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


 
07-05-2014, 03:13 PM   #301
WelshGuy
 
Join Date: May 2014
JMC

Perhaps a target date by which they need to raise the £80,000 to complete the MAP test ( I think it's November this year, but not sure) and a countdown to that date, so that donors can see how close we are.
I see no benefit to putting a deadline.
07-05-2014, 03:44 PM   #302
Malgrave
Senior Member
 
Malgrave's Avatar
 
Join Date: Jul 2012
Location: Belgium

My Support Groups:
The state of play of fundraising was posted last Sunday on the Crohn's MAP Vaccine facebook site:

https://www.facebook.com/crohnsmapvaccine
07-05-2014, 03:57 PM   #303
Crohn2357
Senior Member
 
Crohn2357's Avatar
 
Join Date: Aug 2013

My Support Groups:
Malgrave, do mapvaccine group need Turkish translation?
Is this the only page that needs to be translated?
http://crohnsmapvaccine.com/wp-conte...14_ENGLISH.pdf
07-05-2014, 04:17 PM   #304
Malgrave
Senior Member
 
Malgrave's Avatar
 
Join Date: Jul 2012
Location: Belgium

My Support Groups:
Crohn2357: Turkish translation would be great!

Can you please send me your email address (with a private message or send a message to the Crohn's MAP vacicine facebook site) so I can send you the word version. It is easier to work if you have a word version available ;-)

Thank you very much in advance!
07-05-2014, 05:09 PM   #305
JMC
Senior Member
 
JMC's Avatar
 
Join Date: Sep 2011
Location: London, United Kingdom
I see no benefit to putting a deadline.
Deadlines are useful to get people to take action and provide a sense of urgency. Without a clear time frame, people tend to think "it can wait until tomorrow" and before you know it, years have slipped by and nothing has happened. Which is the story of the development of Crohn's treatments in my experience, decades slip by and virtually nothing changes!

£80,000 by November sounds like a good target to me :-)
07-05-2014, 05:15 PM   #306
Poppysocks
Senior Member
 
Join Date: Jul 2010
Location: Tampa, Florida

My Support Groups:
Deadlines are useful to get people to take action and provide a sense of urgency. Without a clear time frame, people tend to think "it can wait until tomorrow" and before you know it, years have slipped by and nothing has happened. Which is the story of the development of Crohn's treatments in my experience, decades slip by and virtually nothing changes!

£80,000 by November sounds like a good target to me :-)
This is why I think it's a good idea to do a couple "Moneybombs". It's not really a deadline, just a day where everyone comes together to donate. It gets marketed heavily, passed onto many different crohns forums, other various channels, etc..

Because, like you said, without something like that, it doesn't really feel like your giving much.
07-05-2014, 08:15 PM   #307
Orchid
Banned
 
Join Date: Mar 2014
Location: Springfield, Oregon

My Support Groups:
I don't understand why there is no link between MAP and UC, but there is definitely one between MAP and Crohns. So I guess UC is caused by something else? Not saying I have UC, although I was first diagnosed with Crohns, then 3 years ago I was diagnosed with Chronic Colitis.

I always just thought Colitis was pretty much just Crohns except limited to the colon.
The immune system is amazingly complicated and that is a childishly narrow view of the two diseases. They're not grouped together like animals in the same genus, they're grouped together because their symptoms are so alike. One of the current theories on UC is it's a true autoimmune disorder based on T-Cell overactivity in the colon while Crohn's research is largely currently focused on immune mediation problems, so it it maybe immune deficiency. Especially given many of the implicated genes are involved in immune signaling needed to detect and effectively combat bacteria. They couldn't be more unlike one another in terms of cause.

Sometimes I really wish I went the whole way and got a PHD in this field, it's so AWESOME.
07-05-2014, 08:31 PM   #308
Poppysocks
Senior Member
 
Join Date: Jul 2010
Location: Tampa, Florida

My Support Groups:
The immune system is amazingly complicated and that is a childishly narrow view of the two diseases. They're not grouped together like animals in the same genus, they're grouped together because their symptoms are so alike. One of the current theories on UC is it's a true autoimmune disorder based on T-Cell overactivity in the colon while Crohn's research is largely currently focused on immune mediation problems, so it it maybe immune deficiency. Especially given many of the implicated genes are involved in immune signaling needed to detect and effectively combat bacteria. They couldn't be more unlike one another in terms of cause.

Sometimes I really wish I went the whole way and got a PHD in this field, it's so AWESOME.
Childishly narrow? Oh ok, thanks for the clarification.
07-05-2014, 08:42 PM   #309
WelshGuy
 
Join Date: May 2014
Childishly narrow? Oh ok, thanks for the clarification.
Basically symptoms have no relation to cause. Two things with same symptoms can be vastly different. They have different names for a reason :P Otherwise it would all be called Crohn's disease.

Although, there is a large debate with Psoriasis and Crohn's being linked some how. Both often exist in the same families. I doubt any research on MAP has been done with Psoriasis though, its not something people would logically link at first. But something tells me they are linked.
07-05-2014, 08:56 PM   #310
Orchid
Banned
 
Join Date: Mar 2014
Location: Springfield, Oregon

My Support Groups:
Etiology in disease is only important insofar as ways it leads to treatment and research, it's not held in such high regard the way it is in zoology as a means of classification. Just because two diseases are considered similar doesn't mean their etiology is at all alike.
07-06-2014, 12:39 AM   #311
Poppysocks
Senior Member
 
Join Date: Jul 2010
Location: Tampa, Florida

My Support Groups:
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…
This is a great idea. I'd give double that, possibly quadruple that right now if I knew I could get the test done.
07-08-2014, 10:37 PM   #312
Poppysocks
Senior Member
 
Join Date: Jul 2010
Location: Tampa, Florida

My Support Groups:
I emailed CCFA on the subject, this was their response.

Thank you for contacting the Crohn’s & Colitis Foundation of America (CCFA) through your recent email regarding MAP. I understand you would like CCFA to consider support for an anti-Map vaccine. Please review the information below and attached.

CCFA is well aware of MAP. We have major research projects studying enormously complex bacteria, viruses, and fungi. This study is known as our Microbiome Initiative. To learn more about this project visit http://www.ccfa.org/science-and-prof...nitiative.html

MAP is more frequently recovered from the intestines of patients with Crohn’s disease compared to people with ulcerative colitis and individuals without either disease.

However, several findings have caused many researchers to discount a causative role for MAP in Crohn’s disease. First, MAP cannot be detected in many patients with Crohn’s disease and has been frequently found growing in people without the disease. Second, medical therapy specifically targeted against MAP does not consistently alleviate the symptoms or eradicate the inflammation associated with Crohn’s disease. Third, other medical therapies that suppress the immune system (e.g., immunosuppressants) or target specific inflammatory proteins (e.g., biologic agents) are effective in Crohn’s disease, but would likely be associated with no improvement or worsening of disease caused by MAP. Most clinicians accordingly believe that MAP may be a part of the normal intestinal bacterial flora of many people exposed to this organism through common food sources, but is present in greater quantities in patients with Crohn’s disease because of the underlying immune dysfunction. Clinical trials studying MAP and Crohn’s disease are ongoing.

In summary, Mycobacterium avium paratuberculosis may play a role in the development of Crohn’s disease as one of many different microbes that might act as a trigger for an abnormal inflammatory response in genetically susceptible individuals. But until more convincing scientific proof emerges, it cannot be described as a primary or the sole cause of Crohn’s disease.

Dr. John Herman Taylor of England and any researcher is able to request support by contacting CCFA at: http://www.ccfa.org/science-and-prof...s-fellowships/

Thank you for reaching out to us! If you have further questions, please email CCFA or call our toll-free number at 1.888.694.8872, Monday through Friday 9am-5pm EST to speak with an information specialist.


I kindly responded with my opinion below.

However, several findings have caused many researchers to discount a causative role for MAP in Crohn’s disease. First, MAP cannot be detected in many patients with Crohn’s disease and has been frequently found growing in people without the disease.


MAP has historically been a difficult mycobacteria to culture. It cannot be seen under a microscope. Only using proper analytical techniques can it be verified. Studies have proved this. In the Journal of Clinical Microbiology, a study was done which determined 92% of Crohns Disease Patients to have MAP, vs 26% of control using PCR.
http://jcm.asm.org/content/41/7/2915.full.pdf

Secondly, just because you are not showing symptoms of IBD, DOES NOT mean you are not infected. The MAP present may not be in an active disease state. H Pylori, for example, is well known to cause asymptomatic state, mild gastritis, stomach ulcers, and stomach cancer. YOU MUST TAKE THIS INTO ACCOUNT. Also, different people have different biochemistries and different genes and react differently to different things. Just because somebody has MAP in their system and is not showing active symptoms of IBD DOES NOT prove that MAP doesn’t cause Crohns.


Second, medical therapy specifically targeted against MAP does not consistently alleviate the symptoms or eradicate the inflammation associated with Crohn’s disease.


So because anti-biotic therapy against MAP doesn’t cure Crohns patients at a rate of 100% means MAP doesn’t cause Crohns? Koch Postulates have already shown that MAP causes Crohns, as well as Relman’s criteria. That is, MAP isolated from a Crohns patient was injected into a healthy animal which subsequently become sick with Johnes Disease.

http://www.ncbi.nlm.nih.gov/pubmed/3803136

People build up resistance to antibiotics. They are not a cure. And MAP is known to be hard to kill and resistant to anti-mycobacterial drugs.

Third, other medical therapies that suppress the immune system (e.g., immunosuppressants) or target specific inflammatory proteins (e.g., biologic agents) are effective in Crohn’s disease, but would likely be associated with no improvement or worsening of disease caused by MAP.


I’m sorry, but you’re wrong. If you were to treat a patient with Mycobacterium leprae (a mycobacteria more closely related to MAP) with a biologic drug, they would NOT get worse. Mycobacterium Tuberculosis is an exception not the norm.

http://www.cdd.com.au/pdf/publicatio...20together.pdf

Most clinicians accordingly believe that MAP may be a part of the normal intestinal bacterial flora of many people exposed to this organism through common food sources, but is present in greater quantities in patients with Crohn’s disease because of the underlying immune dysfunction.


So why is it not as present in Pure Ulcerative Colitis? UC’ers have an immune dysfunction, but the bug is not found nearly as much in them as it is in Crohns patients.

http://www.ncbi.nlm.nih.gov/pubmed/15951529

Clinical trials studying MAP and Crohn’s disease are ongoing.


Yes, and CCFA should be at the forefront of this research! You guys represent us, you are the ones with the voices that can reach people that can make a difference. That difference is right here, this is it!
07-10-2014, 01:05 AM   #313
kiny
Senior Member
 
kiny's Avatar
 
Join Date: Apr 2011
I think it's reasonable to question if MAP is directly involved in the inflammation, or an innocent bystander.

But their argument that anti-TNF would exacerbate the MAP infection is wrong. It doesn't, in fact it does the reverse: http://www.ecco-jccjournal.org/artic...017-7/abstract

MAP doesn't divide like TB does, that's why it takes months to get a reading on a culture.

Using immunosupressants to treat an infection is not unheard of, it's often necessary to stop nerve damage or organ failure, it's not as black and white as they think.
07-10-2014, 01:12 AM   #314
Poppysocks
Senior Member
 
Join Date: Jul 2010
Location: Tampa, Florida

My Support Groups:
I think it's reasonable to question if MAP is directly involved in the inflammation, or an innocent bystander.

But their argument that anti-TNF would exacerbate the MAP infection is wrong. It doesn't, in fact it does the reverse: http://www.ecco-jccjournal.org/artic...017-7/abstract

MAP doesn't divide like TB does, that's why it takes months to get a reading on a culture.

Using immunosupressants to treat an infection is not unheard of, it's often necessary to stop nerve damage or organ failure, it's not as black and white as they think.
Yep.

Here is some quotes take from an article I posted above.

- M. tuberculosis is a unique pathogen, even among mycobacteria, in that it is adapted to replicate both in the vacuole and cytosol allowing the pathogen to escape from the phagosome to produce disseminated disease.48 To understand the nondissemination of MAP, one must look to the “traditional mycobacterial infection”—leprosy, caused by Mycobacterium leprae, a pathogen that does not disseminate despite known treatment with azathioprine, steroids and TNF-a inhibitors.49
- The intracellular obligatory spheroplast form of MAP is incapable of replicating in the extracellular environment50 and is therefore incapable of disseminated disease.

http://www.cdd.com.au/pdf/publicatio...20together.pdf

^^^See Issue 2
07-10-2014, 01:21 AM   #315
Orchid
Banned
 
Join Date: Mar 2014
Location: Springfield, Oregon

My Support Groups:
Hence the primary issue with MAP detection, it's hellishly hard to not get a false negative because victim cells are less hosts to burst out of and more hotels to live in. I'm curious about the details of their new MAP diagnostic, did they isolate a protein chain similar to tuberculin that only causes a reaction in infected individuals?
07-10-2014, 01:38 AM   #316
kiny
Senior Member
 
kiny's Avatar
 
Join Date: Apr 2011
Most clinicians accordingly believe that MAP may be a part of the normal intestinal bacterial flora
MAP is a mycobacteria, it is not part of the normal gut flora. It's intracellular like all other mycobacteria, T helper and cytotoxic T cells are invovled in mycobacteria infections. Maybe he should tell HIV patients that mycobacteria are part of the gut flora, they can stop taking their antibiotics and drink some yakult probiotics instead. Where do they find these people.
07-10-2014, 05:27 AM   #317
xmdmom
Senior Member
 
Join Date: Jun 2012
Location: New York

My Support Groups:
I was interested to see that The Crohn's & Colitis Foundation of America (CCFA)irecently passed on a notice for a research study being conducted by RedHill BioPharma that they "thought may be of interest to you." They do go on to say CCFA is providing this information as a service and does not endorse the study or the study sponsor. "

"A Clinical Trial for patients with Moderately to Severely Active Crohn's Disease

RedHill BioPharma would like to alert Crohn's patients about a study:
A potential cause of Crohn's disease (CD) is infection with Mycobacterium avium subsp. paratuberculosis (MAP). RedHill Biopharma is currently enrolling the MAP US study to investigate RHB-104, a new antibiotic treatment for CD. MAP US, a Phase III randomized, double-blind, placebo-controlled, multicenter, parallel group study to assess the efficacy and safety of fixed-dose combination RHB-104 in subjects with moderately to severely active Crohn's disease, will enroll adult patients up to age 75 at sites across the US, Canada, Israel, Australia and New Zealand.

RHB-104 combines clarithromycin, rifabutin, and clofazimine in a novel treatment regimen for CD. remission at week 26 is the primary objective of MAP US; however, as MAP grows slowly, the duration of RHB-104 needed to achieve remission may vary. The Crohn's Disease Activity Index (CDAI) will be used to assess induction and maintenance of remission in patients through week 52. You may be eligible if you:

Are an adult patient up to 75 years old
Have a diagnosis of moderate to severe active Crohn's disease"
07-10-2014, 02:44 PM   #318
WelshGuy
 
Join Date: May 2014
Has anyone here done much research on psoriasis and crohn's? I know of a few families who have both, but no one person has both diseases at the same time in the family.. only ever an either/or.. which is exactly the case in my family too.

I'm wondering if its also MAP just affecting a different part of the body (regarding psoriasis).
07-10-2014, 03:13 PM   #319
Malgrave
Senior Member
 
Malgrave's Avatar
 
Join Date: Jul 2012
Location: Belgium

My Support Groups:
I don't know about psoriasis, but below some links to a studies on the link between

MAP and MS:

http://www.ncbi.nlm.nih.gov/pubmed/23439580

MAP and Diabetes 1:

http://www.gutpathogens.com/content/5/1/14

MAP and Blau syndrome (mentions also psoriathic arthritis):

http://www.hindawi.com/journals/ad/2010/127692/

I have seen a study also on MAP and arthritis in the past but cannot find it anymore...

Quite interesting!
07-10-2014, 03:30 PM   #320
wildbill_52280
Senior Member
 
Join Date: Sep 2009
I don't know about psoriasis, but below some links to a studies on the link between

MAP and MS:

http://www.ncbi.nlm.nih.gov/pubmed/23439580

MAP and Diabetes 1:

http://www.gutpathogens.com/content/5/1/14

MAP and Blau syndrome (mentions also psoriathic arthritis):

http://www.hindawi.com/journals/ad/2010/127692/

I have seen a study also on MAP and arthritis in the past but cannot find it anymore...

Quite interesting!
If you haven't yet, learn about a concept called colonization resistance as function of the indigenous microbiota, it may be related to all these observations and yet again to reductions in diversity of microbes which may be corrected by a fecal transplant.
__________________
Learn How Fecal transplants restore good bacteria that regulate inflammation to induce remission and how it has potential to be a cure for IBD in the future. Follow the link below.
http://www.crohnsforum.com/showthread.php?t=52400
07-15-2014, 11:21 PM   #321
sir.clausin
Senior Member
 
sir.clausin's Avatar
 
Join Date: Jan 2012
So, I got my info.
___
Your 3 endoscopic biopsy path blocks.

Two labelled xxx and One labelled xxx

Report:

All tissues are extensively infiltrated with MAP positive cells both in the superficial mucosal layer and in the underlying lamina propria.

Conclusion: Active MAP infection
07-15-2014, 11:33 PM   #322
rollinstone
Senior Member
 
rollinstone's Avatar
 
Join Date: Dec 2012

My Support Groups:
Sab, did you get the test done? That's good news isn't it? (Obviously not that you have the infection) but the fact that you now know what may be causing the issues... Maybe the SSI will allow your body to clear it. Either way, good luck bro, and keep us posted!
07-15-2014, 11:55 PM   #323
Poppysocks
Senior Member
 
Join Date: Jul 2010
Location: Tampa, Florida

My Support Groups:
So, I got my info.
___
Your 3 endoscopic biopsy path blocks.

Two labelled xxx and One labelled xxx

Report:

All tissues are extensively infiltrated with MAP positive cells both in the superficial mucosal layer and in the underlying lamina propria.

Conclusion: Active MAP infection
sir clausin. How did you get this done? Is this from a colonoscopy that they took biopsies from?
07-16-2014, 12:15 PM   #324
pmitra0123
 
Join Date: Sep 2012
Location: California
I have the same questions as poppysocks - how do they do this test? Where do you get the test done? Can you do it through a normal blood test center like quest?
07-17-2014, 05:43 PM   #325
Poppysocks
Senior Member
 
Join Date: Jul 2010
Location: Tampa, Florida

My Support Groups:
New research shows that delivery of ‪MAP‬ from showers and river aerosols may be routes of human exposure to the bacteria likely to be the predominant cause of Crohns Disease.

http://www.mdpi.com/2076-0817/3/3/577
07-17-2014, 06:13 PM   #326
JMC
Senior Member
 
JMC's Avatar
 
Join Date: Sep 2011
Location: London, United Kingdom
The case for MAP being the cause of Crohn's continues to strengthen:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4064085/

I think it is particularly interesting that Dr Saleh Naser notes:

"It must be emphasized that much of the controversy concerning MAP and CD stems from the inconsistent methodologies that have been used in the detection and isolation of MAP, which have questioned the causal relationship between this bacterium and CD. These observed discrepancies result from the fact that the methods that were designed for the detection of MAP in animals with Johne’s disease are inappropriate for the detection of MAP in humans. Consequently, the need for more sophisticated and optimized methodologies are required so that there can be accurate detection and isolation of MAP in CD patients."

Prof John Hermon-Taylor has developed precisely the test that is needed, it just needs funding to complete it and the clinical trials.
07-20-2014, 01:48 PM   #327
WelshGuy
 
Join Date: May 2014
Found this which talks about bacteria and Crohns disease and the protein which is key to preventing bacteria from causing problems:

Scientists sleuth out proteins involved in Crohn's disease

http://phys.org/news/2014-07-scienti...ved-crohn.html
Also why has the funding bar on the MAP website been stuck at 15% since the start when people have claimed to have donated? Are they not even updating the website?

People may end up donating when the funding has been met, bit misleading...
07-20-2014, 07:20 PM   #328
JMC
Senior Member
 
JMC's Avatar
 
Join Date: Sep 2011
Location: London, United Kingdom
Also why has the funding bar on the MAP website been stuck at 15% since the start when people have claimed to have donated? Are they not even updating the website?

People may end up donating when the funding has been met, bit misleading...
At the moment, the funding bar needs to be manually updated as there is no easy way to synchronise it with the actual funds coming in. Updates are currently being posted manually on the Facebook page.


There are a number of improvements that need to me made to the website and giving easier access to donation through JustGiving and Paypal and providing a live update (or as close as possible) to current funding status is on the list. I can assure you it is not intended to be misleading, just a work in progress. :-)
07-20-2014, 08:38 PM   #329
WelshGuy
 
Join Date: May 2014
Its easy to update a simple .css file to have:

#divID{
width: 25%;
}
Its like a three second job with ftp... it doesn't really require automated php/html5 as thats a lot of code for something so minor.. a simply edit of CSS once a day in ftp is enough really.
07-23-2014, 01:39 AM   #330
AJC - Australia
Senior Member
 
AJC - Australia's Avatar
 
Join Date: Jul 2013
Location: australia

My Support Groups:
I have not seen any mention of the crohnsmapvaccine website on Crohns & Colitis UK (CCUK) and have sent them several queries as to why that is….this is their answer. Tells you a lot about them doesnt it.


"With regard to your request to add a link from our website to www.crohnsmapvaccine.com, I can confirm that the Trustees of Crohn's and Colitis UK have made the decision that we will only add links from our own website to registered charities whose work has a direct relevance to people with IBD. As this is not the case for the website you have suggested, I'm afraid we are unable to help with your request."

Why is it that the mainstream media is so reluctant to write about MAP?
__________________
diagnosed 1994 aged 18. 3 surgeries. Remicade is my drug.

I believe this could cure crohns disease.

-Dr John Hermon -Taylor is trying to cure Crohn's disease.
Reply

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


All times are GMT -5. The time now is 12:00 PM.
Copyright 2006-2017 Crohnsforum.com