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jcwat101
Research Professional
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Posted: Tue Jan 29th, 2008 22:52 |
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January 31st is only a couple days away. If you can't make it by then, inquire after, as I still may taking them for a few days beyond that. But, I would appreciate your letting me know.
Joyce Waterhouse
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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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jcwat101
Research Professional
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Posted: Thu Jan 31st, 2008 01:37 |
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Now just one more day to the 31st -- keep 'em coming.
Joyce Waterhouse
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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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jcwat101
Research Professional
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Posted: Thu Jan 31st, 2008 20:50 |
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If you can get them into today, that's great. But if not, try by the end of the weekend.
Thanks,
Joyce Waterhouse
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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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jcwat101
Research Professional
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Posted: Sat Feb 2nd, 2008 18:47 |
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It looks like I will still be taking surveys for at least a week more (you have even more time if FM is your only diagnosis from the list). But try to get them in as soon as you can.
Thanks so much to all who have been participating,
Joyce Waterhouse
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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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jcwat101
Research Professional
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Posted: Mon Feb 4th, 2008 21:12 |
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You still can send them in -- see last post.
Joyce Waterhouse
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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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jcwat101
Research Professional
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Posted: Thu Feb 7th, 2008 18:58 |
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We have decided to extend the deadline for all the surveys until Feb. 22. This will include those with Fibromyalgia alone and those with other autoimmune conditions in the list above.
I will be sending out reminders soon. If you haven't sent it in, please do so -- the sooner the better. Do your best to read the questions carefully and answer all parts of each question. Ask someone to help you if you have trouble due to cognitive or computer usage problems.
This is important not only for helping the MP become more widely available, but will also help you and your family. The data we collect will help ensure it is easier to find doctors to help you and family members with the MP and that you will be able to get enough Benicar. It will probably lead in the long run to improved access to insurance coverage for Benicar.
But we want you to answer even if you don't know how you are responding, or if you are not yet improved or even feel worse still -- the way you are responding at your stage in the protocol is of interest for the survey. And if you are not going to respond to the survey, I would at least like to know if you received it and why you won't be responding.
The survey includes everyone that has posted in the Phase One and Phase Two/Three forums in 2006 and 2007 that have the diagnoses listed in my first post, above and some who haven't posted but who have followed the MP closely and contacted me and have any of those diagnoses.
I am lucky to now have some assistance with the data entry and handling from Paul Albert, Amy Proal and another trusted MP member, Tom Perez. This has proven essential due to the large amount of work involved. It will also be very helpful because they have some skills and abilities that will greatly aid the project as a whole and future data gathering. So, we all can be very grateful for their willingness to help out.
During the next few weeks, if clarification on some of the answers is needed, you may get an email from Amy rather than myself. But be assured, any personal information you include (which is optional) will be kept very private and you will be anonoymous for the purposes of the survey.
Thanks very much,
Joyce Waterhouse
jcwat101@aol.com
Last edited on Thu Feb 7th, 2008 20:52 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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jcwat101
Research Professional
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Posted: Mon Feb 11th, 2008 03:52 |
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Thanks very much to those who continue to send in their replies for this very important study. It is interesting that someone asked me what company I was doing this for. I decided I guess people get so many surveys from private businesses, they sometimes assume they all are.
So, to clarify, this is a volunteer effort involving many many hours of work from several volunteers and is being done for the Autoimmunity Research Foundation and for the benefit of current and future members. So, we hope spending a little time helping by filling the questionnaires out isn't too much to ask. So, keep them coming.
Joyce Waterhouse, PhD
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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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jcwat101
Research Professional
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Posted: Thu Feb 14th, 2008 20:16 |
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We are still taking surveys -- Feb. 22 is the due date for those with Autoimmune Illnesses.
Those who's only autoimmune illness from the list above is Fibromyalgia had a due date of Feb. 15, but I will extend that until the end of Feb. I will be sending out reminders, but it will save me work if I don't need to remind you. So, please make time to reply. The questionnaires were first sent to most people in late December.
I and my 3 colleagues will be spending many hours as volunteers on this ground-breaking study. I know surveys aren't fun, but this is a very important one and I hope you will help by filling yours out. This is a study site and we regard this as a responsibility of members to participate in return for being helped. Plus there is the satisfaction you will receive from being a part of this pioneering effort.
Please make brief replies but answer all parts of the questions if you can, as clearly as you can. For most questions, a number, yes or no, or better, worse, same, mixed, variable or uncertain are all that is needed.
Please keep a copy of your survey responses in case it gets lost in transit somehow and you need to send it again.
If you only have the time/energy to answer the first 9 or even the first 6 questions, that is better than nothing. A few people have filled out and sent part on one day and the rest later, if they got too tired half way through.
Some of you may be contacted by one of my colleagues for clarification on an answer or two (probably Amy Proal, but possibly Tom Perez or Paul Albert).
Thanks very much to all who are participating -- and future members will thank you too,
Joyce Waterhouse, PhD
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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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jcwat101
Research Professional
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Posted: Mon Feb 18th, 2008 00:33 |
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Just a reminder. Feb. 22 is not many days away. Try not to be much later than that. See above post for more details on deadlines (members who's only illness from the "autoimmune" list is fibromyalgia, have longer).
Thanks,
Joyce Waterhouse
Last edited on Mon Feb 18th, 2008 02:06 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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fire772
Member
| Joined: | Tue Feb 19th, 2008 |
| Location: | |
| Posts: | 1 |
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Offline
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Posted: Tue Feb 19th, 2008 18:04 |
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Not new to the site but, i must have been delete for non use
I would very much like to fill out a survry and would do it quickly as i am now not working as many hours. I am not on the MP but i continue to watch the results I have had pulmary sarcoid since 2001
peter
fire772@aol.com
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jcwat101
Research Professional
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Posted: Thu Feb 21st, 2008 00:16 |
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The 22nd is approaching... we will stretch it a bit into the weekend -- try by then.
BTW, I just wanted to mention a thank you to Reenie, who was the first person to gather data from the MP site systematically. It was used by Dr. Marshall at Karolinska and other presentations and by myself in the Townsend Letter article and it was extremely helpful to have. Now, I am lucky to have several people helping me on this and Reenie was all on her own.
So, thanks to Reenie and thanks to all who are participating now.
Joyce Waterhouse
PS I contacted Peter privately
Last edited on Thu Feb 21st, 2008 00:17 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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jcwat101
Research Professional
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Posted: Fri Feb 29th, 2008 02:12 |
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I wanted to let you know that we are still taking surveys from people with the "autoimmune" conditions mentioned in my first post in this thread.
Now, we are focusing more on the fibromyalgia patients. Amy Proal, from our data analysis team, will be sending out the slightly revised/improved version of the survey within the next 24 hours. So, if you have fibromyalgia in your signature line and have posted in the Phase One or Phase Two/Three Forums in 2006 or 2007, expect to receive the survey soon (if you haven't returned yours already).
If you have a spam filter that might block her email, you might want to change it to allow one from her email address through: amy.proal@gmail.com
We are now allowing people to do the survey over the phone with Amy, if they have difficultly in finding the time/energy to complete it in written form.
Thanks very much to everyone for participating,
Joyce Waterhouse, PhD
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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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jcwat101
Research Professional
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Posted: Fri Feb 29th, 2008 20:39 |
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If you have been diagnosed by a doctor with fibromyalgia and you were on the MP in 2006 or 2007 (at least on Phase One), but do not receive a survey by the end of the day, you might have been missed somehow. One way you might have been missed is that you may not have listed FM in your signature line.
Even if you have never posted in the Phase One or Phase Two/Three forum, we will include you if you are at least in Phase Two and have been following the MP site closely.
So, if you feel you may be a candidate for the survey, but don't receive one today, you can email Amy Proal at amy.proal@gmail.com and she can send you a survey.
Joyce Waterhouse, PhD
Last edited on Fri Feb 29th, 2008 20:40 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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jcwat101
Research Professional
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Posted: Fri Mar 7th, 2008 19:23 |
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Just a reminder -- se still are accepting completed surveys. Please participate if you have been contacted (see above posts).
Thanks very much,
Joyce Waterhouse
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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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jcwat101
Research Professional
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Posted: Mon Mar 10th, 2008 14:30 |
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If you have been sent a survey or are sent one in future, please make time to respond as it is very important. This particular survey is covering most autoimmune conditions (and fibromyalgia) as described in my first post in this thread on Jan. 13, 2008.
As I said then:
"I want to make it clear that whether or not a person is still on the MP, has been on it a very short time, or is not following it strictly, I would like them very much to respond to as many of the questions as they can. The questionnaire take into account things like compliance issues. If you have only been on it briefly, we still want you to answer the questions, since there are things that one can learn after only a brief time on the MP and will provide useful data. So, if you have received a questionnaire, it means we want your response, if at all possible."
At this time, we are only covering those who posted in the Phase One or Two/Three Forums in 2006 or 2007 or were in Phase Two or Three by that time (even if you had not been posting).
If you think you should have received one, but have not, you can contact me at: jcwat101@aol.com .
Thanks very much -- this is extremely important -- we need everyone to participate if you fit the above criteria and will make it as easy as possible for you to do so -- even allowing you to do it through a brief phone call (see above or contact me or Amy Proal ( amy.proal@gmail.com).
Joyce Waterhouse, PhD
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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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jcwat101
Research Professional
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Posted: Thu Mar 13th, 2008 03:36 |
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Still accepting surveys -- see above post.
Thanks to all who have completed them. It is extremely important that everyone participates when asked.
Joyce Waterhouse
Last edited on Thu Mar 13th, 2008 03:42 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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jcwat101
Research Professional
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Posted: Sat Mar 15th, 2008 23:42 |
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Still accepting surveys, but we won't be much longer. Please participate if you have been contacted, as it is important to have as high a survey return rate as we can achieve.
It is very important for you, your family, the advancement of science and improved patient treatment to help us collect objective data -- and we need to have as many surveys returned as possible.
Thanks so much to the many people who have completed and returned theirs.
Joyce Waterhouse
Last edited on Sat Mar 15th, 2008 23:43 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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jcwat101
Research Professional
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Posted: Mon Mar 17th, 2008 01:33 |
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For this survey, we are considering Fibromyalgia to be an "Autoimmune" condition.
Joyce Waterhouse
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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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jcwat101
Research Professional
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Posted: Thu Mar 27th, 2008 04:13 |
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We are still accepting surveys through March 31st and this is going to be the final deadline for this survey/study -- so please send yours in if you haven't already.
See this post for details: IMPORTANT - Survey Deadline Approaching -Jan.13 post :
Thanks,
Joyce Waterhouse, Ph.D.
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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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jasmine
Member in Phase 2
| Joined: | Fri May 4th, 2007 |
| Location: | Michigan USA |
| Posts: | 180 |
| Status: |
Offline
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Posted: Fri Mar 28th, 2008 04:19 |
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Hi Joyce,
I have several autoimmune diagnoses mentioned in your survey, but have not received a request. I started the MP 6/2007, and was on Phase 1 and Modified Phase 2 in 2007, and am now in Phase 2. Do I need to participate in the survey?
Thanks, Jasmine
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Lyme, autoimmune thyroid disease, CFS, FM, neuro pain, osteoarthritis, osteopenia, IBS, MCS; 125D45 6/07; PH1 6/07, ModPH2 7/07, PH2 1/08; Estradiol, Prometrium, Armour, NoIRs, low lux home, cover up, lite exp. r/t work, 25D22 1/08
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