| Author | Post |
|---|
Dr Trevor Marshall
Research Team
|
Posted: Tue Sep 23rd, 2008 16:47 |
|
Have you watched the video of Tom's presentation? I introduce Tom at the start of the video.
Tom has been one of our members for some time. He recently retired from the FDA, and accepted the Autoimmunity Research Foundation Board's invitation to join it as a Director.
|
joedegs
Member
|
Posted: Tue Sep 23rd, 2008 16:54 |
|
No I am sorry I have not watched them yet.
I plan to do so tonight. Thanks for your reply and congratulations on all your success at Porto!
____________________
Res MP, Pulmonary and Cardiac sarc, avoiding sunlight/vitamin D.
|
Martin78
Member
| Joined: | Sun Jul 15th, 2007 |
| Location: | Norway |
| Posts: | 142 |
| Status: |
Offline
|
|
Posted: Tue Sep 23rd, 2008 17:14 |
|
Hi
Sorry for the "bagatelle" questions, but I am curious (and encouraged) by a new member of the board  .
Is "Captain" refering to a military degree/position? and;
MPH = Master of Public Health ?
Thank you
BR
Martin
____________________
Sjøgrens - Fatigue "B-sxs" wt loss itch night sweats pain ancle/legs/chest irritation depression hypercalcemia 125D98 Ph1Apr08 Valium 25D56 (April08) ON BREAK UNTIL JAN/FEB 09
|
Dr Trevor Marshall
Research Team
|
Posted: Tue Sep 23rd, 2008 17:59 |
|
Martin,
I have already given you that answer in my introduction to Tom's presentation video. Is it too much to ask you to just watch the video? We have all spent a lot of time getting the Porto conference together, and then making the videos available for everybody to study...
(MPH=Master of Public Health)
|
Martin78
Member
| Joined: | Sun Jul 15th, 2007 |
| Location: | Norway |
| Posts: | 142 |
| Status: |
Offline
|
|
Posted: Tue Sep 23rd, 2008 18:04 |
|
I have seen both videos twice and I cannot find any mentionings about military background, in my country "Captain" is usually (almost only I would say) used in the military or at seas.. thats why I was courios.
I appriciate the work you all have done with sharing the presentations with us as much as anyone.
Last edited on Tue Sep 23rd, 2008 18:19 by Martin78
____________________
Sjøgrens - Fatigue "B-sxs" wt loss itch night sweats pain ancle/legs/chest irritation depression hypercalcemia 125D98 Ph1Apr08 Valium 25D56 (April08) ON BREAK UNTIL JAN/FEB 09
|
Dr Trevor Marshall
Research Team
|
Posted: Tue Sep 23rd, 2008 18:21 |
|
I introduce Tom by saying:
"Tom Perez is a Captain in the Commissioned Corps of the US Public Health Services. He recently retired from active duty after 25 years at the US FDA, the Center for Drug Evaluation and Research, the last decade of which was spent in the management of CDER Drug Advisory Committees."
http://www.usphs.gov/
I think we need some volunteers to create text transcripts of these presentations. Is there anybody with some time to spare who can help us with this effort?
|
Belinda
Research Team
|
Posted: Tue Sep 23rd, 2008 18:21 |
|
Captain Thomas Perez is a retired member of the commissioned corp of the United States Department of Public Health. We are delighted he considers a seat on the board of Autoimmunity Research, Inc. worthy of his time and expertise.
Belinda
|
Martin78
Member
| Joined: | Sun Jul 15th, 2007 |
| Location: | Norway |
| Posts: | 142 |
| Status: |
Offline
|
|
Posted: Tue Sep 23rd, 2008 18:25 |
|
Aha.. this clears things up. It is a corps, hence "Captain". Thank you!
I can do the first 5 minutes and email you, I will stop at 5:00. Anyone up fpr the challenge to take the next 5? or to the end? Its about 11 minutes?
BR
Martin
I have completed the first 5 minutes, maybee it took me half an hour.. I will complete the rest since noone responeded. First I need a break.,
Last edited on Tue Sep 23rd, 2008 19:32 by Martin78
____________________
Sjøgrens - Fatigue "B-sxs" wt loss itch night sweats pain ancle/legs/chest irritation depression hypercalcemia 125D98 Ph1Apr08 Valium 25D56 (April08) ON BREAK UNTIL JAN/FEB 09
|
paulalbert
Board Staff
| Joined: | Fri Jul 16th, 2004 |
| Location: | USA |
| Posts: | 667 |
| Status: |
Offline
|
|
Posted: Tue Sep 23rd, 2008 19:49 |
|
I have a transcript of Amy's. Don't worry about that.
Paul
____________________
Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
|
Ron
Member in Phase 2
|
Posted: Tue Sep 23rd, 2008 20:17 |
|
Started transcribing Dr. Marshall's presentation.
Let's see how far I can get. 
____________________
Dad with RA, MP 01/08| 25D 16.8| Apr08 25D-7.1 Sept08 11.6| oxycodon, NoIRs, limited outings covered up
|
Ron
Member in Phase 2
|
Posted: Tue Sep 23rd, 2008 23:20 |
|
OK, it's past midnight here. The transcript is done up to 11:18 or about one third of the presentation. I have emailed the result to Dr. Marshall.
If anyone is willing to do the rest while I am sleeping please go ahead. 
Ron
____________________
Dad with RA, MP 01/08| 25D 16.8| Apr08 25D-7.1 Sept08 11.6| oxycodon, NoIRs, limited outings covered up
|
Martin78
Member
| Joined: | Sun Jul 15th, 2007 |
| Location: | Norway |
| Posts: | 142 |
| Status: |
Offline
|
|
Posted: Tue Sep 23rd, 2008 23:22 |
|
Great work Ron, I'm at about 7mins, will finish tomorow. (its kind of slow-work..)
Br Martin
____________________
Sjøgrens - Fatigue "B-sxs" wt loss itch night sweats pain ancle/legs/chest irritation depression hypercalcemia 125D98 Ph1Apr08 Valium 25D56 (April08) ON BREAK UNTIL JAN/FEB 09
|
Dr Trevor Marshall
Research Team
|
Posted: Wed Sep 24th, 2008 00:32 |
|
I got Ron's first 11:18 minutes, finishing at:"But it does allow it to happen because these microbiota have figured out how to overcome innate immunity. They have overcome the last line of defense"
When we have a complete copy I will proof-read it
|
Rico
Member in Phase 3
| Joined: | Wed May 31st, 2006 |
| Location: | |
| Posts: | 248 |
| Status: |
Offline
|
|
Posted: Wed Sep 24th, 2008 01:45 |
|
Congratulations on the presentations! Surely, the scientists who were present there cannot ignore it.
I wanted to ask if it would be possible to make available Tom's slide which contained the list of diagnoses and the success rate on the MP? I found it very difficult, if not impossible, to read it as the text was rather small on the video.
Thanks!
____________________
No diagnosis/some symptoms; wife with Sarc on MP; Olm 40mg q6h| avoid D| 1,25D=63 25D=32 (May 2006) 1,25D=44; 25D=10(Dec 2006)PhaseI(May06) PhaseII(Aug06) PhaseIII(Aug07)
|
Dr Trevor Marshall
Research Team
|
Posted: Wed Sep 24th, 2008 02:20 |
|
Rico,
The chart with only the Autoimmunity diagnoses on it is at URL:
http://MarshallProtocol.com/MP_results_chart_auto_only.jpg
while the chart including CFS and Fibro is at URL:
http://MarshallProtocol.com/MP_results_chart.jpg
It was interesting that CFS was being posited as a potential Autoimmune Disease by at least one speaker during the conference. We had removed that data as not being germane to the conference theme. That was before we arrived in Porto
|
jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3877 |
| Status: |
Offline
|
|
Posted: Wed Sep 24th, 2008 04:51 |
|
I have Captain Perez's presentation transcript and will provide a PDF with slides shortly.
If someone has finished Dr Marshalls text transcript, I can drop in the slide presentation for a fuller transcript.--Janet
____________________
Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
|
Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | West Coast, USA |
| Posts: | 584 |
| Status: |
Offline
|
|
Posted: Wed Sep 24th, 2008 07:11 |
|
Excellent job by all! Any honest researcher can not ignore what was so clearly presented and illustrated by the members of the protocol cohort.
For those of you who want more details, here are the survey results Capt Perez used in his presentation:AI only results:
(not including FM or CFS, which had even better response rates)
Total surveys = 100
Results grouped by... <18 mos on MP , 18+ mos on MP...
0-17 months 30/61 or 49% improved all the time
18+ months 44/54 or 81% improved all the time
Improved all the time determined as symptom levels at highest IP now is less than symptoms levels before starting the MP.
One small note:
On the MP results slide, you may notice that there are no 'indeterminate' results for the FM and CFS bar chart at the bottom.
This is because when that chart was created, the 'indeterminate' responses were added in with the 'not improved' categories. Funny I didn't catch that earlier. 
Last edited on Wed Sep 24th, 2008 07:25 by Joyful
____________________
Lyme Babs? Bart? | 125D50 Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | cal/mag lysine hydroxyzine valium | rarely leave house NoIRs cover up low lux home | 25D15 Oct08
|
Dr Trevor Marshall
Research Team
|
Posted: Wed Sep 24th, 2008 07:28 |
|
I just uploaded Dr Greg Blaney's presentation to http://vimeo.com/1790302
It should be processed and viewable in about an hour.
Now its time for a week or two of rest, I think
|
Martin78
Member
| Joined: | Sun Jul 15th, 2007 |
| Location: | Norway |
| Posts: | 142 |
| Status: |
Offline
|
|
Posted: Wed Sep 24th, 2008 08:52 |
|
Jrfoutin: Do you already have the Perez transcript, I mean his actual words in writing?
If so I will not nother to complete my writings...
____________________
Sjøgrens - Fatigue "B-sxs" wt loss itch night sweats pain ancle/legs/chest irritation depression hypercalcemia 125D98 Ph1Apr08 Valium 25D56 (April08) ON BREAK UNTIL JAN/FEB 09
|
jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 1066 |
| Status: |
Offline
|
|
Posted: Wed Sep 24th, 2008 13:02 |
|
I should add that the CFS data is only a subset of CFS patients on the MP-- those who also had FM or an AI disease. So, if you have CFS and started minocycline in 2007 or before and didn't get surveyed, it is because you didn't have FM or an AI disease in your signature line as well as CFS.
Also, we had approximatley a 75% survey return rate for AI diseases. For people who's only diagnosis of those we were looking for was FM, the survey return rate was 50%. I speculate that the lower return rate may be due to FM patients perceiving there to be more alternative approaches due to so many approaches being marketed at them, while the AI patients see primarily the less appealing immunosuppressive approaches as their alternatives and thus are more likely to stick with the MP.
I would add that I don't think one can equate not returning a survey to not doing well on the MP or quitting. I know of some cases who are doing well but did not fill out a survey. And I also know how hard it was to get in touch with some people. Some did not respond until the fourth or fifth attempt to contact them. Also, some change their email addresses so they may not even have received the survey.
Joyce Waterhouse
Last edited on Wed Sep 24th, 2008 13:26 by jcwat101
____________________
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
|
Current time is 16:36 | Page:   1 2 3 4 5 6   |
|
