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Dr Trevor Marshall
Research Team
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Posted: Sat Sep 3rd, 2005 08:53 |
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OMG, George, I am saddened to hear that. Please focus on locating your loved ones. I am sure everybody here will help you in any way we can, and most certainly by carrying forward the advocacy effort while you locate your loved ones.
Sincerely
Trevor
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rainbowcatcher
Member
| Joined: | Wed Oct 27th, 2004 |
| Location: | United Kingdom |
| Posts: | 432 |
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Posted: Mon Sep 5th, 2005 10:05 |
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Investigative reporters in US
http://www.empirezine.com/newspapers/3.htm
Or a graduate from
http://web.mit.edu/knight-science/bootcamps/isj_2005/info.htmlLast edited on Mon Sep 5th, 2005 10:13 by rainbowcatcher
____________________
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: Mon Sep 5th, 2005 10:35 |
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That first link is a good one. It sets out a lot of the background we need to understand if we are going to be able to interest the press in what we have found.
http://www.empirezine.com/newspapers/3.htm
Several years ago I spoke with an ex-AIDS activist who had just taken up a senior management job at NIH. She made it quite clear that the NIH will react to articles in the NY Times, LA Times, Boston Globe, Washington Post, and those other news outlets which are read by millions of people.
The author of that review about investigative reporting says:
Investigative stories confirm our suspicions. They can begin with a tip from a reader, but are often the result of a curiosity and suspicions on the reporter's part. In my current job at the Vallejo Times-Herald , numerous animal lovers have approached me with complaints about malfeasance and animal cruelty at the local humane society which I am now checking out through a public records search. These complainers at first wanted me to print all their allegations verbatim, but I can't do that until they are substantiated.
That is indeed the process. You need to write to all the influential reporters, but only those who already are thinking along the same lines, that "the NIH isn't coming out with cures - why not?" will be interested in the tip you have given them.
Then they will call the 'experts' (hopefully including us at the Autoimmunity Research Foundation) to get the various points of view. If they sense a story, they will think about it further, and eventually write up what they have found.
That is why I can't do the writing - the tips have to come from you folks.
The same logic applies to the NIH - Dr Zerhouni will react to public pressure, not just to the pressure I am keeping on him. YOU need to get in his face often enough that you become part of his solution, and not just part of his problems.
..Trevor..
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Freddie Ash
Member in Phase 3
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Posted: Mon Sep 5th, 2005 12:01 |
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HI TREVOR
This is Fred in WV. Just tell us when to start and what is the email address.
The sooner the better!!!!
you friend in sarcoisosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3863 |
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Posted: Mon Sep 5th, 2005 14:45 |
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Email addresses I've already sent to. I told them my perspective. Do tell them yours:
srohrs@thnewsnet.com
Susan Rohrs
boyce@mit.edu
Boyce Rensberger
Phone: 617.258.8249
Fax: 617.258.8100
http://www.chriscmooney.com/blog.asp
moonecc@yahoo.com
http://www.casw.org/contact.htm
diane@nasw.org
david.willman@latimes.com
erf@rachel.org
........................
Interesting recent article on Dr. Zerhouni here: http://www.nytimes.com/2005/08/30/health/policy/30nih.htmlLast edited on Mon Sep 5th, 2005 16:42 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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Moxie
Guest
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Posted: Mon Sep 5th, 2005 22:29 |
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Trevor as you well know, helicobacter pylori met the same fate here in Oz-initially (only took 10 years!). Previously I had a seminar business focussing on presenting seminars on CFS for health professionals and the general public. We worked alongside Newcastle Uni researchers for some time hopefully heading them in the direction of funding and recognition with no success.
One suggestion I have is to find a 'high profile celebrity' who has a TH1 immune disease and use that person as your spokesperson.
Right now, I believe you are doing exactly the right thing to get recognition - using patients to push - we are a force to be reckoned with once we are properly harnessed + add in a celebrity to become the face of TH1 disease + an investigative journalist in as many countries as possible. I have been chomping at the bit to get some TV time here in Australia but have been reluctant to do so as I do not know how much publicity you want and how you want to go about it.
Patience and determination I believe are the keywords here. New science and new medicine are BIG topics for rigid thinkers!!!
Cheers Moxie
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CFS 25 years - FMS. Benicar 3 daily - Ph 2 16/5/05 - Ph 3 10/5/06 Metformin 500mg 1/2 bd. Vit D 45nmol/L (18ng/ml) 1,25 D 92pmol/L (38.3pg/ml)
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Dr Trevor Marshall
Research Team
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Posted: Mon Sep 5th, 2005 22:37 |
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Moxie,
I am happy to travel anywhere for conferences, etc (at least until the money runs out). Please do your best to interest the Oz media.
Yes, I need the patients to start exerting pressure now. Meg, Belinda and I are doing all we can, and it just needs a little more pressure than we alone can give.
I was hoping that we could get half a dozen (or so) patients along to Dr Zerhouni's webcast, so as to let him know he cannot say one thing in public, and another in private. But as of today, I haven't had one email from anybody who wants to join Meg, Belinda and I, so I am not sure what is in the community's heads right now.
..Trevor..
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Moxie
Guest
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Posted: Mon Sep 5th, 2005 22:55 |
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Please direct me to some links that I can use for publicity purposes...
Also I did an interview with my GP (whom I believe you know) that I sent off to ME/CFS Societys in Qld and Victoria. Would you be happy if I used this for press releases? I can't send it as it is too large....any other email address to send to?
Moxie
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CFS 25 years - FMS. Benicar 3 daily - Ph 2 16/5/05 - Ph 3 10/5/06 Metformin 500mg 1/2 bd. Vit D 45nmol/L (18ng/ml) 1,25 D 92pmol/L (38.3pg/ml)
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Freddie Ash
Member in Phase 3
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Posted: Tue Sep 6th, 2005 10:10 |
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HI TREVOR
This is Fred in WV. If the other patients are like me they are waiting for you to tell us what you want us to do next. Who and what is best said to these people. We do not want to do something that would do harm, we want to do good for all of us. We want to make sure we make the loudest noise we can at the NIH.
Your friend in sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3863 |
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Posted: Tue Sep 6th, 2005 10:25 |
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If I understand correctly MP Patient Attendance is requested at this conference. See base of Meg's note at beginning of this thread:
On the 29th September (in 4 weeks time) Dr Zerhouni is holding a Public Symposium to announce the recipients of the 2005 Director's Pioneer Awards.
http://nihroadmap.nih.gov/pioneer/symposium2005/
This event will be held in Clinical Center, Building 10, at the NIH campus in Bethesda (a campus map is at URL http://dtts.ors.od.nih.gov/visitor_access_map.htm )
A Google-maps aerial view of this building can be found at URL http://tinyurl.com/89h8g (it is the building with "Center Drive" shown as going through the middle of it...
Dr Marshall, Belinda and myself will all be travelling to Bethesda to attend this event, so that we can voice our concerns directly with the key players. Any of you who are able to attend would, of course, be welcome, and Belinda, Dr Marshall and I will be looking forward to meeting those who attend, not only at the actual symposium, but also at our hotel on the evening before, and the morning after, the symposium.
(The Chevy Chase Holiday Inn, at http://tinyurl.com/bg7bd )
(The nearest Metro to the Hotel is http://tinyurl.com/bczwh )
You can see last year's recipients here: http://nihroadmap.nih.gov/pioneer/Recipients04.aspx
Overview of the NIH Pioneer awared here:
http://nihroadmap.nih.gov/pioneer/
Symposium agenda, LINK to LIVE webcast, and how to get there issues here:
http://nihroadmap.nih.gov/pioneer/symposium2005/index.aspx
Attendance at the symposium is free and no pre-registration is required.
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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: Tue Sep 6th, 2005 10:54 |
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I think that the point Meg was trying to get across is that the only man in the NIH who has the obvious authority to ask the correct questions and get things moving, is the Director, Dr Zerhouni.
He is holding a public meeting to announce some grants being given by the NIH to a group of researchers chosen by the NIH as those most likely to be able to effect a rapid change in 'Status-Quo' medicine, and produce research leading to breakthoughs (that is so ironic, isn't it??)
Dr Zerhouni makes public statements saying he cares, that he wants cures, and here is a chance to let him know what you think about the way NHLBI is putting obstructive pressure on your Doctors, and on you, and that this is not scientific, and it is not ethical.
How to do this? I don't know, but maybe a group of patients could display some banners at the back of the room during Dr Zerhouni's talks (there is one in the morning and one in the afternoon), quietly, discretely (off-camera), and respectfully, letting him know, in very positive fashion, what they think the problems are, and then mingle with TPTB from NIH who will be at the reception in the afternoon.
The Foundation has reserved a couple of discount rooms at the hotel in case folks need to get in the day before, or leave the day after, please contact Meg to coordinate this stuff.
Sincerely
Trevor
ps: Conflict of Interest Disclosure: I have applied for, and been rejected for one of these fellowships in both 2004 and 2005, although that is immaterial to the issue of patients saying what they think about the way NIH is functioning (or not functioning, as the case may be)...
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LeAnne
Member in Phase 3
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Posted: Tue Sep 6th, 2005 13:39 |
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This is a copy of the letter I wrote to the NIH and Dr. Zerhouni.
"Why are you wasting time and spending millions of our tax dollars on research to better manage this disease, when there is a curative treatment? I am at the end of phase I of the Marshall Protocol.I know you are aware of this treatment protocol for TH1 inflammatory disease. I can already tell that it is working for me. I don't understand why you are ignoring this treatment protocol. There are doctors who are using it. They see the validity of it. You are going to stand before God one day and give an account for how you have handled this. There are billions of people suffering with chronic illnesses, taking these drugs that are only masking the symptoms. These drugs are sometimes more harmful than the disease. I believe, and so do thousand of others, that you don't want to find a cure. It is not in your best interest. If chronically ill patients get well then it will hurt your pocketbook. The love of money is the root of all evil. Believe me, you will be held accountable one day. I am thankful that I found the Marshall Protocol and did not have to be one of the victims who have had to suffer from long term use of immunosuppresents and steroids. I am begging you to please just stop pussy footing around and find a CURE!!!!!! Trevor Marshall's findings are correct. We won't back down!!!! We won't stop educating people.People are losing confidence and trust in you. Do the right thing and research the Marshall Protocol!!!! We beg you!!
LeAnne Byrd
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I know the letter sounds a little mean, but they need to know how we feel.
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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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Belinda
Research Team
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Posted: Tue Sep 6th, 2005 13:58 |
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Freddie and Everyone,
We are asking that members, their families and friends, personally attend the NIH meeting on Sept. 29, 2005, to tell NIH why they need to open up to new ideas (like the MP) that have immediate applications for suffering and dying patients. We want to emphasize that family and friends are welcome, too. We want Dr. Zerhouni to see at least 6-12 real people who (as they mingle during the reception) can tell how the MP is changing their lives.
We think people need to ask the NIH exactly how they THINK new cures are likely to come about, since they want to discount this one? Do they think researchers will putter around with new drugs until they come up with one that might work? What are the chances that will happen, given that NIH doesn't know what causes these idiopathic diseases?
Why can't the NIH put together a committee to interview MP patients, review their records, and figure out what is happening to these people? That would require a trifling amount of money from the NIH.
What is delaying the NIH reorganizing the Trans-NIH sarcoidosis committee?
Anyone who cannot personally attend the meeting can send letters telling how the MP is changing their life and their families' lives. Letters from family and friends are welcome and handwritten letters are fine. We will hand-carry these letters to Dr. Zerhouni. Address your letters with your story, concerns and comments to Dr. Zerhouni and send them to:
Autoimmunity Research Foundation
3423 Hill Canyon Ave.
Thousand Oaks, CA 91360
or email to: foundation -AT- autoimmunityresearch.org
and we will print them out for you.
Belinda
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catlady
Member in Phase 3
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Posted: Tue Sep 6th, 2005 14:03 |
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I get the impression that the focus of the NIH meeting is on sarcoidosis. Since TPTB seem not to have caught on yet that CFS and some other illnesses are also Th1 and also respond to the MP, do you think it is valuable for CFS patients on the MP to write to Dr. Zerhouni, or only those with a diagnosis of sarcoidosis?
Catlady
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CFIDS 25+ yrs dx'd 2001; chronic pain, migraines; 11/04 25D=21, 12/04 1,25D=48; 5/05 25D=23 1,25D=54;12/05 25D=10 1,25D=37;3/06 25D=10 1,25D =20;6/07 25D=6 1,25D=26;4/08 25D=<4; 12/05 Beni 40mg Q4-6H; Mino 1/05; Mod PH2 5/05; PH2 1/07;Z+C+D3/07 Gabape
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Dr Trevor Marshall
Research Team
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Posted: Tue Sep 6th, 2005 14:06 |
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CatLady,
It is absolutely important for everybody to let Dr Zerhouni know what is happening. His own ORWH office just gave 4 million dollars out for CFS research - to explore the "its all in your mind" hypothesis. DR Zerhouni needs to be told there is change in the wings, that his organization needs to be part of the solution, and not part of the problem 
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catlady
Member in Phase 3
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Posted: Tue Sep 6th, 2005 14:10 |
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Dr Marshall,
Thank you for you quick reply. I will definitely write, especially now that I know they are still wasting money on the "all in your mind" hokum...
Catlady
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CFIDS 25+ yrs dx'd 2001; chronic pain, migraines; 11/04 25D=21, 12/04 1,25D=48; 5/05 25D=23 1,25D=54;12/05 25D=10 1,25D=37;3/06 25D=10 1,25D =20;6/07 25D=6 1,25D=26;4/08 25D=<4; 12/05 Beni 40mg Q4-6H; Mino 1/05; Mod PH2 5/05; PH2 1/07;Z+C+D3/07 Gabape
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kikdoc
Member
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Posted: Tue Sep 6th, 2005 17:49 |
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Dr. Marshall:
I live in the DC-area and would love to attend the NIH meeting with you, however I fear this would impact my job negatively (as I would not have one after that). I do wish you the best, and admire your tenacity and willingness to push forward.
Do you think it would be possible to get a reporter to give you some coverage following your meeting? ie. a small press conference where you lay out your arguments and the stone-walling from NIH? The press loves a good conflict, and especially David vs. the Federal Goliath. Just a thought. Wish I could do more.
Thanks!
____________________
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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Dr Trevor Marshall
Research Team
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Posted: Tue Sep 6th, 2005 18:08 |
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Kikdoc,
If you take a look at the two recent newspaper articles you can see our problem. The pulmonologists whom are regarded as sarcoidosis specialists, although few in number, seem to be willing to say anything, in order to denigrate what we have achieved. Unfortunately the NHLBI is (largely) protecting them.
http://www.thestate.com/mld/thestate/living/12351059.htm
So a poor reporter is faced on the one hand with an effective intervention, maybe a cure, and on the other hand with respected medical experts who apparently will stop at nothing to slander us. Even to the point of fabricating imaginary patients whom they say have not been successful with the MP.
That is why we need to make Dr Zerhouni realize what is going on here. This is not science. This is not even 'status-quo medicine'.
I do understand your position (re: your job), and I am sure you will be with us 'in spirit,' at least
We have set up a meeting in the OD/ORD the day before the seminar, and, if luck goes our way, maybe we can achieve our goals without any need for acrimony
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wytnez
Advocate
| Joined: | Mon Nov 29th, 2004 |
| Location: | Texas USA |
| Posts: | 605 |
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Posted: Tue Sep 6th, 2005 20:12 |
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Hello all,
I will not be able to make the conference but I sent my letter. I really wish I could be there. I really want my voice to be heard. I read my letter to my husband and he said that it was to the point. Dr.M, Meg,Belinda,Barb,Lottie, et al, thank you so much for your support in this fight for the cure to be recognized. The Marshall Protocol gospel will be heard and followed just you wait and see.
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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Dr Trevor Marshall
Research Team
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Posted: Wed Sep 7th, 2005 11:01 |
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**** NOTICE ****
Sherry (Scooker48) has offered to award a scholarship of her American Airlines mileage award, so that someone who is too remote from Bethesda to drive, can fly to Bethesda and attend the seminar.
Please email
Foundation -AT - AutoimmunityResearch.org
if you would like to be able to attend using Sherry's scholarship.
The foundation has also put reservations on two spare hotel rooms, and we may be able to help folks with accomodation, especially if they are able to share with others.
Sherry, thanks for your generous help
..Trevor..
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