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Dr Trevor Marshall
Research Team
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Posted: Sat Jun 11th, 2005 11:18 |
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Just after 4pm yesterday, Friday, the NIH sent out notices about an event just next Tuesday, an opportunity for the public to tell the NIH how well we think it is doing its job, and how it could improve in the future.
There is both a physical meeting in the Washington Beltway area, and a webcast. Some questions will be taken from the audience, some will be taken by email.
Any of you in the beltway area who can attend the meeting should plan to do so, or 'volunteer' one of your family members to attend so that they can let Dr Zerhouni know where NIH is letting our community down.
We are still waiting for a response, any response, to the hundreds of letters that you all wrote to Dr Zerhouni, Dr Kiley and Dr Reynolds several weeks ago.
Here is a link to that thread, FYI, http://tinyurl.com/7qj88
This weekend both Meg and belinda are at a conference in Denver, where they will get the chance to talk with Drs Kiley and Reynolds, and we will post more info as the weekend goes by.
Later this morning I will post my thoughts, and a list of questions that come to my mind. We should use this thread to try and coordinate our thoughts about how to get best results from this opportunity to make our needs known at the highest levels of the NIH.
Sincerely
Trevor
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From: "NIH Office of Communications and Public Liaison"
Subject: June 14 Webcast and Public Input Opportunity - Please Register
Date: Fri, 10 Jun 2005 16:12:10 -0400
Dear Colleague,
The Kaiser Family Foundation will host National Institutes of Health Director Dr. Elias A. Zerhouni for a "Kaiser Conversations on Health" event, which will feature an interview and live webcast on Tuesday, June 14 from noon to 1 p.m. EDT. Questions will be taken from the audience and via email from webcast viewers.
The interview will touch on key issues in national medical research and policy, including research funding, new NIH conflict-of-interest and ethics rules, the fight against HIV/AIDS, racial and ethnic disparities in health, ensuring public access to published NIH-supported research, and the state of NIH-funded stem-cell research.
As NIH director, Dr. Zerhouni oversees the federal medical and health research efforts of the agency's 27 institutes and centers, with more than 17,000 employees and a $28.6 billion budget. During his tenure, he has implemented an agency-wide research roadmap aimed at speeding the discovery and clinical application of new prevention strategies, diagnostics and treatments.
Prior to becoming NIH director in May 2002, Dr. Zerhouni served as executive vice-dean of Johns Hopkins University School of Medicine. Born in Algeria, Dr. Zerhouni came to the United States in 1975 after earning his medical degree at the University of Algiers School of Medicine. After completing his residency in diagnostic radiology at Johns Hopkins in 1978 as chief resident, he served as assistant professor in 1979 and associate professor in 1985. Between 1981 and 1985, he was in the department of radiology at Eastern Virginia Medical School and its affiliated DePaul Hospital. In 1988, Dr. Zerhouni returned to Johns Hopkins where he was appointed director of the MRI division and in 1996 became chairman of the radiology department.
The event will take place in the Foundation's Barbara Jordan Conference Center and will be open to the public. A live webcast of the event also will be available online starting at noon EDT. An archived version of the webcast will be available later that day at the same web address. E-mail questions may be submitted in advance of or during the live webcast to conversations@kff.org.
Previous guests on "Kaiser Conversations on Health," a series of live interviews with leading newsmakers discussing major health issues, have included Irish rock star Bono; Mark B. McClellan, administrator of the Centers for Medicare & Medicaid Services; and Gov. Mark Warner of Virginia, who this year chairs the and National Governors Association.
WHAT:
Dr. Zerhouni talks with Kaiser Family Foundation Vice President Jackie Judd, former correspondent with ABC News, and a live audience about the state of medical research, recent reforms at the National Institutes of Health and other medical policy issues. Dr. Zerhouni will take questions from the audience and live webcast viewers.
WHEN:
Tuesday, June 14, 2005, from noon to 1 p.m., EDT. (Audience registration begins at 11:30 a.m., with lunch to follow the event)
WHERE:
Barbara Jordan Conference Center (Kaiser Family Foundation Office)
1330 G Street, NW, Washington, DC (one block west of Metro Center)
RSVP:
This event is open to the public; however, space is limited and registration is required. If you wish to attend, please RSVP to Tiffany Ford at 202-347-5270.
QUESTIONS:
Email your questions for Dr. Elias A. Zerhouni to conversations@kff.org
Last edited on Tue Jun 14th, 2005 16:34 by Dr Trevor Marshall
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Dr Trevor Marshall
Research Team
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Posted: Sat Jun 11th, 2005 11:21 |
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**EMAILED QUESTIONS HAVE TO BE SENT IN ADVANCE OF THE WEBCAST. IF YOU WAIT UNTIL THE WEBCAST TO SEND YOUR EMAIL QUESTION IT WILL NOT BE CONSIDERED. Please send your emails Monday or Tuesday morning** (added 10:30am 13 June)
Thought #1: Please don't ask for 'more studies.' I want to focus on our understanding of the bacterial pathogenesis needing to be expanded. These Th1 diseases are clearly caused by antibiotic-resistant bacteria. IMO there is no need for additional double-blind studies, just for additional brainpower to be applied to what we already know...
---- More thoughts will be coming ------
HOW TO ACCESS THE WEBCAST added: 10am 13 Jun05
You will need Windows Media Player.
There is an archived version of a previous conference with Tommy Thompson at URL
http://tinyurl.com/7qpxa
which you can use to test out your WM player and make sure everything is ready for the webcast. Click on the link marked "video" on the line saying "View Webcast". The actual webcast with Dr Zerhouni will start around 11:45am EST tomorrow, and will be linked from URL
http://tinyurl.com/duugv
** For some reason my FireFox browser has trouble displaying the Page about Dr Zerhouni, and crashes. I needed to use Internet Explorer to view it. I am working on figuring out what is happening
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more comingLast edited on Tue Jun 14th, 2005 03:40 by Dr Trevor Marshall
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scooker48
Member in Phase 3
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Posted: Sat Jun 11th, 2005 13:12 |
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Lyme Disease
A total of 21,273 cases of Lyme disease were reported in 2003, approximately 10% fewer cases than were reported in 2002. As in previous years, >90% of cases were reported from the northeastern and north-central United States. The number of Lyme disease cases reported for Pennsylvania in 2003 included 4,722 confirmed cases and 1,008 suspected cases. In contrast, the number of suspected Lyme disease cases reported annually for Pennsylvania during 2000--2002 ranged from two to 11 cases. The increase in the number of suspected cases is attributable to changes in reporting practices.
Dr. Marshall: the above comes from the CDC at
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5254a1.htm
and if we can see the disease is growing tremendously as per the Minnesota bar chart (which maybe we could come up with a rate of reporting growth)
we could "puff up" some numbers. Just a thought.
Sherry Cook
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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 3/07; Wear NoIRs outside & for computer screen time. No K creme used.
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Dr Trevor Marshall
Research Team
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Posted: Sat Jun 11th, 2005 13:42 |
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Sherry,
I have given a lot of thought to the way info about Lyme is being suppressed by the CDC. I don't think raw numbers are the issue. I think Lyme needs identifiable faces, like Sarcoidosis is getting right now. Yes, I know about Amy Tan, but there need to be more, and more recognizably disabled.
Personally, I think that the problem is with the way Lyme activists are so fragmented. TPTB promote this fragmentation, IMO. Surely one or two sad and sorry cases ought to be enough to draw public attention to the disease. However, the moment you bring these cases out the CDC says that Chronic Lyme doesn't exist, and that these folk don't have Lyme disease at all.
The other bigger problem is that Lymies have been distracted so as to allow the profession to paint the disease as only communicated by tickbite. IMO this is scientifically ludicrous. But the real damage is that it makes the general population feel secure from the disease, because "we never go near deer". The zoonotic nature off all these diseases, and their communicability, are things that the community has to start focusing on, IMO.
..Trevor..Last edited on Sat Jun 11th, 2005 13:53 by Dr Trevor Marshall
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scooker48
Member in Phase 3
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Posted: Sat Jun 11th, 2005 13:54 |
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Dr. Marshall,
If we need a human interest story, maybe this one could work.
I am mad as hell. I worked 20 years for the U.S. Coast Guard Reserve, doing "Search and Rescue" work on small boats in San Francisco. On the weeends for 20 years. It was a sacrafice for my country.
Now the NIH is trying to KILL me by ignoring the important scientific research on sarcoidosis. They don't want to pay me my Coast Guard Retirement money of $279 per month when I turn 60. Additonally, I suspect they are trying to CHEAT me out of my social security payment because if I die, they don't have to pay.
Multipy my case times all the people in this country with either Sarcoidosis, Lyme disease, CFS, or any other Th1 disease. It amounts to a HUGE amount of money.
This reasoning might sound somewhat strange, but I KNOW government decisions come down to dollars.
Sherry Cook
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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 3/07; Wear NoIRs outside & for computer screen time. No K creme used.
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Dr Trevor Marshall
Research Team
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Posted: Sat Jun 11th, 2005 14:17 |
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Sherry,
What are you trying to drag me into? (LOL)
Garth Nicholson was made a pariah when he tried to help the Gulf War Veterans (a very smilar politics to the one you describe) 
You are correct about money being King, but I think that there is more decoupling between the concepts of paying pensions and the NIH than you might imagine. A far more insidious problem is the focus of the NIH on maintaining TPTB in the Health Services (and pharmaceutical) industries. There is lip-service paid to becoming more patient-centric, but I see little evidence of change 'in the trenches.'
..trevor..Last edited on Sat Jun 11th, 2005 14:23 by Dr Trevor Marshall
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parisii
inactive member
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Posted: Sat Jun 11th, 2005 14:34 |
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"puff up some numbers" eh?
Careful here: as a former World Trade Center CEO of a consulting firm, I'd prefer we use another verb!!
Mary A. M. Puff
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MS dx 95: Recovered Paralysis FM tachycardia eczema depression-upon amalgam removal+ 2yr chelation. LABs 3/05: 1,25=10.8 and 25D=12.7
B com 3/25 Q6/Mino 4/15 100 Quer. "Mod" P2 7/14-9/20 LABs 7/05: 16, 19 P2 9/21: B Q6, M100 Q48, Ph2 til 11/31
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wrotek
Member in Phase 3
| Joined: | Fri Dec 31st, 2004 |
| Location: | Wroclaw, Poland |
| Posts: | 1122 |
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Online
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Posted: Sat Jun 11th, 2005 14:43 |
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It is good that MP site can bring together Th1 sufferers. If NIH will accept this science ,all Europe will DO. Cause USA medical health service is a big figure in the World ,and there is nothink in Europe beeing done without previously beeing done in USA in medical profession
No one wants to sticks their neck out ,but everybody are first to earn laurels.
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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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scooker48
Member in Phase 3
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Posted: Sat Jun 11th, 2005 15:04 |
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Politics is about a person's "sense of community". I learned that in the last election, but that is only my opinion.
According to "Change Theory", the first step in Organization Change is "unfreezing". This occurs when those involved, either SARC or LYME or CFS sufferers, develop a belief than a CHANGE IS NEEDED. The NIH program must somehow fund a program to incorporate the NEW SCIENCE; otherwise we are unable to grow. Scientists and physicians that receive any NIH money must learn about the new research.
Again, I suggest gathering statistics on all Lyme / CFS / SARC patients and then put a public face on it and say "WE NEED CHANGE". Just my two cents worth.
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 3/07; Wear NoIRs outside & for computer screen time. No K creme used.
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Dr Trevor Marshall
Research Team
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Posted: Sat Jun 11th, 2005 15:45 |
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Er, Sherry, isn't that what the Lyme, CFS and Sarc communities have been doing for the last decade? Putting a number on it, and then fighting with CDC/NIH over the number rather than the important issues?
You see, Physicians are TODAY told that Sarcoidosis is not a serious disease, that it goes away (on its own) in 60% of cases. So the suffering must necessarily be a small portion of 'the number'  CFS is "all in your head" and Chronic Lyme just doesn't exist. While they fought TPTB over these issues they have gotten nowhere.
We have to change the paradigm, IMO. That is what I have done before, and will do again. Change the rules of the game...
..Trevor..
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scooker48
Member in Phase 3
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Posted: Sat Jun 11th, 2005 16:17 |
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Dr. Marshall,
This is very impressive, and YOU are very impressive. Yes, make no doubt about it, technology can produce change. Just look back at the last 5 years.
Another aspect of change in relationships, be they inter-personal or to an institution, is respect. The people on the "the other side" must be shown high respect as we work together. I know you know this; its merely my observation. Its what produced so much "change" in me. As I understood my own pain, i.e., disease, and was treated with respect, I changed.
With high regard, Sherry
____________________
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 3/07; Wear NoIRs outside & for computer screen time. No K creme used.
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Dr Trevor Marshall
Research Team
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Posted: Sat Jun 11th, 2005 16:28 |
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Sherry
A good point. Respect must be shown, but, IMO, based on actions and deeds.
We have taken a very aggressive stance to NHLBI, but it is a supportable stance, fully supported in the light of their actions (and inactions). Before deciding on that stance we spent over a year getting to know all the personalities involved in the NHLBI decision-making process.
I have seen sarcoidosis patient groups who dote on every word of 'annointed sarc gurus' who don't understand the disease, and who have never cured a patient in their life. This is respect taken to the other extreme, IMO, and is to be avoided just as diligently as respect not paid when it is due.
..Trevor..
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scooker48
Member in Phase 3
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Posted: Sat Jun 11th, 2005 16:38 |
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Dr. Marshall,
Yes, we must separate the "noise from the signal" and the "wheat from the chaff." What will ultimately elimate the "sarc guru's" who have never cured ANYONE is statistics, which the mp.com is compiling.
Correct me if I'm wrtong, but wasn't penicillin accepted without a "random double blind" control group? Simply because EVERYONE who received penicillin got better?
Could the mp.com community make such a claim?
Another problem, from a scientific point of view, is that the Herx is subjective. I can tell people about my heavy, lead-like muscel feeling, but it can't be measured. If the Herx could be measured it would help, IMO.
Sherry
____________________
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 3/07; Wear NoIRs outside & for computer screen time. No K creme used.
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Dr Trevor Marshall
Research Team
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Posted: Sat Jun 11th, 2005 17:01 |
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Sherry,
That is a question you might like to ask Dr Zerhouni. Along the lines of:
"Is today's NIH really structured to recognize 'cure?' The public immediately accepted Penicillin without lengthy double blind trials, because it worked. If Penicillin was discovered today, how long do you think it would take the current NIH organization to recognize it as a cure for disease? Just getting the research grant money to test it would take a couple of years, wouldn't it?"
There are objective indicators of herx, quite a few actually. Cytokine and hormonal levels, indicators such as sIL2R, quite apart from PET scanning (SPECT). The problem is that the will to look for cures is not there, and 3 decades of failure (since the polio vaccine) have jaded younger researchers into believing that 'cure' is just not possible any more. That mentality is one of the biggest problems at NIH/NHLBI. Sarc patients who are "recalcitrant to therapy" are triaged and left to die.
Nobody is asking whether the therapies have ever been properly tested for efficacy, or whether such disparaging terms as "recalcitrant" should be used to describe what could in fact be 'therapeutic failure'...
..trevor..
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scooker48
Member in Phase 3
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Posted: Sat Jun 11th, 2005 19:26 |
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Dr. Marshall,
Yes, I will use the logic of asking Dr. Zerhouni if today's NIH is really structured to look for a 'cure' for my disease. And the historical facts about penicillin, as analogy. I am also beginning to suspect that the NIH is very biased towards "big pharma" and not to an understaning of this terrible disease.
We obviously need a gifted journalist. I am being positive that someone will pick up this story.
Would you know the names of the tests which are objective indicators of herx, such as cytokine and hormonal levels, such as sIL2R? And does a PET scan (SPECT) also measure herx?
Thank you!
____________________
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 3/07; Wear NoIRs outside & for computer screen time. No K creme used.
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cloudysunnee
Member
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Posted: Sat Jun 11th, 2005 21:18 |
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I want to know why my doctor and the world in general doesn't know more about this disease in the first place. Now with Reggie White having possibly died from complications and Bernie Mac having the disease I thought it would be more in the forefront of news. I think that since media personnel are unknowledgeable about sarcoidosis that they, therefore, don't pay it much heed.
I want to know what the NIH will do for me, a taxpaying citizen, to help me be cured from this disease that has caused my 44 year old self to have congestive heart failure that could possibly kill me before I'm 55?
I want to know why are they so leary to accept your research and to allow you a grant for further research when the drugs that are used are pharmaceutical? Afterall, they wouldn't be stepping on the Pharmaceutical industrie's multi-billion dollar toes. It makes me ill that a doctor like you won't be recognized because you aren't on the payroll of big business. Perhaps it's the insurance companies the NIH is concerned about. They might be made to pay for the lengthy treatments necessary for complete remission if your research was proven and acknowledged to their standards.
My brain is tired from all of this, what will they do for me about that???!!!
____________________
dx: 9/04 sarcoidosis, lung and heart; congestive heart failure; presently take several medications for conditions which may or may not be related to sarc?; researching MP; trying to find WI doctor;
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Dr Trevor Marshall
Research Team
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Posted: Sat Jun 11th, 2005 21:40 |
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Sherry,
The SPECT scan (computer-enhanced PET) measures metabolism of radio-labelled glucose, and could be used (experimentally) to study a patient undergoing herx. This would be expensive. The chemical markers, sIL2R and 1,25-D are also useful. There is a paper on sIL2R in Sarcoidosis.
I am sure that Journalists will be covering Tuesday's meeting, and a question like you have formulated might well catch their imagination (and their comprehension).
CloudySunnee,
The official autopsy result confirmed that Reggie died from Cardiac manifestations of Sarcoidosis.
Since the NIH were made responsible by the 'Rare Diseases Act of 2002' for communicating to the public and your doctor all about this disease, Dr Zerhouni is certainly on the hotseat to answer your question.
My perspective is that the NIH has chosen to allow the pulmonologists in NHLBI to control research about Sarcoidosis, allowing them to focus purely on pulmonary manifestations, and essentially ignore the systemic manifestations. Unfortunately (in turn) the NHLBI has found it easier to allow the WASOG 'clique' to decide what the public needs to know about this disease, rather than to open it for public discussion and consensus in the way that other idiopathic diseases have been studied within the NIH. That is why Dr Judson and Dr Baughman (and several other WASOG pulmonologists) are, essentially, the primary authors of the NIH's "Facts About Sarcoidosis" booklet. Nevertheless, Dr Zerhouni's office remains responsible to Congress for what is said, and not said, in that booklet...
..Trevor..
ps: You can find out more about these issues by reading the document I presented to Dr Zerhouni 6 weeks ago at URL
http://AutoimmunityResearch.org/copr.pdf
and the MP3 audio of my oral presentation is online at URL
http://AutoimmunityResearch.org/copr.mp3
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Dr Trevor Marshall
Research Team
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Posted: Sun Jun 12th, 2005 00:15 |
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Sherry,
Let me give you my perspective on your observation that NIH is biased toward 'big PhRMA'
I don't think there is any conscious bias. Bias exists because the public has allowed our entire system of medicine to become beholden to the study techniques demanded by PhRMA and to the products they develop, patent, and sell. It is as much the public's fault as the NIH's that we are so trapped into this money-driven research ethos.
Certainly, if the public were to become disillusioned with PhRMA then our whole economy would be at risk, as PhRMA is a significant portion of the GNP. I am sure that this, also, tends to (unconsciously) dull the desire for change.
Dr Zerhouni is in an unusual position. He is a direct appointee of President Bush, and therefore has to also subconsciously keep his eye on the politics of the electorate. Yet even though he is seen to be "the boss," his office has very little money of its own, and has to beg and cajole the NIH Institutes (of which NHLBI is the second largest, with a 2.3 billion budget) if he wants to get anything done.
The Office of the Director only has millions to play with, not billions, and the Institutes (like NHLBI) are funded seperately. Dr Zerhouni has no direct control over the purse strings. I am of the opinion that Dr Zerhouni is a good man, highly ethical and well intentioned. However, IMO, he has to work out more effective ways of exerting influence over the way NIH spends its money.
And yes, it is a strange way to spend 28 billion of public money every year...
..Trevor..
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Lee
Member in Phase 3
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Posted: Sun Jun 12th, 2005 11:50 |
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| I would like to ask about "WHY" sarc is still considered to be a "RARE" disease? Is this because it is hard to diagnose? Or maybe rarely diagnosed? The numerous docs I saw with my multiple and serious symptoms where very hesitant to put a "name" on my illness. Meanwhile I have done some local research and have found in MY county pop 32,000 we have FOUR confirmed diagnosed cases ... all female too. Two teachers .... one nurse and one vet. assistant. I would like to thank my vet for wondering WHY both his daughter and I who live just blocks away whould have this "rare disease"!! Then his daughter added .... there is a nurse and teacher in town with sarc too Dad!!! This is TOO weird .... and you BET I will be one of those to email Tues!!! Thanks Trevor!!!
____________________
2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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Dr Trevor Marshall
Research Team
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Posted: Sun Jun 12th, 2005 12:35 |
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Well, let's see.. 4 in 32,000
The accepted incidence of sarcoidosis is about 18 in 100,000 which is pretty close to 4 in 32,000
A 'Rare Disease' is considered one from which less than 200,000 Americans suffer
..Trevor..
ps: maybe the reason that your Docs were reluctant to put the label 'sarcoidosis' on your illness is because then they might have to refer you to the sarc specialists 'clique', not the easiest group of people to work with.
Last edited on Sun Jun 12th, 2005 12:39 by Dr Trevor Marshall
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