The Marshall Protocol Study Site > ABOUT THE MARSHALL PROTOCOL > ANNOUNCEMENTS AND NEWS > An update on the NIH, Dr. Elias Zerhouni, James P. Kiley of NHLBI
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The Marshall Protocol Study Site > ABOUT THE MARSHALL PROTOCOL > ANNOUNCEMENTS AND NEWS > An update on the NIH, Dr. Elias Zerhouni, James P. Kiley of NHLBI |
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| Moderated by: Dr Trevor Marshall | ||
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Foundation Staff . 
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**** NOTICE **** Sherry (Scooker48)kindly offered to award a scholarship of her American Airlines mileage, and Barney has been chosen to visit Bethesda, to find out how the NIH operates, and meet some of the key people. (see the discussion further down this thread) ***************** On Monday morning Belinda Fenter was called by Dr James P. Kiley, director of the Division of Lung Diseases, National Heart Lung and Blood Institute (NHLBI), National Institites of Health (NIH). Belinda has been corresponding with Dr Jim Kiley, and his superiors, for more than 2 years, trying to help them understand that the information they have been disseminating about Sarcoidosis is (almost) totally unsupported by scientific studies, and based on "anecdotal misinformation which has gained credence by repetition." As you know, we published a booklet detailing results from the recent ACCESS study, a study that Dr Kiley has almost totally disregarded. We also analyzed, in detail, the hard-to-find full-text of the ACCESS study 2-year follow-up. Dr James P. Kiley said that the NHLBI has moved significantly in response to us, and other patient groups, and doesn't intend to move any more. He says they have 'negotiated' as much as they can. He said that Science does not change quickly. He said that NHLBI has no intention of entertaining any more changes from 'nitpicking' about their "Facts about Sarcoidosis" publication. He made it quite clear that the NHLBI's position is that very few patients die from sarcoidosis, and there is no way this position is going to change. The publication which he does not want 'nit-picked' describes sarcoidosis symptoms, inter alia: "Any painful arthritis in your ankles usually clears up in several weeks" "Painless arthritis which can last for months or even years" "Painless swelling, most often in your fingers" "Prednisone is usually given for many months, sometimes for a year or so, but rarely for many years" "You can't catch Sarcoidosis from somebody who has it" How can your doctor, your family or your employer be expected to understand what you are going through when you have propaganda like this coming from the highest medical authority in the country? From bureaucrats who are being paid with our tax dollars? How can you expect your doctor to give you the pain meds you need when Dr. James P Kiley is telling doctors that the disease is painless? Kiley made it clear that they are not going to change anything. Not just now, but ever. They have no plans to ever change the guidance being issued to doctors and your families. Dr Jim Kiley made it clear that NHLBI doesn't believe that you are real, or that your suffering is real and especially doesn't believe that the cure might be real. It is now 13 weeks (3 months) since hundreds of you wrote to Dr Zerhouni, Director of the NIH. We are sorry to report that nothing positive is happening, and it certainly appears as though wheels are turning in the background aimed at making things very tough indeed for this community. Dr Elias Zerhouni is publicly stating NIH must be "the most trusted source of scientific advice" yet he is allowing his staff to ride roughshod over any concepts of scientific accuracy. He is saying "whatever NIH says must not be tainted," yet Dr Zerhouni is not even ensuring that his most senior staff are following this principle. Neither Belinda nor Dr Marshall have heard one word from Dr Zerhouni's office about the Trans-NIH sarcoidosis committee. The last communication we had from his office was that you would all have replies to your email letters by the end of June. It is now the end of August, and there have been no replies. So I guess there are two extremes that one could use to describe Dr Zerhouni's actions. 1. One could surmise that Dr Zerhouni is working diligently behind the scenes to make sure his publicly-stated ethics are enforced within NIH, or 2. One could surmise that Dr Zerhouni is prepared to triage the lives of a whole community, rather than risk offending the egos of NHLBI staff who are unwilling to re-examine past mistakes. The true situation is probably somewhere in the middle, although I have to admit that what we see looks pretty bleak for any poor folks who are not already recovering on the MP. We see an all-out campaign by TPTB to scare patients off the MP, and to discredit Dr Marshall, personally. During the recent interview with the Kaiser foundation, Dr Elias Zerhouni stated that he wanted his legacy to be one of change at the NIH, effected via the "Roadmap" activities. Yet we see no interest from Dr Zerhouni in bringing our expertise onto the Trans-NIH committee, and Dr Zerhouni has even appointed Dr James P. Kiley to be in charge of "Re-engineering the Clinical Research Enterprise Clinical Research Networks" Roadmap initiative. (see here) So. What to do? Well, it is worth trying to figure out whether there are any investigative journalists who might pick up this story. A journalist aspiring for a Pulitzer Prize would be a wonderful find. We need to identify such journalists and write to them, as a community. The message is quite clear - NIH is spending the public's money without any concept of looking for cures, and when faced with a cure, Dr Elias Zerhouni has shown no interest whatsoever, standing idly by while his organization does its best to suppress our work, just like they suppressed Lida Mattman and Emil Wirostko in the 1990s and Alan Cantwell in the 1980s. On the 29th September (in 4 weeks time) Dr Zerhouni is holding a Public Symposium to announce the recipients of the 2005 Director's Pioneer Awards. http://nihroadmap.nih.gov/pioneer/symposium2005/ This event will be held in Clinical Center, Building 10, at the NIH campus in Bethesda (a campus map is at URL http://dtts.ors.od.nih.gov/visitor_access_map.htm ) A Google-maps aerial view of this building can be found at URL http://tinyurl.com/89h8g (it is the building with "Center Drive" shown as going through the middle of it)(the more advanced the technology, the more advanced the errors -LOL) Anyway, you can zoom out on this Google map (using the +/- slider) and see exactly where the Bethesda campus is located, just north of Washington, DC. Dr Marshall, Belinda and myself will all be travelling to Bethesda to attend this event, so that we can voice our concerns directly with the key players. Any of you who are able to attend would, of course, be welcome, and Belinda, Dr Marshall and I will be looking forward to meeting those who attend, not only at the actual symposium, but also at our hotel on the evening before, and the morning after, the symposium. (The Chevy Chase Holiday Inn, at http://tinyurl.com/bg7bd ) (The nearest Metro to the Hotel is http://tinyurl.com/bczwh ) |
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P.Bear R.N. Inactive Staff
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I am not really suprised at the bureaucratic and autocratic mentality of these well paid hacks. They were chosen precisely because they have this mentality. I am reminded of a time fairly recently (15 years ago) when I was told by "experts" that infants could not feel any pain so surgical proceedures could be done without pain medication. I watched in disgust and anger as a Dr. who believed in this non-sense cut on a baby boy, who screamed to high heaven. I should be dumb-founded at the density of these so called experts, but experience has taught me that hierarchies defy intelligence and change as long as they can. "They are only in it for the money and power!" P.B. Best of luck in Bethesda. Last edited on Thu Sep 1st, 2005 08:20 by P.Bear R.N. |
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Nightshade Member in Phase 2 
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Hello Meg, the situation is the same in Germany. There the national borreliosis division claims chronical borreliosis not to exist and keep "informing" doctors about Borreliosis ALWAYS being cured after 4 weeks of antibiotic treatment. Doctors not following these religious dogma get in serious trouble and can lose their permission to work. I do not think they do it better for any other chronical, hard-to-detect disease. So we need to fight, those who not fight have already lost the battle. In Germany there are elections soon, and in USA the problem will be still present when the next election comes. Here the organisations of borreliosis patients try to contact politicans, if they get 1000 letters with the same question asked even politicans will react. Good luck, Nightshade |
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Dr Trevor Marshall Research Team 
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Nightshade, The US political system is influenced rather more heavily by Industry Pressure Groups (lobbyists) than in Europe, and a few thousand letters here makes very little difference when spread over hundreds of politicans. The hundreds of letters arriving on Dr Zerhouni's desk did have a profound effect, however, leaving him unable to figure out how to react... Belinda will soon be suggesting which politicians the community should focus our writing efforts upon. I travelled to Washington DC a couple of months ago to observe (and help) the Lyme groups lobby the politicians by knocking on their doors (in the Halls of Congress) and explaining to their staff why it is important that they support the Lyme bills which are winding through 'the system.' Meg is pointing out that we are better to focus on investigative reporters here in the USA, and also to keep pressure directly onto the medical system itself (Dr Zerhouni and Dr Kiley). It is a big task, but we have come so far in the last 3 years, and I personally think we are much closer to a breakthrough than many of us realize. Every few days I personally am still talking directly with people at the highest-levels of the NIH, exploring possibilities. I can absolutely state that the NIH Luddites have no idea whatsoever of what we have achieved, or where we want to go. I know it might seem crazy that we could be discussing all this on the WWW, yet our opponents are not watching, and still don't understand. That is the quality of forces arrayed against us. Even us mind-fogged can outclass folks who keep their eyes shut  |
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Robertrr Member in Phase 3 
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Trevor, I love that statement: "Even us mind-fogged can outclass folks who keep their eyes shut ". It really made me smile! Keep up the good work! I'll certainly join the next go-around of letter writing campaign! Robert |
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Dr Trevor Marshall Research Team
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Robert, You will be able to watch us, as the NIH event is scheduled for a live webcast. I doubt that the camera is going to pan around to the audience very often  but maybe there will be a chance to ask questions 'on-air' just like there was for a few folks at the Kaiser Foundation webcast. |
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jean west Member in Phase 2
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Dr Marshall, I am an investigative journalist and have written extensively about health issues for many British newspapers, including the dangers of ritalin to children (which is also a controversial issue). Although I am in the UK, I could easily put together a story, if my American counterparts might suggest which newspapers to fire it off to. I just need the material to work with and some assistance from you with the technicalities. Unfortunately, I have not been able to work full time for four years but I still do occasional work that interests me. Best Wishes, Jean West. |
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scooker48 Member in Phase 3 
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Dr. Marshall, We need money to fund our studies, and that money does not have to come from the federal government. It could come from private sources, and there are many sources. I fear we're "tilting at windmills". Sherry |
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jrfoutin Research Team 
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Hot air and windmills abound in local and national arenas. Responsibility of graduates and those finding wellness to help others find it too. All our voices together can break down walls. Private sources is a good idea, too. Last edited on Thu Sep 1st, 2005 23:12 by jrfoutin |
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Dr Trevor Marshall Research Team
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Sherry, We don't need money. We need support. It doesn't matter how many more papers we get in place, nothing will change unless we change it at the top. The problem is that this community has been Triaged. We need to spread the message of hope, we need to tell TPTB that chronic disease can be cured, that patients are no longer doomed to a painful, slow death. We need support. Money is incidental to that support. We are now strong enough to change it at the top. But it is important to stay focused, and not allow those 'butterflies in the stomach' to influence our judgment ..Trevor.. |
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spacee inactive member
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Very interested in how this pans out. It was Building 10 where the study that I participated in for 5 years was conducted. A Rheumatologist who examined me said, "Fever in a child of a CFS parent is a LEARNED RESPONSE". They are as closed minded now as they were then. When will it change. Hugs, Spacee |
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shegeek Member in Phase 3 
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A journalist who may be worth a recruitment attempt is Chris C. Mooney. He specializes in science politization issues, and his very hot book The Republican War On Science just came out a day or two ago. He frequently writes for The American Prospect, and has done pieces for Mother Jones, Slate, Skeptical Inquirer, and many others. Now is not the best time to contact him, since he has family in New Orleans and is swamped, both personally and professionally, with the disaster and hurricane issues. But maybe some folks can check out his work and decide if he's worth a try. |
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GeorgeinRollaMO Member in Phase 3 
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Who remembers the name of the L.A. Times reporter that did the expose' that six of nine members of a certain government committee that makes recommendations as to health standards for the public were on the take from pharmaceutical companies in one form or other? I believe that I remember that all of the nine were medical doctors. I wonder if he might be the reporter needed. George |
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Dr Trevor Marshall Research Team
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George, David Willman, from the Los Angeles Times, spent 2 years investigating those members of the NIH who were taking money from outside organizations, the so-called "ethics scandal." Someone like David would be excellent. I see he is stationed in Washington, and I am not sure if he is still 'hungry' enough to send out hundreds of Freedom Of Information Act requests, like he had to do during that investigation... Still, he would be ideal. Would you mind researching his writings and contacting him to feel him out? We can then organize a more concerted writing campaign if he seems receptive. ..Trevor.. |
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kikdoc Member
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I can get you the names and contacts of highly placed people in the government who have been working on these "ethics" issues for letter writing or a little "leaning" if you would like to go that route. Thanks. KikDoc |
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rainbowcatcher Member in Phase 2/3 
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http://www.casw.org/ Hope this can be of some help.  |
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rainbowcatcher Member in Phase 2/3
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Another possibility. . . http://www.poptel.org.uk/panap/archives/journal.htm |
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wrotek Member in Phase 3 
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Now when the cure is available and given to NIH on the silver plate our`s fate, life and health is in the hands of few people including Dr Zerhouni and Dr P Kiley who dosen`t want to talk with people which they want to help so much as they say it all the time? This is very big responsibility in their hands, extremely big, meybe too big? Last edited on Fri Sep 2nd, 2005 22:49 by wrotek |
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wrotek Member in Phase 3
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Dr Kiley said in 9`th minute of His Chicago speech that "we are here to acquire new knowledge that will lead to better health to everyone" |
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GeorgeinRollaMO Member in Phase 3
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Trevor, I will give it a go about researching David Willman. Please excuse me if I am slow. I am being distracted by the Katrina affair. I have not heard from Mom, sister or brother since Sunday noon. The eye of Katrina went over Mom's house, I understand from a news source. I also have a nephew and family in the City proper, and no word either. So far, one cousin and husband made it out ok. If someone else is really interested in this project, please volunteer. Thanks! George |
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Dr Trevor Marshall Research Team
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OMG, George, I am saddened to hear that. Please focus on locating your loved ones. I am sure everybody here will help you in any way we can, and most certainly by carrying forward the advocacy effort while you locate your loved ones. Sincerely Trevor |
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rainbowcatcher Member in Phase 2/3
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Investigative reporters in US http://www.empirezine.com/newspapers/3.htm Or a graduate from http://web.mit.edu/knight-science/bootcamps/isj_2005/info.html Last edited on Mon Sep 5th, 2005 14:13 by rainbowcatcher |
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Dr Trevor Marshall Research Team
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That first link is a good one. It sets out a lot of the background we need to understand if we are going to be able to interest the press in what we have found. http://www.empirezine.com/newspapers/3.htm Several years ago I spoke with an ex-AIDS activist who had just taken up a senior management job at NIH. She made it quite clear that the NIH will react to articles in the NY Times, LA Times, Boston Globe, Washington Post, and those other news outlets which are read by millions of people. The author of that review about investigative reporting says: Investigative stories confirm our suspicions. They can begin with a tip from a reader, but are often the result of a curiosity and suspicions on the reporter's part. In my current job at the Vallejo Times-Herald , numerous animal lovers have approached me with complaints about malfeasance and animal cruelty at the local humane society which I am now checking out through a public records search. These complainers at first wanted me to print all their allegations verbatim, but I can't do that until they are substantiated. That is indeed the process. You need to write to all the influential reporters, but only those who already are thinking along the same lines, that "the NIH isn't coming out with cures - why not?" will be interested in the tip you have given them. Then they will call the 'experts' (hopefully including us at the Autoimmunity Research Foundation) to get the various points of view. If they sense a story, they will think about it further, and eventually write up what they have found. That is why I can't do the writing - the tips have to come from you folks. The same logic applies to the NIH - Dr Zerhouni will react to public pressure, not just to the pressure I am keeping on him. YOU need to get in his face often enough that you become part of his solution, and not just part of his problems. ..Trevor.. |
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Freddie Ash Member in Phase 3 
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HI TREVOR This is Fred in WV. Just tell us when to start and what is the email address. The sooner the better!!!! you friend in sarcoisosis Freddie |
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jrfoutin Research Team
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Email addresses I've already sent to. I told them my perspective. Do tell them yours: srohrs@thnewsnet.com Susan Rohrs boyce@mit.edu Boyce Rensberger Phone: 617.258.8249 Fax: 617.258.8100 http://www.chriscmooney.com/blog.asp moonecc@yahoo.com http://www.casw.org/contact.htm diane@nasw.org david.willman@latimes.com erf@rachel.org ........................ Interesting recent article on Dr. Zerhouni here: http://www.nytimes.com/2005/08/30/health/policy/30nih.html Last edited on Mon Sep 5th, 2005 20:42 by jrfoutin |
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Moxie Member in Phase 2/3 
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Trevor as you well know, helicobacter pylori met the same fate here in Oz-initially (only took 10 years!). Previously I had a seminar business focussing on presenting seminars on CFS for health professionals and the general public. We worked alongside Newcastle Uni researchers for some time hopefully heading them in the direction of funding and recognition with no success. One suggestion I have is to find a 'high profile celebrity' who has a TH1 immune disease and use that person as your spokesperson. Right now, I believe you are doing exactly the right thing to get recognition - using patients to push - we are a force to be reckoned with once we are properly harnessed + add in a celebrity to become the face of TH1 disease + an investigative journalist in as many countries as possible. I have been chomping at the bit to get some TV time here in Australia but have been reluctant to do so as I do not know how much publicity you want and how you want to go about it. Patience and determination I believe are the keywords here. New science and new medicine are BIG topics for rigid thinkers!!! Cheers Moxie |
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Dr Trevor Marshall Research Team
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Moxie, I am happy to travel anywhere for conferences, etc (at least until the money runs out). Please do your best to interest the Oz media. Yes, I need the patients to start exerting pressure now. Meg, Belinda and I are doing all we can, and it just needs a little more pressure than we alone can give. I was hoping that we could get half a dozen (or so) patients along to Dr Zerhouni's webcast, so as to let him know he cannot say one thing in public, and another in private. But as of today, I haven't had one email from anybody who wants to join Meg, Belinda and I, so I am not sure what is in the community's heads right now. ..Trevor.. |
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Moxie Member in Phase 2/3
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Please direct me to some links that I can use for publicity purposes... Also I did an interview with my GP (whom I believe you know) that I sent off to ME/CFS Societys in Qld and Victoria. Would you be happy if I used this for press releases? I can't send it as it is too large....any other email address to send to? Moxie |
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Freddie Ash Member in Phase 3
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HI TREVOR This is Fred in WV. If the other patients are like me they are waiting for you to tell us what you want us to do next. Who and what is best said to these people. We do not want to do something that would do harm, we want to do good for all of us. We want to make sure we make the loudest noise we can at the NIH. Your friend in sarcoidosis Freddie |
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jrfoutin Research Team
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If I understand correctly MP Patient Attendance is requested at this conference. See base of Meg's note at beginning of this thread:On the 29th September (in 4 weeks time) Dr Zerhouni is holding a Public Symposium to announce the recipients of the 2005 Director's Pioneer Awards. You can see last year's recipients here: http://nihroadmap.nih.gov/pioneer/Recipients04.aspx Overview of the NIH Pioneer awared here: http://nihroadmap.nih.gov/pioneer/ Symposium agenda, LINK to LIVE webcast, and how to get there issues here: http://nihroadmap.nih.gov/pioneer/symposium2005/index.aspx Attendance at the symposium is free and no pre-registration is required. |
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Dr Trevor Marshall Research Team
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I think that the point Meg was trying to get across is that the only man in the NIH who has the obvious authority to ask the correct questions and get things moving, is the Director, Dr Zerhouni. He is holding a public meeting to announce some grants being given by the NIH to a group of researchers chosen by the NIH as those most likely to be able to effect a rapid change in 'Status-Quo' medicine, and produce research leading to breakthoughs (that is so ironic, isn't it??) Dr Zerhouni makes public statements saying he cares, that he wants cures, and here is a chance to let him know what you think about the way NHLBI is putting obstructive pressure on your Doctors, and on you, and that this is not scientific, and it is not ethical. How to do this? I don't know, but maybe a group of patients could display some banners at the back of the room during Dr Zerhouni's talks (there is one in the morning and one in the afternoon), quietly, discretely (off-camera), and respectfully, letting him know, in very positive fashion, what they think the problems are, and then mingle with TPTB from NIH who will be at the reception in the afternoon. The Foundation has reserved a couple of discount rooms at the hotel in case folks need to get in the day before, or leave the day after, please contact Meg to coordinate this stuff. Sincerely Trevor ps: Conflict of Interest Disclosure: I have applied for, and been rejected for one of these fellowships in both 2004 and 2005, although that is immaterial to the issue of patients saying what they think about the way NIH is functioning (or not functioning, as the case may be)... |
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LeAnne Member in Phase 3 
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This is a copy of the letter I wrote to the NIH and Dr. Zerhouni. "Why are you wasting time and spending millions of our tax dollars on research to better manage this disease, when there is a curative treatment? I am at the end of phase I of the Marshall Protocol.I know you are aware of this treatment protocol for TH1 inflammatory disease. I can already tell that it is working for me. I don't understand why you are ignoring this treatment protocol. There are doctors who are using it. They see the validity of it. You are going to stand before God one day and give an account for how you have handled this. There are billions of people suffering with chronic illnesses, taking these drugs that are only masking the symptoms. These drugs are sometimes more harmful than the disease. I believe, and so do thousand of others, that you don't want to find a cure. It is not in your best interest. If chronically ill patients get well then it will hurt your pocketbook. The love of money is the root of all evil. Believe me, you will be held accountable one day. I am thankful that I found the Marshall Protocol and did not have to be one of the victims who have had to suffer from long term use of immunosuppresents and steroids. I am begging you to please just stop pussy footing around and find a CURE!!!!!! Trevor Marshall's findings are correct. We won't back down!!!! We won't stop educating people.People are losing confidence and trust in you. Do the right thing and research the Marshall Protocol!!!! We beg you!! LeAnne Byrd -------------- I know the letter sounds a little mean, but they need to know how we feel. |
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Foundation Staff. . 
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Freddie and Everyone, We are asking that members, their families and friends, personally attend the NIH meeting on Sept. 29, 2005, to tell NIH why they need to open up to new ideas (like the MP) that have immediate applications for suffering and dying patients. We want to emphasize that family and friends are welcome, too. We want Dr. Zerhouni to see at least 6-12 real people who (as they mingle during the reception) can tell how the MP is changing their lives. We think people need to ask the NIH exactly how they THINK new cures are likely to come about, since they want to discount this one? Do they think researchers will putter around with new drugs until they come up with one that might work? What are the chances that will happen, given that NIH doesn't know what causes these idiopathic diseases? Why can't the NIH put together a committee to interview MP patients, review their records, and figure out what is happening to these people? That would require a trifling amount of money from the NIH. What is delaying the NIH reorganizing the Trans-NIH sarcoidosis committee? Anyone who cannot personally attend the meeting can send letters telling how the MP is changing their life and their families' lives. Letters from family and friends are welcome and handwritten letters are fine. We will hand-carry these letters to Dr. Zerhouni. Address your letters with your story, concerns and comments to Dr. Zerhouni and send them to: Autoimmunity Research Foundation 3423 Hill Canyon Ave. Thousand Oaks, CA 91360 or email to: foundation -AT- autoimmunityresearch.org and we will print them out for you. Belinda |
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catlady Member in Phase 3
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I get the impression that the focus of the NIH meeting is on sarcoidosis. Since TPTB seem not to have caught on yet that CFS and some other illnesses are also Th1 and also respond to the MP, do you think it is valuable for CFS patients on the MP to write to Dr. Zerhouni, or only those with a diagnosis of sarcoidosis? Catlady |
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Dr Trevor Marshall Research Team
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CatLady, It is absolutely important for everybody to let Dr Zerhouni know what is happening. His own ORWH office just gave 4 million dollars out for CFS research - to explore the "its all in your mind" hypothesis. DR Zerhouni needs to be told there is change in the wings, that his organization needs to be part of the solution, and not part of the problem |
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catlady Member in Phase 3
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Dr Marshall, Thank you for you quick reply. I will definitely write, especially now that I know they are still wasting money on the "all in your mind" hokum... Catlady |
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kikdoc Member
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Dr. Marshall: I live in the DC-area and would love to attend the NIH meeting with you, however I fear this would impact my job negatively (as I would not have one after that). I do wish you the best, and admire your tenacity and willingness to push forward. Do you think it would be possible to get a reporter to give you some coverage following your meeting? ie. a small press conference where you lay out your arguments and the stone-walling from NIH? The press loves a good conflict, and especially David vs. the Federal Goliath. Just a thought. Wish I could do more. Thanks! |
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Dr Trevor Marshall Research Team
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Kikdoc, If you take a look at the two recent newspaper articles you can see our problem. The pulmonologists whom are regarded as sarcoidosis specialists, although few in number, seem to be willing to say anything, in order to denigrate what we have achieved. Unfortunately the NHLBI is (largely) protecting them. http://www.thestate.com/mld/thestate/living/12351059.htm So a poor reporter is faced on the one hand with an effective intervention, maybe a cure, and on the other hand with respected medical experts who apparently will stop at nothing to slander us. Even to the point of fabricating imaginary patients whom they say have not been successful with the MP. That is why we need to make Dr Zerhouni realize what is going on here. This is not science. This is not even 'status-quo medicine'. I do understand your position (re: your job), and I am sure you will be with us 'in spirit,' at least We have set up a meeting in the OD/ORD the day before the seminar, and, if luck goes our way, maybe we can achieve our goals without any need for acrimony |
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wytnez Moderator 
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Hello all, I will not be able to make the conference but I sent my letter. I really wish I could be there. I really want my voice to be heard. I read my letter to my husband and he said that it was to the point. Dr.M, Meg,Belinda,Barb,Lottie, et al, thank you so much for your support in this fight for the cure to be recognized. The Marshall Protocol gospel will be heard and followed just you wait and see. Saj |
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Dr Trevor Marshall Research Team
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**** NOTICE **** Sherry (Scooker48) has offered to award a scholarship of her American Airlines mileage award, so that someone who is too remote from Bethesda to drive, can fly to Bethesda and attend the seminar. Please email Foundation -AT - AutoimmunityResearch.org if you would like to be able to attend using Sherry's scholarship. The foundation has also put reservations on two spare hotel rooms, and we may be able to help folks with accomodation, especially if they are able to share with others. Sherry, thanks for your generous help ..Trevor.. |
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LeAnne Member in Phase 3
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I would love to attend the conference, but with my husband gone and working on restoring power from the hurricane, I cannot plan to go anywhere. I do not know how long he will be gone. I have to hold down the fort at home and be here for my children. Please continue to keep us informed of upcoming meetings. I hope that the representatives of the MP will be fruitful in their endeavors. I know if we don't back down, we will finally make an impact on them. I know that we need to be respectful of them, their position, and where they are coming from. Although, it is difficult sometimes to understand their mentality on things. The evidence is staring at them right in the face and they simply ignore or disregard it. LeAnne Last edited on Wed Sep 7th, 2005 23:01 by LeAnne |
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wrotek Member in Phase 3
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Dr James P. Kiley said that the NHLBI has moved significantly in response to us, and other patient groups, and doesn't intend to move any more. He says they have 'negotiated' as much as they can. He said that Science does not change quickly. He said that NHLBI has no intention of entertaining any more changes from 'nitpicking' about their "Facts about Sarcoidosis" publication. They do not want to listen us because we are nitpicking  This is how NHI treat tax payers, when they expect help from NIH in field which is their job.Looks like the negotiations, listening to us, is all they can afford from these milion dollars payed. Talking? If I want to talk i call hot-line and it costs only few dollars/minute nad the effect is the same.With who they were negotiating our lifes? WHo decides who lives and who not if not Dr Kiley And Dr Zerhouni ? I would like to know what are principial reasons, why they refused? Only thing i see here that we are netpicking that is sad, when people deprerately looking for possibility to live longer are called beeing netpicking.Does all money goes to keep goog health of NIH workers and good sunburn of Dr Zerhouni? He needs a lot of watts i guess to keep it. IF doctor Kiley says science is not changing quickly, than meybe He has a idea what should we do next to speed it up? They are procedures like double blind studies i suppose which should be next step. What/who is holding the progress? |
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Dr Trevor Marshall Research Team
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Wrotek, Double-blind studies won't work for testing the MP. Can you imagine the folks on placebo wondering why they dont feel worse? Why they don't feel better? For 24 months? We can perform other kinds of ongoing studies. I have a few ideas, but those who talk about "double-blind" are just plain ignorant of even the most basic science of blinded study design. ..Trevor.. ps: you know why they refuse - the money machine needs to be kept churning |
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Dr Trevor Marshall Research Team
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**** Sherry's Scholarship Awarded to Barney **** Due to Sherry's generosity, Barney will be joining us in Bethesda, finding out how the NIH works, and meeting some of the key players. ..Trevor.. |
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rainbowcatcher Member in Phase 2/3
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WE COULDN'T HAVE HOPED FOR A BETTER MEMBER TO REPRESENT US! GO BARNEY!!!!!!! Like I said in my PM Barney, we wish you the best & our thoughts & computer will be with you on the 29th!  |
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jrfoutin Research Team
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Thank you Barney, and thank you Sherry (Scooker48) and Thank you Dr. Marshall and team for your time, sacrifices and efforts. I hope that all can proactively help the NIH to shift paradigms toward including Dr. Marshall in next year's awards. No doubt he is truely a Pioneer, so much so that TPTB's limited radar have failed to see or understand that as yet. (Society's big loss, but it need not be permanent.) Don't forget to post reports of your successful and enjoyable conference attendance. I'll continue to see what I can do to help from my cave. I'm working to get well enough to go next year! |
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Dr Trevor Marshall Research Team
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Several other members have written to Meg as well, making arrangements to attend, but to protect their confidentiality I will let each of them decide if they want to keep a low profile, or post their decisions publicly (here) Thanks to everybody for their support. I think this is going to mark a watershed in the visibility of the MP at the NIH. ..Trevor.. ps: more folks are still welcome, especially if you are within driving distance |
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ShrnHml Member in Phase 2/3 
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There must be a medical correspondent at the Washington Post. I tried to find his/her name on their website without success. I know nothing about PR, but I would assume that you want at least one reporter there. Other high profile newspapers have reporters stationed in DC for national news coverage. Does anyone know the ropes in getting coverage? Sharon PS Great news about Sherry and Barney. Thanks Sherry and Barney! You both do us proud. |
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Dr Trevor Marshall Research Team
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Sharon, I assume that the NIH will have themselves arranged for press to be at the seminar. |
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rainbowcatcher Member in Phase 2/3
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We can also write to News Papers around the world asking their journalists to watch the live web cast. The more papers; the more journalists watching. |
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Dr Trevor Marshall Research Team
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Rainbowcatcher, Ther will be little visible on the webcast, as we don't intend to be disruptive of the webcaat. It will be a waste of time getting journalists to watch webcast, and it could be counter-productive if they fall for all the NIH spin that Dr Zerhouni will be weaving. |
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Bonnie2 Member in Phase 2
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I gave testimony before the N.I.H back in 98 to the efficacy of the herb cannabis(marijuana)in Irvine calif. workshop they had which was funded by our federal gov. at the request at the then fed. attorney general,D.E.A. when the results of the 3 workshops,irvine-patients,new orleans-neuroligists,wash.d.c.-acadamy of sciences,It still didnt matter.Even tho the reports showed its overwhelming safety,no L.D 50's(non physically habit forming)ect.,the forums findings were ignored and buried,the point is that when it comes to the capitalist,conservatives that lobby for the pharmyscies interests and the mp,how is it going to sound when the message is...WE HAVE A CURE FOR SARCOIDOSIS,NOT JUST THAT BUT ALSO THE OTHER DISEASES A,B,C,D,E,F......AND ARTHRITUS,OH MY GOD,THE COMPANIES,WHAT WILL THEY DO WHEN THEY CAN SAY,UH WE HAVE CURES,THE PUBLIC WILL START TO EXPECT CURES,THAT IS UNEXCEPTABLE,IN ALL TOTALITY,JUST AS OUR GOV. RESPONSE TO KATRINA,ALL THE OTHER THINGS THAT ARE UNJUST IN THIS WORLD.MAYBE WE SHOULD ORGANIZE A MILLION PEOPLE MARCH IN D.C,IT SEEMS THAT GETS THE NEWS,OR LETS GO TO TEXAS AND STAND IN LINE W/REST OF THE AMERICANS THAT ARE TOTALLY FED UP W/OUR GOV.RESPONSE TO THE WAY ITS PEOPLE ARE TREATED THAT WE GO TO WAR WITH OTHER COUNTRIES FOR,EVERY YEAR WE COORDINATE PARADES 4 THOSE SICK WHO USE CANNABIS,EVERY 1ST WEEK IN MAY,WHY COULDNT WE START A CURE DAY,ORGANIZE IT IN EVERY TOWN WHERE WE HAVE PM ON MP?LOCAL PAPERS,METRO NEWSPAPERS ALWAYS PICK THE STORIES UP.THINK ABOUT IT!i CAN TELL YOU HOW TO ORGANIZE THE PARADES,WHO TO SEE TO GET PERMITS ECT.THE MARIJUANA MOVEMENT IN CALIF. STARTED W/ GRASS ROOTS GROUPS,TAKE HEART WE CAN BE HEARD BUT THE PUBLIC NEEDS TO KNOW! WE LEARNED IN MARI. MOVEMENT TO TAKE IT TO THE PEOPLE,THEY ARE THE ONES WHO PAY THESE JERKS THIER BENZ CAR PAYMENTS,PLEASE THINK ABOUT IT ITS NOT HARD,COMMUNITIES SUPPORT SICK PEOPLE,THINK ABOUT IT 2bONNIE |
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Dr Trevor Marshall Research Team
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Bonnie, I think the most logical thing to do is to focus on those diagnoses for which we have plenty of data - particularly Sarcoidosis, CFS and Chronic Lyme, and allow the bigger picture to gradually dawn on them... |
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scooker48 Member in Phase 3
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We must keep pounding away at our represenatives. I will send this letter tomorrow. 11 September 2005 Elias A. Zerhouni, M.D. Director National Institutes of Health 9000 Rockville Pike Bldg. 1 Bethesda, MD 20892 Dr. Zerhouni, In light of criticism of government for Hurricane Katrina response, I propose a “win-win” solution. You have the power to show the Federal Government is indeed responsive to its citizens. Attached please find entries from THE MARSHALL PROTOCOL (MP) website titled “Success Stories”. I urge you to read a few. I find many of these people’s stories fascinating. Using safe medications and life style changes from THE MARSHALL PROTOCOL, over time people have beaten into remission and CURED their disease. The diseases named are Sarcoidosis, Chronic Lyme, CFS and Rheumatoid Arthritis to name only a few. As a librarian who reads technical literature, I can see the MP as a successful treatment to many other disease states. I urge you investigate these claims. I believe the logical way to proceed is to form a committee to interview MP people and review their records. This would require a very small amount of money. Although I have written you before on this matter with no reply received to date, this letter is sent via REGISTERED MAIL to document a paper trail. I am also sending this letter to my elected representatives asking their help. There are several thousand people who are aware of THE MARSHALL PROTOCOL. We will not go away and by ignoring us you are doing dis-service to government and the current Administration. I urge you to act. Respectfully, Sherry M. Cook Retired, U.S. Coast Guard CC: Senator Dianne Feinstein Senator Barbara Boxer Congresswoman Anna Eshoo Congresswoman Nancy Pelosi Last edited on Sun Sep 11th, 2005 23:30 by scooker48 |
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madwolf Health Professional 
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It would be helpful if we could get Bill ORielly interested. The spin has to stop somewhere. Unfortunately, I have noticed that he relies heavily on his staff for his opinions. Still, it's worth a shot. He has a huge following. SteveF (madwolf) |
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rainbowcatcher Member in Phase 2/3
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In addition to other avenues, would a petition like this breast cancer example be helpful to the MP cause? http://www.lifetimetv.com/reallife/bc/pledges/bc_mast_pledge.html Friends & family would be happy to sign also . . . just a thought? |
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Dr Trevor Marshall Research Team
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Rainbowcatcher. We are way beyond the petition stage. We already had the 'write-in' campaign, back at the end of May. |
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rainbowcatcher Member in Phase 2/3
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Yes, I asked friends & family to write but none could be bothered as people are self absorbed in their own lives. A signature is all some people have time for; that was my only point. |
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Dr Trevor Marshall Research Team
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Yes, but politicians know that signatures are easily bought. Hiring folks to stand in shopping malls giving away free gifts is not uncommon in petition drives. So the value of a signature is less than the value of those personal letters which were written, each of them a little different from each other. We know that those letters were written to Dr Zerhouni from MDs, PhD,s MPHs, RNs and other professionals which NIH cannot afford to ignore, as well as by "hundreds" of patients (that was the NIH characterization). We have visibility, now we need to move to the next step. |
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scooker48 Member in Phase 3
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I was thinking of getting postcards from the U.S. Post Office, and attaching labels to the Director of the NIH. On the message section, possibly have the following sentence: "Please either substantiate or refute The Marhsall Protocol" and then a line for name, street address, City and State and ZIP code. People would only have to sign their name and drop the Postcard in the mail. Once I had these postcards preapred in such a fashion, I could send them to my friends and family. I would enclose "What is the Marshall Protocol" and then my own experience. Just an idea and it could be done through the U.S. Mails. Sherry |
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Dr Trevor Marshall Research Team
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Sherry, Why not just ask Dr Zerhouni to do that? It is likely that he hasn't even though of doing it... It is likely that his minions have been advising him very badly indeed. The corollary is that he is a heartless politician, and I still find that unlikely. So, I suspect he now knows that something is wrong, and he will certainly know it after the event next week. I intend to suggest that his office convenes a Consensus Conference to give a proper airing to the new data. I will be doing that during the visit to Bethesda |
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Debbie-O Member
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Dr. M: If you have time, could you please elaborate on why the conventional "double-blind" studies would not work for testing MP? All participants in double-blind studies wonder if they have the placebo, but that's the nature of the study, isn't it? Do you believe it would not work because it is unacceptable to subject participants to falsely hoping they will improve, or because there is some drawback in the type of study? What other type of studies are there in the science world that would be satisfactory? This stuff is so darn fascinating. Some of it is so logical, it's almost inconceivable to me that there are not a lot of doctors or science-folk jumping on this. Oh! how I wish I had gone into medical research! I enjoy knowing the science behind all of it. Thank you for all your efforts, Debbie-O |
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Aussie Barb Research Team 
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Debbie from MP FAQs.... Easy Finder see FAQs When will a blinded study be done of the Marshall Protocol? Why won't my doctor consider the Marshall Protocol? Why is the Marshall Protocol not being discussed & used by doctors around the world? I don’t understand the science behind the Marshall Protocol. Where can I get answers? thanks, Barb .... |
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Guss Wilkinson Member in Phase 3 
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A major part of the protocol involves avoidance of light and foods containing vitamin D - this part of the treatment would be impossible to blind. |
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Dr Trevor Marshall Research Team
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Guss, We could do multi-factorial randomized blinded studies. Those are what I am talking about with the FDA. ..Trevor.. |
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Tim Member
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I happened to see Dr. Zerhouni on PBS Nightly Business Report last night. He seemed like a genuinely nice but ignorant fellow. One thing he said really struck a nerve - he said he thought they would soon be able to diagnose disease before people get sick. I'd be satisfied if he could diagnose disease after it is present, but sadly even that is currently out of reach. |
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scooker48 Member in Phase 3
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I just finished a mailing to 40 friends. The envelope contains my friendly letter and a stamped, pre-addressed postcard to the NIH Director. I've asked them to write the following sentence: "Please study the Marshall Protocol" or "Please either substantiate or refute the Marshall Protocol". I also am sending along, in the same envelope, the excelent summary, "What is The Marshall Protocol". Keep on pushing. Sherry |
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jrfoutin Research Team
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Whiile in Bethesda, one might look into: Howard Hughes Medical, non government http://www.hhmi.org/ Howard Hughes Medical Institute 4000 Jones Bridge Road Chevy Chase, MD 20815-6789 (301) 215-8500 e-mail: webmaster@hhmi.org http://www.hhmi.org/contact/directions.html http://www.hhmi.org/contact/directory.html Unless everything worthy of time at the Director's Pioneer Awards on the 29th have already been arranged. |
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kenc Member in Phase 3 
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What is a multi-factorial randomized blind study? |
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Foundation Staff .
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kenc, In a multi-factorial study, a drug is evaluated by testing it in combination with other drugs rather than by itself. For example, one group of patients might test therapy A, another test therapy B, a third group test A and B combined, and a control group test neither A nor B. Randomized means people are assigned at random either to receive the new drug, the standard treatment for that disease, or a nonfunctional substitute (such as a sugar pill). This last group is often called the control group, or the placebo group. Blinded studies can be double-blind in which neither the patient nor the physician knows who is getting which drug or single-blind in which the doctor knows but the patient does not. Best, Meg |
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Dr Trevor Marshall Research Team
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I finished the Press Releases in time, and will be flying out tomorrow morning to meet Meg and Belinda in Washington. We have an appointment at the NIH on Wednesday morning, and then then we are meeting the 5 other MP folks who are arriving Wednesday to let Dr Zerhouni know that this community will not be ignored, during the seminar on Thursday. Wish us all luck, Trevor.. |
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LeAnne Member in Phase 3
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I will be with you all in spirit. Thank you for everything you are doing.. I hope they will be more receptive this time. None of our efforts are in vain. Have a safe trip and a wonderful time! LeAnne |
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Betsy G Member in Phase 3
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Trevor, Have a safe trip! I appreciate your energy, commitment, and effort on behalf of all of us. I pray that Zerhouni's eyes be opened by the info that you, Belinda, and Meg will deliver. Good luck and God bless, Betsy |
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wytnez Moderator
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Trevor, Belinda and Meg, You will definately make a positive impact. Just the fact that you have not let the NIH deter you from moving forth with this life saving treatment is proof that your voice will be heard. Tens of Thousands will be on the road to recovery thanks to you all. Your knowledge and expertise is going to pay off. Have a safe trip.  We will see you when you get back. Saj |
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ShrnHml Member in Phase 2/3
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Profiles in courage? Yes..........all of you! We are proud to have you representing us. Sharon |
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Morris W. Milnes Member 
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Good luck Dr. Marshall. Wish I could be there, although at this time I have enough trouble dealing with conferences where everyone is friendly like at your conference in Chicago. Morris |
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wrotek Member in Phase 3
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Good luck, hope they will listen reasonable argumentation. |
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kikdoc Member
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Good luck! If you speak with Dr. Zerhouni, remember he is a scientist, but in his position now he is first a politician and not likely to give you much information. (Unfortunately in the political climate right now he actually may not be ABLE to give you information. This is a very centralized Administration.) He may talk, but say nothing. Hopefully you will leave with more leads than dead ends! |
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Frans Member in Phase 2 
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Best of luck to you all !! I admire all your endurance and energy to keep fighting those windmills !! They will break down eventually, this community is growing all over the world and will NOT be kept overseen by TPTB !! Sincerely, Frans |
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scooker48 Member in Phase 3
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Anyone who grasps the significance of "The Marshall Protocol" (MP) probably feels the same way I do: this is a historic project. And forgive me for drawing analogies, but its as earth shattering as The Manhattan Project (another MP!). But not as destructive to human life or peace on the planet. I'm going to write another 10 friends and enclose the pre-addressed postcards to the NIH Director. Press on... Sherry P.S. My thoughts are with everyone in Bethesda these next few days. |
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Aussie Barb Research Team
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From http://nihroadmap.nih.gov/pioneer/symposium2005/ see AGENDA Thursday 29th, 2005. 8.15am - 3pm NIH Director's Pioneer Award Symposium Masur Auditorium Clinical Center (Building 10) NIH Bethesda, Maryland. & To view a Web broadcast of the symposium, go to http://videocast.nih.gov. JRFoutin wrote: "RealPlayer is required for the NIH webcast. Those with just the windows media player will miss out on details if they haven't got it installed before the event. I just loaded my machine with Realplayer. They don't need the expensive one, just the standard freebee." World Clock |
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shegeek Member in Phase 3
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The best of luck to you, Dr. Marshall. I'll be offline, changing residence, but my thoughts will be with you. |
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Dr Trevor Marshall Research Team
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We had a good meeting Wednesday morning with Dr Steve Groft, Director of the Office of Rare Diseases. Then we 'tested' the subway ride and 'cased' the Masur Auditorium. Here are Meg and Belinda in front of the NIH Director's Message Board in the Clinical Center  There probably won't be a lot happenning on the webcast, as we are going to keep a low profile. The banners will not be obstructing the camera, and all the discussions will be face-to-face at the various breaks during the sessions. There is a Press Release with some big news that we will be giving to the press next Monday. You can have a look at the news yourselves, and later in the day I will be back online so we can talk about how to make sure we get as wide a coverage as possible for it. http://autoimmunityresearch.org/press_3oct05.pdf ..Trevor.. Last edited on Fri Sep 30th, 2005 11:37 by Dr Trevor Marshall |
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Ramzi70 Member in Phase 3 
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Good Luck to you all. |
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Freddie Ash Member in Phase 3
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HI ALL This is Fred in WV. Thanks to all and I have been praying that this will be the final fight with the NIH to get this cure out to all the people that need. This is big!!! Your friend in sarcoidosis Freddie |
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Frans Member in Phase 2
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Wow ! This looks promising! Especially the cooperation with eg the people of the OOPD looks very promising to get things accepted! Now I understand what you have been doing with your time  I can't help it, but a phrase from a movie with Tom Cruise and Cuba Gooding jr keeps coming to mind: "SHOW ME THE MONEY !!!"  Sincerely, a very hopeful Frans PS I just heard of another doctor here in the Netherlands who is probably going to implement the MP... to be continued... Last edited on Thu Sep 29th, 2005 14:53 by Frans |
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kikdoc Member
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This is GREAT news, Dr. Marshall! Congratulations on all of your hard work and perseverance. I look forward to hearing how the Trans-NIH meeting went! |
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Frans Member in Phase 2
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Dr Marshall, Can you tell us what exactly will be the results if these applications are awarded? 1. will there be money made available to do the phase III study? 2. same question, but for formalising the phase I and II studies by gathering the results from those phases? 3. will beni/clindy/mino be officially made applicable for sarc, leading eg to an obligation for insurance companies to pay for these drugs, when used for sarc? 4. will this finally put an end to dr Cheney's objections about the type II receptor being wide open for angotensin II to bind to...? Sincerely, Frans |
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Betsy G Member in Phase 3
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NIH webcast cancelled?? Now, why would that be??? Anxious to hear how this day progresses. Good luck to you Trevor, Meg, and Belinda!! Betsy G |
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LeAnne Member in Phase 3
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They went to lunch at 11:30 and will be back at 1:00. The schedule said they had an awards presentation. This was probably not broadcasted. LeAnne |
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wytnez Moderator
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I couldn't open it. Could someone give a short summary? Saj |
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Dr Trevor Marshall Research Team
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It has been a very busy day.We didin't see the awards as we spent several hours in a meeting hastily organized by Dr Zerhouni's Office staff with key folks from NHLBI who have been standing in our way. There were 8 of us in the meeting and this overwhelmed the naysaying of the NHLBI Luddites IMO. This was a very important day, the day NHLBI was finally brought to the table, and I will post details later on, after we have all debriefed and calmed down. Belinda has a photo of herself with Dr Zerhouni which I haven't been able to copy out of her camera yet Here is a group photo of the MP delegation on the steps of Building 1, Dr.Zerhouni's ofice, after the meeting. |
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Frans Member in Phase 2
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Wow! An unplanned meeting instigated by dr Zerhouni's staff ?? That sounds like a miracle ! We couldn't have hoped for more, I think? Sincerely, Frans |
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LeAnne Member in Phase 3
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I am soooo proud of all of you that participated in this meeting. Thank you for representing us! I truly hope we have made progress in getting the NIH to listen. Keep us posted on other upcoming conferences. I think if we could get fifty or more patients on the MP or recovering patients to one of these meetings, it would be wonderful!! I am wondering if there will be any future meetings designated only for the MP in which we can invite doctors and those that may have inquiring minds. LeAnne |
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Robertrr Member in Phase 3
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This really sounds like good news! Thank you for representing all of us MP'ers and helping to spread the good news that there is hope for all the people out there who are stuck with Doctors using conventional medical wisdom to treat these diseases! Keep up the good work! Robert |
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Dr Trevor Marshall Research Team
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LeAnne, We have requested that NIH host a "State of the Science" conference to examine exacty what we really know about Sarcoidosis. ..Trevor.. |
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jrfoutin Research Team
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That is so fantastic. Absolutely fantastic. Anything previous to MP is simply outmoded science. But that is the gold hidden between the lines on this site, and in the hearts of those who stood for us this day. Thank you all deeply, gratefully, thoughtfully, constantly. Thank you. Last edited on Fri Sep 30th, 2005 04:22 by jrfoutin |
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ShrnHml Member in Phase 2/3
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I couldn't open it either. I'm extremely curious, so can someone tell me what the good news is? Thanks...............Sharon |
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LeAnne Member in Phase 3
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Dr. Marshall, If your request is granted, than this would be the perfect opportunity for all MPr's to attend! Everyone of us who have been so graciously blessed by the findings of the MP, should try to make the effort to attend. Again, Thank you. LeAnne |
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wrotek Member in Phase 3
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amazing |
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scooker48 Member in Phase 3
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I send a huge THANK YOU to the entire Research Team and everyone who participated in the meeting yesterday. I have guarded optimism about the requested meeting. It would obviously be great for the MP, cut they might easily deny the request. When will we know? Sherry |
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Aussie Barb Research Team
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see info re opening PDF files see also Topic: Press Release about FDA application to go out on Monday |
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Dr Trevor Marshall Research Team
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Sherry, First, thank you for your special help with our efforts We will probably have sense of what follow-up there will be sometime during this coming week. I will be working the phones to make sure that I touch bases with all the players. What had the greatest impact was that there were 8 'representatives' of the Foundation at the NIH, and that they had each come from seperate states, some having flown in. That clearly communicated our sense of purpose, and it was not lost on Dr Zerhouni's staff. Dr Zerhouni himself did not attend the meeting, it was with his senior staff, and senior staff from the NHLBI (Dr Zerhouni was pre-occupied with the awards presentation), but each of us met him (briefly, in the hallway), and shook his hand. ..Trevor.. |
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LeAnne Member in Phase 3
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.Dr. Marshall, Did you get a sense that they were truly open minded and truly wanting to understand and inquire information about the MP, or is this just a way for them to be able to say that they did take the time to listen? I know through our letters and contacts, that we have all begged them to listen to us. I am just wondering if they really want to listen or if they want to get us off their back. LeAnne Last edited on Sat Oct 1st, 2005 19:48 by LeAnne |
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Dr Trevor Marshall Research Team
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LeAnne, I got the impression they would rather not have to cope with radical change in medicine right now. But I will continue to plug away this week and see if we can turn their uncertainty into a desire to help. But from this day forward Dr Zerhouni has no deniability. He cannot say "I didn't know."  |
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Carole Board Staff 
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I want to extend deep appreciation to Trevor, Meg, and Belinda for their wisdom and energy in preparing for this recent event. I was fortunate to be a witness in the forefront of yet another milestone for our health and wellness. The presence and input of the patients were important, but the preliminary efforts leading to all of this have been extraordinary. Only time will tell, but I believe we will soon be receiving some positive communication from the NIH, as it appeared to me that most of those attending were interested in helping to meet our goals and needs. Their attention to Trevor and to the MP community was definitely noted! Trevor and his team diligently work on many levels simultaneously, mostly unbeknownst to only their family. We are greatly indebted to Trevor for his research and ingenious findings and to the board and moderators for sharing their knowledge through patience and perseverance. Congratulations also to Trevor for his success with the FDA filing! Carole |
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Dr Trevor Marshall Research Team
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Carole, I want to extend my thanks to you, and all the others who helped out with this event. I haven't named the folks who travelled to the NIH individually, because we try to maintain folks' anonymity as much as possible. But I welcome their perspectives here, as, I am sure, do the members. Without you all being present Meg, Belinda and I would never have been taken seriously. Now we will need your help as we try to impress upon the NIH folks that they need to "walk the walk" as well as "talk the talk." I think Dr Allen will be contacting you all by email, and appreciate your ongoing support to keep pressure on TPTB ..Trevor.. |
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wytnez Moderator
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Trevor, Belinda, Meg and all who attended this milestone event on behalf of all sufferers of chronic diseases......I extend a heartfelt thank you! I am so happy that you are working with the FDA to get the only treatment mandated to treat chronic diseases. I am in the process of finding out who covers the health section in my city paper and would love to enlist the help of the GNP who is following me on giving them her documented proof of my progress. Once again a big    Saj |
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BARNEY Moderator 
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HI ALL!! BARNEY HERE!! WOW, WHAT A TRIP!!! SORRY IT HAS TAKEN ME SO LONG TO WRITE AND LET YOU ALL KNOW WHAT HAPPENED, ESPECIALLY TO ALL THOSE WHO SENT ME 'PEP' PM'S, BUT HAD TO REST. WE STARTED OUT WITH A MEETING AROUND THE DINNER TABLE AT THE HOLIDAY INN RESTAURANT. WE WERE GIVEN A COPY OF THE PRESS RELEASE AND SOME OTHER PAPERS THAT DR. MARSHALL WANTED US TO SEE. WE DISCUSSED, BUT CAME UP WITH NO REAL PLAN, EXCEPT WE WOULD MORE THAN LIKELY USE THE BANNERS WE HAD MADE. ACTUALLY WE DECIDED TO PLAY IT BY EAR MOSTLY, WHICH IS WHAT REALLY HAPPENED. THIS IS MY STORY, AND I AM SURE I WILL MISS SOME OF THE THINGS THAT HAPPENED, SO FORGIVE ME IF I MISS TELLING ANYTHING. WE GOT UP AT 530AM TO GET READY FOR THE DAY. THE HOTEL SERVED A NICE BUFFET WHERE WE WOULD MEET AT ABOUT 630AM FOR BREAKFAST AND A MEETING FOR WHAT WE COULD EXPECT FOR THE DAY. WE RODE THE SUBWAY TO THE NIH (MY FIRST SUBWAY RIDE, WHAT AN EXPERIENCE). WE WERE CHECKED THRU SECURITY AND GIVEN OUR BADGES. WE WENT DIRECTLY TO THE BUILDING FOR THE PIONEER AWARDS. WE SCOPED IT OUT AS TO WHERE TO SIT TO BE OUT OF THE WAY OF THE AWARDS AND THE CAMERA. WE DID NOT WANT TO DISTURB THE AWARDS OR THE FILMING. WE SAT IN THE REAR OVER TOWARDS THE RIGHT AND WE PATIENTS HELD UP VARIOUS BANNERS. A LADY (ANN) CAME IN AND ASKED US WHAT WE WERE DOING AND WE ADVISED HER THAT WE WOULD LIKE TO BE HEARD BY DR. ZERHOUNI. WE KEPT HOLDING THE BANNERS UP AND IT WAS BEGINNING TO GET A LOT OF LOOKS. SHE THEN CAME IN AND WROTE DOWN WHAT THEY SAID. I COULD NOT CONTAIN MYSELF. I HAD HAND OUTS (ABOUT MY LIFE AND JOURNEY ON MP), SO I GRABBED ONE AND ASKED MEG TO LET ME OUT. I WENT INTO THE LOBBY AND ASKED ANN TO READ THIS. TURNS OUT SHE WAS IN THE COMMUNICATIONS DEPARTMENT AND HER ASSOCIATE WAS WITH HER. I EXPLAINED WHY I WAS THERE AND SHE WANTED MORE INFO SO I WENT BACK INSIDE TO GET DR M AND BELINDA. THE HEAD OF COMMUNICATIONS FOR THE NIH JOINED US ALONG WITH 5 CAMPUS POLICEMAN/WOMAN. AS WE EXPLAINED (ESPECIALLY DR M/BELINDA), THE POLICEMAN DISAPPEARED ONE BY ONE, SEEING THAT WE WERE QUIET 'PROTESTORS' (AS THEY LABELED US). I ASKED IF ANN WOULD LIKE US TO REMOVE THE BANNERS. SHE SAID THAT WAS OUR 1ST AMENDMENT CONSTITUTIONAL RIGHT AND SHE HAD NO RIGHT TO TELL US TO TAKE THEM DOWN. I TOLD HER WE WOULD AND SHE SAID SHE WOULD TRY TO GET US A MEETING SET UP. I WAS TELLING THEM I WAS DYING (WITHOUT MP) BECAUSE THEY HAD EVERYONE (THE DOCTORS) CONVINCED THAT SARC GOES AWAY AND I TOLD HER THAT WAS NOT TRUE. I BECAME SO EMOTIONAL THAT ALL OF A SUDDEN (OUT OF THE CLEAR BLUE SKY) I BROKE INTO TEARS AND HAD TO LEAVE THAT DISCUSSION. AS I PASSED THE YOUNG LAD POLICE OFFICER, YOU COULD SEE SHE WAS ABOUT TO BREAK INTO TEARS AS SHE ACKNOWLEDGED MY PAIN. THE REST WAS IN BUILDING 1 WITH 6 HIGH RANKING NIH AND NIHLB AND THEIR COMMUNICATIONS DEPT, WHERE WE TOLD THEM OUR PLACES OF RESIDENCE (THEY WERE VERY IMPRESSED THAT AS PATIENTS, WE CAME FROM ALL OVER THE US). DR MARSHALL AND BELINDA DID A GREAT JOB OF TRYING TO GET OUR POINTS ACROSS AND WE PATIENTS PUSHED THE POINT THAT WERE IT NOT FOR MP, WE WERE DYING AND THAT SARC DOES NOT GO AWAY AND WE WANTED THEM TO STOP TELLING THE WORLD THAT SARC DOES GO AWAY. AT THE END OF THE MEETING, CAROL BROKE INTO TEARS JUST AS I HAD AND NEITHER OF US COULD EXPLAIN IT, EXCEPT THAT IT JUST CAME OVER US. WE ACCOMPLISHED THE BEGINNING, AND NOW ALL OF YOU MPers NEED TO JOIN THE 8 OF US WHO WENT AND DO WHATEVER IT TAKES TO GET OUR STORY OUT. BARNEY |
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rainbowcatcher Member in Phase 2/3
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Dear Barney, We truly understand those tears & you have every right to shed them! You have been through hell to get here (both of you) & finally someone was listening to you; anyone who has a heart would have felt the same. We are very proud of you all! A HEARTFELT THANK-YOU TO EVERYONE WHO ATTENDED! "We can do it!" (quote barney) RB |
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jillian Member in Phase 2 
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Is there an anticipated timeframe for how long it takes for the FDA to 'approve' the three applications? Is confidence high that they WILL actually approve the applications? (After seeing what's happened the past couple of years with the MP and TPTB, I've gotten very pessimistic...) 'til later, Jillian from North Dakota |
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Dr Trevor Marshall Research Team
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Jillian, The MP has actually been accepted very fast by TPTB. If you compare Barry Marshall's work, from the 1982 discovery to the FDA decision in 1994, we have done very well so far. I am continually told by TPTB at the NIH that one of the major hurdles we have to jump is that we just want things to move too fast. If I was sitting in a cushy job in a University then I wouldn't care how many patients died while we were getting the Phase 3 trials organized properly, would I? One has to understand the conventional frame-of-reference before one can appreciate the magnitude of our task As for when the NIH will make the next move, well, things happened today (behind the scenes). Small things, but finite, I believe... ..Trevor.. |
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jillian Member in Phase 2
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Trevor, Thank you for your answer and, as always, your continuted support. Count my pessimism to pre-MP Th1 inflammation! (only pre-MP a couple more days, can't wait to see what emotional herxes I get  .) Your optimism is good enough for me!'til later, Jillian |
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Frans Member in Phase 2
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Dr Trevor Marshall wrote: As for when the NIH will make the next move, well, things happened today (behind the scenes). Small things, but finite, I believe... Dr Marshall, Every step is a step closer to the end-goal, MP for everyone who (desperately) needs it! Sincerely, Frans |
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Ival Moderator 
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HI Sorry it has taken me so long to post on this but I type with one finger and I have been so busy since I have gotten back. I went to Bethesda because I could not believe that I'm getting well on a protocol that I found on the Internet and then went to Chicago to explore further. I had to see for myself that the NIH cannot comprehend what is actually happening. I believe the meeting definitely open the door but I'm still not sure how much they understood. The meeting started with them pretty much trying to scare Trevor by telling him they thought they had already settle this with them. And that he could be sued because he was practicing medicine without a license he pretty much said that with a low tone of voice. I'm gonna say that doctor Roth is the one that did most of the talking but I could be wrong on the name. Then when he saw that Trevor was going to continue with this he said that the best he could remember was all the paperwork that he had from before was not published in peer review papers, he could not say that officially because it did not have the paperwork in front of him. That is when Trevor showed how well he is he jumped straight out of the chair and spun around it was one of the best memories I have of the meeting. Then doctor Roth pretty much tried to explain to us how much money has already been spent on this disease by doing the study and we should be excited about that and some estrogen study that they were working on to. Every time he tried to get off the subject Trevor, Belinda , and Meg would not let him that was really impressing to me how dedicated they are to get this out to the public. Everybody at the meeting got to talk to them tell their names and where we were from and how we were getting well but nobody actually ask me what disease I had come to think of it. I saw most of the patient's eyes swelling up while they were talking when it came to my turn I wanted to talk for an hour but I could hear my voice cracking with emotion and I did not want to sound like an idiot so a pretty much just stop talking. They kept acting like it was alternative medicine that we were taken some vitamins and some bat wings and mixing them together and Blogging on the Internet and getting well. Trevor, Belinda, and Meg did an excellent job explaining the protocol to them and it was not alternative medicine. It seemed to me that he was using the state of the science meetings to scare Dr, Marshall off that they were going to be expensive and there was no way he could even be ready for such a task. I think it overwhelmed him when Trevor came back to that is an excellent idea and I have all my doctors and scientists ready when can we start because I have not been able to talk to any of your doctors and scientists. That is when it looked to me that he just started going through the motions to be nice until we left. After the meeting was over in the hallway he asked Trevor to please not use the word cure and that made me think that we did get a lot across. Trevor told him he was using the word curative in all his papers which I thought was real professional and seemed like a good compromise. The best thing about going was being around the group it just made me proud it was a feeling that I haven't felt before it was great. They saw 8 people this time by this time next year if nothing is done they probably could see 8 hundred wouldn't that be great. This is some of the things that come to mind and my opinion of how the three days went. Ival |
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Foundation Staff. .
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Meg may report more about the trip to Bethesda, but this is what she posted earlier: Belinda "My impression of the NIH meeting was that they were trying to 'handle' us. The PR people moderating the meeting had no background information and did not ask for any. They seemed to rely on the short (surely biased) briefing they must have gotten from the Heart, Lung and Blood Institute (NHLBI) folks. Dr. Roth, the NHLBI Deputy Director, insisted that the Marshall Protocol was "unproven", that we needed to do a study and that we could apply for an NIH grant. When told that two Pioneer Award grant applications that fit perfectly into the desription of the new NIH Director's Roadmap initiative to help novel scientific studies, was rejected, Dr. Roth said that the appplications must have been inferior or the study not nearly as important as those that were accepted because they were reviewed by their "experts". Nevermind that all last years' recipients were 'pioneers' in well-established research facilities and few, in any of the studies, had any groundbreaking potential. This representative of NHLBI, the institute that is responsible for sarcoidosis, said it is our responsibility to prove to them with a randomized, placebo-controlled, double-blind study that the Marshall pathogenesis is correct. While Dr. Roth admitted that we might be right, he said there was nothing the NHLBI or the NIH could do to help. He made it clear with his body language, tone of voice and attitude that we were wasting his time. The NIH, the nation's premiere research system, spends $28 billion tax dollars per year. This immense bureaucracy's focus, however, is on managing diseases, not finding cures. The system, IMO, is seriously flawed and will not be easily changed because too many careers and too much money is at stake. It appears that there is no avenue at the NIH for promoting the study of a medical breakthrough that doesn't come from within their academic network. But we will continue to push for scientific accuracy in the information about sarcoidosis that the NIH posts on its website because its director, Dr. Zerhouni, said NIH information must be impeccable. We made it clear that the unsubstantiated myths they are publishing were confusing our doctors, hindering our diagnoses and making it difficult for the average doctor to recognize the potential of the only cure available. Two other NHLBI employees were present and they voiced interest in helping us accomplish this goal. Our suggestions that the NIH call a 'state of the science' conference about sarcoidosis so that we could meet with their experts met with some approval. Perhaps because the responsibility for convening such a conference lies with the Office of Rare Disease and it was a welcome change of subject." Meg |
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wrotek Member in Phase 3
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I thought that NIH and NHLBI is for making sick people life more easy, and what i am hearing right now is they are making more troubles instead solving or trying to help solve troubles. What are they for if they can`t do anything. Institution which can do nothing is not needed or need to be reformed. It is radicullous that Dr Marshall developed cure for disease and now He has to deal with administration, politics and other stuff that should not concern His mind and are others people job who seems to not fit to their duties I have read Your`s raports with great intrest |
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Foundation Staff. .
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The people at NIH all seemed to have the same question: “Why are you here?” Why would a group of people resort to holding up banners at the Pioneer Awards? Barney had a good answer (paraphrasing): “Because we want your attention – we want you to listen to us, and we especially want you to understand what life was like battling a terrible disease before this treatment developed by Dr. Marshall because he understood what causes the disease. We want action too, because we are only a sampling of other patients who are recovering using this treatment.” There were still puzzled looks, so I explained that patients like Barney believe that someone like Dr. Marshall, who has built on the work of many other researchers and added his own discoveries to devise a treatment that is an effective intervention for such a disabling chronic disease as sarcoidosis -- when this treatment has literally turned their life around -- people like Barney seem to be saying that they believe that Dr. Marshall is the TRUE PIONEER. Who else has delivered something that has gone so directly to the bedside to assist suffering patients? In the later meeting with NIH/NHLBI representatives, there was some clarification of a few misunderstandings. But it was obvious there’s still a lot to be learned about who Dr. Marshall is, what has been accomplished and the significance of his discoveries. Most impressive to the NIH/NHLBI staff was the fact that there were so many people in that room who had come from all over the U.S. to talk about the MP. The staff seemed to be contemplating what could have motivated people to travel to Bethesda to speak so passionately about a combination of medications and lifestyle modifications. Why? This is obviously not what NIH/NHLBI is used to hearing. They are used to patients lobbying (with passion) for more research to find a cure. How often, though, does someone like Ival tell them, “What I just don’t understand is why in the world someone isn’t beating down the door to investigate this treatment, because my recovery has been simply amazing.” Perhaps the only time they hear talk like that is when people talk about herbs, over the countter potions and creams. Yet the patients had explained that heir own physicians were managing this new therapy, writing the prescriptions and watching their progress with a combination of bewilderment and satisfaction. The meeting closed with a short list of action items and reassurances there would be follow-ups. I have no doubt that the presence of patients, their heartfelt explanations of how they came to try the Marshall Protocol and what had happened to them when they did is the one thing that made a difference in Bethesda. The fact is that your letters were not answered either because NIH either did not think you were real or they did not think answering you was important. These are the things NIH/NHLBI doesn’t understand, in my opinion: 1. The science behind Dr. Marshall’s discoveries. 2. The significance of Dr. Marshall’s explanation of the etiology of chronic Th1 disease. 3. The impact of the explanation of the etiology of Th1 disease on treatment. 4. How treatment based on an understanding of Th1 disease etiology affects patients, their lives, the community and the economy. 5. How the current system of academia-linked investigator-driven research fails. The patients who went to Bethesda are each and all wonderful people. They pled your case logically and passionately. I hope NIH/NHLBI is beginning to understand why they went there, because as time flows on IF there is no progress at NIH, there will only be more people asking why someone at NIH isn’t listening to Dr. Marshall and beating down the door to learm more about the etiology of Th1 disease. Belinda |
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LeAnne Member in Phase 3
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What is the next step? What can we do to help? When is the next meeting that the NIH will hold on sarcoidosis? If they want to see proof, than they need to see proof. We all need to band together, save our money, and prepare to attend. If we can organize a meeting with fifty or more MP patients, it would make a huge statement. The key to this would be to organize it. I know there are people all over the world who are on this protocol. It would take planning, time, and money. Is this something that would be possible to organize? Another thought would be holding our own meeting, and asking Dr. Kiley,Dr Roth, Zerhouni, and other key players to attend. If we did this, they would be on our turf, and we would be in control of the meeting. Again, what should the next step be? LeAnne |
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k1075 Member in Phase 2/3 
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Hello to all, I attended the meeting at the NIH and can officially say that although the members of the NIH seemed to me to be very defensive regarding their handling of we MPers.... I believe the door has been opened for them to take Dr. Marshall more seriously. It did seem that they had a preconceived notion that we were advocating some type of alternative medicine, and I believe Dr. Marshall, Belinda, and Meg did an excellent job of explaining that we are not just taking herbal medication and meditating...but that this is a real "curative" protocol. There did not seem to be to be any scientists or doctors in the meeting, so it was very difficult to get across the science to them. We were basically meeting with the PR people and the deputy director, who I believe is a lawyer. I do think we drove home the need for new information to be put out regarding Sarcoidosis and the ramifications of misinformation. Barney did an excellent job of scaring them when she said that she had a friend with Sarcoidosis who has been donating blood for 20 years because she didn't know it was contagious. You should have seen the look on the deputy director's face when she said that! I think it was comments like this which really got their attention. I do believe that they listened to us, whether we were actually HEARD or not remains to be seen, but at the very least I do sincerely believe that we GOT THEIR ATTENTION, and hopefully that will open the door for Dr. Marshall in the future. I definitely believe the trip was worth every minute and that possibly it is a solid beginning............ |
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dougs Member in Phase 3
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When the efforts to convert the NIH were publicized here last summer I remembered a book that I read at college 35 years ago. It is entitled “The Structure of Scientific Revolutions” by Thomas Kuhn. In this book Kuhn popularized the concept of science operating within a paradigm (i.e., a world view). Scientific revolutions according to Kuhn require a paradigm shift. Unfortunately for us these shifts take place a brain at a time. The following excerpts are from chapter 12 which discusses how scientific revolutions occur. “What is the process by which a new candidate for paradigm replaces its predecessor? Any new interpretation of nature, whether a discovery or a theory, emerges first in the mind of one or a few individuals. It is they who first learn to see science and the world differently, and their ability to make the transition is facilitated by two circumstances that are not common to most other members of their profession. Invariably their attention has been intensely concentrated upon the crisis-provoking problems; usually, in addition, they are men so young or so new to the crisis-ridden field that practice has committed them less deeply than most of their contemporaries to the world view and rules determined by the old paradigm. How are they able, what must they do, to convert the entire profession or the relevant professional subgroup to their way of seeing science and the world? What causes the group to abandon one tradition of normal science in favor of another? ………… “At the start a new candidate for paradigm may have few supporters, and on occasions the supporters’ motives may be suspect. Nevertheless, if they are competent, they will improve it, explore its possibilities, and show what it would be like to belong to the community guided by it. And as that goes on, if the paradigm is one destined to win its fight, the number and strength of the persuasive arguments in its favor will increase. More scientists will then be converted, and the exploration of the new paradigm will go on. Gradually the number of experiments, instruments, articles, and books based upon the new paradigm will multiply. Still more men, convinced of the new view’s fruitfulness, will adopt the new mode of practicing normal science, until at last only a few elderly hold-outs remain.” (The Structure of Scientific Revolutions - Thomas Kuhn) I think Kuhn’s work is relevant to our efforts. If the NIH really wanted significant results they would seek people like Trevor. We should understand that grants will be given out to people operating within the accepted paradigm (i.e., autoimmunity is misplaced-immunity which needs to be suppressed). People not operating within this paradigm are threatening and at best will be ignored. We must remember that they are not bad or evil. They merely see the world differently. They react to us much as we react to people that come around here talking about adrenal crisis. To paraphrase the Godfather: It’s not personal it’s just science. dougs |
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Foundation Staff. .
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LeAnne, Plans will continue to evolve, but the next steps for the Foundation will be: 1. Continue doing what we are doing: educating doctors and the public about the etiology of TH1 disease and the effective intervention of the MP. By doing that, more doctors will have the knowledge needed to tend to people and more patients will begin to recover. This means the Autoimmunity Foundation will need to continue to send Dr. Marshall, Meg and me to conferences and seminars. 2. Continue working with FDA on the application for designation of orphan product that is in the process of being reviewed. 3. Continue discussions with NIH/NHLBI. At this point we are working to get the information they distribute about sarcoidosis to be based on science (and reality). We also hope to develop a better understanding of all chronic Th1 disease and how Dr. Marshall's explanation of the CWD-bacterial etiology applies to them, and to let them see that our positions are scientifically based. What we need our members to do is: 1. Continue their recovery by persevering on the MP, or by supporting their family members and friends who are on the MP. It's a long-term treatment, but the commitment pays off. 2. Support the Autoimmunity Research Foundation with regular donations (at least annually). Here is the information on making donations to the foundation. Financial support is the perfect way for people who have benefitted from the MP to keep this benefit growing and to make it available for others. Everyone here is a volunteer, yet we run a quality organization that is doing what no one else can do. If you think this is a good work, please make a donation today.. this month.. but at least *this year*. We stretch dollars as far as we can, but they only stretch so far. There are lots of behind-the scenes costs, from travel expenses to send people to conferences, down to mundane things like printing, postage and shipping as we prepare materials for distribution before and after conferences. 3. Begin to develop a dialogue with your elected officials at the federal level in the U.S. Find out how who your representatives are and how to contact them by email. At this point, we suggest that any letters you write simply inform that you are interested in health care and chronic disease like chronic Lyme, Chronic Fatigue Syndrome, etc. Detailed letters can be sent later, when we have a specific need or appeal for action on their part. You may want to tell them what has helped you, but we are not undertaking any formal appeals for action YET. When we do that, we will want your letters to be sent to the Foundation so we can personally deliver them. 3. Keep up your positive expectations, which continue to be affirmed as more people are recovering using the MP. Please continue to post and share your success stories on MarshallProtocol.com and SarcInfo.com. 4. Don't lose patience as we all work toward our ultimate expectations. Things can improve slowly, whether it is our health or the world's understanding and treatment of disease. Every improvement is a victory. We will continue this discussion as time goes on, but these are the things on the top of my mind. Belinda Last edited on Tue Oct 11th, 2005 18:57 by Foundation Staff. |
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wrotek Member in Phase 3
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What about patients with Lyme who are told they have beeing cured with 3 weaks abx, who had honorable blood giver status and was "cured" by specialists, can he think that they can give blood still? I should ask this question one of my doctors who was telling me these are all mind symptoms and i am cured cause i got month lendacin theraphy. |
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jcwat101 Research Professional 
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I agree with all the previous reasons given for problems with the NIH. I would just add a little emphasis on how many protocols are out there that claim to cure things and may seem to help many people to some degree and even seem, on the surface, to cure a certain proportion of people. Although we know the MP is different, and the science is much better, for many people, it may just seem like one of so very many, new and old approaches. I am thinking of another protocol that I won’t name, with a very well-intentioned proponent, that has tried for decades to gain acceptance, and is one of these many out there. A few do, at least seem to be cured by it, and many seem to be helped. This protocol has gone a long ways in gaining attention, but spent years with the NIH, getting no where. Anyway, I just thought I needed to mention this, since I think we do perhaps need to emphasize even more in various ways how the MP is different from all the rest, and think more about how they view us as just another alternative therapy and how to counter that better. Part of that will just require, like Belinda said, time and perserverance and letters to the media and congress and articles and media reports, to let them see that this is growing and growing and gaining more and more support. It may need to grow to a certain point that they will take the time to realize that it really is different from all the other alternative (non immune suppressing) approaches. And of course, all the other things Belinda calls for are required. But being newer, the MP has a disadvantage compared to some other protocols in the numbers of people who know about it and have been cured, and the disadvantage of people having to feel worse initially, before getting better, and those that quit because of that. But I have no doubt truth will prevail, if we all keep at it. But I think it may help to try to see it the way they see it (of course, only as an exercise, to help hone our strategy). Joyce Waterhouse, Ph.D. |
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Foundation Staff .
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(filelink) Joyce, I understand that, to the untrained eye, many protocol claims seem similar. But the NIH is the premiere research organization in this country and the people we have been talking with are not just "many people". They are trained clinicians and/or scientists. It would take a very short time for a person knowledgeable in basic science to determine if a new pathogenesis has merit and deserves further exploration. Dr. Marshall has described, in exquisite detail, his pathogenesis and no one at the esteemed NIH deems it worthy of the briefest exploration. Dr. Zerhouni has said, You never know where the next scientific breakthrough will come from and when it does it's usually big." The fact is that the NIH is not organized to find cures for diseases. It does not coordinate the investigator-driven research grants in any way that could eventually lead to a cure such we have produced. The NIH is so lacking in organization and initiative, that when a cure for chronic disease was sitting in their conference room, they didn't even pay attention. Best, Meg |
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LeAnne Member in Phase 3
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Would it get their attention if ALL the MP doctors, including doctors from over seas, along with their patients, would band together and get on board winning over the NIH? Because the MP doctors are in the minority, they probably want to keep a low profile to avoid scrutiny and criticism. I know that it is still very early, and most patients are still in treatment; but if there are enouph MP doctors who have the evidence of cured patients, wouldn't this get their attention? How could we encourage our doctors to come out of the closet and band together on this. Is there anyway the Autoimmunity Research Foundation could organize something like this? LeAnne Last edited on Thu Oct 13th, 2005 17:56 by LeAnne |
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scooker48 Member in Phase 3
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I must comment that the United States of America has an international reputation for being highly DISORGANIZED. Its been said many times, by many others. Its a long shot, but could we look for recognition from Europe? Or if the language barrier is too much, how about Australia? Let us not be discouraged but instead take heart in our community and its gathered wisdom. Together we'll make it. Just for the heck of it, I wrote Harry Reid US. Senator from Nevada. What the hell. Sherry |
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jrfoutin Research Team
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What are the risks for doctors? My husband and I were puzzled and surprised by our Dr.'s reluctance and guessed at some reasons when we were having a difficult time convincing him to do this protocol with me. (Large clinic professional agreements, foreign national/citizenship, license revocation after investing a decade and family sacrifice to become a doctor, insurance/drug company connections, malpractice, other legal entanglements, etc.) Guessing is a lot of fun for party games, but this is life or death for me--and others like me. For doctors, their career is at stake. These are huge issues. Knowing what hurdles doctors must get through would help facilitate the problem-solving to get them to publicly second the opinion they are actually using to treat patients (or even themselves) with. I vaguely remembered comments from one Chicago presenter (UK Dr. A.W?, my memory for names was more fuzzy then) about peer problems his research had faced even when he had the cold hard evidence detailed. Not being a medical professional, I can only guess from looking in from the outside. However, it appears the industry seems to have foundations that don't appreciate tsunami and hurricane tidal wave changes. That said, discovering the barriers make them easier to break down. |
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Aussie Barb Research Team
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JRF some info Why won't my doctor consider the Marshall Protocol? Why is the Marshall Protocol not being discussed & used by doctors around the world? First report from ATS, San Diego Barb ... |
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LeAnne Member in Phase 3
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I think it is mainly peer pressure and criticism. Because other doctors are ignorant about the science of the MP, they heavily rely on standard treatments. Anything different than how it is "suppose to be done" is illogical to them. Some doctors get furious that patients would stop their way of treating them and try something that hasn't been acceptable to mainstream medicine. I wonder if there are any risks to them losing their license? Could this happen, if they were found to be treating patients differently than standard treatment? I thought I heard somewhere that in California it was against the law to treat cancer with alternatives other than Chemotherapy. LeAnne Last edited on Fri Oct 14th, 2005 02:18 by LeAnne |
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jrfoutin Research Team
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Thank you for the links, I hope we all take some time to read them again. You'll see my comments on at least one of the threads from a couple of months ago, but I will continue to re-read them. Re-reading helps, so please don't ignore links Aussie Barb wisely offers. I have noticed the descriptions of the problems from this board and the signals from the medical community spell impasse, often with deep emotional frustration on both sides. Somehow, a mediation must occur.
But, now we must ask, where are the weak chinks in the armor for all these situations? Where is our perception failing? Where do "our" and "their" assumptions fail or change? How do we, as a group, facilitate positive change events (in addition to facing our own daily Herx battles)? For example, my personal search for a curative solution included finding a doctor who was somewhat CAM friendly, therefore, he's experienced with calling the shots with pharmacies and going to battle with insurance companies for atypical prescriptions. He was also able to openly discuss and accept my non-CAM (but not yet mainstream) treatment requirements. One unique set of circumstances opened the door for me. What of this can be replicated for others? What can be scaled up for the big picture solutions? One of the first rules of group creative problem solving is to avoid negating offered solutions initially. Jumping into this as a 2nd string adopter, it may be I am too late for that early phase of discovery. However, I feel compelled, so please pardon my persistence. Last edited on Fri Oct 14th, 2005 04:14 by jrfoutin |
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Dr Trevor Marshall Research Team
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JR, We are still engaged with the new contacts we met at NIH, despite them clearly and openly wanting us to go away, and are chipping away hoping to find an issue on which we can start to work together to get things done. Which I guess is the same sort of thing as you are saying But on a more day-to-day basis.Belinda sent a letter this morning, with a number of specific errors in the NIH dogma about Sarcoidosis listed. Tomorrow I send a letter with the news clipping saying "arthritis cure" (or nearly) and try that line of reasoning with them. But in a very subtle way, of course. I would hate for this all to end in another NIH scandal like the ethics scandal, yet I see them continue to put their foot into open mouths. Hmm... ..Trevor.. ps: 65% of people in America think that there is a cure for cancer, and the Government is keeping it from them. Just a data point, thats all... or maybe a flash point... |
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