To gastroenterologists, the concept of a germ causing ulcers was like saying that the Earth is flat. After that I realized my paper was going to have difficulty being accepted. You think, “It’s science; it’s got to be accepted.” But it’s not an absolute given. The idea was too weird.

These were the frustrated words of Barry Marshall on getting his paper on helicobacter pylori accepted. And there are many parallels to be drawn between his journey and that of the Crohn’s MAP Vaccine and anti-MAP treatment in general.

For their work on H. pylori, Marshall and Warren shared a 2005 Nobel Prize. Today the standard of care for an ulcer is treatment with an antibiotic. And stomach cancer—once one of the most common forms of malignancy—is almost gone from the Western world.

Nobel Prize Winner Barry Marshall (image superstarsofscience.com)
Nobel Prize Winner Barry Marshall (image superstarsofscience.com)

Barry Marshall is the doctor who infected himself to prove a point. He worked with Robin Warren, a pathologist who had discovered the gut could be overrun by bacteria called Helicobacter pylori. By biopsying ulcer patients and culturing the organisms in the lab, Marshall traced ulcers and also stomach cancer to this infection. He realised the cure was anti­biotics, and therefore readily available. But mainstream gastroenterologists were unconvinced, sticking to the old idea that stress caused ulcers.

Unable to use lab mice, because these bacteria only affect  primates, and prohibited from experimenting on people, he grew desperate. He decided to experiment on the only human patient he could ethically recruit – himself. He took some H. pylori from the gut of a patient, added it to a broth, and drank it. He developed gastritis which is the precursor to an ulcer; he began vomiting, his breath began to smell, and he became sick and exhausted. In the lab, he biopsied his own gut, culturing H. pylori and proving that bacteria were the underlying cause of ulcers.

He told his story to Discover Magazine in 2010

But we have picked out some highlights for you…

On securing funding:

“I was getting all these patients and couldn’t keep tabs on them, so I tapped all the drug companies to request research funding for a computer. They all wrote back saying how difficult times were and they didn’t have any research money. But they were making a billion dollars a year for the antacid drug Zantac and another billion for Tagamet. You could make a patient feel better by removing the acid. Treated, most patients didn’t die from their ulcer and didn’t need surgery, so it was worth $100 a month per patient, a hell of a lot of money in those days. In America in the 1980s, 2 to 4 percent of the population had Tagamet tablets in their pocket. There was no incentive to find a cure.”

On the negativity of gastroenterologists:

“Whenever we presented our stuff to gastroenterologists, we got the same campaign of negativism. I had this discovery that could undermine a $3 billion industry, not just the drugs but the entire field of endoscopy.”

On garnering support from infectious-disease researchers:

They said: “This is important. This is great. We are going to be the new ulcer doctors.” There were lots of people doing the microbiology part. But those papers were diluted by the hundreds of papers on ulcers and acid. It used to drive me crazy.

I saw people who were almost dying from bleeding ulcers, and I knew all they needed was some antibiotics, but they weren’t my patients. So a patient would sit there bleeding away, taking the acid blockers, and the next morning the bed would be empty. I would ask, ‘Where did he go?’ ‘ He’s in the surgical ward; he’s had his stomach removed.’ ”

On getting the paper published:

“….it sat there as a hypothesis for another 10 years. Some patients heard about it, but gastroenterologists still would not treat them with antibiotics. Instead, they would focus on the possible complications of antibiotics. By 1985 I could cure just about everybody, and patients were coming to me in secret—for instance, airline pilots who didn’t want to let anyone know that they had an ulcer.”

On his eventual success

“Ultimately, the NIH and FDA ….. fast-tracked a lot of this knowledge into the United States and said to the journals: “We can’t wait for you guys to conduct these wonderful, perfect studies. We’re going to move forward and get the news out.” That happened quite quickly in the end. Between 1993 and 1996, the whole country changed color.”

On other infectious diseases

“Helicobacter made us realize that we can’t confidently rule out infectious causes for most diseases that are still unexplained. By the 1980s….. experts were saying everyone with an infectious disease could be cured by antibiotics. But what about when your kids were 2 years old? Every week they’d come home with a different virus. You didn’t know what the infections were. The kids had a fever for two days, they didn’t sleep, they were irritable, and then it was over. Well, you think it is over. It might be gone, but it has put a scar on their immune system. And when they grow up, they’ve developed colitis or Crohn’s disease or maybe eczema. There are hundreds of diseases like this, and no one knows the cause.”

So much of this story is analogous with our own campaign. BUT THERE IS ONE CRUCIAL DIFFERENCE BETWEEN THEM. In the 1980s and 90s there was no way for most patients to hear about their potential ulcer cure. Many lost their stomach just because they didn’t hear about it in time. Nowadays we have the internet, social media and other electronic means to prevent this same catastrophic thing happening again in the case of a cure for Crohn’s Disease.

To our followers…. we cannot stress enough how important is YOUR role in this. If YOU spread the word, the Crohn’s community can make the vaccine happen. If YOU donate whatever you can – just a small amount makes a big difference – we will ensure the vaccine arrives according to plan. We are so close, we cannot wait another 20 years to convince the GI community. We just need the trial and the results will speak for themselves!

YOU have the power at your fingertips; please exercise them as energetically as possible.

The entire 3 page article can be read here.

If you use social media you may like to use one of these versions of our “I want to be cured not managed” slogan to show your support for a loved one. They would also make great T Shirts!  The unique slogan and images were created by our late graphic designer Joanna Cardwell-Fox in 2014.  She wanted but one thing… to be CURED, not managed and tragically that did not happen for Joanna.

We would only ask that when you change your Facebook and/or Twitter profile pictures, please add the following links and hashtags to your Facebook and/or Twitter “Profile Descriptions”:

http://www.facebook.com/crohnsmapvaccine

https://crohnsmapvaccine.com

© Joanna Cardwell 2015. These are free for you to use to spread the message about the Crohn’s MAP vaccine.  The slogan and images may not be used to promote anything else. And if you use them for fundraising the money raised must go to Kings.

We would like to express our sincere thanks to The Worshipful Company of Grocers for awarding the Crohn’s Fund at King’s College London a grant of £3500. 

This will make a big difference to the research and help to bring the new MAP test to completion. The test will be instrumental in determining which Crohn’s patients are infected with MAP and, alongside the vaccine, will benefit many – if not all – people with CD.

http://www.grocershall.co.uk/

The calendars are ready at last! The Facebook competition did not go quite as well as planned but I hope you agree that they are an attractive way to spread the word for the whole year. All the photos are taken by supporters.

All the profits from the sale of each calendar will go directly to fund the research at Kings College.

Please note: these are being printed to order:

  • for delivery before Christmas (UK and Europe) please order by Friday 12th December
  • for delivery around January 1st (worldwide) please order by  Friday 12th December
  • for delivery around January 1st (UK and Europe) please order by  Friday 19th December

To order please click here.

Crohn's MAP Vaccine Team

We have come such a long way since Amy decided to run a marathon to help fund her father’s research.

As well as the medical team working on the research, testing and trials there is an ever growing group of supporters and fundraisers.

Initially a small group started applying for funding, designed the logo and constructed this website.

We have had more than 23,000 sessions on our webpage, since its launch at the end of June 2014, from 114 countries.

Our core team is a brave small band of Crohnies from across 3 continents who dedicate spare and not so spare time to organising, sharing, answering questions, manning Facebook and Twitter and updating the website.

Our Facebook page has 7,305 likes and we have 1,112 followers on Twitter.

There is a band of 19 and rising fundraising heroes.
The Heroes on JustGiving
The Heroes Facebook Page

There are others who don’t want to be in the social media spotlight finding answers and approaching organisations for larger donations.

Between us we have done a great deal to spread the word and move the possibility of the vaccine trial from a dream to a reality.

We have reached our first milestone to raise £70,000 to complete the laboratory development of the new simple, smart MAP test to partner the vaccine in the trial.

We are having a meeting in December to set our next goal and give a more detailed update.

Watch this space…