Re: Apology and explanation of Fibro Research Study

[Guest guest]

Fibromyalgia is a woops I missed something diagnosis by the medical

community.What do you need to study?Can you underestand that it means

nothing to everyone in medicine.

tony

>

> I have found out recently that some feel that my posting about my

> Fibromyalgia Research Study is nothing more than a scam, so I

wanted

> to post this in hopes of addressing some concerns that people may

> have.

> .

> I am very new to online communities and " group postings " , so I

> apologize if I've started out on the wrong foot with anyone.

> Friends at work had suggested that posting to groups online might

be

> another way to get the word out about my project, so that's what I

> was, and am, trying to do.

> In addition, I would say that the Fibromyalgia Research Study I am

> conducting does not require you to do " guinea pig-type " things, as

> this is not a " medical-based " study. This is NOT like any other

> research project you may have taken part in before.

> I do not send out advertising from drug companies; participants are

> not asked to take certain medications or try strange treatments; no

> medications or treatments are " recommended " ; and I do not have any

> products to sell you.

> This is an independent private study and is not affiliated with any

> organization, corporation, or drug company.

> .

> I do not want or ask for your address (only the city, state, and

> country you live in); I do not want or ask for your social security

> number; I do not want your name (only the first name and the

initial

> for your last name and then I assign you a study ID#); I do not

want

> or ask for your date of birth (only the year you were born)...This

> is not about your personal information... it's about Fibromyalgia.

> .

> Participants are only asked to send information when I

> send " Sections " to be filled out, and those are done by

> simply " replying " or doing a " cut and paste " and then typing in the

> answers asked for in each Section sent.... I try to make it as

> simple as possible. I actually say " thank you " when sections are

> completed.

> .

> Along with other information from a variety of sources, the

> information received from study participants is put into my ever-

> expanding database and becomes an important factor that helps me in

> the search for treatments and to identify those that are working

for

> Fibromyalgia patients.

> .

> The ultimate goal of my research to be that of helping as many

> people as possible around the world to get relief from the

suffering

> they experience each day with Fibromyalgia and to provide

> participants with information that is organized in such a way as to

> make it easy to find depending on what each person is looking for.

> .

> I put the information I gather into a " triple-cross referenced "

> alphabetical format (by symptom, by medication/treatment, and by

> body part), update and revise it constantly and make it available

to

> Research Study participants on a quarterly basis. This makes it

> possible for a participant to find information by either (1)

> starting with the part of a body and then finding the pain or

> symptom they are experiencing (alphabetically listed) and then

> looking for treatments(alphabetically listed) under the headings

> of " Rx medications, over-the-counter medications, herbal

treatments,

> nutritional treatments and supplements, home remedy, meditation,

bio-

> feedback, yoga, etc " or (2) starting by finding the symptom or pain

> they're experiencing (alphabetically listed) and then exploring

> treatments and medications (alphabetically listed - the headings

> shown above in blue); or (3) by looking first under

> the " Medications/Treatments " section and then finding the pains and

> symptoms(alphabetically listed) those medications/treatments have

> been used for.

> .

> Also available to Research Study participants are my yearly finding

> reports and information on support groups.

> .

> As to my " background " ....

> In addition to having assisted in collecting and organizing

research

> material in the past as part of an environmental study that was

> being conducted when I was in college,

> I am (and always have been) an extremely organized detail-oriented

> person who is driven to find " solutions " to problems. . . . and

> living with Fibromyalgia has only intensified my drive to find a

way

> to help others like myself, their friends, and families.

> .

> I realized that trying to make sense out of all the articles and

> sites out there was very overwhelming. -

> especially overwhelming for the people who are suffering with

> Fibromyalgia symptoms and who need information and help the most. -

> -And having realized the need, I was driven to provide a solution

> as well as to search for " things that provide relief " to those

> suffering from Fibromyalgia.

> .

> Hence my Fibromyalgia Research Study project that I will be

> conducting for the rest of my life. (I'm now in my 50's)

> .

> The research study being divided into 4 separate groups of people -

> 1- those who have an actual Fibromyalgia diagnosis;

> 2- those who have had a doctor tell them that Fibromyalgia

> is " suspected " ;

> 3- those who have seen a doctor (or doctors) but the doctor(s) have

> not yet stated Fibromyalgia as a possible diagnosis;

> 4- those who have not seen a doctor at all, but who themselves feel

> they may have Fibromyalgia.

> .

> In regards to showing which treatments/medications are effective

vs.

> ineffective, this is done using a percentage based scale that is

> derived from the information that I ask for and gather from the

> Research Study's participants.

> .

> I do ask participants to pay a $25. participation fee to be part of

> this research study, but do want to point out that the $25. (1-time

> only) fee is much less than anyone would pay for a reference book

of

> much less size at a regular book store or online, or for an e-book

> and is basically a life-time pass for access to a very large amount

> of information designed to be easily understood by the everyday

> person suffering from Fibromyalgia. And the reason I ask for

> participation fee is because this is not funded by some big drug

> company or corporation or institution of some kind. It's my

special

> life-time project and I don't have some big bank account or lottery

> winnings. I ask for this small fee to fund what I'm doing.

> .

> If you have other questions, or would like to participate, please

> mail me at fibro_study@...

> -thank you for taking the time to read what I've written.

> . - susan

>