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dougs
Member in Phase 3
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Posted: Tue Oct 11th, 2005 14:24 |
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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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CFS 7yr,bruxism/tmj,sleep apnea,hypo thyroid/adr; no meds;mm/yy(25d/1,25d)7/04(-/42),12/04(10/45),11/05(11/25); P1 8/16/04;P2 12/1/04;P3 11/14/05
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Belinda
Research Team
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Posted: Tue Oct 11th, 2005 14:39 |
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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.
BelindaLast edited on Tue Oct 11th, 2005 14:57 by Belinda
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wrotek
Member in Phase 3
| Joined: | Fri Dec 31st, 2004 |
| Location: | Wroclaw, Poland |
| Posts: | 1129 |
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Posted: Tue Oct 11th, 2005 17:30 |
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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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Lyme reflux chronic pain fatigue depression 125D36 Ph1Sep05 Ph2Oct06 Ph3Apr07 homebound in low lux NoIRs 25D<7 Oct06
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jcwat101
Research Professional
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Posted: Wed Oct 12th, 2005 11:51 |
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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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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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Meg Mangin R.N.
Research Team
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Posted: Thu Oct 13th, 2005 00:56 |
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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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Posted: Thu Oct 13th, 2005 13:52 |
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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 13:56 by LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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scooker48
Member in Phase 3
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Posted: Thu Oct 13th, 2005 15:07 |
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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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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
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3872 |
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Posted: Thu Oct 13th, 2005 22:01 |
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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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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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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19372 |
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Posted: Thu Oct 13th, 2005 22:09 |
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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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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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LeAnne
Member in Phase 3
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Posted: Thu Oct 13th, 2005 22:15 |
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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 Thu Oct 13th, 2005 22:18 by LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3872 |
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Posted: Thu Oct 13th, 2005 23:58 |
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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.
- Doctors and health care are industries are those who have always been on top of medical business food chains.
- Patients have always entrusted their lives to their doctors, some doctors are nearly deified.
- Politicians are swayed by large lobby groups and cater to the influential and big business leaders.
- Funding entities (government and non-government) favor large brick and mortar educational institutions (teacher and student researchers), even if existing grant and old-boy salesman process is onerous and hated by those who are part of the established system.
- Venture Capitalist funds come with a short performance rope to hang research that requires longer than 3-5 years to produce a marketable product.
- Even medical writers must be cautiously aware of the advertising that appears along side their articles in medical trade rags.
This set of details doesn't seem to belong exclusively to the US, either.
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 00:14 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: Fri Oct 14th, 2005 00:23 |
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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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