cases has skyrocketed over the past few decades, and that promising treatments are not pursued because they would not result in gigantic profits for pharmaceutical companies.

Dr. Crohn himself suspected the MAP bacterium was the cause of the disease that now bears his name. At that time it was not possible to test for the bacterium but modern medical techniques have changed that. Cattle known to be infected with MAP have intestines that look just like those of humans with Crohn's, and nothing else looks like it. MAP is definitely present in a high percentage of dairy cows. It is well established that animal infections can be transmitted to humans. It has been proved that MAP can survive milk pasteurization. How can we NOT support Dr. Hermon-Taylor's work to its completion?

I'm going to post that on the Facebook page right now. We already made a financial contribution to Dr. H-T's project. I urge you to help spread the word.
 
there are reasonable arguments against the MAP theory too, one is detection rates, second is the Australian antibiotics trial that did not keep ppl in remission, you can't ignore these arguments I feel, a lot of studies have found MAP by PCR in people with CD, A LOT did not

this is a good rebuttal to those type of arguments:

http://www.youtube.com/watch?v=FoVpiFKwa9A

you can go back and forth like this for years while ppl suffer, yes or no, ppl deserve an answer

ppl have been arguing if MAP is involved in crohn's disease for over a century now

.

like that video also shows and why i strongly disagreed with Xiafo, is the argument that use of immunosuppressants is an indication that an infection isn't involved, iimmunosuppressants are often used for infections, how weird it might seem at first, often times stopping the inflammation is far more important that controling the infeciton, it's not a reasonable argument, imuran, steroids, TNF-alpha blockers, they have all been used for infections, in fact many immunosuppressants were desinged to treat infections

when the immune system is not capable of removing the offending antigen, the inflammation becomes chronic, and the inflammation is often very destructive, which is why you want to both control the inflammation and the infection at the same time


all this results in back and forth arguments, people who refuse to look at UC and Crohn's disease as seperate diseases,some GI who should be impartial giving opinions on mycobacteria they know nothing about, the dairy industry who stands to lose millions the more this issue is talked about, etc, I hope we have an answer soon


I also want GI to stay out of these arguments. They are not immunologists or infection specialists, it only muddies the water and sets people with crohn's disease back instead of helping them.
 
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kiny said:
there are reasonable arguments against the MAP theory too, one is detection rates, second is the Australian antibiotics trial that did not keep ppl in remission, you can't ignore these arguments I feel, a lot of studies have found MAP by PCR in people with CD, A LOT did not
.
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Out of curiosity... What if MAP is one of many different irritants tgat initiate what we know as Crohns disease? What I'm trying to get at is that many different intestinal diseases show crohns like symptoms like intestinal tb. Could it be possible that MAP triggers Crohn's symptoms while AIEC causes it for others and etc? I wondering if anti MAP treatment may be effective for a subset of Crohns patients.
 
That's perfectly plausible.

We all know that certain treatments work better for some people than for others. It seems to me that Crohn's is quite possibly an intestinal condition, rather than a disease that comes from only one source. Like a rash you might have on your hand. Your rash could be from poison ivy, or another skin irritant, or from getting way too much sun, or a whole lot of mosquito bites, or a reaction to a medicine you took, or excema, or a bunch of other things. You can sooth the rash in a variety of ways, but none of that soothing will cure the rash and keep it from coming back.

Even if a MAP vaccine would be a cure for only 20% of IBD cases, it would be well worth the development expense. Think of the cost of all those intestinal surgeries, scopes, scans, and drugs like Remicade. Think of the people who can't hold a job because they keep getting sick. Think of all the pain and suffering.

I can't figure out why this Vaccine hasn't been funded to completion.
 
Ibligh, welcome to the land of the believers in MAP theory.
I hope you have liked the facebook page….see the link higher up on this page, from me..


If the vaccine works it will prove irrefutably that MAP causes Crohn's... and that would lead to some very awkward questions being asked about why, despite earlier warnings, the public had continued to be exposed to a disease-causing pathogen in the food-chain. Another milk scandal wouldn’t look good for the dairy industry. But then this is very short-sighted as it wouldn’t end in the feared apocalyptic scenario of mass culling etc because the vaccine presents the solution to that very problem; vaccinate diseased animals to prevent MAP entering the food chain.

The best thing we can do is rally the believers into an army…i think that facebook page is a good way to do it….so, go join and lets all get behind his daugher Amy who is running the London marathon April 13th, raising money for the MAP diagnostic.
 
posting this again, because I believe it is the best way for everyone on this thread to stay tuned to what Dr Hermon Taylor is doing….the page is run by his daughter (also a doctor) and I think we should all be sharing it with our 'facebook friends'...
 
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I totally agree with you Ibligh and others, we should all spread the word!

One way would be that we advertise the facebook site and this thread in the various discussion forums, also outside English speaking forums. I have done it already in two other, non-English, IBD related discussions forums and I plan to look for new forums as well. We should make people understand that even a small donation counts. There are millions of IBDers around the world so collecting £100,000 and even more shouldn't be impossible!
 
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right on Malgrave!
I am of the same mindset and doing everything I can with my 'reach' to get the news into the right hands…there are countless facebook pages devoted to crohns, crohns forums, associations, websites, blogs - i am pestering as many as I can!
go hard!

this was good watching too. Thanks IBLIGH.

https://www.youtube.com/watch?v=2a7xVgzbA4Y

Try that facebook link again, i think it works now???
 
google 'run for crohns just giving' to go to the page where you can support + donate to this inspiring cause. I would put the weblink on here but apparently that is not allowed on this forum.
 
blinkz said:
Out of curiosity... What if MAP is one of many different irritants tgat initiate what we know as Crohns disease? What I'm trying to get at is that many different intestinal diseases show crohns like symptoms like intestinal tb. Could it be possible that MAP triggers Crohn's symptoms while AIEC causes it for others and etc? I wondering if anti MAP treatment may be effective for a subset of Crohns patients.
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RIght, if the issue is an innate immune defect of macrophage function, you would expect there to be multiple offenders.

There is a conection betwen E Coli and MAP, because of the mannose that gets released.

I also don't rule out MAP and posted many studies about it, because people mention H Pyroli....this happend with crohn's disease too.

In 1978, over 30 years ago, they discovered antibodies to E Coli in CD patients. They ignored this evidence for decades, and I'll quote the article, which is really dismissive:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1411820/

"There was no correlation between the number of Escherichia coli agglutinins and the site and severity of the disease or type of therapy. It is suggested that the presence of the high numbers of Escherichia coli antibodies is secondary to the disease process and is unlikely to be causally involved in the pathogenesis of the disease"


Long after that study they started to find E Coli DNA within the granuloma of active lesions in ppl with CD, and now they have isolated live bacteria from people with ileal CD, LF82, invasive E Coli, or commonly referred to as AIEC now.

E Coli needs a specific entrance point to enter tissue, it can't do it through the colon, they suspect it's capable of entering the small intestine, and it does this by entering M Cells, they're part of the peyer's patches, they line the small intestine. But it took years before ppl started taking E Coli study serious, and many still don't.

That's why I think it's good that people keep looking into all possibilities.
 
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kiny said:
RIght, if the issue is an innate immune defect of macrophage function, you would expect there to be multiple offenders.

There is a conection betwen E Coli and MAP, because of the mannose that gets released.

I also don't rule out MAP and posted many studies about it, because people mention H Pyroli....this happend with crohn's disease too.

In 1978, over 30 years ago, they discovered antibodies to E Coli in CD patients. They ignored this evidence for decades, and I'll quote the article, which is really dismissive:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1411820/

"There was no correlation between the number of Escherichia coli agglutinins and the site and severity of the disease or type of therapy. It is suggested that the presence of the high numbers of Escherichia coli antibodies is secondary to the disease process and is unlikely to be causally involved in the pathogenesis of the disease"


Long after that study they started to find E Coli DNA within the granuloma of active lesions in ppl with CD, and now they have isolated live bacteria from people with ileal CD, LF82, invasive E Coli, or commonly referred to as AIEC now.

E Coli needs a specific entrance point to enter tissue, it can't do it through the colon, they suspect it's capable of entering the small intestine, and it does this by entering M Cells, they're part of the peyer's patches, they line the small intestine. But it took years before ppl started taking E Coli study serious, and many still don't.

That's why I think it's good that people keep looking into all possibilities.
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I totally agree with everything you are saying, but the trials carried out on cattle that had Crohn's/Johne's showed that all of them had MAP. When the anti-map vaccine was given to them, their symptoms were reversed and when tested for MAP post-mortem none had MAP any more.
But again, I understand what you mean in looking at both the pro's and con's of the theory.
 
electrichead said:
I totally agree with everything you are saying, but the trials carried out on cattle that had Crohn's/Johne's showed that all of them had MAP.
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It is important to remember the connection between Johne's and MAP is well established, the connection between Crohn's and MAP is not.

electrichead said:
When the anti-map vaccine was given to them, their symptoms were reversed and when tested for MAP post-mortem none had MAP any more.
But again, I understand what you mean in looking at both the pro's and con's of the theory.
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Lucky cows ☺

Has this research proving the effectiveness of the vaccine been published in a refereed journal and are there any further trials being undertaken?
 
Hermon-Taylor's vaccine trial in COWS is going to be published soon, ie in 2014. Long story short, with mice: Conclusion: Highly effective at stimulating the immune system to eradicate/protect against MAP WITHOUT any adverse effect.

Subsequent to this, a trial was carried out in cattle (completed and findings pending publication -due out in the first quarter of 2014)... essentially finding are the same... IT WORKS, NO ADVERSE EFFECTS.

I have the published data on the safety and efficacy of the Vaccine in mice. It is a 1MB pdf file and is in 'doctor speak' if anyone wants to TRY and read it go here
http://www.scribd.com/doc/22178192/A-Novel-Multi-Antigen-Virally-Vectored-Vaccine-against-Mycobacterium-avium-Subspecies-paratuberculosis

We should all be on the facebook page though - that is where the community can get behind this theory and tell vaccine.
 
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happy poo poo said:
Hermon-Taylor's vaccine trial in COWS is going to be published soon, ie in 2014. Long story short, with mice: Conclusion: Highly effective at stimulating the immune system to eradicate/protect against MAP WITHOUT any adverse effect.

Subsequent to this, a trial was carried out in cattle (completed and findings pending publication -due out in the first quarter of 2014)... essentially finding are the same... IT WORKS, NO ADVERSE EFFECTS.
Click to expand...

Based on the progress so far, there is a good chance Hermon-Taylor will develop a vaccine which will rid humans of MAP. Then the really interesting test will start, determining whether MAP is the cause of Crohn's.

I have thought about this a lot over the last few weeks and I think the research is worth funding even if it proves that MAP is not the cause of Crohns. If you get comfortable with that thought, that it might not be a cure, but moves the science forward, how much money are you willing to give? Surely, we could raise the £100k in a matter of days if people were willing to put in £100 to £1000 each to get that question answered.
 
Exactly. The MAP theory has been around ever since Dr. Crohn's time, and it really needs to be confirmed or discredited.
 
Ok I have been on Twitter tonight promoting the Facebook MAP page with every celeb I can think of with Crohns or UC. Fingers crossed it gets the money flowing.
 
right on JMC!
That is where we are at - we need to rally together and get this proven or disproven.
Personally, if a doctor can prove that I have a MAP infection in my gut, i would want to try and get rid of it. That is step one, develop a test to determine is a patient has a MAP infection….that is what Dr Hermon Taylor is trying to raise 100, 000 pounds for. A definitive diagnostic test. That would then lead to human trial for his vaccine, which currently 'sits in the freezer' in his lab having worked on mice and cattle.
 
Like I've said before I would be willing to donate a month's salary to this, even more if I could get my son tested with this test!

I am happy to hear that so much advertising has been already done for the fb sites. But what do you think about the contents of those sites? I think it is quite narrow at the moment. If we wish people who visit the sites for the first time to take it seriously, more content is definitely needed, links to the articles, videos, etc. Is there somebody really working on this?
 
Malgrave said:
Like I've said before I would be willing to donate a month's salary to this, even more if I could get my son tested with this test!
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Why not ask the Prof directly how much it would cost to test 1 person? I would also be interested in doing this and I have the advantage of living only a few miles away from the hospital where he does his research.

Malgrave said:
I am happy to hear that so much advertising has been already done for the fb sites. But what do you think about the contents of those sites? I think it is quite narrow at the moment. If we wish people who visit the sites for the first time to take it seriously, more content is definitely needed, links to the articles, videos, etc. Is there somebody really working on this?
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I think it could be improved a lot. I would be happy to volunteer my time and experience to help. I will write to the Prof tonight suggesting that we form a team of volunteers.

Personally, I would like to see a project plan of what he wants to do over the next few years, who is involved (skills needed) and what it will cost. I think that would help focus people's minds and efforts.
 
Hmm… I was just thinking the same right after I sent my previous reply...
Would it indeed be possible to promote the fund raising so that every person donating e.g. £500 or more will have a free test during the development or right after the test is ready?
Does anybody know if the test will be based on a blood sample or something else? If it's based on blood sample would it be feasible to offer this kind of possibility to the donors?
If this was possible (even if it required travelling to London), they might be able to collect easily £100,000, maybe even to fund the whole project until the final completion…
 
Excellent ideas JMC!
I would be interested to volunteer also, depending on the skills needed and my physical resources of course. At the moment my son is so sick that I am ready to do anything I can, on the other hand sometimes the disease is so overwhelming that I cannot do anything but take care of him. But I guess this is how it is for most of us struggling with this disease!
 
happy poo poo said:
JMC and Malgrave.
Firstly, i think the Prof has had enough emails from people asking him what is happening!? We all ask him similar questions and he must be tired of replying the same answers...I have several emails here from him and can answer the questions if you voice them on this thread
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Did you mean that to sound so patronising?
 
I'm sure he did not. It is very difficult to gauge tone in an on-line post, particularly when someone is trying to be informal.
 
happy poo poo said:
Does anyone know the Dynamo bloke in England??? He seems like a nice fella. I might write to his manager.
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He is on Twitter and retweets quite a lot of Crohn's related messages. I tweeted him last night, I suggest other people do the same. Here is what I sent out:

@Dynamomagician a potential cure for Crohns, now that would be magic! Please support: ...
 
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Last week, I asked my daughter's ped GI what was going on with the MAP theory and she said nothing.

Is there any info that I can forward to her? Or keep in my file when we meet with her next?

TY.
 
greypup said:
Last week, I asked my daughter's ped GI what was going on with the MAP theory and she said nothing.
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From my perspective, working in IT and previously in research, one thing that really concerns me about the gastroenterologists I have spoken to is how disconnected and uninformed they have been. When I am informing them about progress on MAP via an article published in the Daily Mail, you know there is a problem!
 
The pediatric GIs are the worst, they are very "by the book" with the holy triangle of pentasa, 6MP, and remicade (and the similar drugs). We brought up MAP and were treated to a condescending dismissal.
 
That's been my experience as well. Anything that is up and coming like fecal transplants, MAP, FODMAP, etc are all dismissed every time I want to discuss.

I like to go into the office with journal articles at least to get the doc's attention.
 
lbligh said:
The pediatric GIs are the worst, they are very "by the book" with the holy triangle of pentasa, 6MP, and remicade (and the similar drugs). We brought up MAP and were treated to a condescending dismissal.
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same here, we deal with stony brook university , in new York, a supposedly state of the art research hosp., I get the same thing, mostly shoulder shrugs, I feel all we get is the standard punch list protocol, that I could get anywhere else
 
I know the Manchester United star Darren Fletcher has been through a rough time with UC.

I don't do crapb00k but surely it is worth somebody trying to inform him. Sure he could help both financially and getting the word out
 
Rick Parfitt Jnr, son of the Status Quo guitarist has Crohns and talks about it openly. He has his own money raising and information gathering foundation - JPR Crohns Foundation - which has its own website.
 
I hate towie with a passion BUT I feel for her and if she can publicise Crohn's then I wish her all the best.
 
1.2M followers, I have no idea why...:smile:
 
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Why is CCFA not supporting this research? They have pretty deep pockets, and the amount he's looking for (although by no means small) wouldn't be unreasonable for them, I wouldn't think.
 
Don't know who they are, but they are still funding microbiota research to try to map out the millions of gut flora bacteria. I doubt the gut flora is directly involved in crohn's disease and trying to map out the microbiota will take decades, many of them are anaerobe. Research is moving on without them, current research centers around autophagy, macrophage deficiencies and opportunistic organism, it does not center around microbiota.

Research has poured billions into microbiota research, and they have accomplished nothing that has ever helped a single person with crohn's disease.

Immune research centered around immunodeficiencies has helped people with crohn's disease, we now know for example that vitamin D is involved in autophagy and control of intracellular pathogens, and we know people with low vitamin D status are more vulnerable to crohn's disease flare ups.
 
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kiny said:
Don't know who they are, but they are still funding microbiota research to try to map out the millions of gut flora bacteria. I doubt the gut flora is directly involved in crohn's disease and trying to map out the microbiota will take decades, many of them are anaerobe. Research is moving on without them, current research centers around autophagy, macrophage deficiencies and opportunistic organism, it does not center around microbiota.

Research has poured billions into microbiota research, and they have accomplished nothing that has ever helped a single person with crohn's disease.

Immune research centered around immunodeficiencies has helped people with crohn's disease, we now know for example that vitamin D is involved in autophagy and control of intracellular pathogens, and we know people with low vitamin D status are more vulnerable to crohn's disease flare ups.
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Kiny, i wouldn't say it hasn't helped 1 single person, there was a published paper in china where a man with severe fistulasing cd went into complete remission following fecal transplant using his daughters stool. I'm on my phone so I can't post a link, but that's one person who it definitely helped..
 
Any volunteers out there wanting to assist their skills towards raising the awareness of the MAP vaccine? The people behind it are currently setting up a team of people, complete with a project manager!

It is all very exciting!

If you want to be a volunteer please either like their facebook page ... and drop them a message outlinging your interest.

We can all help…we all have skills that can be useful.
 
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Any Americans on this thread that want to assist in the effort to raise awareness of the MAP diagnostic test and the subsequent t-cell vaccine?

Dr Hermon Taylor is soon to launch a website, with all the information we need to know how we can share this information to the appropriate people. We have some really good people in Australia and the UK, but could do with a couple of savvy americans.

cheers
 
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Ok, so I am now in London to meet up with John Herman Taylor and his daughter Amy.

This is going to be very very interesting and I am going to share my story with them, since I am considered a very extreme case, with rare symptoms. We will also discuss the work I can provide for them in Sweden, where I live.

Are there any questions you would like me to bring with me on Tuesday?

Thanks
 
Wow, that's great sir clausin. Could you please ask the Professor what he thinks about antibiotic therapy for Crohn's, such as the Redhill Bio trial currently in progress? And of course, the obvious question, how long before we have his vaccine available in a trial? Many thanks!
 
can you ask what he thinks of the human trial for antibiotic therapy that is happening in the USA, i think with Dr Barody and the Israeli pharmacutical company…
 
I'm very interested in the MAP test. I gather there is already a MAP test for animals, and he now has one for humans. What is the timetable for that becoming available? Is there any interest from drug companies, or are they still pushing the expensive biologicals?
 
sir.clausin said:
Ok, so I am now in London to meet up with John Herman Taylor and his daughter Amy.
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That is great news. I met John and Amy a couple of weeks ago and I am now doing everything I can to help support the research effort. If you would like to join the volunteer team, just drop me a PM.
 
lbligh said:
I'm very interested in the MAP test. I gather there is already a MAP test for animals, and he now has one for humans. What is the timetable for that becoming available? Is there any interest from drug companies, or are they still pushing the expensive biologicals?
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Prof Hermon Taylor showed me some test results, showing the presence of MAP in humans with Crohns. The test needs further development and they need about £370k to complete it. In the coming weeks the Crohns MAP vaccine website should be up and there were will a breakdown of the remaining research work and costs. At this point, it will be possible for people to fund specific and tangible elements of the research.

Until the website is up, the best source of information is the Facebook Crohns MAP Vaccine page. Amy has already been compiling a FAQ, so if you have specific questions just ask there.
 
Fundraising £370k seems like an enormous task. Is it assumed that once the test is developed, further research funding will be easier to get? Or will it just be more and more funding required for years and years to come?
 
DamnitCrohns said:
Fundraising £370k seems like an enormous task. Is it assumed that once the test is developed, further research funding will be easier to get? Or will it just be more and more funding required for years and years to come?
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There are two separate threads of research, the MAP diagnostic test and the MAP vaccine. The diagnostic test is important because it will prove/disprove whether most Crohns patients are infected. I believe no further funding beyond the £370k will be needed. The vaccine development is a commercial venture requiring about £4M, but this is expected to be funded by an investor/drug company once the diagnostic test demonstrates wide spread infection.
 
Attention Everyone:

Originally all links were removed from the first post in this thread because it linked to a site that requests donations. This is against forum rules and the OP understood and stopped posting links. Yet many of you in this thread have continued to post links that request donations even after the OP explained why it wasn't allowed.

Please post the links somewhere off the site (your twitter account, Facebook, Bebo etc) or send the links in an email to your friends and family but please stop posting the fundraising links on the forum as it's against forum rules. This is a support forum first and foremost. Also keep in mind that the vast majority of people with Crohn's on the forum are having financial issues and cannot afford to give anything. Post the links elsewhere off the site.

*The sale of items and services are not allowed in threads, posts, signatures, or private messages. Requests for donations are not allowed in threads and posts, however you are allowed to have a short note and link in your signature about your legitimate charity. We realize this may seem uncaring but that is far from the truth. We feel such threads and posts could interfere with our cardinal rule that this is a support forum first and foremost.
http://www.crohnsforum.com[/B]/faq.php?faq=new_faq_item#faq_new_faq_item3

It's not allowed in your signature as it's not a legitimate charity. If I have to keep deleting the links from posts in this thread then the thread will be closed. Thank you for your understanding on this matter. :)
 
Jennifer said:
*The sale of items and services are not allowed in threads, posts, signatures, or private messages. Requests for donations are not allowed in threads and posts, however you are allowed to have a short note and link in your signature about your legitimate charity. We realize this may seem uncaring but that is far from the truth. We feel such threads and posts could interfere with our cardinal rule that this is a support forum first and foremost.
http://www.crohnsforum.com[/B]/faq.php?faq=new_faq_item#faq_new_faq_item3
Click to expand...

Jennifer,
Why not just delete the offending posts? I can see lots of a discussion about a research project that needs funding, but no direct requests for funding, so it's not clear to me which ones are problematic.

It's not allowed in your signature as it's not a legitimate charity.
Click to expand...

Kings College London is a university which is a legitimate charity with exempt status http://www.kcl.ac.uk/aboutkings/quality/charity.aspx
 
This forum RULES!!!

A great resource for everyone.

I dont think anyone is on here in an unsolicited way trying to milk money out of anyone…and I believe the reason the forum has this 'rule' is to prevent that kind of content.

I believe the reason people are posting links to facebook pages and websites that are trying to raise funds is that the people with Crohns disease who are posting those links truly believe that other people with Crohns would want to know about it and share it with any of their friends and family who HAVE money and want to see a cure for Crohns.

Dr John Hermon-Taylor is presenting a case for a cure for Crohns disease and it is my opinion that the whole community should rally behind him, yet they dont.

I find that hard to swallow…it is almost like the crohns associations, forums, and 'industry' built up around Crohns disease would be miffed if he was right and he eradicated crohns from the world...
 
JMC said:
Jennifer,
Why not just delete the offending posts? I can see lots of a discussion about a research project that needs funding, but no direct requests for funding, so it's not clear to me which ones are problematic.



Kings College London is a university which is a legitimate charity with exempt status http://www.kcl.ac.uk/aboutkings/quality/charity.aspx
Click to expand...

I have been deleting the links. Problem is that a lot of the links all share different information and if you're going to donate to the University it needs to go to the appropriate place so it funds the cause not the University itself.

I've contacted Professor John Hermon-Taylor about this issue and am waiting for a reply. Once there's an appropriate link with all the information you need then everyone can have the link along with a brief description in their signature about it.

Edit: I've edited the original post with an attachment which talks about the vaccine itself and how to donate (these are check donations).
http://www.crohnsforum.com/showpost.php?p=733489&postcount=1
 
I've been speaking with him and his daughter and they are working on setting up a paypal account or something where no 3rd party gets a cut (that's the main issue with donations in my opinion). So they are working with the forum to get something set up. I'll post the link as soon as it's available. Thank you everyone for your understanding. I'm all for any possible cure funding but I want to make sure that the money is going to the right place. :)
 
This really gives me hope for the first time since my son got sick:
(Latest update in the Crohn's MAP vaccine fb site)

A message of hope from Mary Sophia Kent, who won her battle against Crohn's Disease:

Hi Amy
I spoke to your father when I was at a very low point. I was 6 stone and steadily getting more and more poorly. He is an inspiring man. I took the rifabutin/clarif combo and under the care of the wonderful Jeremy Sanderson and his team I was better within months. That phone call saved my life and I'm eternally grateful for his kind words,time and advice. It was only by pure chance that I spoke to him over the phone at his office. I had phoned the hospital and asked to be put through and was just very, very lucky. Please pass on my thanks from the bottom of my heart. That was over 10 years ago and I've been well since. I will do anything I can to help with this please let me know. I'm happy to fundraise, participate in any research etc. All the best
Mary x
 
Its too early dear, first we need to set up the foundation for the charitywork. If you are interested in helping out, let me know.
 
At this point tzvia, they are looking to raise more funds in order to start human trials. They have no government funding and are relying on the people, charities etc to help raise enough money for it to go to human trials. If you check out the first post of this thread on page #1, you'll see an attachment that shows you how you can donate if you choose to do so (the attachment also talks about MAP and gives more information about the vaccine). They are working on getting an easier way to donate online that won't go through a 3rd party so all the donations can go directly to the cause and not let someone else get a cut of the money (the attachment on the first page goes directly to the cause yet you have to send in a check). Once that link is ready then I'll post it in this thread and edit it into the first post.
 
their facebook page is now asking ,

Is there someone in your life that has helped you through the low points of your life with Crohn's Disease? If there is, can you please write a few sentences (in the comments below) to say how important that person/s is/was to you and perhaps a little about how they helped you...we will add your quote to our 'MY HERO' collage that we are compiling.

If you have a photo of you with your hero, please email it to us [email protected] and we will add your quote to the photo and to the collage. We look forward to sharing the collage with you in coming weeks.
 
Hello everyone,

I'm excited about this research which could lead to chrohn cure...
I just saw an old videos on YouTube, Prof. explaining about the MAP Vaccine, its 6 years old,
Is it gonna take long? Could we see a Cure for Crohn in 1 year or 2 ? :/
 
Leopardos said:
Hello everyone,

I'm excited about this research which could lead to chrohn cure...
I just saw an old videos on YouTube, Prof. explaining about the MAP Vaccine, its 6 years old,
Is it gonna take long? Could we see a Cure for Crohn in 1 year or 2 ? :/
Click to expand...

From their fcebook page

"If full funding were in place, we would be looking at completing GMP (Good Manufacturing Practice) manufacture by the end of 2015. So the earliest the vaccine could be made available to patients would be mid 2016."

Unfortunately, full funding isnt in place.. at all. So even if the vaccine ends up working, it's a long way away.
 
Well in the scheme of things 2 years is not very long. Yes we all would like it now but 2 years will be here sooner than you know.
 
Stephen Sutton raised £1.9M for a cancer charity in 24 hours because he had terminal bowel cancer. 5M Crohns sufferers can raise the £4M needed quickly if necessary. Just believe.
 
Interesting information about the MAP test (check the full reply on their fb site):

" FAQ #7: Can I get tested for MAP?

MAP testing is not available through hospital clinics -it is currently only done in research laboratories. No tests for MAP are yet 'clinically validated' although with the modern methods used they are highly accurate and sensitive. This is the case worldwide, not just in the UK. Currently, specialists who treat Crohn’s with anti-MAP antibiotics usually do so without testing for MAP, in the knowledge that the vast majority of Crohn’s patients will test positive.

Prof. Hermon-Taylor is completing the development of a new diagnostic test for MAP. This is a smart, simple test which can be done on a blood or tissue sample. It will ultimately be automatable -so that hundreds of tests can be done very quickly, using standard equipment already available to hospital labs across the world...."
 
I think the problem is that this has been going on for so long - at least 25 years - that a lot of Gi's have come to the conclusion, rightly or wrongly, that if there was anything in it it would have been found by now.
 
GI are doctors. People looking at the zoonotic potential of MAP are biologists and biomedical engineer. It is in our benefit that GI don't get involved in this discussion, nor should they be.
 
Remember that Dr. Crohn himself thought MAP was a probable cause or trigger for the disease that now bears his name! But MAP is very, very difficult to culture. I don't think it was possible until modern DNA testing reached a certain level.
 
Mattie said:
I think the problem is that this has been going on for so long - at least 25 years - that a lot of Gi's have come to the conclusion, rightly or wrongly, that if there was anything in it it would have been found by now.
Click to expand...

It is true that the research has been going on for a long time, but during that time there has been slow steady progress against a back drop of very limited research funding. On a small scale, Crohn's patients have been tested for MAP infection (92% were positive) and of those, many achieved remission with a combination of antibiotics that target MAP. There is an argument over whether this is significant or not, but it persists mostly due to an absence of effective, large scale, clinical trials which could prove conclusively either way.

During the last twenty years the main issues faced have been:
1) It has been very difficult to test for MAP in blood and tissue samples
2) If the infection is cleared with antibiotics there is a high risk of re-infection
3) Producing a treatment that can permanently clear the body of MAP infection has been difficult

Recently, there has been significant progress on all counts, including new diagnostic tests for MAP, an extensive antibiotic trial and the development of an anti-MAP vaccine.

Although some gastros may dispute that MAP is the cause of Crohns, what they certainly cannot tell you is:
1) You are not infected with MAP because they do not have easy access to testing
2) If you were infected with MAP it would not cause any issues
 
Last edited:
Latest update on the Fb site:

Prof. Hermon-Taylor and his team have developed a modern DNA vaccine against MAP. This took 10 years and cost around £850,000, much of it donated by Crohn’s families, without whom this promising new vaccine would not exist. The key features of the Vaccine are:

(1) Treatment: Modern vaccines can be used to treat, as well as prevent, established chronic infectious diseases. If the vaccine works as well in humans as it does in cattle then there is every chance that it could CURE, or significantly attenuate, Crohn’s Disease

(2) Prevention: The vaccine could be given to those at higher risk of developing Crohn’s Disease (e.g. children of those with Crohn’s) to prevent them from ever getting the disease. It could also be given to domestic livestock to prevent MAP getting into the food chain in the first place. Although this would not eradicate exposure completely (MAP still exists within the environment) it would dramatically reduce human exposure.

(3) Mechanism of action: The vaccine is what is called a ‘T-cell’ vaccine. T-cells are a type of white blood cell -an important player in the immune system- in particular for fighting against organisms that hide INSIDE the body’s cells –like MAP does. Many people are exposed to MAP but most don’t get Crohn’s –Why? Because their T-cells can ‘see’ and destroy MAP. In those who do get Crohn’s, the immune system has a ‘blind spot’ –their T-cells cannot see MAP. The vaccine works by UN-BLINDING the immune system; stimulating the body’s T-cells to seek out and destroy cells containing MAP.

(4) Efficacy: In extensive tests in animals (in mice and in cattle), 2 shots of the vaccine proved to be a powerful, long-lasting stimulant of immunity against MAP. See below if you would like to read the published data from the trial in mice. The results from the trial of the vaccine in cattle are currently being prepared for publication... but we have already seen and analysed the data and they demonstrate even more strongly how effective the vaccine is.

(5) Safety: There were no obvious adverse effects from the vaccine in either of the animal trials. Obviously the vaccine still needs to be tested in humans... but because it is highly specific, targeting only MAP-containing cells, we would predict that the safety profile in humans is likely to be very similar to that in animals.

We need to get this Vaccine manufactured and into clinical trials!

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0001229
 

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