Volunteers wanted for Study of CSF proteins in CFS

[Guest guest]

***IMPORTANT***

This study has a lot of promise, and a lot of good science behind it. They

are in need of volunteers in order to make this study a success. In

particular, healthy volunteers are needed as a control group in order for

this study to have enough value.

Please look over the information that follows, particularly if you live near

the facility at town where the study is taking place. This study has

great potential for defining FM/CFS, ME as serious neurologic illnesses.

Shari

Shari Ferbert

President, AFFTER

Advocates for Fibromyalgia Funding,

Treatment, Education and Research

www.affter.org

Re: [CFS-DOC] Volunteers wanted for Study of CSF proteins in CFS

Hello Priscilla, CFS-DOCS and

Co-Cureans, 

On a personal and professional note I have participated in this study, and

consider it to be

important as a future tool for definitively characterizing FM/CFS, ME as a

serious neurologic

illness. Dr.Baraniuk is an excellent scientist, who objectively analyzes

his data, and the

study is double-blinded so no patient will have individual information

available. Still, they are approaching 20 patients tested, and I have no

doubt they will reach their goal of 50.

The problem is the recruitment of healthy controls. Finding healthy people

willing

to have a spinal tap is not easy, but essential for the publication of the

study. As an

anesthesiologist, I would be willing to address any concerns anyone

considering

participating in the study has re: the tap. (In the future, I may be able to

answer a more

broad spectrum of questions about the entire study.) Dr. Baraniuk is very

busy and

would appreciate any help re: patient or healthy control referrals.

Sincerely.

Barbara Cottone M.D.

> On Mon,

March 3, 2008 11:39 am EST, Priscilla Hall, MD wrote:

>

>

> Volunteers wanted for town Study (led by Dr Baraniuk)

>

> Dr. Baraniuk and Dr. Murugan K. Ravindran are looking for volunteers to

> come to town for a study comparing the types of proteins in the

Fluid around the brain (cerebrospinal fluid) that are present in Chronic

Fatigue Syndrome. Dr. Baraniuk has a presentation at

http://videocast.nih.gov/Summary.asp?File=14263

[AOL: " This external link will open in a new window " Here]

Amongst other things, Dr Baraniuk was lead author of " A chronic fatigue

syndrome - related proteome in human cerebrospinal fluid "

http://www.biomedcentral.com/1471-2377/5/22

[AOL: " This external link will open in a new window " >Here].

There is a consent form which gives a lot of further details - this is

obtainable from Dr. Ravindran (contact details below)

-----------------

>

WANTED VOLUNTEERS

>

-----------------

> ³Proteomics of Cerebrospinal Fluid in CFS²-

IRB# 2006-481

>

> Who can participate?

> Ø Women

with Chronic Fatigue Syndrome, Fibromyalgia, Multiple Chemical

>

Sensitivity, Irritable Bowel Syndrome, Interstitial Cystitis and other

>

related conditions.

>

> Ø Healthy women over 21 years old

are also invited to participate.

>

>

> What is the

purpose?

> Determine the cause(s) of Chronic Fatigue Syndrome by comparing

the types of

> proteins in the fluid around the brain (cerebrospinal fluid)

that are

> present in Chronic Fatigue Syndrome but absent from healthy

women.

>

>

> What is involved?

> Ø

Participation includes a screening visit and an overnight study

> visit.

>

> Ø Volunteers must be willing to have a lumbar puncture

(³spinal tap²).

>

> Ø The overnight study visit

includes a 24-hour urine collection, blood

> tests, lumbar puncture, cheek

swab to examine the genetics of CFS, allergy

> tests, pain sensitivity

testing, and a questionnaire

>

> Ø Financial compensation

and parking validation are provided

>

Please call:

Dr. Murugan K Ravindran

202-687-8231

cfsresearch@...

for more information and/or to set up an appointment to come to

town.

This ad has been approved by the town University Institutional Review

Board.

Proteomics of Cerebrospinal Fluid in CFS²- IRB# 2006-481