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bealunn
Member in Phase 2
| Joined: | Sat Jun 23rd, 2007 |
| Location: | Paris, France |
| Posts: | 22 |
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Posted: Sat Mar 8th, 2008 10:31 |
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Dear Dr Marshall,
I have noticed two interesting trials from the NHLBI currently listed as recruiting on the ClincalTrialg.gov site:
http://www.clinicaltrials.gov/ct2/show/NCT00217789?term=Sarcoidosis&rank=24
http://www.clinicaltrials.gov/ct2/show/NCT00366509?term=Sarcoidosis&rank=33
To my laymans eye the subject matter of both trials seems to point in the same direction as your own research.
would you like to comment upon these trials? Has there been some sort of paradigm shift in the research world with regards to the etiology of Sarcoidosis? do you consider these trials as valuable? how do they depart from your own research? etc etc...
many thanks
Béa.
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Sarcoidosis/lungs -125D45 25D9(Aug07) 25D4(July08)- Ph1May08-Ph2Jul08 NoIRs low lux home limited outings covered
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Dr Trevor Marshall
Research Team
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Posted: Sat Mar 8th, 2008 18:50 |
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Béa,
We have been in close contact with NIH since 2003. Both Belinda and I spoke with Director Steve Groft NIH/ORD just a couple of weeks ago, and were told there is still no money available for Sarcoidosis. Unfortunately, NIH is still relying upon the brains of the American pulmonologists, I am afraid. I was not consulted about, nor was I asked to peer-review, these studies.
What you are seeing is the failure of Medicine to deal with the intellectual challenge of Molecular and Genomic Biology. While Biology is producing a wealth of information about how the body actually works, at the level of individual molecules, Clinical Medicine is still struggling to deal with decades-old concepts at the level of the cell, approximately 100,000 times larger, and similarly less complex.
The people who suffer are the patients, of course. But NIH does not care about them. I have been told that they have to only focus on advancing the science. I have been told that if NIH worried about the well-being of the patients who are currently ill, then the researchers' work-quality would suffer.
As for the studies themselves, they will produce nothing useful. At a time when we have laid out the entire pathogenesis, from precisely how the intraphagocytic microbiota evades the immune system to the manner in which the disease processes subvert the hormonal systems, NIH is not only looking in the wrong place for the wrong pathogens, they are using assay techniques which don't work either.
Unfortunately in France you are even worse off, as you have nothing equivalent to the Autoimmunity Research Foundation, and nothing to assist those physicians who would like to help their patients by thinking a little 'out of the box'. At least it is possible in the USA to find physicians who will work with their patients and help them recover by prescribing the MP.
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bealunn
Member in Phase 2
| Joined: | Sat Jun 23rd, 2007 |
| Location: | Paris, France |
| Posts: | 22 |
| Status: |
Offline
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Posted: Sun Mar 9th, 2008 12:20 |
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yes..... don't start me on the problems here in France :-) or on the larger European scale either. Lots of people working hard to preserve the status quo. I include the larger patient organizations in that also unfortunately.
I had hoped that perhaps the NIH might have started looking around at the kind of results that Molecular and Genomic Biological research is coming up with and start helping to put some of that research into practical trials. Utopian? It shouldn't be so.
so for now the world remains flat and everyone is still convinced of it and they will carry on wasting funds on all sorts of empirical studies based upon subjective whims that keep everyone in gainful employment!
as we say here in France somewhat ironically...tout va bien!
Still, Rome wasn't built in a day and although the whole situation is frustrating it is still great to know that there is a solution out there and for the lucky people in the USA and down under back in Australia are able to find practitioners who are indeed willing to open 'the box' and look outside.
thanks
Béa
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Sarcoidosis/lungs -125D45 25D9(Aug07) 25D4(July08)- Ph1May08-Ph2Jul08 NoIRs low lux home limited outings covered
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Dr Trevor Marshall
Research Team
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Posted: Sun Mar 9th, 2008 13:02 |
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Béa,
We are sending a largish 'delegation' to Karolinska next month, and will be meeting researchers from all over Europe there. I am not sure whether this will help in the short-run, but it will certainly help bring change in the long-run. Please see the discussion at
http://www.marshallprotocol.com/forum39/11385.html
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Ruth Goold
Member in Phase 3
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Posted: Sun Mar 9th, 2008 18:23 |
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Can use be made of the following funding source? I'm thinking of Ph3 trials but there are a lot of possibilities:
http://www.gcgh.org/explorations
Ruth
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03/02/07 Ph 1 MP; 2001: Pulmonary sarc; 01/04/07: 125 D=110pmol/L(45.8 pg/ml)| 25D=20.8 ng/ml: 04/07 19.2: 07/07 11?: 09/07 16.5: 11/07 <10.0: 01/08 <10.0: 05/08 10 ng/ml. Ca. Elocom (ears). diphenhydramine 25 mg. Adidas EE glasses outside. NoIRs
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Jimbbb
Member
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Posted: Sun Mar 9th, 2008 20:30 |
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Ruth Goold wrote: Can use be made of the following funding source? I'm thinking of Ph3 trials but there are a lot of possibilities:
http://www.gcgh.org/explorations
Ruth
Ruth, thanks for that interesting link. Looks like maybe an uphill battle for MP acceptance there however since our old friend/nemesis is on the Board:
Elias A. Zerhouni, M.D.
Member, Executive Committee
Director, National Institutes of Health
U.S. Department of Health and Human Services
United States
But at least he did not bring Kiley along with him!
Sure is a distinguished board tho ....
jimLast edited on Sun Mar 9th, 2008 20:30 by Jimbbb
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Interested (healthy) bystander with distant cousin who has Chronic Lyme.
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