Re: Re: Apology and explanation of Fibro Research Study

[Guest guest]

Fibro has IMO become a

throw-away diagnosis for rheumatologists to pigeon-hold people. There

is even something called NIPS (Non-Inflammatory Pain Syndrome) for the

people who don't have the fibro "tender points". Nice way of saying

it's all in your head. I got the latter diagnosis a few years back,

said screw it, and on my own figured out that it was the statins my GP

was feeding me producing myalgia. Quit those and within a week I was

fine. I was one of the lucky ones.

The above is not to say that FM isn't real or doesn't cause real

suffering -- but I am saying that FM has been co-opted by the rheumies,

who don't truly believe in it but see a lucrative stream of repeat

business to be had.

--Bob

dumbaussie2000 wrote:

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

>

[Guest guest]

So right, Bob. When the famous rheumatologist from Riverside didn't get a positive mycoplasma i.d. for me from Immunosciences, he told me that I had "fibromyalgia" and needed better sleep and expensive supplements which of course he provided. This dx was given before I even had FMS symptoms. All he had to go on was tender points and severe fatigue and brain fog. Plus, if his entire dx was going to be based on the immunosciences results, why did he use his in house x-ray machine to irradiate every inch of my body from the neck down? Completely unnecessary except to make him a few thousand dollars richer. It really disgusts me that people make money off of completely useless dx's like FMS. penny Bob Grommes <bob@...> wrote: Fibro has IMO become a throw-away diagnosis for rheumatologists to pigeon-hold people. There is even something called NIPS (Non-Inflammatory Pain Syndrome) for the people who don't have the fibro "tender points". Nice way of saying it's all in your head. I got the latter diagnosis a few years back, said screw it, and on my own figured out that it was the statins my GP was feeding me producing myalgia. Quit those and within a week I was fine. I was one of the lucky ones.The above is not to say that FM isn't real or doesn't cause real suffering -- but I am saying that FM has been

co-opted by the rheumies, who don't truly believe in it but see a lucrative stream of repeat business to be had.--Bobdumbaussie2000 wrote: 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>

[Guest guest]

I agree with all that's been said. Fibromyalgia is a symptom, and

should not be a diagnosis. That being said, I suppose you could do a

study about what seems to help people. I doubt that it will add any

new understanding though. What's needed is heavy-duty medical research.

- Kate