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Dr Trevor Marshall
Research Team
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Posted: Sun Sep 18th, 2005 19:25 |
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Sherry,
Why not just ask Dr Zerhouni to do that? It is likely that he hasn't even though of doing it... It is likely that his minions have been advising him very badly indeed. The corollary is that he is a heartless politician, and I still find that unlikely. So, I suspect he now knows that something is wrong, and he will certainly know it after the event next week.
I intend to suggest that his office convenes a Consensus Conference to give a proper airing to the new data. I will be doing that during the visit to Bethesda 
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Debbie-O
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| Joined: | Wed Sep 7th, 2005 |
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| Posts: | 18 |
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Posted: Mon Sep 19th, 2005 07:53 |
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Dr. M:
If you have time, could you please elaborate on why the conventional "double-blind" studies would not work for testing MP? All participants in double-blind studies wonder if they have the placebo, but that's the nature of the study, isn't it? Do you believe it would not work because it is unacceptable to subject participants to falsely hoping they will improve, or because there is some drawback in the type of study?
What other type of studies are there in the science world that would be satisfactory?
This stuff is so darn fascinating. Some of it is so logical, it's almost inconceivable to me that there are not a lot of doctors or science-folk jumping on this.
Oh! how I wish I had gone into medical research! I enjoy knowing the science behind all of it.
Thank you for all your efforts,
Debbie-O
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Suspect Sarc-dr appt soon/Psoriasis=40yrs/Endometriosis=25yrs/Dx 2003 lung infiltrates/Res MP/ Meds=none/25D=29,ACE=94,1,25D=?,PTH=2.8,IonCal=6.04/avoidinglight & D/no Beni/no Mino
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19395 |
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Posted: Mon Sep 19th, 2005 08:10 |
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Debbie
from MP FAQs.... Easy Finder see FAQs When will a blinded study be done of the Marshall Protocol?
Why won't my doctor consider the Marshall Protocol?
Why is the Marshall Protocol not being discussed & used by doctors around the world?
I don’t understand the science behind the Marshall Protocol. Where can I get answers?
thanks, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Guss Wilkinson
Member in Phase 3
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Posted: Mon Sep 19th, 2005 20:35 |
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| A major part of the protocol involves avoidance of light and foods containing vitamin D - this part of the treatment would be impossible to blind.
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Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; BP 100/60. Feeling pretty good!
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Dr Trevor Marshall
Research Team
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Posted: Mon Sep 19th, 2005 20:54 |
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Guss,
We could do multi-factorial randomized blinded studies. Those are what I am talking about with the FDA.
..Trevor..
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Tim
Member
| Joined: | Sun Jul 25th, 2004 |
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Posted: Wed Sep 21st, 2005 14:36 |
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| I happened to see Dr. Zerhouni on PBS Nightly Business Report last night. He seemed like a genuinely nice but ignorant fellow. One thing he said really struck a nerve - he said he thought they would soon be able to diagnose disease before people get sick. I'd be satisfied if he could diagnose disease after it is present, but sadly even that is currently out of reach.
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scooker48
Member in Phase 3
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Posted: Wed Sep 21st, 2005 16:45 |
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I just finished a mailing to 40 friends. The envelope contains my friendly letter and a stamped, pre-addressed postcard to the NIH Director. I've asked them to write the following sentence: "Please study the Marshall Protocol" or "Please either substantiate or refute the Marshall Protocol". I also am sending along, in the same envelope, the excelent summary, "What is The Marshall Protocol".
Keep on pushing.
Sherry
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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: | 3873 |
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Posted: Wed Sep 21st, 2005 19:22 |
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Whiile in Bethesda, one might look into:
Howard Hughes Medical, non government
http://www.hhmi.org/
Howard Hughes Medical Institute
4000 Jones Bridge Road
Chevy Chase, MD 20815-6789
(301) 215-8500
e-mail: webmaster@hhmi.org
http://www.hhmi.org/contact/directions.html
http://www.hhmi.org/contact/directory.html
Unless everything worthy of time at the Director's Pioneer Awards on the 29th have already been arranged.
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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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kenc
Member in Phase 2
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Posted: Thu Sep 22nd, 2005 00:31 |
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| What is a multi-factorial randomized blind study?
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4 6Sep05 1,25D=29 25D=12, 12Jul05 Beni+pred, 27Sep05 Mino, 12Jul06 Phase2+dexa ,12Jul07 1,25=16.7 25D<10, 14Aug07 Phase2
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Meg Mangin R.N.
Research Team
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Posted: Thu Sep 22nd, 2005 03:43 |
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kenc,
In a multi-factorial study, a drug is evaluated by testing it in combination with other drugs rather than by itself. For example, one group of patients might test therapy A, another test therapy B, a third group test A and B combined, and a control group test neither A nor B.
Randomized means people are assigned at random either to receive the new drug, the standard treatment for that disease, or a nonfunctional substitute (such as a sugar pill). This last group is often called the control group, or the placebo group.
Blinded studies can be double-blind in which neither the patient nor the physician knows who is getting which drug or single-blind in which the doctor knows but the patient does not.
Best,
Meg
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Dr Trevor Marshall
Research Team
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Posted: Mon Sep 26th, 2005 19:59 |
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I finished the Press Releases in time, and will be flying out tomorrow morning to meet Meg and Belinda in Washington. We have an appointment at the NIH on Wednesday morning, and then then we are meeting the 5 other MP folks who are arriving Wednesday to let Dr Zerhouni know that this community will not be ignored, during the seminar on Thursday.
Wish us all luck,
Trevor..
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LeAnne
Member in Phase 3
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Posted: Mon Sep 26th, 2005 20:13 |
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I will be with you all in spirit. Thank you for everything you are doing.. I hope they will be more receptive this time. None of our efforts are in vain. Have a safe trip and a wonderful time!
LeAnne
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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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Betsy G
Member in Phase 3
| Joined: | Fri Oct 8th, 2004 |
| Location: | Meridian, Idaho USA |
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Posted: Mon Sep 26th, 2005 20:37 |
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Trevor,
Have a safe trip! I appreciate your energy, commitment, and effort on behalf of all of us. I pray that Zerhouni's eyes be opened by the info that you, Belinda, and Meg will deliver. Good luck and God bless,
Betsy
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Sarcoidosis by lung biopsy, muscle joint skin 25D-10(Dec07). Nov04 Benicar. Ph1Mar05 Mino,NoIRs, K cream,windows covered. Ph2Jun05. Ph3July06. Wellbutrin Vit E
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wytnez
Advocate
| Joined: | Mon Nov 29th, 2004 |
| Location: | Texas USA |
| Posts: | 607 |
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Posted: Mon Sep 26th, 2005 21:43 |
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Trevor, Belinda and Meg,
You will definately make a positive impact. Just the fact that you have not let the NIH deter you from moving forth with this life saving treatment is proof that your voice will be heard. Tens of Thousands will be on the road to recovery thanks to you all. Your knowledge and expertise is going to pay off.
Have a safe trip.
We will see you when you get back.
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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ShrnHml
Guest
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Posted: Mon Sep 26th, 2005 21:49 |
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Profiles in courage? Yes..........all of you!
We are proud to have you representing us.
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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Morris W. Milnes
Member
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Posted: Mon Sep 26th, 2005 23:22 |
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Good luck Dr. Marshall. Wish I could be there, although at this time I have enough trouble dealing with conferences where everyone is friendly like at your conference in Chicago.
Morris
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Diag: Sarcoidosis by median stenoscopy 1986. VitD tests 25D=16/ 1,25D=37/ Avoid Vit D 11/04/ Benicar 4QD/ Started Mino QOD 4/6/05 7/06 1,25D=21, 6/07 25D <7 Mag Citrate 1 tsp daily. Calcium 1200mg daily, Vit C 250 mg daily,Synthroid.1mg daily.
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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 Sep 27th, 2005 09:51 |
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Good luck, hope they will listen reasonable argumentation.
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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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kikdoc
Member
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Posted: Tue Sep 27th, 2005 15:04 |
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| Good luck! If you speak with Dr. Zerhouni, remember he is a scientist, but in his position now he is first a politician and not likely to give you much information. (Unfortunately in the political climate right now he actually may not be ABLE to give you information. This is a very centralized Administration.) He may talk, but say nothing. Hopefully you will leave with more leads than dead ends!
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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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Frans
Member in Phase 2
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Posted: Tue Sep 27th, 2005 19:38 |
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Best of luck to you all !!
I admire all your endurance and energy to keep fighting those windmills !! They will break down eventually, this community is growing all over the world and will NOT be kept overseen by TPTB !!
Sincerely, Frans
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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: Tue Sep 27th, 2005 19:54 |
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Anyone who grasps the significance of "The Marshall Protocol" (MP) probably feels the same way I do: this is a historic project. And forgive me for drawing analogies, but its as earth shattering as The Manhattan Project (another MP!). But not as destructive to human life or peace on the planet.
I'm going to write another 10 friends and enclose the pre-addressed postcards to the NIH Director.
Press on...
Sherry
P.S. My thoughts are with everyone in Bethesda these next few days.
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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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