All-
The current thinking re the CPS is that the b-m.org site will list a continuous page listing participants followed by several identical criteria, for example d.emerson- mm 2/94- LEF curcumin- 600 mg a day- no side effects- normal FLC tests- something like this. A questionnaire will be sent to all who wish to participate to establish the basic criteria. Each participant will then get his/her private password to edit/add info to his/her section. Members and site visitors can read only.
I am looking for suggestions as to the basic criteria for all paticipants to list- I think that it is important to keep this common criteria concise- visitors can scroll up and down the listing to compare results- the suggestion has been made for each person to have a "read more" link to another page where he/she can write further content.
At this point, I am thinking of name (real or screen name), beginning mm diagnosis, therapy- curcumin dose, brand name, side effects, diagnostic testing, current mm diagnosis.
Suggestions please-
David
I think we should also put the DATE when we started taking curcumin. I have been taking it for 16 months plus, others have been taking it for longer etc. We should also make sure that "therapy" is understood as HOW we take it, that is, with or without fish or flaxseed oil or quercetin or whatever. I think that is crucial, since we all have our own ideas on how best to take curcumin. And perhaps this way we will be able to see some common threads, which would be helpful. I agree we should keep it concise. That's why it would be good to have an agreed-upon questionnaire format. And an "other" box, where we CPs can add anything we think is relevant, without going overboard. What exactly do you mean by "diagnostic testing"? Would that be where we would put our Ig count or....? We need some sort of system whereby we can compare our pre-curcumin markers to our present markers. Since we all have different types of MM, that may be tricky if not impossible. Any ideas on how to simplify the process? Thanks.
Margaret
I'm not a scientist, but I wonder if it would be helpful to set up the study according to the type of MM of each participant (all IGGs together, IGAs together, etc.) We could further refine the study by indicating the type of fat used, whether bioperine or another heated substance is used (e.g., ginger), and whether any medicines are also being used. I can visualize using a matrix of some kind, to make it easy to see what people have used and what kinds of results have been achieved.
Margaret and all-
I agree with your comments and concerns. Keeping each CP's entry/explanations/discriptions concise is the best way for visitors to scroll up/down and possibly observe any common threads (I think). Therefore, my thinking for both the questionnaire and the CPS format is as follows-
name- diagnosis- therapy- side effects- diagnosis- issues- read more-
David- non-mm'94- 12 mo.600mgxday- none- norm FLC- none- link to other-
Name is either real or screen name. Diagnosis is one's original mm diagnosis. Therapy is curcumin, how one takes it. Side effects, good or bad. Diagnosis is recent testing, m spike, whatever. Issues is whatever people want to say in the limited space and read more is a link to another area for the CP to write whatever he/she wants to write- within limits- a paragraph or two. Comments please.
David
One more thing-
I believe that in order to keep the study results concise, there will be limits to what a participant can write in each individual box/cell- the "read more" link will give each CP the place to elaborate.
I'm trying to think like someone who is interested in viewing the results of the study without knowing anything about curcumin- I see a name, the person's original diagnosis, what they take, the side effects they experience if any, their measurable results if any, and issues if any. If i am curious about this person, I click the "read more" link.
I plan to implement several of these sorts of studies and i am interested in what this list thinks about this format and worth. Initially, I am thinking about a Curcumin study, a memory loss/chemo brain study and a TNFungus study.
All-
My two posts above re the CPS got me thinking about how this listserv differs from the acor mm and mma listservs. Galen and b-m.org's missions are to pursue the spectrum of health issues we face. By discussing conventional therapies like thalidomide/dex, supplementation like curcumin, lifestyle issues, nutrition, even health issues like toe nail fungus, and the above mentioned studies, I believe that this list will provide more feedback and help members and address the mission accordingly.
David
I think this is good, David. We can try it, and see how it works out. We can always ask for modifications, right? Once the page has been set up, I will contact my list of curcumin-takers, so we have a bunch of people filling in the info! This is very exciting!
Thanks, Margaret
Cathy, I think that is spot on. David, could we do that? I mean, group the IgAs, the IgMs and IgGs together? As for HOW we take it (and other supplements), perhaps we could put that under "issues." Or could we have another heading, such as "other supplements"? I suppose it would help if we could actually SEE and work on an actual sheet. It's hard to talk about something that is still abstract. For me, at any rate.
Margaret
Florence, Italy
Cathy, Margaret-
I agree that mm dx will be grouped together- iga, idm, igg, etc- yes, how we take curcumiin should be under "issues." Yes, we can make changes after but effort put into the original design now will save time and money later. Thanks
David
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