This is our page on clinical trials for chronic fatigue syndrome,
fibromyalgia, multiple chemical sensitivities, Gulf War illness, and
related disorders. Studies can center around a treatment
for improving overall functioning or a specific symptom, attitudes
about illness by sufferers or towards them, coping mechanisms, general
data gathering and research, or other things. The first section deals with factors to consider in
deciding whether a clinical trial is right for you. The next section
contains links for US national listings of trials and studies, including
several specific to these disorders.
Finally,
a special section has selected current clinical trials
in our home region of
Washington DC, Northern Virginia, and Suburban Maryland, as well as
other selected national and international clinical trials. We
especially like to include those that can be done by mail or web
questionnaire since more accessible (no travel, expense). Inclusion of
a clinical trial in our
listings is for informational purposes only and should not be read as a
recommendation that you should participate in that trial or that we
agree with a study's premise. In
considering whether a particular clinical trial is right for you,
please talk with the contact person for that trial, consult with your
health care provider, and be sure to read the materials listed under
the "Factors to Consider" section of this page.
Factors
to Consider In Deciding Whether to Participate in a Clinical Trial
Links to US National
Listings of Clinical Trials
Selected
Current Clinical Trials
- Washington, DC Metro Region aka The US Capital, Northern VA, & some Maryland
- USA beyond the Capital Area - National - Includes Questionnaire Studies
- International - Includes Questionnaire Studies
Selected Capital Area CFS/ ME & FMS & OI Studies
Let us know if you have information about a current
clinical trial relating to CFS, FMS, or overlapping disorders in the
Washington DC, VA, MD metropolitan area.
1 (DC Area) James Baraniuk, MD, at Georgetown receives NIH funding for CFS Research
2 (DC Area) Alben Goldstein, MD, conducting FM Xyrem® trial in Arlington, VA
3 (DC Area) Mary Lee Esty, LCSW-C, PhD - Flexyx Neurotherapy, Bethesda, MD
1) (DC Area) Dr. Baraniuk at Georgetown receives NIH funding for CFS Research
October 2006, Receiving NIH Funding:
James Baraniuk, M.D., Georgetown University, Washington D.C., has found
that despite its diverse clinical syndromes, the CFS proteome (the
entire group of proteins in an organism or system) is the same,
suggesting a strong relationship with malfunctioning of the central
nervous system. Dr. Baraniuk developed the first predictive model of
CFS based solely on objective data and he now proposes to recruit a new
group of CFS and Healthy Control subjects to determine if the proteins
in their cerebrospinal fluid will be a predictive marker of the
spectrum of CFS symptoms. There is a high probability that these
methods and markers will be of diagnostic value and will be useful for
assessing changes over time in disease severity and treatment effects.
Study ad, added 9/6/07. Dr Baraniuk visited group 9/15/07. Still recruiting 3/2008....
Do you or someone you love have Chronic Fatigue Syndrome (CFS)?
We
have performed lumbar punctures (“spinal taps”) on CFS,
fibromyalgia (FM), and Persian Gulf War Illness (PGI) subjects and a
group of healthy volunteers. The CFS and related groups had a unique
set of proteins in the fluid surrounding their brains. This is very
exciting because it is strong evidence that CFS, FM and PGI are
“real” diseases. The proteins we found may turn out to be
diagnostic markers for these syndromes, and become part of a test for
CFS/FM/PGI illnesses. They also offer insights into the molecular
mechanisms that go awry, and point towards potential treatments. First,
however, we must perform more spinal taps on women with CFS and healthy
control women.
We offer a new, paid, clinical research
study with a 1 night stay at Georgetown University Medical Center,
lumbar puncture and other, more simple tests. We are recruiting 50
women with CFS and 50 healthy women who want to help find a cure.
Contact us at 202-687-8231 or by e-mail at cfsresearch@georgetown.edu .
Healthy
women are also invited to participate by having lumbar punctures.
Healthy volunteers are essential to be able to identify new,
significant diagnostic markers that can distinguish between chronic
fatigue syndrome and a normal state of health. These differences will
point towards the cause(s) of chronic fatigue syndrome and potential
new ideas about treatment and diagnosis.
All lumbar
punctures will be performed in the Interventional Neuroradiology suite
by skilled doctors and their staff. This special step is being taken to
make sure that the procedure is performed in the safest possible
fashion, and with the lowest possible number headaches or other
complications.
2) (DC Area) Alben Goldstein, MD, participating FM Xyrem® trial in Arlington, VA
I
am conducting a study for Jazz Pharmaceuticals involving the use of
sodium oxybate (XYREM). This is a phase III, randomized trial,
with a placebo arm. I am seeking five to seven fibromyalgia
patients with sleep problems, who might benefit from such a
study. They must be over the age of 18. They may be women
or men. They must be willing to discontinue current medications
in favor of the sodium oxybate. The study has several phases, but
lasts about 12 weeks. Patients, who do well and wish to continue,
may enroll in a long-term safety study for about a year.
This
trial is industry sponsored (Jazz Pharmaceuticals). All evaluations,
treatments, medications, etc., in conjunction with the study, are
provided free of charge. If you or your support group knows any people
who might be interested, or would benefit from this, please feel free
to contact me at my office.
- Alben Goldstein, MD. Arlington, VA. Rheumatology. 703-379-5828.
A Phase III, Randomized, Double-Blind, Placebo-Controlled, Safety and Efficacy Study of Xyrem® in Subjects With Fibromyalgia
Enrollment Date: September 7, 2006
Closing Date: April 2008
Completion Date: December 2008
The
trial is a randomized, double blind, placebo controlled, parallel group
trial in subjects diagnosed with fibromyalgia in accordance with the
American College of Rheumatology. Total duration is up to twenty-one
(21) weeks of trial participation. Subjects will undergo a screening
and withdrawal/washout period lasting up to five (5) weeks combined,
followed by baseline period lasting one (1) week. Total treatment
duration will be fourteen (14) weeks followed by one (1) week safety
follow-up post treatment period. During the screening and withdrawal/
washout period, no study medication will be given; however rescue
medication acetaminophen (up to 4 grams per day) will be allowed.
Eligibility Requirements:
The
study will enroll both males and females, 18 years of age or older, who
meet the American College of Rheumatology (ACR) diagnostic criteria for
fibromyalgia.
http://www.clinicaltrials.gov/ct/show/NCT00371137?order=25
3) (DC Area) Flexyx Neurotherapy & Surface Electromyography Treatments for FM
Principal Investigators: Mary Lee Esty, LCSW-C, PhD and Emily Perlman, MS, BCIA
Sponsor: Neurotherapy Center of Washington
7920 Norfolk Ave. #200
Bethesda, MD 20814
(301) 652-7175
PURPOSE: Participants are invited to join in this
research study because they have fibromyalgia. The purpose of this
study is to determine whether a relatively new treatment method called
the Flexyx Neurotherapy System (FNS) is effective for reducing
fibromyalgia symptoms. About 15 persons will take part in this study at
the Neurotherapy Center of Washington. If you agree to join and do not
withdraw later, you will be in this study for about 10 to 11 months
depending upon your group assignment.
PROCEDURES: First, you
will have a brief interview to see if you meet the initial criteria for
being included in the study. This will take about one hour and will
include a history of your medical condition and some questions about
your emotional status. Your physician will be asked to confirm the
diagnosis of fibromyalgia as part of acceptance into the study. If you
meet the criteria, then an evaluation of your brainwave
(electroencephalogram or EEG) functioning (also called
“mapping”) will be conducted. In addition, an evaluation of
certain muscle activity patterns (by means of procedures called surface
electromyography or sEMG) will be conducted. You must consult your
physician before, however, because you are asked to be off of
medications for pain, depression, and/or anxiety for 48 hours prior to
the evaluations. You and your physician can decide if that is possible,
and we can discuss your particular situation with you. These evaluation
sessions will take about 2½ hours.
After meeting EEG
mapping criteria and the sEMG evaluation criteria for acceptance into
the study, you will be asked to complete some research questionnaires
about your symptoms, including pain, cognitive issues (e.g., attention,
concentration, memory problems), fatigue, mood, and sleep, and activity
patterns. You will be asked to complete the research questionnaires
every five sessions and at the 3- and 6-month follow-up sessions. These
will take, at most, one hour.
On a random basis (like the flip
of a coin), you will be assigned to one of three study groups. One
group will undergo the FNS therapy only. The other two groups will
receive eight sEMG treatments either before or after receiving FNS
treatments. All groups will receive 28 treatment sessions regardless of
assignment. FNS sessions will occur about 1-2 times per week and sEMG
sessions will occur only one time per week.
Over a period of
10 to 11 months, your time commitment will involve the following. In
addition to the screening procedures described above, there will be 28
one-half hour weekly or bi-weekly treatment sessions over a period of
approximately 3½ to 4½ months, depending upon your group
assignment. Immediately at the conclusion of the treatment sessions and
again at 3- and 6-month follow-up, there will be a repeat of the EEG
mapping and sEMG evaluations, and you will be asked to again complete
the same questionnaires (an additional one hour maximum).
For more information on this, call 301-652-7175 and ask to speak to a therapist.
Selected National CFS/ME, FMS, POTS/OI, & similar Trials
Section Contents, click for details.
1) Pregnancy in Fibromyalgia Questionnaire Study
Temple University in Philadelphia, PA. Long distance participants welcome.
2) CFS/ME in Children - Questionnaire
DePaul University, IL. Long distance participants welcome.
3) Double Blind Trial of Duloxetine in CFS
University of Cincinnati, OH. [Brand names of duloxetine are Cymbalta, Yentreve.]
4) Psychosocial Treatment Trial for Multi-Symptom Illness, FM, CFS, IBS, TMJ, MCS
Robert Wood Johnson Medical School, central NJ.
5) Insomnia Medication Trial or FM Patients
Robert Wood Johnson Medical School, central NJ.
6) Study of Ampligen in Chronic Fatigue Syndrome: Recruiting Once Again
Incline Village, NV; Salt Lake City, UT; Charlotte, NC.
7) Anti-viral drug valganciclovir to be tested on CFS
Stanford University, CA.
8) Effectiveness of Acupuncture in Relieving Pain Due to Fibromyalgia
University of Michigan’s Chronic Pain and Fatigue Research Center, Ann Arbor, MI.
9) Identifying the possible pathophysiological mechanism of the
postural tachycardia syndrome (POTS)
Center for Autonomic and Peripheral Nerve Disorders
Beth Israel Deaconess Medical Center, Boston, MA
10) A Study of Genetic Risk Factors That May Be Associated
with Chronic Fatigue Syndrome (CFS)
University of Illinois at Chicago and Tufts University Added May 23, '08
Long distance participants welcome.
11) Chronic Fatigue Study Questionnaire Study
University of Utah
Added Oct 2, '08
Long distance participants welcome.
12) Vulvodynia - Cost of Illness Survey
National Vulvodynia Association
Added Oct 2, '08
Long distance participants welcome.
1) The College of Health Professions at Temple University in Philadelphia
Pregnancy in Fibromyalgia Questionnaire Study; Participants accepted ~ mid 2007
Women in the 6th or 7th month of pregnancy between the ages of 21
and 45 may be eligible for a research study to compare functional
status in pregnant women with Fibromyalgia and pregnant women without
Fibromyalgia. Benefits include a better understanding of how
Fibromyalgia affects pregnancy. The study involves only the completion
of two questionnaires so can be done from home. Participants will
receive a gift
certificate to Walmart.
Dr. Karen Moore Schaefer, RN, at (215) 707-4626 or karen.schaefer@temple.edu
2) The Center for Community Research at DePaul University:
ME/CFS in children and adolescents.
In order to determine a diagnosis
of Pediatric ME/CFS, the child must report fatigue as well as classic
ME/CFS symptoms in each of the following categories for a duration of
at least 3 months in addition to a frequency and severity rating:
Classic ME/CFS Symptom Category
a. fatigue
b. Post-exertional malaise
c. Sleep
d. Pain - At least one symptom from: Myofascial, Joint, Abdominal, or Head pain
e. Neurocognition - At least two symptoms
f. Other Category - At least one symptom from two of the following three categories:
Autonomic manifestations:
Neuroendocrine manifestations:
Immune manifestations:
We are looking for children and adolescents ages 5-17 and their
parents/guardians to complete the DePaul Pediatric Health Questionnaire
(DPHQ).
* The DPHQ is a short questionnaire and will take about 30 minutes to complete
* Participation and answers will be kept confidential
* You can either mail the questionnaire back to us or we can pick it up.
Your time and voluntary assistance are needed and appreciated.
If you and your child are interesting in volunteering, please contact:
Lindsay Till
Email: ltill@depaul.edu
Telephone: (773) 325-1897
Research Team's website: http://condor.depaul.edu/~ljason/cfs/Principal Investigator: Leonard Jason, PhD
Enrollment will take place at least until the end of 2006.
Advertised with permission from DePaul IRB.
A significant problem in ME/CFS Research is the lack of both a
pediatric definition of ME/CFS and a reliable instrument to assess it.
The DPHQ was developed as a response to these problems. It is
hoped that findings from this study will help to develop an accurate
case definition of ME/CFS in young people and that the DPHQ will become
an instrumental tool for correctly identifying cases of Pediatric
ME/CFS.
3) Double Blind Trial of Duloxetine in Chronic Fatigue Syndrome
University of Cinncinati
[Brand names of duloxetine are Cymbalta/Yentreve.]
Information excerpted from study info from ClinicalTrials.gov
The purpose of this study is to determine the safety and efficacy of
duloxetine compared with placebo for reducing fatigue in patients
diagnosed with Chronic Fatigue Syndrome (CFS). Expected completion is
September 2009.
Chronic fatigue syndrome (CFS) is characterized by severe disabling
fatigue of at least six months duration that cannot be fully explained
by an identifiable medical condition . Pain symptoms are also a part of
the diagnostic criteria for CFS, and include muscle pain, multi-joint
pain, and headaches. The prevalence of CFS ranges from 0.007 to 2.8 %
in the general adult population and 0.006 to 3.0% in primary care
practice (2). Although most who receive a CFS diagnosis are 30-40 years
of age, Caucasian, and female, CFS affects both women and men, adults
and children, and all racial and socioeconomic classes.
Patients with CFS have 2-4 times the rate of depression and anxiety
compared with the general population. CFS is also commonly comorbid
with fibromyalgia, a disorder characterized by chronic widespread pain,
tenderness, fatigue, sleep and mood disturbances. In some samples, 70%
of patients with fibromyalgia also meet criteria for CFS. CFS and
fibromyalgia are characterized by greater similarities than differences
and may share pathophysiologic features. Like fibromyalgia, CFS is
associated with chronic pain, sleep and mood disturbances. Because
fibromyalgia responds to treatment with antidepressants, particularly
the dual serotonin and norepinephrine reuptake inhibitors, including
duloxetine, antidepressant trials in CFS are clearly needed.
Inclusion Criteria:
Female and male outpatients between 18-65 years of age.
Meet criteria for revised CDC definition of CFS:
(at least 6 months of persistent fatigue that substantially reduces the
person’s level of activity; 4 or more of the following symptoms
that must occur with fatigue in a 6-month period: impaired memory or
concentration, sore throat, tender glands, aching or stiff muscles,
multijoint pain, new headaches, unrefreshing sleep, and post-exertional
fatigue.
Medical conditions that may explain the fatigue and psychiatric
disorders, including eating disorders, psychotic disorders, bipolar
disorder, melancholic depression, and substance abuse within 2 years of
the onset of fatigue, are excluded).
Provision of written informed consent for participation in the trial.
Educational level and degree of understanding such that the patient can
communicate intelligibly with the investigator and study staff.
Judged to be reliable and agree to keep all appointments for clinic
visits [in Cincinnati, Ohio], tests, and procedures required by the
protocol.
See above link for the many exclusion criteria and other details.
Contact: Jennifer M Hoff, MSW, LSW; (513) 475-8114; jennifer.hoff@uc.edu
Psychiatric Professional Services, Women's Health Research Program, Cincinnati, OH
Robert Wood Johnson Medical School, central NJ.
Study subjects must live within traveling distance of the test site.
Begins October 2006; no enrollment closing date has been set.
Dr. Lesley Allen is recruiting participants who are bothered by
multiple, persistent physical symptoms (such as pain, fatigue,
gastrointestinal difficulties or menstrual difficulties) OR
participants who have Fibromyalgia, Irritable Bowel Syndrome, Chronic
Fatigue Syndrome, Temporo-Mandibular Joint Disorders, or Chemical
Sensitivities for a free treatment study:
To examine a new psychosocial treatment designed to help reduce physical discomfort.
Based on the idea that stress tends to make physical symptoms worse,
the program teaches stress management and coping skills as a way to
reduce physical discomfort.
Applicants must be between the ages of 18 and 65 and must be
experiencing multiple, unexplained physical symptoms. Medications must
be stable for at least two months, and applicants must not be involved
in (or be willing to delay) psychotherapy treatment during the
four-month duration of the study.
The 14 weekly sessions will be offered at no cost to participants. They will be compensated $20 for each completed assessment.
For more information, contact Jade Tiu, Research Coordinator, tiuje@umdnj.edu
(732) 235-3378; 671 Hoes Lane, Piscataway, NJ 08854
5) Insomnia Medication Trial or FM Patients
Robert Wood Johnson Medical School, central NJ.
Study subjects must live within traveling distance of the test site.
Begins October 2006; no enrollment closing date has been set.
Dr. Lesley Allen at is recruiting Fibromyalgia patients who are also experiencing sleeping difficulties for a medication study:
To examine the effects of a sleep medication as a treatment for insomnia and Fibromyalgia symptoms.
Applicants must be between the ages of 18 and 64, have been diagnosed
with Fibromyalgia, and be stable on medications for at least one month.
Additionally, applicants must not be involved in (or be willing to
delay) psychotherapy treatment during the duration of the study.
The study involves 7 visits for approximately 4 months. All study pills
and procedures are free of charge and participants will be compensated
$20 for each completed visit.
For more information, contact Jade Tiu, Research Coordinator, tiuje@umdnj.edu
(732) 235-3378; 671 Hoes Lane, Piscataway, NJ 08854
6) Study of Ampligen in Chronic Fatigue Syndrome: Recruiting Once Again
http://www.clinicaltrials.gov/ct/show/NCT00215813
Updated October 24, 2006
Sharon Conway
215-988-0080
sharon@hemispherx.net
Study chairs or principal investigators
Daniel Peterson, M.D., Principal Investigator, Sierra Internal Medicine, NV
Lucinda Bateman, M.D., Principal Investigator, Fatigue Consultation Clinic, UT
Charles W. Lapp, M.D., Principal Investigator, Hunter-Hopkins Center, NC
7) Anti-viral drug valganciclovir to be tested on CFS at Stanford University
People participating in the clinical trial must live in the San Francisco Bay Area.
José Montoya, MD, has received a $1.3 million grant from Roche
Pharmaceutical, which manufactures the drug under the brand name
Valcyte, to conduct a randomized, placebo- controlled, double-blind
study set to begin this quarter [1st QTR 2007].
More information about the clinical trial is available online at http://www.vicd.info/clinicaltrial.html
and
http://mednews.stanford.edu/releases/2007/january/montoya.html
8) Effectiveness of Acupuncture in Relieving Pain Due to Fibromyalgia
University of Michigan’s Chronic Pain and Fatigue Research Center
Richard E. Harris, PhD, Principal Investigator
Sub-Investigators
Daniel J. Clauw, MD; Jon-Kar Zubieta, MD, PhD; Richard H. Gracely, PhD
A study to investigate the mechanisms by which acupuncture might
relieve pain due to Fibromyalgia is recruiting diagnosed adult female
FM patients, age 18-75, who suffer pain at least 50 percent of days;
have not previously undergone acupuncture therapy; and are located
within about 1 - !/2 hours’ traveling distance of Ann Arbor,
Michigan.
The study is sponsored the National Center for Complementary and
Alternative Medicine (NCCAM). Its objective: to “Determine the
effectiveness of acupuncture versus a placebo [simulated acupuncture]
in altering brain activity and relieving pain due to
Fibromyalgia” – and possibly “lead to
acupuncture’s acceptance by the Western medical and scientific
communities as a practical treatment option.”
Expected Total Enrollment: 80
Contact Ginny Leone at 734-998-7110 or e-mail vgracely@umich.edu
ClinicalTrials.gov identifier NCT00142597
Effect of Acupuncture on FM Pain - Article at ImmuneSupport
9) Harvard Researchers Seek Patients with POTS for Series of Studies
http://www.immunesupport.com/library/showarticle.cfm/ID/7731
A Boston-based research study is currently seeking subjects with
Postural Tachycardia Syndrome (POTS). A number of CFIDS patients have
the symptoms of POTS.
The study is being conducted by Dr. Roy Freeman, MD, a well-established
researcher in the area of CFIDS autonomic system dysfunction. Here is
the notice as it appeared on the Co-Cure list and on Immune Support:
"Roy Freeman, MD and his research staff at the Center for Autonomic and
Peripheral Nerve Disorders at Boston's Beth Israel Deaconess Medical
Center (a teaching Hospital of Harvard Medical School) are conducting a
number of studies of patients with POTS...and they are actively seeking
subjects (who have postural tachycardia syndrome). This is how they
describe the studies:
'The aim our research project is to identify the possible
pathophysiological mechanism of the postural tachycardia syndrome by
applying an integrated physiological-experimental approach. [This]...
includes carotid artery and brachial artery ultrasound examination,
different autonomic evaluation techniques such as arterial baroflex
assessment, cardiovascular response monitoring to different stress
tests, calf blood flow measurement and sympathetic nerve activity
recording.
The research study also includes pharmacological assessment of the
arterial baroflex function and the increase of this parasympathetic
control by low dose atropine and losartan. Using all of these
techniques, our research study provides information simultaneously
about several aspects of the cardiovascular autonomic control
mechanisms in postural tachycardia syndrome and facilitates our
understanding of the sympathetic vascular and cardio autonomic controls
in this disorder.
The research study consists of a screening visit and 4 study visits to
[Boston's Beth Israel Deaconess Medical Center]. It is optional to stay
in the hospital before [or during] the study days. Discontinuation of
medications may be necessary for the study but you may discontinue any
medication only with the approval of your Primary Care Physician and
Dr. Freeman.'
The studies appear to be quite flexible and you can choose to do some,
all or none of the pieces of it. There is modest compensation for your
time. If you would like to find out more about the study, please
contact Dr. Bonyhay (MD, PhD Research Fellow) at 617-632-0646.
Dr Freeman's Bio
http://bidmc.harvard.edu/display.asp?leaf_id=14885
10) A Study of Genetic Risk Factors That May Be Associated
with Chronic Fatigue Syndrome (CFS)
Researchers at the University of Illinois at Chicago and Tufts University are interested in YOU
Dr.
Brigitte Huber of Tufts University and Dr. Renee Taylor of University
of Illinois at Chicago are seeking research participants ages 13-64 for
a study of genetic risk factors that may be associated with
chronic fatigue syndrome. To be eligible, subjects should have
documentation of a diagnosis of either chronic fatigue syndrome or
mononucleosis from a physician.
If interested, please contact
Dr. Renee Taylor at
(312) 996-3412 (office)
or mono@uic.edu.
[The JPG flyer for the study also lists the logos of NIH and Children's Memorial Hospital.]
11) Chronic Fatigue Study Questionnaire Study
University of Utah
Long distance participants welcome.
Do
you have chronic fatigue and are you searching for ways to manage it
better? Have you just begun treatment with a new physician?
If yes, then medical researchers at the University of Utah invite you
to participate in a research project. They want to study patients with
chronic fatigue as well as the various methods that are currently being
used to treat it. It requires you to complete 2 questionnaires, one
before you start your treatment and another in about 6 months. It takes
about 35 minutes of your time. You will be given $25 for doing
this. Through this project, the researchers hope to find better ways of
treating chronic fatigue. If you are interested in participating
in this study and need more information please contact
Kathleen O’Connor at (801) 587-4741 or email Kathleen.oconnor@hci.utah.edu
Added 10-2-08.
12) Vulvodynia - Cost of Illness Survey
The
NVA is seeking women with vulvodynia who live in the United States to
participate in a cost of illness survey, which asks questions about
lost work hours and out-of-pocket expenses related to having
vulvodynia. From a cost of illness survey, analysts can calculate to
what extent a particular health condition impacts our economy. It is
important for NVA to have this information to convince members of
Congress and NIH staff of the great need to increase funding of
vulvodynia research.
Participation requires only 3 hours
of your time over the next 6 months. With the use of a NVA-supplied
calendar, you will keep track of your vulvodynia-related expenses, such
as prescription medications, doctor visits and over-the-counter
remedies. Participants will anonymously log onto NVA's web site once
every four weeks (for six months) to record expenses. Each time you log
on, the survey will take 5-10 minutes to complete.
For additional information, or to participate, please visit http://www.nva.org/costsurvey
(Study Announced 9/24/08)
Selected International ME/CFS and FMS Trials
Web-based Study Needs Fibromyalgia Patients Who Experience Cognitive Problems
(Cognitive problems AKA "Fibrofog")
September
20, 2008: Fibromyalgia patients who experience cognitive problems (AKA
“fibrofog”) are invited to take part in an international
e-mail-based doctoral research survey based at the University of West
England.
Online completion of answers to study questions is expected to require about 15 minutes, and participants will remain anonymous.
The
resulting findings should help to develop a more evidence-based
understanding of the level of FM patients’ cognitive problems,
considering other details of their health status, and how they cope
with cognitive changes.
Requirements to participate include:
• Diagnosis of fibromyalgia
• Cognitive problems
• 18 years of age or older
• Computer access
•
Ability to log into a website, create a password and retain it for
re-entry, and complete answers to an online questionnaire and questions.
• No head injury, CFS or ME, current or past cerebral disease.
If
you are interested in taking part in this study and would like to see
the study website, or want more details before deciding – go to
the
Fibromyalgia Association UK website (http://www.fibromyalgia-associationuk.org),
where
the study announcement is posted, and click on a link to e-mail the
researcher – Pascale Harrison. In turn she will forward a link to
the study website.
Note: Another online survey announcement
on the FibromyalgiaAssociationUK.org website – this one limited
to female FM patients in the south east of England to ensure manageable
size - will develop data on the effects of certain foods or food groups
among FM patients. To read the announcement and download the survey,
click here.
Questionnaire investigation into the role of illness perceptions, styles of thinking, coping behaviour, depression and adherence to treatment in CFS. Closed, August 2006.
Michelle Noonan, undertaking a
Postgradate Diploma
in Psychology at La Trobe University in Melbourne, Australia. With
another student, Karen Walker, working in conjunction with
supervisor Dr. Helen Lindner (Health Psychologist), we are
examining some of the factors which may underlie depression in CFS.
We do realise that many CFS
patients are wary of any research connected to psychological issues. We
totally understand your apprehension but would like to make it clear
that whilst we do realise that there is controversy surrounding whether
CFS is a physiological or psychological illness this is not our area of
interest. As you no doubt realise when somebody is diagnosed
with a chronic illness, whether it be cardiac disease, cancer,
diabetes, or asthma it will have a psychological impact upon them. It
is this impact we are interest in, not the aetiology of the illness.
Contact information for researchers via email at cfsresearch@latrobe.edu.au.
Dr. Helen Lindner on
011 61 (03) 9479 5045. h.lindner@latrobe.edu.au
Michelle Noonan (BBSc, PDGP) and Karen Walker (BBSc, Hons)
School of Psychological Science
La Trobe University, Bundoora Campus, Victoria, Australia
The
results of this data may appear in publications, or presented at scientific conferences.
Results will be published in the
students’ theses.
Results posted online
http://www.latrobe.edu.au/psy/projects/current_proj.html#cfsyndrome
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