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jcwat101
Research Professional
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Posted: Tue Feb 5th, 2008 14:52 |
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Rico,
Those are interesting links. Maybe some people will go to some of those discussions and post a link to Amy's articles on Vitamin D.
vitamin d -- Bacteriality.com
It answers a number of the issues people bring up in a way that those people will find easier to understand than Dr. Marshall's BioEssay.
Looking at the first one, they don't seem to realize that the FDA is who is pushing to allow more vitamin D and health claims that will encourage more vitamin D in the food. The worry about Big Pharma, but not the Big Supplement Industry.
Joyce Waterhouse
Last edited on Tue Feb 5th, 2008 14:55 by jcwat101
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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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shandym
Member
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Posted: Tue Feb 5th, 2008 15:41 |
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| Why would the FDA push more VIT D if they are well aware of Dr. Marshall's work with VITD and the MP?? Hasn't he been working with the FDA about this and has some of the meds aproved for the MP?? Last edited on Tue Feb 5th, 2008 15:41 by shandym
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FM like Pain, disequalibrium,vertigo, constant dizziness, palpitations, tachycardia, visual disturbances,headpressure/headpain 125D29, 25D7, MP 11/07, TUMS, Valium, NoIRs, limited outings covered up
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Dr Trevor Marshall
Research Team
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Posted: Tue Feb 5th, 2008 15:56 |
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Maybe because the FDA staff who are responsible for making decisions about supplements at FDA/CFSAN were educated before anybody thought to explain to them the importance of genes and VDR and that sort of stuff?
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edj2001
Advocate
| Joined: | Tue Oct 18th, 2005 |
| Location: | Allen, Texas USA |
| Posts: | 146 |
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Posted: Tue Feb 5th, 2008 23:35 |
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Dr Marshall,
You said: “It is not an evolutionary improvement in knowledge; it is truly a break away from commonly accepted pragma.”
Yes, IMHO, it can be called a paradigm shift, the transition from evidence based medicine (epidemiology studies) to science based (molecular models).
As you know, when a paradigm shift occurs the learning curve indexes back to the zero – zero origin of the curve.
The new generation of Molecular Biologists will need to step in to replace the clinical dogma of evidence based medicine.
Gene
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Sarc98 A.Fib uveitis sk cancer basal/melanoma colon tmr bladder tmr bph|digitex 0.125mg q24h propafenone 150mg q8h armour 60mg q24h proscar 5mg q24h Guaifensin 600mg qid Aspirin 81mg q12h |1,25D=50 (10/05), 25D=7 (4/08)| avd l&D
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Ruth Goold
Member in Phase 3
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Posted: Wed Feb 6th, 2008 02:43 |
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A revolution instead of evolution perhaps?
Shandy:
I don’t think it is just a problem with the FDA folks lacking an education in molecular biology.
Psychologists have long recognized that humans suffer ‘cognitive dissonance’ when presented with facts that do not agree with something they ‘know’ to be true. This site http://www.learningandteaching.info/learning/dissonance.htm defines it as follows:
“Cognitive dissonance is a psychological phenomenon which refers to the discomfort felt at a discrepancy between what you already know or believe, and new information or interpretation. It therefore occurs when there is a need to accommodate new ideas, and it may be necessary for it to develop so that we become "open" to them.”
They also point out “if learning something has been difficult, uncomfortable, or even humiliating enough, people are less likely to concede that the content of what has been learned is useless, pointless or valueless. To do so would be to admit that one has been "had", or "conned".
An example of this occurred when Thomas Watson (a medical professor) originally suggested that doctors themselves were causing the spread of fatal fevers among women during childbirth by failing to wash their hands between patients. In 1842 there was no understanding of bacteria and viruses, and therefore no good explanation of how this would happen. Doctors did not rush to congratulate Watson for his new idea that would help them save lives. They generally refused to believe him, refused to wash their hands and probably desperately hoped Watson would be proved wrong (oh, and killed quite a few more women…). One prominent obstetrician stated "Doctors are gentlemen, and gentlemen's hands are clean.”
It is very hard for people who believe themselves to be good people (and that includes just about everybody) to accept that they have harmed others, even unintentionally, through their actions.
This is one reason why the BioEssays publication is an important one – people can now try as hard as they like to disprove the science behind the MP. If they fail to do so, they will actually substantiate the MP and the revolution will begin. You can bet the FDA won’t take too long to jump on board then….
Ruth
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03/02/07 Ph 1 MP; 2001: Pulmonary sarc; 01/04/07: 125 D=110pmol/L(45.8 pg/ml)| 25D=20.8 ng/ml: 04/07 19.2: 07/07 11?: 09/07 16.5: 11/07 <10.0: 01/08 <10.0: 05/08 10 ng/ml. Ca. Elocom (ears). diphenhydramine 25 mg. Adidas EE glasses outside. NoIRs
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jillian
Member in Phase 2
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Posted: Wed Feb 6th, 2008 07:40 |
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Trevor,
Does it make any sense to start sending this paper to our congressmen and other 'powers that be' to be sure they're aware of the issue?
Jillian
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PrimryDX-PulmoSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-. Noirs & total light control in house.
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Dr Trevor Marshall
Research Team
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Posted: Wed Feb 6th, 2008 13:59 |
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Jillian,
Yes, it makes a lot of sense to send it to anybody who might be involved in Public Health. The voices who are pushing this country towards the abyss are overwhelming, and we need to let folk know that Vitamin D is turning out to be like smoking all over again, except that, IMO, it will do much more damage to the health and psyche of this nation than that mistake ever did...
The supporters of Vitamin D do not understand the science, and they do not want to understand. They want to believe the epidemiological studies which only looked as a small part of the puzzle, and only found a small treatment effect. High doses (2000 IU+) make them feel so good that they believe, without question, Vit D must be a magic bullet. The inertia behind Vit D supplementation is based on hope and belief, not on science.
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jillian
Member in Phase 2
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Posted: Wed Feb 6th, 2008 14:31 |
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Thank you Trevor, that answer sounds like a good starting point for my letters... Would it be okay to quote that reasoning, and the Feb. 5th post in total 'Simple Explanation of Vitamin D Metabolism' here:
http://www.marshallprotocol.com/forum2/364.html
'cuz I think that may help summarize for people new to the concept what the paper is about? If yes to the Simple Explanation, would it be appropriate to put you as the author?
Jillian
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PrimryDX-PulmoSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-. Noirs & total light control in house.
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Frans
Member in Phase 2
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Posted: Wed Feb 6th, 2008 16:41 |
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I tried to contact Reuters, see what happens.
I also contacted our Dutch National association of scientific writers/journalists, do you guys have something similar? A freelancer might be interested/tempted to write about this.
Sincerely, Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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scooker48
Member in Phase 3
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Posted: Wed Feb 6th, 2008 17:18 |
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I spoke with my local Congresswoman's office, and will send them copies of many letters I've already sent to the NIH, FDA.
She asked me to repeat what we want, and I will say something like "read these mainstream articles on the dangers of Vitamin D supplementation" and "authorize Benicar for treatment of Sarcoidosis".
RIP Morris, Gary and Alan.
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: Wed Feb 6th, 2008 17:31 |
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Sherry,
Focus on asking just for FDA/Office of Orphan Products Development (contact OOPD Director Timothy R. Coté DHHS/FDA/OC/OSHC/OOPD via Congressional Affairs Specialist Jeremiah J. Kelly DHHS/FDA/OC/OL) to explain precisely why they have delayed the application from the Autoimmunity Research Foundation for Designation of Olmesartan in the Treatment of Sarcoidosis for 28 months, without supplying a single substantive safety or efficacy objection. Our OOPD designation request number is 05-2131
Everyone all up the FDA chain, to Commissioner von Eschenbach himself, is aware of this problem, but nobody has the guts to face down the pulmonologists, who are desperate to keep slowing down the pace of change.
The Vitamin D issue will disappear once Docs start feeling comfortable with the MP.
..Trevor..
Last edited on Wed Feb 6th, 2008 17:51 by Dr Trevor Marshall
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3381 |
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Posted: Wed Feb 6th, 2008 20:28 |
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I was trying to find a good place to post this and I thought this was the best place. 
Oprah aired a show yesterday with Dr Oz and they are recommending Vit D to her and her staff because of "deficiency." Apparently, Oprah and her staff were tested, according to someone that watched the show (I missed it) and 60% of her staff along with Oprah tested "deficient" and were told to take Vit D.
When I pulled up a link for the show, I got a pic of a bottle of Vit D, HERE
You can contact Dr Oz for comments. I just did... HERE
I think if enough of us send in comments, we may get heard and maybe even aired on a show. I think it's worth a try and we have strength in numbers.
PS Oprah had Bernie Mac on the show awhile back for an interview after a severe and frightening episode and diagnosis of sarcoidosis.
Celebrities suffering from Sarcoidosis
BTW, on Oprah's show today, she said she reads the message boards daily!
Last edited on Wed Feb 6th, 2008 22:09 by Reenie
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Aunt Diana
Advocate
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Posted: Thu Feb 7th, 2008 03:53 |
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I just sent my "two cents worth" into the Oprah/ Dr. Oz message board. Thank you Reenie, for the links. I think you're right.....I've given up on the government or any of its agencies.....I believe the press is where to go for attention.....we just have to get their attention.
Maybe by playing the underdog in the battle and pointing that there's no "money to be made" on our side of battle could raise the ire.
It's so frustrating watching history in the making being so ignored when access to information is supposed to be so FREE.
Onward Marshall soldiers!!!
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Jeannine R.N.
Board Staff
| Joined: | Sun Aug 28th, 2005 |
| Location: | Louisiana USA |
| Posts: | 714 |
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Posted: Thu Feb 7th, 2008 08:26 |
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There has to be something we can organize as group to get the attention and answers from the FDA.
JeannineLast edited on Thu Feb 7th, 2008 09:34 by Jeannine R.N.
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 520 |
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Posted: Thu Feb 7th, 2008 13:15 |
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When the paper was published, I sent a show idea to Oprah quoting an easy to understand piece from TM's paper and gave his contact information. Obviously, they ignored that and went ahead with the D deficiency piece. I will contact them again and tell them that they are missing out on the greatest discovery of our age. Claire
Here's the link to offering show ideas: http://www.oprah.com/email/reach/email_showideas.jhtml
I think it might be helpful to say that this is such an exciting, breaking medical story that it could easily take up an whole hour with TM, a moderator, and some people who have gotten well and understand the process. Also, no doubt TM could show how the model can possibly explain much of the correlative studies that leave researchers either scratching their heads or make tenuous correlations or have reporters making tenuous correlations (that then everyone tends to believe).
Last edited on Thu Feb 7th, 2008 14:42 by eClaire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3381 |
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Posted: Thu Feb 7th, 2008 21:15 |
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eClaire,
Maybe we have to send them some video links so they can see Trevor in action! Like maybe when Trevor is talking to the FDA. I believe there are some links on YouTube.com?
He's very charismatic, IMO, and I think folks would really enjoy his Aussie accent. Heck, if it works, let's use it to pique some interest in a show!
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scooker48
Member in Phase 3
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Posted: Thu Feb 7th, 2008 21:47 |
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I have sent a letter to my local Congresswoman.
Soldiering on...
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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ShrnHml
Guest
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Posted: Fri Feb 8th, 2008 01:47 |
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I, too, have sent my own thoughts to the Oprah/Oz show.
Two years ago I sent a letter to Laura Hillenbrand of Sea Biscuit fame via her publisher. No reply was expected or received, but I wanted her to at least know of the MP.
I have a fantasy about her currently being on the Protocol but having to maintain anonimity. If a famous person got well, we'd have the kind of publicity that everyone loves.
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3381 |
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Posted: Fri Feb 8th, 2008 17:45 |
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Hi Sharon,
Would you be so kind as to post Laura Hillenbrandt's contact info? She is another very sick ME/CFS person that could use the MP so badly for herself.
For those not knowing who Laura is, she wrote the novel Seabiscuit almost exclusively from her bed and flat on her back. This lady was barely able to make it to the premier showing once it was made into a movie.
There are many other celebrity folks that have these illnesses, much like our own family and friends. Montel Williams often discusses MS and I believe he has a foundation set up for it. Cher had done and article in a magazine years ago how she also had CFS.
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ShrnHml
Guest
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Posted: Fri Feb 8th, 2008 21:23 |
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Reenie.............I don't seem to have a copy of the letter, but I know I found that the book was published by Random House and addressed the letter to:
- Laura Hillenbrand
- c/o Random House, Inc
- 1745 Broadway
- New York, NY 10019
The phone number for Random House is 212-782-9000, and maybe it would be a good idea to call for specific information before trying to contact her again. Have at it one and all. ............Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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