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LeAnne
Member in Phase 3
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Posted: Wed Sep 7th, 2005 19:01 |
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I would love to attend the conference, but with my husband gone and working on restoring power from the hurricane, I cannot plan to go anywhere. I do not know how long he will be gone. I have to hold down the fort at home and be here for my children. Please continue to keep us informed of upcoming meetings. I hope that the representatives of the MP will be fruitful in their endeavors. I know if we don't back down, we will finally make an impact on them. I know that we need to be respectful of them, their position, and where they are coming from. Although, it is difficult sometimes to understand their mentality on things. The evidence is staring at them right in the face and they simply ignore or disregard it.
LeAnne
Last edited on Wed Sep 7th, 2005 19:01 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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wrotek
Member in Phase 3
| Joined: | Fri Dec 31st, 2004 |
| Location: | Wroclaw, Poland |
| Posts: | 1129 |
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Offline
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Posted: Wed Sep 7th, 2005 20:06 |
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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.
They do not want to listen us because we are nitpicking  This is how NHI treat tax payers, when they expect help from NIH in field which is their job.Looks like the negotiations, listening to us, is all they can afford from these milion dollars payed. Talking? If I want to talk i call hot-line and it costs only few dollars/minute nad the effect is the same.
With who they were negotiating our lifes? WHo decides who lives and who not if not Dr Kiley And Dr Zerhouni ?
I would like to know what are principial reasons, why they refused? Only thing i see here that we are netpicking that is sad, when people deprerately looking for possibility to live longer are called beeing netpicking.
Does all money goes to keep goog health of NIH workers and good sunburn of Dr Zerhouni? He needs a lot of watts i guess to keep it.
IF doctor Kiley says science is not changing quickly, than meybe He has a idea what should we do next to speed it up?
They are procedures like double blind studies i suppose which should be next step.
What/who is holding the progress?
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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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Dr Trevor Marshall
Research Team
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Posted: Wed Sep 7th, 2005 20:24 |
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Wrotek,
Double-blind studies won't work for testing the MP. Can you imagine the folks on placebo wondering why they dont feel worse? Why they don't feel better? For 24 months?
We can perform other kinds of ongoing studies.
I have a few ideas, but those who talk about "double-blind" are just plain ignorant of even the most basic science of blinded study design.
..Trevor..
ps: you know why they refuse - the money machine needs to be kept churning
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Dr Trevor Marshall
Research Team
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Posted: Thu Sep 8th, 2005 12:59 |
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**** Sherry's Scholarship Awarded to Barney ****
Due to Sherry's generosity, Barney will be joining us in Bethesda, finding out how the NIH works, and meeting some of the key players.
..Trevor..
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rainbowcatcher
Member
| Joined: | Wed Oct 27th, 2004 |
| Location: | United Kingdom |
| Posts: | 432 |
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Posted: Thu Sep 8th, 2005 15:50 |
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WE COULDN'T HAVE HOPED FOR A BETTER MEMBER TO REPRESENT US! GO BARNEY!!!!!!!
Like I said in my PM Barney, we wish you the best & our thoughts & computer will be with you on the 29th!
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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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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3872 |
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Posted: Thu Sep 8th, 2005 17:03 |
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Thank you Barney, and thank you Sherry (Scooker48) and Thank you Dr. Marshall and team for your time, sacrifices and efforts.
I hope that all can proactively help the NIH to shift paradigms toward including Dr. Marshall in next year's awards. No doubt he is truely a Pioneer, so much so that TPTB's limited radar have failed to see or understand that as yet. (Society's big loss, but it need not be permanent.)
Don't forget to post reports of your successful and enjoyable conference attendance. I'll continue to see what I can do to help from my cave. I'm working to get well enough to go next year!
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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 8th, 2005 17:10 |
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Several other members have written to Meg as well, making arrangements to attend, but to protect their confidentiality I will let each of them decide if they want to keep a low profile, or post their decisions publicly (here) 
Thanks to everybody for their support. I think this is going to mark a watershed in the visibility of the MP at the NIH.
..Trevor..
ps: more folks are still welcome, especially if you are within driving distance
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ShrnHml
Guest
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Posted: Thu Sep 8th, 2005 19:43 |
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There must be a medical correspondent at the Washington Post. I tried to find his/her name on their website without success.
I know nothing about PR, but I would assume that you want at least one reporter there. Other high profile newspapers have reporters stationed in DC for national news coverage.
Does anyone know the ropes in getting coverage?
Sharon
PS Great news about Sherry and Barney. Thanks Sherry and Barney! You both do us proud.
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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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Dr Trevor Marshall
Research Team
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Posted: Thu Sep 8th, 2005 20:24 |
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Sharon,
I assume that the NIH will have themselves arranged for press to be at the seminar.
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rainbowcatcher
Member
| Joined: | Wed Oct 27th, 2004 |
| Location: | United Kingdom |
| Posts: | 432 |
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Posted: Fri Sep 9th, 2005 03:52 |
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| We can also write to News Papers around the world asking their journalists to watch the live web cast. The more papers; the more journalists watching.
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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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Dr Trevor Marshall
Research Team
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Posted: Fri Sep 9th, 2005 10:54 |
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Rainbowcatcher,
Ther will be little visible on the webcast, as we don't intend to be disruptive of the webcaat. It will be a waste of time getting journalists to watch webcast, and it could be counter-productive if they fall for all the NIH spin that Dr Zerhouni will be weaving.
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2bonnie
Member
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Posted: Fri Sep 9th, 2005 23:39 |
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| I gave testimony before the N.I.H back in 98 to the efficacy of the herb cannabis(marijuana)in Irvine calif. workshop they had which was funded by our federal gov. at the request at the then fed. attorney general,D.E.A. when the results of the 3 workshops,irvine-patients,new orleans-neuroligists,wash.d.c.-acadamy of sciences,It still didnt matter.Even tho the reports showed its overwhelming safety,no L.D 50's(non physically habit forming)ect.,the forums findings were ignored and buried,the point is that when it comes to the capitalist,conservatives that lobby for the pharmyscies interests and the mp,how is it going to sound when the message is...WE HAVE A CURE FOR SARCOIDOSIS,NOT JUST THAT BUT ALSO THE OTHER DISEASES A,B,C,D,E,F......AND ARTHRITUS,OH MY GOD,THE COMPANIES,WHAT WILL THEY DO WHEN THEY CAN SAY,UH WE HAVE CURES,THE PUBLIC WILL START TO EXPECT CURES,THAT IS UNEXCEPTABLE,IN ALL TOTALITY,JUST AS OUR GOV. RESPONSE TO KATRINA,ALL THE OTHER THINGS THAT ARE UNJUST IN THIS WORLD.MAYBE WE SHOULD ORGANIZE A MILLION PEOPLE MARCH IN D.C,IT SEEMS THAT GETS THE NEWS,OR LETS GO TO TEXAS AND STAND IN LINE W/REST OF THE AMERICANS THAT ARE TOTALLY FED UP W/OUR GOV.RESPONSE TO THE WAY ITS PEOPLE ARE TREATED THAT WE GO TO WAR WITH OTHER COUNTRIES FOR,EVERY YEAR WE COORDINATE PARADES 4 THOSE SICK WHO USE CANNABIS,EVERY 1ST WEEK IN MAY,WHY COULDNT WE START A CURE DAY,ORGANIZE IT IN EVERY TOWN WHERE WE HAVE PM ON MP?LOCAL PAPERS,METRO NEWSPAPERS ALWAYS PICK THE STORIES UP.THINK ABOUT IT!i CAN TELL YOU HOW TO ORGANIZE THE PARADES,WHO TO SEE TO GET PERMITS ECT.THE MARIJUANA MOVEMENT IN CALIF. STARTED W/ GRASS ROOTS GROUPS,TAKE HEART WE CAN BE HEARD BUT THE PUBLIC NEEDS TO KNOW! WE LEARNED IN MARI. MOVEMENT TO TAKE IT TO THE PEOPLE,THEY ARE THE ONES WHO PAY THESE JERKS THIER BENZ CAR PAYMENTS,PLEASE THINK ABOUT IT ITS NOT HARD,COMMUNITIES SUPPORT SICK PEOPLE,THINK ABOUT IT 2bONNIE
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Dx:Sarcoid97/diabetic anxiety wtloss bad pain/ O2 2L sleep
beni40mgQ6H June05 /NoIR/avoid light&D/
avinza percoset quinine magnes ambien/ 1,25d-133.3/25-16.9/tested aug16/05 orig.#25-33.7/1,25-49.5/taken3/05/fibromayalgiacardiac herx
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Dr Trevor Marshall
Research Team
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Posted: Fri Sep 9th, 2005 23:44 |
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Bonnie,
I think the most logical thing to do is to focus on those diagnoses for which we have plenty of data - particularly Sarcoidosis, CFS and Chronic Lyme, and allow the bigger picture to gradually dawn on them...
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scooker48
Member in Phase 3
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Posted: Sun Sep 11th, 2005 17:41 |
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We must keep pounding away at our represenatives. I will send this letter tomorrow.
11 September 2005
Elias A. Zerhouni, M.D.
Director
National Institutes of Health
9000 Rockville Pike Bldg. 1
Bethesda, MD 20892
Dr. Zerhouni,
In light of criticism of government for Hurricane Katrina response, I propose a “win-win” solution. You have the power to show the Federal Government is indeed responsive to its citizens.
Attached please find entries from THE MARSHALL PROTOCOL (MP) website titled “Success Stories”. I urge you to read a few.
I find many of these people’s stories fascinating. Using safe medications and life style changes from THE MARSHALL PROTOCOL, over time people have beaten into remission and CURED their disease.
The diseases named are Sarcoidosis, Chronic Lyme, CFS and Rheumatoid Arthritis to name only a few. As a librarian who reads technical literature, I can see the MP as a successful treatment to many other disease states.
I urge you investigate these claims. I believe the logical way to proceed is to form a committee to interview MP people and review their records. This would require a very small amount of money.
Although I have written you before on this matter with no reply received to date, this letter is sent via REGISTERED MAIL to document a paper trail. I am also sending this letter to my elected representatives asking their help.
There are several thousand people who are aware of THE MARSHALL PROTOCOL. We will not go away and by ignoring us you are doing dis-service to government and the current Administration. I urge you to act.
Respectfully,
Sherry M. Cook
Retired, U.S. Coast Guard
CC: Senator Dianne Feinstein
Senator Barbara Boxer
Congresswoman Anna Eshoo
Congresswoman Nancy PelosiLast edited on Sun Sep 11th, 2005 19:30 by scooker48
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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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madwolf
Health Professional
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Posted: Wed Sep 14th, 2005 15:19 |
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It would be helpful if we could get Bill ORielly interested. The spin has to stop somewhere. Unfortunately, I have noticed that he relies heavily on his staff for his opinions. Still, it's worth a shot. He has a huge following.
SteveF (madwolf)
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Dx: Psoriatic Arthritis, FMS/CFIDS, Raynaud's Restarted Phase 1 in Noremember 2007 Current 25-D is 35, Non-MP meds: Armour thyroid, 60mg qd. Cymbalta, 60mg qd. CoReg CR 40mg hs. (BP still stable) Januvia 100mg qd, Byetta 10 mcg sub-q bid.
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rainbowcatcher
Member
| Joined: | Wed Oct 27th, 2004 |
| Location: | United Kingdom |
| Posts: | 432 |
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Offline
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Posted: Sat Sep 17th, 2005 12:10 |
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In addition to other avenues, would a petition like this breast cancer example be helpful to the MP cause?
http://www.lifetimetv.com/reallife/bc/pledges/bc_mast_pledge.html
Friends & family would be happy to sign also . . . just a thought? 
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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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Dr Trevor Marshall
Research Team
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Posted: Sat Sep 17th, 2005 22:05 |
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Rainbowcatcher.
We are way beyond the petition stage. We already had the 'write-in' campaign, back at the end of May.
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rainbowcatcher
Member
| Joined: | Wed Oct 27th, 2004 |
| Location: | United Kingdom |
| Posts: | 432 |
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Offline
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Posted: Sun Sep 18th, 2005 05:06 |
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| Yes, I asked friends & family to write but none could be bothered as people are self absorbed in their own lives. A signature is all some people have time for; that was my only point.
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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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Dr Trevor Marshall
Research Team
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Posted: Sun Sep 18th, 2005 14:19 |
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Yes, but politicians know that signatures are easily bought. Hiring folks to stand in shopping malls giving away free gifts is not uncommon in petition drives. So the value of a signature is less than the value of those personal letters which were written, each of them a little different from each other.
We know that those letters were written to Dr Zerhouni from MDs, PhD,s MPHs, RNs and other professionals which NIH cannot afford to ignore, as well as by "hundreds" of patients (that was the NIH characterization). We have visibility, now we need to move to the next step.
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scooker48
Member in Phase 3
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Posted: Sun Sep 18th, 2005 15:01 |
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I was thinking of getting postcards from the U.S. Post Office, and attaching labels to the Director of the NIH. On the message section, possibly have the following sentence: "Please either substantiate or refute The Marhsall Protocol" and then a line for name, street address, City and State and ZIP code.
People would only have to sign their name and drop the Postcard in the mail.
Once I had these postcards preapred in such a fashion, I could send them to my friends and family. I would enclose "What is the Marshall Protocol" and then my own experience.
Just an idea and it could be done through the U.S. Mails.
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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