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Dr Trevor Marshall
Research Team
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Posted: Mon Jan 14th, 2008 03:08 |
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Joyce has sent some of our members a questionnaire. It is designed to collect some data which we can use, in a general way (nobody would be identified individually), to support the papers which ARF folk are going to present at conferences during 2008.
Joyce will let you know the specific details of what we need.
I know that the deadline for responses is getting close, so, if you have received a questionnaire, please set aside some time to help us with your answers.
Trevor
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jcwat101
Research Professional
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Posted: Mon Jan 14th, 2008 03:17 |
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[filelink]
Note, March 27th: The deadline has been extended -- the survey deadline is March 31st. Please participate as this is an extremely important Autoimmunity Research Foundation project.
Some of the AI diagnoses that have been added to the list are Ulcerative Colitis, Anti Phospholipid Syndrome, Lichen Sclerosus and Undifferentiated Connective Tissue Disorder.
Joyce
I need help with a project I am working on that Trevor has mentioned. As you will read below, I am gathering data on response of certain conditions to treatment with the Marshall Protocol (MP).
I would appreciate it if everyone reads this post, whether or not you think it applies to you at first.
I have sent out questionnaires to about 250 people who have posted in the Phase One or Two/Three Forums in 2006 or 2007 (or who had posted that they had reached phase 2 or 3 in 2005) who have one or more of these conditions:
<<List of "Autoimmune" Conditions
The list of "autoimmune" or possibly autoimmune for the purposes of this questionnaire are the following: Addison's Disease, Ankylosing Spondylitis/Spondyloarthritis, Amyotrophic Lateral Sclerosis, Celiac Disease, Diabetes Insipidus, Diabetes Mellitus Type I, Diabetes Mellitus Type II, Crohn's Disease, Fibromyalgia, Mixed Connective Tissue Disease, Multiple Sclerosis, Myasthenia gravis, Polymyalgia Rheumatica, Psoriasis, Psoriatic Arthritis, Reiter's Syndrome (Reactive Arthritis), Rheumatoid Arthritis, Scleroderma, Sjogren's Syndrome, Systemic Lupus Erythematosis, Thyroiditis (Autoimmune, Hashimoto's or Graves Disease), Uveitis.
Note: If you have another autoimmune condition that has been diagnosed that is not listed you can also assess that one as well. However, for this particular survey, we are not including sarcoidosis in the list of "autoimmune" conditions, due to time constraints and the availability of previously collected data. >>
I know some people post rarely and may have changed email addresses or they don't check their PMs much, so if you know anyone with one of these conditions, who you think may not stay in close touch with the MP board, you might remind them to check to see if they have received the questionnaire. When I found an email address, I used it, otherwise I used a PM to send the questionnaire. I will be extending the deadline a few days past the deadline of Jan. 15, 2008. I sent most of them out the week before Christmas, though I sent a few later.
For people who's only diagnosis from the list above is fibromyalgia, they can wait longer to return their questionnaires -- Feb. 15, 2008. Their data is to be used for a purpose other than this current paper and I don't need it as soon.
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.
Also, I want to remind people that in some questions it asks you to assess your autoimmune condition or conditions only ("autoimmune conditions" for the purposes of the survey are listed above). You may assess changes in other conditions in your answer if you want to, but you don't need to. And there are some questions later in the survey that also ask about other non "autoimmune" conditions/symptoms.
If you have a diagnosis listed above, and you think you should have received a questionnaire and haven't, let me know. If I don't answer at jcwat101@aol.com, then try my other email address, at kzd1000@sbcglobal.net . Very occasionally, AOL has trouble that prevents emails from getting through.
A couple days after the Jan. 15 deadline, I will send out reminders to those I haven't heard from. However, I will wait until Feb. 15 to send reminders to those who's only "autoimmune" illness is fibromyalgia, since I will be dealing with that data later. Sending out reminders will be time consuming, so if you can remind people you know personally who have one of these conditions and have posted in those forums in 2006 or 2007, that will be much appreciated.
I know people will be eager for results, but you will have to be patient. This project is turning out to be much more time consuming than I thought it would be and I only have a limited proportion of my time I can devote to it, so it may be a number of months from now before any results will be made public. For those who want data now, you can see the previous data that was summarized (for a few diseases) in:
http://winmlm.neostrada.pl/mp/townsend/Townsend_Letter_May2007.Part2.pdf This is the data that Dr. Marshall presented at a conference in Karolinska a while back.
Your cooperation is much appreciated by myself, the MP staff, and will be appreciated by future members with these diseases.
Joyce Waterhouse
<<Study of Responses to the Marshall Protocol (MP) in members with So-called "Autoimmune" Conditions, Including Fibromyalgia -- Questionnaire (Your participation is very important -- please return by January 15, 2008)
Dr. Marshall has encouraged me to write an article about the Marshall Protocol and Autoimmunity for a peer reviewed scientific journal and to submit an abstract for the International Autoimmunity Conference in Porto, Portugal next fall. As part of this, he has authorized me to send a questionnaire to members with autoimmune conditions who are on the MP. The data may also be used for other articles, presentations etc... For the purposes of this survey, Fibromyalgia will be considered as an "autoimmune" condition.
Please fill out the questionnaire and return it to me by January 15, 2008. I prefer receiving it via email at ( jcwat101@aol.com ) but if not, PM is acceptable. It is very important to our research efforts that you participate by filling out the questionnaire. You might want to wait until after the holidays to reply, since you may have had more time to notice improvements over the holidays, due to a tendency to slow immunopathology so as to participate more in holiday activities.
Optional questions are ones we would greatly appreciate your answers to as they will further an understanding of the MP and help our research efforts. But we are making them optional so that no one will fail to fill out a questionnaire due to feeling it is too time consuming or difficult. For some of the sicker members, it may be helpful to have a family member help you. You may answer some of the optional questions and skip others, but if you are able to, we really hope you will try to answer all of them. Please send the questionnaire in by January 15, 2008, if at all possible. Some late questionnaires may be accepted if this is unavoidable (if you can, try to let me know if you are going to be late in turning it in).
If you do not fill out the rest, please at least answer questions 1 through 9. We hope you will feel that the help you have received from the MP's volunteer staff and your desire to help other members who suffer from your condition will inspire you to do your best to participate in this survey to the degree you are able.
And whether or not you do still post on the MP site, we hope you will continue to maintain updated contact information (email address) or check periodically for PMs so that data on your continuing experience with the MP can be used for future research.
Just as with your participation on the MP site, by participation in this questionnaire, you are agreeing to allow the use of the data and information you provide for research purposes.
Thanks,
Joyce Waterhouse, Ph.D.
screen name: jcwat101
Last edited on Sat Mar 29th, 2008 00:15 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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Grace
Advocate
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 388 |
| Status: |
Offline
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Posted: Mon Jan 14th, 2008 03:49 |
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Joyce,
I got an email on the 23 /12 saying .....
jcwat101 has sent you a private message titled "Important MP Survey -- look at soon/ Joyce Waterhouse, Ph.D."...... yet nothing in my PM box?
Sorry I didn't bring it to your attention sooner  ....Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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jcwat101
Research Professional
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Posted: Mon Jan 14th, 2008 04:08 |
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Grace,
Sorry something must have gone wrong. I will send you another and if you don't find it in the next few minutes, you can contact me.
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 Jan 14th, 2008 19:51 |
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I find I have missed a few people who I thought I sent the questionnaire to, so if you think you have been missed, be sure to contact me.
Also, there are some people who have not included in their signature line (or otherwise mentioned prominently) diagnoses that are in the above "autoimmune" list. I relied primarily on signature lines to find diagnoses.
So, if you fit that description, or know of someone else who has one of these conditions, but does not have it in their signature line, I can be contacted at jcwat101@aol.com
This also serves as a reminder to try to put all your diagnoses in your signature line (or abbreviations for them). Just after reading this might be a good time to check your signature line to see if this is the case and if it is up-to-date.
Joyce Waterhouse
Last edited on Mon Jan 14th, 2008 19:56 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: Tue Jan 15th, 2008 14:06 |
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I have said that I am surveying people with the diagnoses mentioned above, who have posted in the Phase One or Two/Three Forums in 2006 or 2007 (or who had posted that they had reached phase 2 or 3 in 2005).
I'm broadening it just a little to include more early adopters, so that if there is anyone who has followed the MP board pretty closely over the years and reached phase 2 or 3 at any time (whether or not improved and whether or not still on the MP), but has not posted in the above forums at all, they are still eligible for this survey. I figure that there may be a few people who only posted back in the days of sarcinfo and/or decided they did not need to post in the MP forum or didn't post for privacy reasons.
The only thing is, that I can't find these people in the way I found other people, by going through the forums systematically. So, people in this category will have to contact me. Or if anyone reading this, knows of any people like that, they can contact me and tell me about them and I can send them a survey and/or tell you can tell them to contact me if they are willing to participate.
But remember, it is only the diagnoses listed above that we are covering at this time in the survey. Eventually, we hope to cover all diagnoses in a survey, but for now, this seems to be about all I can handle.
Joyce Waterhouse
Last edited on Tue Jan 15th, 2008 14:07 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: Wed Jan 16th, 2008 00:23 |
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Although the deadline on the survey says Jan. 15, 2008 (today), I just want to remind people that I am still taking surveys for at least a few more days. If you can't return it in the next few days (like by Sunday or Monday), you could probably still send it in, because I probably will still take more even later, depending on various circumstances, even for a couple weeks or more after today. But if you are going to be later than Monday or so, it would be preferable for you to let me know you plan to send it in.
For those who only have Fibromyalgia in the list of diseases above, the deadline is extended to Feb. 15, 2008.
You are encouraged to help me also by reminding your friends, as I discuss above. And we want you to send it in even if you don't think you can draw firm conclusions about how the MP is affecting you. There are a number of questions that will be of use even for people who have been on the MP only briefly.
Thanks,
Joyce Waterhouse
Last edited on Wed Jan 16th, 2008 00:28 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: Wed Jan 16th, 2008 03:02 |
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By the way, I want to thank very much all the people who have sent them in so far 
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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Linda J
Member in Phase 3
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Posted: Wed Jan 16th, 2008 16:41 |
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Joyce,
Is there a way to confirm that you have received a survey? I sent mine, but haven't had any response back, so I can't be sure whether you got it or not. If not, then I can send it again if necessary.
____________________
Lyme thyroiditis IBS MVP PTSD MCS 125D63 SAM-e Claritin probiotics psyllium silymarin magnesium 5htp GABA homebound low lux NoIRs 25D19 (Oct07)
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jcwat101
Research Professional
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Posted: Wed Jan 16th, 2008 19:49 |
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Linda,
I did receive yours. I have not done acknowledgement emails, generally.
One will know that I did not receive your survey if you get a reminder email or pm from me on Sunday or Monday, otherwise, you can assume I received it.
Joyce
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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: Wed Jan 16th, 2008 22:12 |
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By the way, for people who do include their real name on the questionnaire (it's an optional question) you need not worry about me making your name public -- you will just be a number in the data set.
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 17th, 2008 19:30 |
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Reasons behind Choice of Diseases to include in this Particular Survey
A few people have asked my why I am not including a particular disease as a focus in the survey at this time (eg., CFS, sarcoidosis, Lyme etc...). The short answer is that I had to limit the diseases covered due to time constraints. I am a volunteer and I can only devote a certain amount of time to this activity due to other obligations.
Actually, I was only going to focus on diseases generally recognized to be "autoimmune" because that is what will supply the data necessary for the paper I am preparing and the conference presentation (see above). I did not include sarcoidosis, because there are so many members to cover and because we already have data that was presented at Karolinska and a published article in the Autoimmunity Reviews, and I can cite that data.
Dr. Marshall said that he would like me to include Fibromyalgia for some presentations he will be making, in particular for Karolinska in the Spring. Apparently, it is a good diagnosis to look at, since there is a lot less controversy surrounding Fibromyalgia and the diagnostic criteria used to diagnosis it than there is for certain other diseases (e.g., Lyme and CFS).
So, I want people to know we aren't "slighting" their particular diagnosis, but are just trying to focus our limited time and resources in a way that will lead to the most benefit for all in the long run. We will cover more diagnoses and progress farther in looking at the data over time to the best of our ability, as time and funding allow.
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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Dr Trevor Marshall
Research Team
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Posted: Fri Jan 18th, 2008 04:50 |
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If you were chosen for the survey, please make sure you get the questionnaires back on time
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jcwat101
Research Professional
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Posted: Fri Jan 18th, 2008 14:40 |
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And if for some reason, you will not be returning the survey, I would appreciate your letting me know why, as that may help in designing future surveys.
If you don't choose to explain why, I would at least appreciate acknowledgement that you have received the survey, so I will know that is not the problem.
As mentioned above, we still want you to return the completed survey (particularly the first 9 questions), even if you feel you have been on the MP for too brief a time to know for sure how you are responding. There are questions that you can answer that will be helpful regardless of that.
I am hoping I will still get a lot more surveys this weekend (I am extending the deadline for a few more days). If you don't get a reminder from me by Monday, it means I have received your answers (unless there is a problem with email/pm between us). In this survey, we are not including health professionals posting progress only in the Private Section.
Also, remember that if Fibromyalgia is the only diagnosis you have, from the list in my first post, the deadline has been extended to Feb. 15, 2008 and I hope you will respond by then.
If you have not listed your email address in your profile, check for a PM from me.
Joyce Waterhouse
jcwat101@aol.com or if you prefer to send me a PM, that is O.K. too
Last edited on Fri Jan 18th, 2008 14:55 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 Jan 18th, 2008 16:17 |
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If you are not familiar with PMs, see this information (more info. available at: How to send a private message - How to Register and use this Study Site - ABOU
<<To enable the private message system
Go to my account and the preferences tab and make sure you have this preference checked:
- Enable private messaging
To find your messages
If you put your email address in your profile, you will receive an email when you have a new message. To find your message, click No new messages at the top right of each study site page next to the Logged in As.>>
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: Sun Jan 20th, 2008 18:24 |
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Try to get your completed questionnaires in today or tomorrow, if you have one of the disease in my first post in this thread (members who's only diagnosis from that list is Fibromyalgia can wait until early Feb).
It is O.K. if you only answer the first 9 questions, if you aren't up to all of it. Or even the first 5 or 6 -- and you might ask a family member to help you if you are having problems with brain fog.
If you can't locate your survey questionnaire, you can PM me or email me at: jcwat101@aol.com
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: Tue Jan 22nd, 2008 03:14 |
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I'm going to start sending reminders tonight to those who I sent surveys too (see my first post to see if you are eligible) and who I haven't heard from yet. I should finish sending them, hopefully, by tomorrow morning (California time).
If you think you should have received one, based on the criteria mentioned in the foregoing posts, but have not, you can contact me.
Joyce Waterhouse
jcwat101@aol.com
Last edited on Tue Jan 22nd, 2008 03:17 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: Sun Jan 27th, 2008 00:07 |
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I sent out my reminders to those who have at least one illness besides Fibromyalgia from my list of "autoimmune" conditions. The revised deadline is Jan. 31st, just a few days away -- so don't forget if you still haven't sent it in.
I may be still accepting a few questionnaires after Jan. 31st -- enquire to see if I am still taking them, if you must be late for some reason.
Thanks very much to the many people who have sent their answers in. Other members will be grateful to you for your contributions as "pioneers" in this effort.
Joyce Waterhouse
jcwat101@aol.com
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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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AmyEliz
Member in Phase 2
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Posted: Mon Jan 28th, 2008 14:43 |
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Hi Joyce,
I received a questionnaire from someone via email about two months ago. I guess it was from you, memory gets fuzzy. Could you please let me know if you received it? If you do not have the time, I understand.
Sincerely, Amy
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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jcwat101
Research Professional
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Posted: Mon Jan 28th, 2008 15:22 |
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Amy,
I did receive your reply
Thanks,
Joyce Waterhouse
____________________
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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