MAP diagnostic test Crowdrise site

[Mommabear]

There is now an online site, created by Amy Hermon-Taylor which is a 501 (c) 3 charitable organization, where Americans can donate to the Crohn's MAP diagnostic test to accompany the vaccine trial, allowing donations to be tax deductible:

https://www.crowdrise.com/CrohnsMAPVaccine/fundraiser/amyhermontaylor

I know some people on this forum have asked about this possibility, so this is to inform you that such an entity exists. It is my hope that the planned vaccine trial will indeed happen late next year and that a cure will soon be available to all of you suffering crohnnies.

 

[baistuff]

I am not expert in research, I'm just a clinician. Also, I am not trying to rain on the MAP parade. I have absolutely no idea if MAP is involved in the pathogenesis of CD or not.

Just ask yourselves the last time any medical breakthrough was obtained from a private group soliciting funds from a desperate patient population. Ask yourselves why Qu biologics is not going around asking for money? Heck, they are even PAYING patients to come out.

Just questions. Nothing more. Please don't accuse me about being anti-MAP. I'm not. I'm anti taking advantage of vulnerable patients.

M.D.

 

[xeridea]

I think the polio vaccine, penicillin and insulin all came out of non-pharma sources.

And infliximab (Remicade) came out of small research effort out of NYU, though funded by the university, an investment that has paid off handsomely for the research team and the school.

From what I understand, the public funds solicitation is for the MAP diagnostics test. The actual vaccine trials are being funded through private investment. FWIW, there is a different MAP trial going on in the U.S., led by Dr. David Y. Graham, MD, out of Baylor College of Medicine in Houston, for the triple-abx treatment, and relying on a diagnostic test has been licensed from Dr. Nasser's work at UCF which is being commercialized by Quest Diagnostics.

Dr. Hermon-Taylor's test can apparently integrate with current lab techniques and equipment much easier than the UCF test.

 

[Mommabear]

Maybe you are right, MD. Maybe I am just a desperate mother watching her once vibrant child very, very sick. Perhaps. But, one thing I do know is that funding for research is notoriously difficult to obtain. I also know that Kings College of London is not some obscure private group looking to profit from vulnerable people like myself. I also know people like Dr. Robert Greenstein affiliated with the veterans hospital in NewYork and who has published a great deal about MAP and actually has a vaccine patent, directed me to Dr. Hermon-Taylor. Dr. Greenstein told me he was not interested in trying to bring his own vaccine to trial because it cost too much money and was very difficult to do. Take a look at this TED talk where it discusses this same issue about funding for drug research: http://www.ted.com/talks/roger_stein_a_bold_new_way_to_fund_drug_research#t-657496.

I am well aware that this vaccine may not do anything, but if we do not try, we will never know. I have donated to this diagnostic test so that the vaccine can go to trial with the hope that it works, even if it only works for a quarter or a third of those who have Crohn's. Should we not try for fear that it is a sham? What if it is not a sham, and what if it actually works but never sees the light of day because cynicism trumped hope? Personally I need hope, and if this is not the answer then I will go onto the next one with as much enthusiasm. If every person who knew someone with Crohn's donated simply one dollar ... a lot less than a cup of coffee, we would at least find out if MAP is the major culprit in Crohn's and research could then be directed to eradicating it. I don't think most people would feel duped by simply giving up a dollar in exchange for knowledge.

 

[Poppysocks]

I am not expert in research, I'm just a clinician. Also, I am not trying to rain on the MAP parade. I have absolutely no idea if MAP is involved in the pathogenesis of CD or not.

Just ask yourselves the last time any medical breakthrough was obtained from a private group soliciting funds from a desperate patient population. Ask yourselves why Qu biologics is not going around asking for money? Heck, they are even PAYING patients to come out.

Just questions. Nothing more. Please don't accuse me about being anti-MAP. I'm not. I'm anti taking advantage of vulnerable patients.

M.D.

The qu vaccine could turn out to be more profitable than the map vaccine. The qu vaccine is not a cure, you have to continue giving it to yourself
. At least based on the results I've heard about so far.

 

[JMC]

Just ask yourselves the last time any medical breakthrough was obtained from a private group soliciting funds from a desperate patient population.

I think the world has changed substantially over the last 10 to 20 years. We did not have things like crowd funding until the internet made it possible to put the people with ideas in touch with the people with the money to make it happen. Just because this is relatively new and unique should not be off putting, it is probably a sign of where we are heading, particularly with "orphan" illnesses like Crohn's which have an enormous impact on a relatively small proportion of the population.

Over the last few months, I have also looked into the funding available for Crohn's research and the simple answer is that there is a shockingly small amount of money put into curing the disease. For example, CCUK which is the biggest Crohn's charity in the UK spent only £188,000 on medical research, based on their last published accounts from 2012. I would estimate (based on the figures I can find) there is no more than £10M available in the UK and $40M in the US for medical research into IBD, yet the spend on managing the illness runs into the billions annually. Without access to large pools of funding, unfortunately, there is little alternative other than to reach out to the people directly affected. If there were easy alternatives researchers would be taking them.

Ask yourselves why Qu biologics is not going around asking for money? Heck, they are even PAYING patients to come out.

Qu Biologics has been raising money, in exactly the same way that money is being raised to trial the Crohn's MAP Vaccine and that is through investments from high net worth private individuals. Maybe what you have not understood is that the fund raising done through the Crohn's MAP Vaccine website is to complete the research into the MAP Diagnostic Test, not the actual vaccine. The diagnostic test is an essential tool for proving the effectiveness of the vaccine and will allow Crohn's suffers to get an answer to the question "am I infected with MAP?" The target currently is to raise £70,000 from charitable donations and to get a research grant from one of the large medical bodies in the UK for the remaining £300,000. As you can see though, from the previous statistics, that is not an easy thing to do...

A bit of background: the vaccine was developed between 1997 and 2007, patents were registered and ownership transferred to HAV Vaccines Ltd in 2009. HAV Vaccines Ltd is a privately held company (just like Qu Biologics) where Prof John Hermon-Taylor is the largest share holder. It was set up with the sole aim of developing and licensing the Crohn's MAP vaccine to take it from the research laboratory to a treatment for patients. It is no different to any other small biotech company and investors putting money into the company are exposed to the same risks and rewards you would expect with a potentially ground breaking treatment. The main differences with Qu Biologics are that:

1. They are also treating cancer which attracts more money and attention
2. They have progressed further with their clinical trials and the promising results are rightly attracting more attention and money

Just questions. Nothing more. Please don't accuse me about being anti-MAP. I'm not. I'm anti taking advantage of vulnerable patients.

I can assure you, as someone who is a Crohn's patient who has direct access to the people involved in the Crohn's MAP Vaccine, no one is trying to take advantage of vulnerable patients. If anyone has any doubts, phone up Prof John Hermon-Taylor and talk to him directly. Or, if you can get to London, go and visit him in the lab, the contact details are on the website.

 

[baistuff]

I'm not even sure where to begin. First.... let me say again. i am NOT anti the MAP theory. Look, I took a Zpack (a macrolide antibiotic) and got Crohn's. I may likely be the poster boy for MAP. I would jump for joy is this ever came to fruition. My issue is not with the scientific theory. I give to various medical charaties, but all of them are well known, recognized and can produce results of what they have so far accomplished. To give to an individual, who may have a great theory, may even be on to something, but hasn't proven anything tangible in X number of years, just makes me take pause.

Things come from non-pharma sources all the time (penicillin was found by accident.) And sure people get private funding... but to lobby patients afflicted with the disease? Where is the collaboration with other MAP investigators? Are they present at major conferences? QU biologics presented at DDW this past spring. Did Herman-Taylor? Why am I reading the same things out of him today that were said in 2003? Why does he not have anything published (not including press releases) in 5 years?

All I am advising is a healthy skepticism as to the practice here. Crohn's has cost people here a lot of money, jobs, time, effort. I understand the desperation, the hope. Just be careful.

 

[JMC]

I give to various medical charaties, but all of them are well known, recognized and can produce results of what they have so far accomplished. To give to an individual, who may have a great theory, may even be on to something, but hasn't proven anything tangible in X number of years, just makes me take pause.

King's College London is one of the top Universities in the world, recently ranked 16th, and it is as credible as any charity you care to mention.

Unlike many of the big charities which you have probably donated to, 100% of the money is spent on research as there are no admin costs. Compare that with CCUK, for example, where only 25% of the money you donate is spent on grants and research. I would argue that you are being mislead if you are donating to a "well recognized" charity as they are wasting most of your money (on admin) and that is based on their own published account. You will also find it very difficult to verify that any of the money spent produced useful results as there is very little accountability. By all means correct me if you have an example where your charitable donation produced tangible results (in the field of IBD research). I have searched extensively and certainly cannot find any.

You are also not donating to an individual, you are making a donation to a university charity which is funding a medical research project led by Prof John Hermon-Taylor. Prof Hermon Taylor has published many papers and patents. He is world renowned in the field. Anyone who knows anything about the connection between MAP and Crohn's knows that.

Things come from non-pharma sources all the time (penicillin was found by accident.) And sure people get private funding... but to lobby patients afflicted with the disease?

First, the vast majority of the funds being raised are coming from investors making a rational decision to invest in the vaccine. Second, no one is "lobbying" Crohn's patients. Personally, I think it is only right the people who are likely to benefit have the chance to help make it happen. What would you prefer? People continue to suffer for years because good ideas sit unused due to lack of funding?

Where is the collaboration with other MAP investigators?

Have you listened to, for example, Thomas Boroday comments on Prof Hermon Taylor? Have you asked any of the "big names" in the field about him? He has collaborated with many people, but, is also in competition with people like Saleh Naser and Thomas Borody to cure Crohn's. I don't think there is anything unusual there, academic research has always been a mixture of competition and collaboration.

Are they present at major conferences?

Prof Hermon-Taylor received a life time achievement award at the recent International Conference of Paratuberculosis in Parma, Italy in June 2014.

QU biologics presented at DDW this past spring. Did Herman-Taylor?

He didn't attend as far as I know, but he is not resident in the US and is 77 years old so is unlikely to attend lots of conferences.

Why am I reading the same things out of him today that were said in 2003?

Maybe you could tell what you read in 2003, so I can give an explanation of has been done in the intervening years.

Why does he not have anything published (not including press releases) in 5 years?

Not sure where you are searching, but he has published a paper this year and the next paper with the data on the vaccine trial in cattle will be published very soon (it has been submitted). Some information has not been published in academic papers because of the need to protect the ideas with patents. This again, is perfectly normal.

All I am advising is a healthy skepticism as to the practice here. Crohn's has cost people here a lot of money, jobs, time, effort. I understand the desperation, the hope. Just be careful.

Fair enough, but given the inaccuracies in your posts and general tone it could be construed as trying to undermine a perfectly valid research project with misinformation.

 

[baistuff]

"Maybe you could tell what you read in 2003, so I can give an explanation of has been done in the intervening years."




Press release
Medical charity confirms link to Crohn’s Disease
6 August 2003
Leading medical charity Action Research has confirmed a highly significant association between Crohn’s disease and a type of bacteria known as Mycobacterium avium subspecies paratuberculosis (MAP). Over 90% of Crohn’s disease sufferers who took part in the study were found to be infected with the MAP bug. The results of this study are reported in the latest issue of the Journal of Clinical Microbiology. Crohn’s disease causes inflammation of the intestine and symptoms include chronic diarrhoea, abdominal pain, weight loss and extreme tiredness. Crohn’s affects about 100,000 people in Britain, with about 5,000 new cases reported every year. The MAP bug specifically causes chronic inflammation of the intestine in many animals including primates. The discovery that the MAP bug is present in the vast majority of Crohn’s sufferers means it is almost certainly causing the intestinal inflammation. MAP infection is widespread in animals, including domestic livestock, and is passed to humans in cow’s milk. Funded by Action Research, the groundbreaking study was carried out by Professor John Hermon-Taylor and his research team at St George’s Hospital Medical School in London. They used a state-of-the-art DNA test as well as advanced cultures to detect the MAP bug. “The association between the MAP bug and Crohn’s is highly significant,” said the Professor. “An unexpected finding of the research showed that patients suffering with Irritable Bowel Syndrome (IBS) were also infected with the MAP bug. Irritable Bowel Syndrome is a common condition affecting one person in ten, and is estimated to cost the NHS over £700 million a year.” “In animals, MAP inflames the nerves of the gut,” said the professor. “Recent work from Sweden shows that people with IBS also have inflamed gut nerves. There is a real chance that the MAP bug may be inflaming people’s gut nerves and causing Irritable Bowel Syndrome.” Simon Moore, Chief Executive of Action Research said: “We believe this is tremendously important research, which is why the Charity has funded work in this area for almost twenty years. Action Research is supporting Professor Herman Taylor’s efforts to develop a modern anti-MAP vaccine to treat Crohn’s disease sufferers. This vaccine stimulates the immune system, so that-MAP infected Crohn’s sufferers can fight the MAP bugs themselves.” Professor John Hermon-Taylor has been supported by Action Research for almost 17 years, with funding of more than £940,000. The trial results of his new vaccine for Crohn’s sufferers should be available later this year. “The problems caused by the MAP bug are a public health tragedy”, believes Professor Hermon-Taylor. He has sent a copy of the paper to Sir Liam Donaldson, Chief Medical Officer at the Department of Health. The Food Standards Agency has already confirmed Professor Hermon-Taylor’s original findings, and showed live MAP bacteria in two per cent of retail pasteurised milk cartons. Action Research is calling for Crohn’s to be made reportable disease by the Department of Health. The medical charity also wants to see an increase in the stringency of milk pasteurisation, tests for MAP in dairy herds, and the staged introduction of improved on-farm procedures for reducing MAP infection. Professor Hermon-Taylor believes these will reduce the problem but not eliminate it, and is pressing for effective MAP vaccines for both animals and humans. Action Research does not recommend that anyone stops drinking milk. However for those individuals with Crohn's disease or their close relatives, who may feel particularly at risk, it may be sensible to start drinking UHT milk. As UHT involves higher pasteurisation temperatures, it is probable that MAP is destroyed. MAP has a low level of infectivity and is tolerated by the vast majority of people with no ill effects. Factors involved in contracting Crohn's could be an inherited susceptibility, co-incidental infection (gastro-enteritis or multi-viral infections in childhood) and also psychological conditions and stress, both of which make people (and animals) vulnerable to disease. Ends For more information or to interview Simon Moore or Professor Hermon Taylor please telephone Louise Brown, Press Officer, 01403 327403 (direct line), Vincent House, North Parade, Horsham, West Sussex RH12 2DP or email [email protected] Rob Orme, Public Relations Officer 01403 327404 (direct line) or email [email protected]

 

[baistuff]

So, if you count the 17 years beforehand, plus the last 11, Please tell me exactly what has been accomplished in the nearly 3 decades of this research. Not theories. Proof of actual tangible advancements in the past 28 years.

Please name me major digestive disease organization. (CCFA or equivalent- I realize that's American) that publically has backed this.

I cannot claim how research money is allocated in the UK, how one receives grants etc... so I will have to take your word on the money. after 28 years though, I'd like some evidence of progress.

 

[baistuff]

http://www.aeii.org/DrTaylor/Treatment/VaccineCDsummary.pdf

From July 2006

 

[JMC]

Action Research provided funding for the development of the vaccine. The time line and amount spent is in the FAQs on the Crohn's MAP Vaccine website. The result of this funding and research was a vaccine which was patented. There have been two trials of the vaccine, one in mice. which was published in 2007, the other in cattle conducted between 2010 and 2013 which should be published very soon. The only issue has been progress has been slower than desired, but that is a reflection of the difficulties in getting funding.

 

[JMC]

http://www.aeii.org/DrTaylor/Treatment/VaccineCDsummary.pdf

From July 2006

Simple answer, he did not raise the funding (and actually had some health challenges for a few years which slowed down progress). You can see from the timeline above, that he subsequently got funding for a trial in cattle. You cannot manufacture a complex modern vaccine without substantial funding and you cannot conduct a clinical trial without a lot of clinical support and funding.

 

[JMC]

Please name me major digestive disease organization. (CCFA or equivalent- I realize that's American) that publically has backed this.

The vaccine trial in Mice was funded partially by CCUK. Their scientific advisors at the time found the case for MAP as the cause of Crohn's as "unproven" and therefore did not provide further funding. Putting so much trust in "major digestive disease organizations" is in my opinion misguided. They have their own agendas and motives and corporate sponsors...

 

[baistuff]

14 years ago.....


Vaccine to treat crippling Crohn's disease developed in London
By Martin Halle and Lorraine Fraser
12:00AM GMT 03 Dec 2000
Comment
BRITISH researchers believe that they have made an important breakthrough in the search for a vaccine against the crippling digestive illness Crohn's disease.

As many as 80,000 people in Britain are stricken by the condition, which leads to a chronic inflammation of the intestine, wrecking patients' lives. It is becoming increasingly common with 4,000 to 8,000 new cases a year.

John Hermon-Taylor, professor of surgery at St George's Hospital in south London, links the illness with a TB-like bacterium called MAP (mycobacterium avian subspecies paratuberculosus) which causes a similar illness in cattle, sheep, pigs and primates.

Professor Hermon-Taylor believes that MAP is contaminating the human food chain. While it may be tolerated by most people, the consequences for a minority who are susceptible can be disastrous. A study by the Food Standards Agency this year established that the bacterium can survive pasteurisation and found it in more than two per cent of both pasteurised and unpasteurised milk samples.

Now Professor Hermon-Taylor is developing a therapeutic vaccine to treat patients. Professor Hermon-Taylor says that the bacterium is resistant to standard anti-TB drugs and has learned to "hide" from the body's immune defences by invading white blood cells. Its hidden presence unbalances the delicate physiology of the gut, making it leaky to other bacteria and food molecules, triggering inflammation.

 

[baistuff]

I ask again, and no pretty algoritms are needed.

Besdies releasing press releases with very nice theories every few years, please name me one FACT or tangible medical advancement that this has brought in the past 28 years outside of cows?

Ask yourself why the microbiome project has taken off worldwide, things like fecal transplant, SSI research (vaccine and tx) are gaining momemetum and steam worldwide, while the press releases and statements from this team remain exactly the same time after time, year after year, decade after decade.

 

[baistuff]

The vaccine trial in Mice was funded partially by CCUK. Their scientific advisors at the time found the case for MAP as the cause of Crohn's as "unproven" and therefore did not provide further funding. Putting so much trust in "major digestive disease organizations" is in my opinion misguided. They have their own agendas and motives and corporate sponsors...

Wow. the irony. You mistrust our biggest support organizations but give money to individuals who haven't accomplished anything because of a nice theory.

 

[baistuff]

One final question... and again, I actually think the MAP theory holds water. How is it that Dr. Naser at UCF has university backing, Pharma backing, and is currently doing a collaborative study in the US and Israel (and maybe even elsewhere) while for 28 years Herman-Taylor has basically idled in neutral?

JMC, I'm really not trying to give you personally a hard time. Neither of us deserves this disease and I hope one day we can both celebrate its eradication. I just don't think it serves crohnies well to encourage them to part with money for something that has yielded very little. I think if you took a step back and looked at the statements over the years, the lack of significant backing, support, and evidence of any successes, the constant plea for donations, it should at least be cause for pause before any tangible support.

 

[JMC]

14 years ago.....


Vaccine to treat crippling Crohn's disease developed in London
By Martin Halle and Lorraine Fraser
12:00AM GMT 03 Dec 2000
Comment
BRITISH researchers believe that they have made an important breakthrough in the search for a vaccine against the crippling digestive illness Crohn's disease.

As many as 80,000 people in Britain are stricken by the condition, which leads to a chronic inflammation of the intestine, wrecking patients' lives. It is becoming increasingly common with 4,000 to 8,000 new cases a year.

John Hermon-Taylor, professor of surgery at St George's Hospital in south London, links the illness with a TB-like bacterium called MAP (mycobacterium avian subspecies paratuberculosus) which causes a similar illness in cattle, sheep, pigs and primates.

Professor Hermon-Taylor believes that MAP is contaminating the human food chain. While it may be tolerated by most people, the consequences for a minority who are susceptible can be disastrous. A study by the Food Standards Agency this year established that the bacterium can survive pasteurisation and found it in more than two per cent of both pasteurised and unpasteurised milk samples.

Now Professor Hermon-Taylor is developing a therapeutic vaccine to treat patients. Professor Hermon-Taylor says that the bacterium is resistant to standard anti-TB drugs and has learned to "hide" from the body's immune defences by invading white blood cells. Its hidden presence unbalances the delicate physiology of the gut, making it leaky to other bacteria and food molecules, triggering inflammation.

Yes, he developed the vaccine mentioned 14 years ago and it took a long time. What is your point?

 

[JMC]

Ok, so it has taken this long for you to make your point, you think that Prof Hermon-Taylor has been asking for and getting funding for years and produced nothing of value?

One final question... and again, I actually think the MAP theory holds water. How is it that Dr. Naser at UCF has university backing, Pharma backing, and is currently doing a collaborative study in the US and Israel (and maybe even elsewhere) while for 28 years Herman-Taylor has basically idled in neutral?

Let's exam that in some detail. Dr Naser is conducting a trial for Redhill Biopharma (RHB-104) of an anti-MAP therapy based on a combination of anti-biotics. Redhill Biopharma licensed the anti-biotic combination from Sydney-based Giaconda, which is part owned by Thomas Borody. Thomas Borody developed the ideas for that therapy from working with Prof John Hermon-Taylor - just watch the Youtube video I mentioned early where he clearly states JHT is the world expert and taught him everything. So, fundamentally, everything Dr Naser is doing can be traced back to Prof Hermon-Taylor. Why has he got funding when Hermon-Taylor has struggled? I would say because he is better connected and a better businessman.

JMC, I'm really not trying to give you personally a hard time. Neither of us deserves this disease and I hope one day we can both celebrate its eradication. I just don't think it serves crohnies well to encourage them to part with money for something that has yielded very little. I think if you took a step back and looked at the statements over the years, the lack of significant backing, support, and evidence of any successes, the constant plea for donations, it should at least be cause for pause before any tangible support.

You are making the assumption that I have not already done that and worked through all of the questions and arguments. The main difference is that I have asked those questions directly to John Herman-Taylor, either in person or via email. No one has been more critical of his progress or asked as many difficult questions directly as I have.

You repeatedly assert that it has not produced anything, but he has a vaccine and has protected the IP with patents. What he lacks is definitive proof that the vaccine will eliminate MAP in humans without side effects and that doing so will cure the symptoms of Crohn's. Do I think that is worth funding? Yes.

 

[D Bergy]

The American cancer institute gets close to 5 billion a year.

The war on cancer was declared when president Richard Nixon was in office.

Precious little return on that perpetual investment.

Dan

 

[rollinstone]

Baistuff, I think you need to do more research into the map thing, To say there hasn't been advancements through the years is sorely wrong... I understand your skepticism but JMC is right here, everything he's said is factual, and if you actually do some more research you'll see that this vaccine has some of the best potential to cure a substantial amount of people with cd, all of them is maybe a stretch because CD is likely the result of various offenders. The main two (which have been identified time and time again as MAP and AIEC)

 

[baistuff]

The American cancer institute gets close to 5 billion a year.

The war on cancer was declared when president Richard Nixon was in office.

Precious little return on that perpetual investment.

Dan

No offense, but this is probably the most ridiculous comment I've head in my 15 years of practicing medicine. We can cure breast, prostate, colon, testicular, multiple forms of lymphoma and some leukemias and have turned many others into chronic conditions with treatment. Are some still horrible killers? sure. Is more progress needed? of course. But your comment is just plain wrong. I'd be happy to introduce you to thousands of cancer survivors.

 

[baistuff]

Baistuff, I think you need to do more research into the map thing, To say there hasn't been advancements through the years is sorely wrong... I understand your skepticism but JMC is right here, everything he's said is factual, and if you actually do some more research you'll see that this vaccine has some of the best potential to cure a substantial amount of people with cd, all of them is maybe a stretch because CD is likely the result of various offenders. The main two (which have been identified time and time again as MAP and AIEC)

I know one of the heads of the NIH digestive disease dept. I'll take his word over yours. This is NOT about MAP. this is about the one the investigators, who is 28 years produces the same press releases and papers over and over again. Again, for the umpteenth time, I am NOT anti MAP. Naser's work is interesting. Certainly AIEC and QBECO are VERY interesting. I'm trying to save you all from throwing money away out of desperation.

Not sure why I am wasting my time. I tried. Keep the faith. Let me know when Herman-taylor saves the world.

 

[Poppysocks]

I know one of the heads of the NIH digestive disease dept. I'll take his word over yours. This is NOT about MAP. this is about the one the investigators, who is 28 years produces the same press releases and papers over and over again. Again, for the umpteenth time, I am NOT anti MAP. Naser's work is interesting. Certainly AIEC and QBECO are VERY interesting. I'm trying to save you all from throwing money away out of desperation.

Not sure why I am wasting my time. I tried. Keep the faith. Let me know when Herman-taylor saves the world.

Thanks, he'll get his shot. The Vaccine is made and it just needs to go to trial, which it will late next year.

I don't understand why you are displaying so much hostility in this thread. For an "MD" you really don't do a good job of balancing your rationality with your emotions.

 

[Mommabear]

I'm confused. You seem to be saying that MAP may indeed be the cause of Crohn's for most people, but you take issue with Professor Hermon-Taylor, because he has been on the scene for so long and has nothing to show for it?

So, do you dismiss the vaccine because it is scientifically faulty, or do you dismiss it simply because he has not come up with the funding for it? If it is the latter, do you believe that all medical research that merits funding actually gets it? Did you listen to Roger Stein's TED talk?
"Believe it or not, about 20 years' worth of potentially life-saving drugs are sitting in labs right now, untested. Why? Because they can't get the funding to go to trials; the financial risk is too high."

My brother is a research scientist and I have seen first hand the difficulties they have to secure money. Sometimes it is just difficult and sometimes younger charismatic ones ride in on the coat tails of others and swoop up the money and/or credit. It happens a lot!

If you don't believe in the scientific validity, fair enough. I am not going to try to convince you otherwise. However, if you are concluding that the vaccine has no merit because if it did, it would have been funded a long time ago, I think you might want to revisit that conclusion. I can understand why you would think that way, and I have asked myself the same thing, but having seen how things work with my brother, I know that brilliant ideas are often overlooked.

I think everyone who is touched by Crohn's is frustrated by the slow pace of novel therapies. I think Crohn's patients should take a page from AIDS activists and demand more funding.

Regarding the more recent potential treatments which have attracted the spotlight ...

Fecal transplants have garnered so much attention because of the remarkable success it has at treating Clostridium Difficile, and the fact that people were so desperate they were doing the procedure at home and it worked! It might eventually work with Crohn's, but Dr. Borody has acknowledged that so far, it is not there yet. And I spoke to a Harvard doctor just last week who has done some FT in trials and it helped people for about a month and then they were back to where they had been before ... It is going to take a long time to get it right. It might even take 14 years .

Anti-MAP treatment ... I tried to get my son into the Redhill trial, but he did not fit the criteria. Actually though, I am surprised that Redhill took this on. I know that some people have gone into remission, but from what I can tell, it is not really a cure and most people need to stay on it for over ten years (actually maybe THAT is why Redhill took it on ...). I do know that The antibiotic treatment does not work for cows. And Dr. Borody, the doctor who created the protocol and who did in fact cure Judith Lipton, said that the vaccine would be a great addition to the arsenal to fight Crohn's. Perhaps the successful treatment will include both antiMAP AND the vaccine.

QuBiologics also seems promising ... for some people, which is in line with the theory that Crohn's is more of a syndrome and that there are different causes, thus not all treatments will work for all people.

I do not believe that Professor Hermon-Taylor is a snake oil salesman. I see him rather as a wise sage, plodding along, and incredibly devoted to the cause (a kind of Tortoise and the Hare type of character). After all, he is 77 years old. I am sure he has a comfortable pension; he could be philosophical and could simply enjoy the years he has in front of him instead of tirelessly working to bring his vaccine to trial. But he believes in his product and if it requires us to help him, so be it.

Plodding along slowly is frustrating and warrants question, but in this case I think it would be a tragedy to discard his work with the enormous potential it has to improve the lives of so many people, just because the big players have not supported him. And if this vaccine actually does work then these same players are going to have a lot of explaining to do as to why they did not fund it so long ago.

 

[Lady Organic]

nobody will be ruined by giving a few dollars to a medical project. People are ruined by buying excessive material goods, this is what one should be worried about. The only way of knowing if this cure is possible is to finally try it. whether if it works or not, science will evolve with new information and that is what we all want and need. The low potential negative side effects of this vaccine make it extremly interesting as opposed to the poisons we are currently served. we'd be fools not wanting to try something different. as long as a good medicine is not found,we must remain open to all ideas and possibilities. thats the only way to do and thats what science is about.

 

[javanov]

nobody will be ruined by giving a few dollars to a medical project. People are ruined by buying excessive material goods, this is what one should be worried about. The only way of knowing if this cure is possible is to finally try it. whether if it works or not, science will evolve with new information and that is what we all want and need. The low potential negative side effects of this vaccine make it extremly interesting as opposed to the poisons we are currently served. we'd be fools not wanting to try something different. as long as a good medicine is not found,we must remain open to all ideas and possibilities. thats the only way to do and thats what science is about.

Fair points

 

[rollinstone]

I agree, and that's the attitude we all need to find a cure, don't stop searching until it's found

 

[JMC]

I know one of the heads of the NIH digestive disease dept. I'll take his word over yours. This is NOT about MAP. this is about the one the investigators, who is 28 years produces the same press releases and papers over and over again.

I think it is only fair you name that person, so we can evaluate whether their opinion has any value.

Over very many years, the subject of MAP and Crohn's has been controversial with two strongly polarized opinions, those who believe it is the causation of Crohn's disease and those who do not. It is no great surprise that there are people who are against Prof Hermon-Taylor and the work he has done. Crohn's is an illness where the existing treatments generate enormous revenues for pharmaceutical companies and keep many people in the medical profession in well paid work. When a pathogen is decisively proven to be the cause of Crohn's disease, whether it is MAP, AIEC or something else, it will have a substantial and negative effect on many people and their livelihoods who currently benefit from us being sick. Many of those people are employed in the pharmaceutical, medical or farming industries all of whom have powerful lobbies so it would be very naive to believe they would sit back and just let it happen. Everyone has biases, motives and incentives, you need to ask yourself, when all that is being presented is opinion, what is shaping theirs?

 

[Usagi]

-Ahem-

Regardless of whether or not MAP causes Crohn's, we know it exists and we know it exists prolifically in Crohn's patients. Shouldn't this research be funded so at the very least we have a better way to eradicate an infectious organism that is preying upon weak Crohn's-ies?
Not like the little bacteria are sitting there helping us... :shifty-t:

Either way, funding this research has merit.

 

[worriedboy]

I couldnt help myself - I just dont understand where you are getting to with this "28 years" theory.
What is more reasonable than Crohns community try and change their destiny by helping themselves ? I also saw Prof HT publication back then 12 years ago, and yeah some of them resemble those of nowadays, so what ?

What are you suggesting ? That a 77 years old Prof with world class name and his doctor daughter are going to run away with the money we contribute for the MAP test ?! This nice modest man who meet up with patients from around the globe and with this very forum members for a coffee to answer their questions - do you doubt his honesty ?
Personally, HT - father and daughter in my eyes are so noble and I admire their willingness to try and help sick people with CD. They put thier energy into it; their time; their name. This is way not trivial.

Those few bucks we donate - I think this is not the issue. It cant be that you are targeting this ...
For once and for all to find out of MAP is causative or not.

 

[Poppysocks]

I couldnt help myself - I just dont understand where you are getting to with this "28 years" theory.
What is more reasonable than Crohns community try and change their destiny by helping themselves ? I also saw Prof HT publication back then 12 years ago, and yeah some of them resemble those of nowadays, so what ?

What are you suggesting ? That a 77 years old Prof with world class name and his doctor daughter are going to run away with the money we contribute for the MAP test ?! This nice modest man who meet up with patients from around the globe and with this very forum members for a coffee to answer their questions - do you doubt his honesty ?
Personally, HT - father and daughter in my eyes are so noble and I admire their willingness to try and help sick people with CD. They put thier energy into it; their time; their name. This is way not trivial.

Those few bucks we donate - I think this is not the issue. It cant be that you are targeting this ...
For once and for all to find out of MAP is causative or not.

Noble is a good word. I think, when you study philosophy, and you are trying to figure out what the definition of "good" is, it's instances like this that fit the criteria. Professor JHT is a good man.

 

[D Bergy]

In all fairness, the doctor was just saying, "be careful". Good advice for anyone giving to a cause. If you have done your research and are comfortable with the person, organization, you have done your due diligence.

I chose to donate money to a private cancer researcher. But only because I knew a bit about him, and I am familiar with his method. It always comes down to the character of the individual in these smaller research efforts.

Dan

 

[baistuff]

I think MAP may have some correlation to CD (not necessarily causation.) Dr. HT has been spinning his wheels for more than 2 decades and every few years puts out a press release that he has developed a vaccine, the trial will start real soon. The story never changes. And oh, if that is the case it's because not enough people are funding him.
It screams going nowhere, and I don't like seeing sick people being given hope of something around the corner when in reality that corner is nowhere to be seen.

MAP is ABSOLUTELY worth investigating. Ask yourselves why Dr. Naser doesn't need press releases every 2 years. Why he has major university and pharma backings, arms of his studies elsewhere, including other countries. That's the way research works.

In med school I participated in a small very simple study on nitrous oxide in sickle cell patients. The grant was about 50K total, yet we had 3 universities, 3 lead investigators and 3 hematology fellows and a bunch of students helping out, all to just measure pain scores in sickle cell crises and the response to N.O. Dr. HT is hoping to CURE a devastating worldwide disease and in almost 3 decades is still a lone ranger? He gets sick and everything comes to a halt? I wish him the best but what happens if god forbid something happens to him? Is the whole thing up in smoke? Real research doesn't operate this way.

 

[rollinstone]

What you're not understanding is dr Naser, Borody etc and all the work being done on MAP is a result of professor JHT... He's not a Lone Ranger he's been a pioneer in map and cd...

 

[xeridea]

Baistuff, I'll refer back to the history of Remicade, the gold standard in treating Crohn's. It's development started in the '70s. It was approved for CD by FDA in '98, some two, maybe 3 decades of intervening years later. Maybe there is nothing to come of the Professor's efforts, but since the medical community has little to offer in the form of concrete answers to Crohn's, lets give some of the mavericks in the scientific community a chance. If it doesn't pan out then fine. I'm willing to part with $100 on that. Don't take it personally, but not everyone trusts the medical community on this disease. Y'all have little to offer on its etiology and take crap shots at its treatment. But I do enjoy this conversation thread. Don't be disheartened that you can't convince me on "wasting" my money on false hopes. I don't mind being a fool parting with her money on this. I have done so with many times more $$$ on less meaningful things.

 

[UnXmas]

Over very many years, the subject of MAP and Crohn's has been controversial with two strongly polarized opinions, those who believe it is the causation of Crohn's disease and those who do not. It is no great surprise that there are people who are against Prof Hermon-Taylor and the work he has done. Crohn's is an illness where the existing treatments generate enormous revenues for pharmaceutical companies and keep many people in the medical profession in well paid work. When a pathogen is decisively proven to be the cause of Crohn's disease, whether it is MAP, AIEC or something else, it will have a substantial and negative effect on many people and their livelihoods who currently benefit from us being sick. Many of those people are employed in the pharmaceutical, medical or farming industries all of whom have powerful lobbies so it would be very naive to believe they would sit back and just let it happen. Everyone has biases, motives and incentives, you need to ask yourself, when all that is being presented is opinion, what is shaping theirs?

I have little knowledge of MAP or funding research, but I do have a question about this. In the UK, the government desperately needs to cut down the amount spent on medical care. It's in the government's interest to keep people healthy, not sick. As far as I'm aware from reading this forum, the treatments for Crohn's in the US are also used in the UK.

I expect various companies developing and selling medications here want to make more profit, but surely the government has considerable influence too, and would use it to push for a cure?

 

[JMC]

I have little knowledge of MAP or funding research, but I do have a question about this. In the UK, the government desperately needs to cut down the amount spent on medical care. It's in the government's interest to keep people healthy, not sick. As far as I'm aware from reading this forum, the treatments for Crohn's in the US are also used in the UK.

I expect various companies developing and selling medications here want to make more profit, but surely the government has considerable influence too, and would use it to push for a cure?

Yes, that is a very good point and one that is being pursued. The challenge is the monstrous bureaucracy you face with government. Surprisingly in a democracy, it is very hard to approach the government with a good idea and have anyone take action with it. The only time they listen to opinion is when they are trying to get elected and even then, they tend to follow what is popular rather than what is good for the populous.

 

[rollinstone]

Way of the world unfortunately

 

[worriedboy]

I think MAP may have some correlation to CD (not necessarily causation.) Dr. HT has been spinning his wheels for more than 2 decades and every few years puts out a press release that he has developed a vaccine, the trial will start real soon. The story never changes. And oh, if that is the case it's because not enough people are funding him.
It screams going nowhere, and I don't like seeing sick people being given hope of something around the corner when in reality that corner is nowhere to be seen.

MAP is ABSOLUTELY worth investigating. Ask yourselves why Dr. Naser doesn't need press releases every 2 years. Why he has major university and pharma backings, arms of his studies elsewhere, including other countries. That's the way research works.

In med school I participated in a small very simple study on nitrous oxide in sickle cell patients. The grant was about 50K total, yet we had 3 universities, 3 lead investigators and 3 hematology fellows and a bunch of students helping out, all to just measure pain scores in sickle cell crises and the response to N.O. Dr. HT is hoping to CURE a devastating worldwide disease and in almost 3 decades is still a lone ranger? He gets sick and everything comes to a halt? I wish him the best but what happens if god forbid something happens to him? Is the whole thing up in smoke? Real research doesn't operate this way.

They were a physiologist and a doctor who found out that H. Pylori cause stomach ulcers ... no fancy backup from pharma companies, nor any support from tge medical community. Their insistence and ambition led to the discovery and approve their assumption, not before Barry Marshal infected himself with it.

So does this make them less real ?
3 universities x 3 hematology fellow and some students running around the lab are no guarantee for anything.

There's a theory here that has not been investigated the whole way. It does not matter to me why, if this was a lack of funding (which is a totally valid reason, dont understand why you dismiss it), or Prof HT being occupied in his carrier, or the lack of modern vaccacine techniques that exists now adays opposed to 25 years ago. It's here, and it has to be checked out.

And I dont see anybody else but HT taking it seriously (besides, Redhill's RHB104 which is Borodie's, which as already said before - a derivative of HT ideas).

So I think we should support him with all we can, cause he is for us, and he is real as much as real is a valid description in this world. And trials like RHB104 are a proof that the man's work has resonated more than "just" some press releases.

 

[24601]

This is such a good discussion here that I would love to resurrect this thread and talk about any successes supporters of this potential cure have had raising donations for the test and the vaccine and increasing awareness.

As someone who has been a fortunate recipient of JHT's personal advice, I would agree with those who describe him as noble.

I have nothing but the utmost respect for his dedication to this research. Medical research is slow. And that's painful and frustrating for those of us suffering from this disease or those watching someone they love in pain.

That's why I think those of us who can afford to donate and are willing to should at least know about the opportunity.

For anyone who doesn't have the link, you can donate here with 100% of your donation going to research (with no admin costs):
https://www.justgiving.com/CrohnsMAPVaccine-MEN9150/

And read more about their plans for trials of the MAP test and vaccine here:
http://crohnsmapvaccine.com

 

[24601]

Just as a quick follow up to my previous post about fundraising and awareness, I'm planning on adding my contribution to this planned photo slideshow on the Crohn's MAP Vaccine facebook page (inspired by this one)

It would be great to get as many photos from Crohnies and their friends and family around the world as possible!

 

[Malgrave]

Please check this out:

https://www.facebook.com/crohnsmapv...7832267319217/546955748740201/?type=1&theater

 

[Malgrave]

Campaign update:

http://us10.campaign-archive2.com/?u=438c2985e4a37f81f082c28e3&id=31e7d3e062&e=[UNIQID]