Share Facebook
Crohn's Disease Forum » Books, Multimedia, Research & News » MAP diagnostic test Crowdrise site


 
09-20-2014, 04:01 AM   #31
Usagi
 
Join Date: Mar 2014
-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...

Either way, funding this research has merit.
09-20-2014, 08:13 AM   #32
worriedboy
Senior Member
 
Join Date: Mar 2011

My Support Groups:
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.
09-20-2014, 08:53 AM   #33
Poppysocks
Senior Member
 
Join Date: Jul 2010
Location: Tampa, Florida

My Support Groups:
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.
09-20-2014, 10:01 AM   #34
D Bergy
Senior Member
 
Join Date: Apr 2007
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
09-20-2014, 07:36 PM   #35
baistuff
Senior Member
 
Join Date: Sep 2014

My Support Groups:
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.
09-20-2014, 10:55 PM   #36
rollinstone
Senior Member
 
rollinstone's Avatar
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...
__________________
-Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
09-21-2014, 12:16 AM   #37
xeridea
Senior Member
 
xeridea's Avatar
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.
09-23-2014, 05:46 AM   #38
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:

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?
09-23-2014, 07:11 AM   #39
JMC
Senior Member
 
JMC's Avatar
 
Join Date: Sep 2011
Location: London, United Kingdom
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.
09-23-2014, 07:23 AM   #40
rollinstone
Senior Member
 
rollinstone's Avatar
Way of the world unfortunately
09-23-2014, 02:43 PM   #41
worriedboy
Senior Member
 
Join Date: Mar 2011

My Support Groups:
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.
02-07-2015, 11:32 PM   #42
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
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
02-08-2015, 09:51 PM   #43
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
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!
02-10-2015, 03:08 PM   #44
Malgrave
Senior Member
 
Malgrave's Avatar
 
Join Date: Jul 2012
Location: Belgium

My Support Groups:
Please check this out:

https://www.facebook.com/crohnsmapva...type=1&theater
02-19-2015, 11:24 AM   #45
Malgrave
Senior Member
 
Malgrave's Avatar
 
Join Date: Jul 2012
Location: Belgium

My Support Groups:
Campaign update:

http://us10.campaign-archive2.com/?u...e=%5BUNIQID%5D
Reply

Crohn's Disease Forum » Books, Multimedia, Research & News » MAP diagnostic test Crowdrise site
Thread Tools


All times are GMT -5. The time now is 08:23 AM.
Copyright 2006-2017 Crohnsforum.com