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Meg Mangin R.N.
Research Team
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Posted: Thu Sep 1st, 2005 00:15 |
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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)
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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.
Research Team
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Posted: Thu Sep 1st, 2005 03:26 |
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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 04:20 by P.Bear R.N.
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MCS, neuroborreliosis, fatigue, tinnitus, neck/facial/shoulder/lumbar pain, Bells palsy, Prostatitis, blurry vision, dizziness, 1,25D=48, MP2/05 MP3, cytomel, D25<5
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Nightshade
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Posted: Thu Sep 1st, 2005 05:37 |
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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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MP: Age 33 Borreliosis 83? dx 02, Brain fog, tiredness, depress, arthrit knees hands, Headaches. started Benicar 11.11.05 Mino 27.11.
25D=20; 1,25D=27 NOIRs avoid Light/VitD
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Dr Trevor Marshall
Research Team
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Posted: Thu Sep 1st, 2005 10:08 |
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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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Posted: Thu Sep 1st, 2005 12:41 |
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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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Sarcoidosis 125D44 25D28 Ph1Jul05 Ph2Sep05 Ph3May06 D25-8(Feb07) MP brk May08 NoIRs outside otherwise normal light exposure
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Dr Trevor Marshall
Research Team
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Posted: Thu Sep 1st, 2005 13:30 |
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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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Posted: Thu Sep 1st, 2005 16:23 |
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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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Lyme/CFS since 2001 or earlier. amitryptiline tramadol zopiclone; 1,25D = 38, 25D = 29. Sept 05: Avoid light&D/ Oct 05, Beni 40mg Q4H. Dec 05, Mino, 25mg qod.
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scooker48
Member in Phase 3
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Posted: Thu Sep 1st, 2005 18:00 |
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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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Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 04/07/08 D25 <7.0 L, Liver function normal 4/08; Wear NoIRs outside & for computer screen time. No K creme used.
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jrfoutin
Research Team
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Posted: Thu Sep 1st, 2005 19:11 |
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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 19:12 by jrfoutin
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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Dr Trevor Marshall
Research Team
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Posted: Thu Sep 1st, 2005 21:44 |
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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
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Posted: Thu Sep 1st, 2005 22:41 |
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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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CFS/FM/tachycardia/bladder and skin inflammation. C-Diff overgrowth 1995
clonazapan 1gm HS, Xanax .50mg HS, Premarin .625, Ultram 50mg BID Restart 9/15,NoIRs, No Vit D diet,Probiotics,11/12/04 25D=25, 1,25D=70, 9/9/05 25D 14, 1,25D 37. Beni Q6H, Mino 10
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shegeek
Member in Phase 3
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Posted: Fri Sep 2nd, 2005 00:58 |
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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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FMS,IBS,osteoarthritis,osteopenia, hypertension/ 1,25D/25D=45/44 (10/04), 44/13 (1/05), 36/8 (7/05)
25D<4 (6/06) 25-D=5 (4-08). Avoid light & D w/NoIRs 11/04 Benicar 40mg/q4h(since 1/27/05) Phase 3
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GeorgeinRollaMO
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Posted: Fri Sep 2nd, 2005 01:36 |
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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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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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Dr Trevor Marshall
Research Team
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Posted: Fri Sep 2nd, 2005 05:44 |
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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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Posted: Fri Sep 2nd, 2005 09:30 |
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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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FM,IBS,MVP,RLS,tachycardia,arrhythmia,unrelenting insomnia;Tick bite 05/96,Lyme+ 6/05;Phase 1 MP 6/30/05; Vit D 1,25:77; Benicar 20mg q8hr; mino 100mg q48h; quercetin q8hr; meds=benzos, dopamine, muscle relaxants, proton pump inhibitor, beta-blocker, and
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rainbowcatcher
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Posted: Fri Sep 2nd, 2005 10:29 |
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http://www.casw.org/
Hope this can be of some help. 
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74yr old(mom) HX:Sarc/lung'85 HTN Tinn skin eruptions.eye pressure systemic burning.Diverticulitis.02/05 25D=7 1,25D=28; 02/06 25D=7 125D=13/ Paracetamol/(Acicdof & cranberry 4/07)diazepam.NoIR & light 6/05|4-6hr Olmetec Aug05| Mino Sept05| 03/06
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rainbowcatcher
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Posted: Fri Sep 2nd, 2005 14:45 |
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Another possibility. . .
http://www.poptel.org.uk/panap/archives/journal.htm
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74yr old(mom) HX:Sarc/lung'85 HTN Tinn skin eruptions.eye pressure systemic burning.Diverticulitis.02/05 25D=7 1,25D=28; 02/06 25D=7 125D=13/ Paracetamol/(Acicdof & cranberry 4/07)diazepam.NoIR & light 6/05|4-6hr Olmetec Aug05| Mino Sept05| 03/06
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wrotek
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Posted: Fri Sep 2nd, 2005 18:48 |
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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 18:49 by wrotek
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Lyme reflux chronic pain fatigue depression 125D36 Ph1Sep05 Ph2Oct06 Ph3Apr07 homebound in low lux NoIRs 25D<7 Oct06
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wrotek
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Posted: Fri Sep 2nd, 2005 18:55 |
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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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Lyme reflux chronic pain fatigue depression 125D36 Ph1Sep05 Ph2Oct06 Ph3Apr07 homebound in low lux NoIRs 25D<7 Oct06
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GeorgeinRollaMO
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Posted: Fri Sep 2nd, 2005 23:05 |
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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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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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