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


 
07-23-2014, 02:48 AM   #331
rollinstone
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Save that response by them, and when they're shown to be wrong take appropriate action for the prolonged struggle that made a lot of people endure for what ever reason.
07-23-2014, 08:04 AM   #332
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I wonder what the organisation of the Crohn's Map Vaccine group is? Are they a limited company, a charitable trust?

If they were to register as a charitable organisation people might be able to use gift aid to make donations. It also might encourage people to donate if they could see that it has the oversight and structure of a charity.

Has anyone contacted Larry Smarr about the vaccine and MAP test?
07-23-2014, 08:07 AM   #333
sir.clausin
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I sent Larry a mail on db a long time ago, but never got an reply. It could be worth to try again. He certainly has resources
07-23-2014, 08:10 AM   #334
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I'm sure it would be best coming from the medical team involved, if possible. In his video he showed particular interest in the bacteria hypothesis. It'd be good for the whole enterprise to have some big, rich, media savvy backers! (not saying he's all of these!)
07-23-2014, 08:14 AM   #335
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This was before John Hermon and Co (me included) "shifted gear". I will speak to John when he is back from USA.
07-23-2014, 08:58 AM   #336
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I wonder what the organisation of the Crohn's Map Vaccine group is? Are they a limited company, a charitable trust?
It is a group of volunteers (mostly Crohns patients and their family) raising funds to complete the research at Kings College London which has charitable status. The intellectual property is held by HAV Vaccines Ltd which will be responsible for manufacturing the vaccine once the trials have been completed. The latter is currently seeking investors.


07-23-2014, 10:13 AM   #337
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Ok. Just read your reply more carefully. So it is a charity and we can use gift aid. Thanks for clarifying!
07-23-2014, 10:16 AM   #338
JMC
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Sorry, I get that. I wondered what entity is receiving the money? What oversight is there etc. I'm sure everything is above board but I'm wondering if people might worry about giving money to something that isn't a registered charity. Charities have all kinds of rules about oversight etc and Gift Aid can make 10.00 from a uk tax payer turn into 20% more.
Kings College London is the charity and receives the money. Why do you think money is going to something that isn't a registered charity?

07-23-2014, 10:22 AM   #339
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It wasn't immediately clear on the website. I'm reeling that so little has been raised so far! It's a pity that it can't get in the papers somehow. Some kind of human interest story about one of us who's -insert interesting, tough time- and backs the campaign.
07-23-2014, 11:02 AM   #340
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I'm reeling that so little has been raised so far! It's a pity that it can't get in the papers somehow. Some kind of human interest story about one of us who's -insert interesting, tough time- and backs the campaign.
The actual figure raised is much higher than the number shown on the JustGiving page as this does not show amounts that have come in via other routes e.g. cheques, direct bank transfers, etc. I agree the donation via the JustGiving page, at the moment is surprisingly low, but I expect that to improve in the next few weeks. Below is the last total published which accounts for all money.

07-23-2014, 02:29 PM   #341
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And actually there are more than one JustGiving page raising money for this since we have at least 5 individual fundraisers at the moment. Please take a closer look at:

https://www.facebook.com/CrohnsMAPVaccineHeroes
07-23-2014, 02:43 PM   #342
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Well that's all good.

So why won't the charity link to a page raising money for a registered charity?

And, more importantly, are they supporting the effort? If not, why not? What do their supporters think?

In my naïveté, it sounds like a reasonable attempt to -cure- Crohn's which needs support. It sounds -exactly- like the sort of thing that people who donate would want. Their website says they are committed to finding a cure.
07-23-2014, 03:23 PM   #343
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So why won't the charity link to a page raising money for a registered charity?
I assume you mean CCUK? We can only speculate, but I would guess because they either do not understand the work being done or do not consider it in their interests to promote it.

And, more importantly, are they supporting the effort? If not, why not?
They are not currently supporting the effort. I don't know why.

What do their supporters think?
I don't know

In my naïveté, it sounds like a reasonable attempt to -cure- Crohn's which needs support. It sounds -exactly- like the sort of thing that people who donate would want. Their website says they are committed to finding a cure.
And what would happen to charities like CCUK if Crohn's was cured?
07-23-2014, 03:58 PM   #344
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Who is the Larry Smarr fellow?

If crohns was cured, everyone at CCUK would need another job…..gastroenterologists would need to tighten their purse strings and billions of dollars would be taken from the pharmaceuticals. Curing crohns would be a disaster!
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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.
07-24-2014, 02:49 AM   #345
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There's a story about MAP in bathroom showers in the telegraph yesterday. A link was posted in there forum here today.

Is it worth someone in the MAP vaccine team want to contact the journalist and make them aware of the vaccine being developed? Perhaps they might do a follow up story, or something
07-24-2014, 02:52 AM   #346
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There's a story about MAP in bathroom showers in the telegraph yesterday. A link was posted in there forum here today.

Is it worth someone in the MAP vaccine team want to contact the journalist and make them aware of the vaccine being developed? Perhaps they might do a follow up story, or something
Note, this story was published on the Crohn's Map Vaccine FaceBook page last week before the Telegraph article and one of the authors is Prof John Hermon-Taylor.
07-25-2014, 05:57 AM   #347
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I have a request!

I don't have a Facebook account but is there any way someone could ask the vaccine people:

'What can we do now - until the vaccine is done. Should we be boiling water, only drinking UHT milk etc?'

Perhaps there's something we can do to limit our exposure to this pathogen. Maybe, at least for some of us, we can clear it in small volumes and limiting our exposure may help?
Hi, I've been wondering this myself.
I found this study that (I think - please correct me if I'm wrong) suggests that UHT milk *may* not be safe:
(sorry, blocked from posting link to study as I'm too new. Google this to find it:
Rapid Assessment of the Viability of Mycobacterium avium subsp. paratuberculosis Cells after Heat Treatment, Using an Optimized Phage Amplification Assay)

"Incomplete inactivation was recorded for all four strains of M. avium subsp. paratuberculosis under all three time-temperature conditions studied."
Though they do say clearly:
"It must be emphasized that the experiments reported here were not designed to determine the ability of commercial HTST milk pasteurization to inactivate M. avium subsp. paratuberculosis. For many reasons, continuous-flow HTST pasteurization as applied to commercial products cannot be simulated adequately under laboratory conditions, and direct comparison to the real situation may not be possible considering the fact that the wild strains may be less or more heat tolerant than field isolates or type strains used in the laboratory. Rather, the objective of this research was to validate the optimized phage amplification assay and its use for the rapid detection and enumeration of viable M. avium subsp. paratuberculosis cells after heat treatment. Our results clearly demonstrate that the method could be employed in place of conventional culture to speed up the acquisition of results during inactivation experiments involving spiked milk samples. "

Sounds like they should be able to use this technique to assess actual samples from the supermarket, which would obviously be very interesting.

I live in Australia, and have started restricting our family to dairy sourced from QLD, as Johne's disease is endemic in the southern states, especially Victoria and Tas. Western Australia and the Northern Territory are supposedly completely free of Johne's disease... this is one thing that makes me question the MAP hypothesis - I don't think they have lower rates of crohn's in those states (though I've never managed to find data - any idea how I could?).
07-25-2014, 06:58 AM   #348
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There are a number of research papers you will find here, under advanced reading. Remember exposure to MAP is not enough, there are other factors including genetic susceptibility, so it is not as simple as to say that certain areas of the country do not have Johne's disease, yet still have Crohn's. Also MAP is everywhere, in water, on plants, in meat, in diary products, so there is no one, simple infection route.
07-25-2014, 10:47 AM   #349
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In the UK, UHT is a different, higher temperature, treatment which turns the milk into long-life.

As I mentioned somewhere else, I'm also using a bacterial level water filter.

I avoid the various dodgy ingredients that have been mentioned on here and I'm also extra careful about hygiene. I wonder whether a tummy bug to most people can result in a flare for me.
07-25-2014, 05:33 PM   #350
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I spoke with Dr. Chamberlin (Doctor in the USA willing to prescribe anti-MAP therapy)...he mentioned the bug is remarkably difficult to remove (almost impossible to eradicate completely).

When I mentioned that I have had tremendous success on the SCD diet, he seemed unsurprised, saying that there is the possibility that the lack of complex carbohydrates may alter the bacteria's ability to produce energy in some way.

Has anyone spoken DIRECTLY with the Dr.? Also, sorry for the dumb quesiton, but is there any DIRECT evidence that this has been used in humans / worked?

Thanks guys! We're getting there. We're gonna get to a cure soon.
Alex
07-25-2014, 05:51 PM   #351
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I realize my above post wasn't clear: I meant to say, with Dr. Taylor. Has this vaccine been tested on humans?
07-25-2014, 06:39 PM   #352
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he needs $MILLIONS to do a 'human trial' of the modern t cell vaccine….hence the fundraising.

it has, however, been trialled and successful on mice and cattle.
07-25-2014, 08:07 PM   #353
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Definitely understand the financial requirement. I am just curious why he's collecting all this cash without even having tried it on, say, 10 willing patients. Hell, I'd do it fo free and pay for my own vaccine...
07-25-2014, 08:10 PM   #354
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In any case: making a $100 dollar donation. Want this to happen. He also talks about "investment," not donations, for the actual human trial, which leads me to believe those contributing funds will earn some upside when the vaccine goes public (if it works).
07-25-2014, 08:47 PM   #355
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Would be nice if people were allowed to test those willing to take the risks but unfortunately there's too many legality and "ethical" issues. It's really frustrating actually.
07-26-2014, 12:04 AM   #356
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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.
Hi I'd like to understand more... I have read the article... They mention that studies conclude of the role of MAP in 30 to 50% of CD patients. In the remaining patients, MAP is not detected thus it is assumed MAP does not play a role in the remaining (50-70%) of all of CD patients. How can they be sure MAP is ''causative of '' and not simply ''associated with '' CD, in the proportion of infected CD patients, just like c-difficile infection is more prevalent in IBD? Could MAP cause another form of IBD or a sub-type of CD?

Lets take C-difficile another bacterium which I also just read about which seems to be more common (or more active) in IBD patient than in the rest of the population. We think C-difficile does not cause IBD, but is rather often ''associated'' or in other words more present in IBD patients.
From my readings, C-difficile can even mimick symptoms of CD including inflamed thickening, blood and pus in the colon. One other risk factors and trigger of C-difficile and for the infection to become symptomatic is using antibiotics... Antibiotics destroy the healthy gut bacteria and without healthy bacteria, C-difficile grows out of control into overt chronic disease, all of wich of course can be concomittant with active CD or more at risk of happening if ill with CD.

About Johne's in cows... In meat and cattle/bovine industry in North America, antibiotics are used A LOT in order to force the bovine to eat more corn and food which are not suitable to their stomachs... Could this abusive use of antibiotics in cows destroy their gut flora, thus impairing their immune defence mechanism to fight MAP or C-difficile? The impaired gut flora and defence could therefore make the bovine not strong enough to living normally with MAP as a asymptomatic carrier or to properly fighting it and which then finally results in overt Johne's disease???

Johne's would develop in the ileum (only?). I didnt read about ulcers, about blood or mucus, about joint, eye or skin issues, about disease in the stomach, colon or any other part of the digestive system of the cow which are on the contrary present in most CD patients... It is a minority of CD patients who only have a problem in the ileum without colon, joint, eye, skin, fistulas, or whatever else issue... Many CD patients dont even have a problem in the ileum which was my case in my first years. How is Johne's disease thought to be so similar to CD to think MAP causing Johne's = MAP causing crohns? I'd like to understand better this theory.

When I read about Johne's (ileum), I think more of a disease like C-difficile (colon): an infection bacterium which targets one organ specifically rather than crohn's which is systemic (full body). I think of the link between antibiotics mega-use in cows and MAP overgrowth resulting in digestive illness and antibiotics and C-difficile overgrowth in humans resulting in digestive illness too. CD is everywhere from mouth to anus, not only in the ileum...Frankly I dont understand the relationship between Johne's and CD. Please help, i'd like to understand better this theory in easy terminology if possible.

sorry for this long post!!!
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
07-26-2014, 12:24 AM   #357
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Hi I'd like to understand more... I have read the article... They mention that studies conclude of the role of MAP in 30 to 50% of CD patients. In the remaining patients, MAP is not detected thus it is assumed MAP does not play a role in the remaining (50-70%) of all of CD patients. How can they be sure MAP is ''causative of '' and not simply ''associated with '' CD, in the proportion of infected CD patients, just like c-difficile infection is more prevalent in IBD? Could MAP cause another form of IBD or a sub-type of CD?
http://jcm.asm.org/content/41/7/2915.full.pdf

Here is a study using proper PCR methods that detected the mycobacterium in 92% of Crohns patients vs 26% of control.


Johne's would develop in the ileum (only?). I didnt read about ulcers, about blood or mucus, about joint, eye or skin issues, about disease in the stomach, colon or any other part of the digestive system of the cow which are on the contrary present in most CD patients... It is a minority of CD patients who only have a problem in the ileum without colon, joint, eye, skin, fistulas, or whatever else issue... Many CD patients dont even have a problem in the ileum which was my case in my first years. How is Johne's disease thought to be so similar to CD to think MAP causing Johne's = MAP causing crohns? I'd like to understand better this theory.
Skin issues are prevalent. There's pictures where the Cows lose the color of their hyde. Also, we are completely different animals to cows, just as we are completely different animals to mice. The disease may effect one animal differently than another, and vice versa.
07-26-2014, 11:21 AM   #358
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Hi I'd like to understand more... I have read the article... They mention that studies conclude of the role of MAP in 30 to 50% of CD patients. In the remaining patients, MAP is not detected thus it is assumed MAP does not play a role in the remaining (50-70%) of all of CD patients. How can they be sure MAP is ''causative of '' and not simply ''associated with '' CD, in the proportion of infected CD patients, just like c-difficile infection is more prevalent in IBD? Could MAP cause another form of IBD or a sub-type of CD?
I took it to mean that existing studies showed that MAP had played a role in 30-50% of Crohn's cases. Dr Naser emphasises that previous testing methods were not completely reliable so it will be interesting to see the outcome of the Redhill Biopharma (RHB-104) study where they have a better test. When methods that are accurate for detecting human MAP are used I believe the figure is between 90 and 100%.

MAP was proven to be causative by meeting Koch's postulates. Basically, MAP was cultured from the lymph nodes of a human patient who had Crohn's then used to infect a goat who developed Crohn's like symptoms and was found to have MAP in its gut. If you get infected with MAP it will cause further immune dysregulation leading to leaky gut and other bacterial infections.
07-26-2014, 07:13 PM   #359
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That's what's frustrating, is that people in the medical industry ignore koch's postulates, it's fking ridiculous haha, they just ignore it as if it doesn't exist. I posted an open letter written by various physicians a while ago, they talk about their own journey and success of going on anti-map medication, granted it was a small number, they were all 100% better, to me it's obvious that map IS without a doubt at least ONE cause of ibd.
07-26-2014, 07:19 PM   #360
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It's because they're not researchers and it's not their place to comment on things that aren't anywhere near approval by the FDA or any other organization that handles medicine. If they open their mouths and someone gets hurt they can get bit in the ass.
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