Apology and explanation of Fibro Research Study

[Guest guest]

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