What you always wanted to know about surgery when you have Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM)& Myalgic Encephalopathy (ME)
Compiled by: Melissa Kaplan
Click here for recommendations by leading physicians
The 9th INTERNATIONAL IACFS/ME RESEARCH &
CLINICAL CONFERENCE, RENO, NEVADA
March 12 - 15 2009
This conference covered: pharmacologic & non-pharmacologic treatment advances, new developments in epidemiology, neuro-endocrine advances, infections disease research, immunology research, assessment issues from biological to behavioural, new developments in pediatric ME/CFS, research development in genetics, advances in brain functioning & virology/microbiology research.
At this IACFS/ME Research & Clinical Conference P.A.N.D.O.R.A. was proud to donate to "The Nancy Klimas Research Excellence Award" $2,000. The recipients of this award was: Dr. Michael H. Antoni and Dr. John K. Chia, MD. P.A.N.D.O.R.A was pleased to have been a part of this conference.
Click here to read the entire summary of conference by Rosamund Vallings, MB, BS
Meet Dr. Gordon Broderick, PhD
Associate Professor, Department of Medicine,
University of Alberta, CANADA
Dr. Broderick CFS, Gulf War syndrome & Fibromyalgia research center at the Department of Medicine, University of Alberta, Canada is the recipient of a $3,000 special grant from P.A.N.D.O.R.A. in memory of Dr. Steven Croft.
The grant will fund 2 medical students, Andrea Kreitz and Landon Berger for a summer internship in 2009. Both are embarking on their 3rd year of medical school at the University of Alberta. (See picture below.)
The grant for Andrea Kreitz will focus on the study of immune imbalance in Gulf War Illness and is funded by the U.S. Department of Defense. Landon Berger (middle of photo) will receive a travel stipend to work with a collaborator at Cornell University in the use of neuro-imaging for diagnosis of chronically fatigue syndrome patients and is funded by the CFIDS Association of America, Inc.
Dr. Broderick seen in the photo below shares his comments with P.A.N.D.O.R.A. and our community: "This type of cofounding for medical student awards is crucial for the patient community as these individuals will be in the first line of health care delivery in the very near future. I commend P.A.N.D.O.R.A. for recognizing this need and helping us better serve the patient population. It is my hope that P.A.N.D.O.R.A. can continue this important work benefitting the patient community. "
Click here to view Dr. Gordon Broderick web-page
Click here to view Marla Schwartz interview with Dr. Broderick in PDF format
Photo of Dr. Gordon Broderick, Landon Berger & Andrea Kreitz
Viral Genetics Pursues Promising New Therapy for Lyme Disease With Grant from Time for Lyme, Inc.
Thursday April 16, 2009
SAN MARINO, Calif.--(BUSINESS WIRE)--Biotechnology company Viral Genetics is pursuing a promising new therapy for Lyme Disease with a $116,000 grant from Time for Lyme, Inc. "This grant is the second we have received in a month for our work in Lyme disease,” said Haig Keledjian, CEO of Viral Genetics. “Obviously we could not be happier that the research is moving forward very rapidly and showing great promise.”...
Click here to view entire article in PDF format
Click here to view Viral Genetics website
Fibromyalgia Research Study by OFFER
The Engage study is an exciting option for
people with FMS
Click here to view web-site
University of Miami Department of Medicine
Annual Report - 2008
University of Miami Health System - University of
Miami Miller School of Medicine
Click here to view the page on Chronic Fatigue Syndrome (CFS) & Gulf War Illness (GWI).
Click here to view the entire University of Miami Annual Report 2008
Delray Research Associates
Delray Research Associates is affiliated with Arthritis Associates of South Florida. Their board-certified physicians have been practicing medicine for more than 20 years, and each of them has a commitment to offering their patients the very best treatments available.
Clinical trials often offer the patient an opportunity to receive a medication that could prove to be more effective than those currently approved before it is available to the general public. Study participants also frequently have the added advantage of comprehensive medical care at no cost to them.
Participants are usually compensated for their time and travel expenses.
We currently have studies enrolling for: Osteoarthritis of the Knee or Hip, Rheumatoid Arthritis & Fibromyalgia
Contact: Dr. Kallen, Dr. Goodman & Dr. Saxe
P.A.N.D.O.R.A. supports the Chronic Fatigue Syndrome Center/Gulf War Illness Research Center at the University of Miami VA Hospital, Miami, Florida. If you would like to make a tax-deductible donation to P.A.N.D.O.R.A., to be applied toward research, click here.
For current release of research studies on chronic fatigue syndrome (CFS-ME) and articles of interest.
For current release of research studies on fibromyalgia (FM)and articles of interest.
For current release of research studies on Gulf War illnesses (GWI) and articles of interest.
For current release of research studies on multiple chemical sensitivities (MCS) and articles of interest.
For current release of research studies on chronic Lyme Disease/Lyme disease (CLD/LD) and articles of interest.
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Miami Researchers are looking for patients for innovative CFS research study
The University of Miami-Behavioral Medicine Research Center is conducting research studies on chronic fatigue syndrome that allows patients to participate in the comfort of their homes. It is called the TeleHealth Study.
What: The TeleHealth Study is a research project designed to help individuals with CFS understand and manage their condition. Participants will be provided with information about the nature and effects of stress reactions; how to cope and manage stress; and how to take better care of themselves via an innovative home-based program. The TeleHealth study is funded by the National Institutes of Health (NIH) in collaboration with the University of Miami Behavioral Medicine Research Center.
Who is eligible: People who
1. Have a diagnosis of CFS
2. Are between the ages of 21-65
3. Speak, read and write English fluently
4. Have a telephone line
5. Live in Dade or Broward counties for the next 9 months.
Payment: $50 for each completed assessment
Contact: To participate or for more information, call 305-243-1434 or 305-355-9057
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Patterns of Microarray Gene Expression in Gulf War Illness Researcher: Nancy Klimas, MD
Miami, Florida -
Purpose of study:
To use a new method (called microarray) to find genetic markers that may be related to Gulf War Illness (GWI) and Chronic Fatigue Syndrome (CFS). This will help us better identify and understand the likely causes of these illnesses.
Who can participate:
(90 people - 30 in each category)
Category 1. Gulf War Veterans (men or women), about 30-55 years of age, who deployed in 1990 or 1991, and who have chronic symptoms of fatigue as well as problems in other areas such as pain, stiffness, depression, thinking, or memory.
Category 2. Chronic Fatigue Syndrome patients. In particular, we need some more men.
Category 3. Healthy controls, preferably veterans.
What participation involves:
1. You will make two visits to the Miami Veterans Hospital (1201 NW 16 Street, Miami Florida 33125). The first visit will take 4 hours. The second will take up to 7 hours. (Some of this time will be spent just resting.) These visits will be about one week apart, but the schedule is flexible if necessary.
2. You will have interviews, fill out questionnaires, give blood samples, and do a short exercise challenge on a bike.
How you will benefit:
1. By helping researchers understand the causes of CFS and GWI, this study may help you and other patients in the future.
2. You will receive the results of a battery of immunological tests worth more than a thousand dollars.
3. You will be compensated for your time and travel.
Contact information:Lottie Cason: 305-575-7000 ex. 6706, or email@example.com
Note: If you are interested but think you don’t qualify, please feel free to call anyway.
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Good Day-Bad Day Chronic Fatigue Syndrome Research Study
A. Requirements: Participants must
1. Have CFS
2. Be between 18-55
3. Live in Miami-Dade or Broward Counties
B. What you will do:
Come to the clinic 4 times:
1. First visit
2. "Good day"
3. "Bad day"
4. 18 months
- At each visit, you will receive a complete physical exam, have a blood draw, and fill out questionnaires.
- You will receive $20 per visit to help cover travel costs.
- You may receive copies of your test results if you wish.
C. Healthy comparison group:
We would appreciate your help in recruiting healthy volunteers. If you know a relatively healthy person around your age who would be willing to participate in the study, please have them call. That person cannot be a blood relative or anyone who lives in your home. That person will come to the clinic 4 times also: first visit, then at 6, 12, and 18 months.
D. Questions? Want to sign up?
Please call, even if you think you might not qualify.
Lina Garcia, Study Director
Note: Dra. Lina Garcia is a physician from Colombia who is working in getting her U.S. medical license. She is the first physician participating in P.A.N.D.O.R.A.'s educational mentoring program.
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FIBROMYALGIA CLINICAL TRIALS
National Pain Research Institute, Winter Park, Florida
Joan Cutillo, LPH, CCRC
407-622-5766 extension 1420
Beth Israel Medical Center, New York City
Lisa Shichijo, Clinical Research Coordinator
Department of Pain Medicine & Palliative Care
Click here for information on additional locations throughout the country and in Canada, exclusions and requirements .
Source: Pro-Health FM Newsletter
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NEW! The Nature & Management of Fatigue Study
This is an international, 12 month research study of fatigue in people living with a chronic illness who are aged 18 or over. The aim is to describe fatigue in chronic illness and how people manage their fatigue.
The study has two areas, a survey to collect information on the nature and management of fatigue that anyone is invited to complete and one page for personal stories that people who are managing their fatigue or have recovered are invited to complete. Please visit each page to find out more about them. The study is also running an online forum on living with fatigue involving up to 50 people from New Zealand and around the world. The restricted login for this is situated at the left of the page.
The results of this study will be of particular interest to health professionals and will help to inform the development of intervention programmes for managing fatigue. Please be assured that all information submitted is anonymous and will be handled confidentially. Ethical approval has been granted by a national ethics committee.
If you would like to find out more about the study please contact firstname.lastname@example.org
Source: University of Otago, New Zealand
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The study is on-line and it taks 30 minutes. It is aimed to evaluate how "close interpersonal relationships have an impact on healtn and well being." Individuals with chronic illneses are encouraged to participate.
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Fibromyalgia Clinical Trial - Yvonne Sherrer, MD
Fibromyalgia (FM) research is also being conducted in the offices of Dr. Yvonne Scherrer. Her offices are located in Fort Lauderdale. Click here for flyer information
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Dr. Roland Staud - University of Florida, Gainesville
Dr. Roland Staud, is a noted rheumatologist whose specialty is Fibromyalgia (FM). He is also a well regarded Fibromyalgia researcher, Professor of Medicine, at the University of Florida (UF), Gainesville, FL. He is the co-author of the book "Fibromyalgia for Dummies".
Dr. Staud was our key note speaker for the Fibromyalgia Session at our 5th Annual 'INSPIRING HOPE THROUGH AWARENESS™" conference for Neuroendocrineimmune Disorders patients and families which was held on April 29, 2006 at the Pompano Beach Civic Center. The conference was possible with a grant from Forest Laboratories and other sponsors.
Staud is currently the head of the Center of Musculoskeletal Pain Research at UF. "The goal at the center is to develop a better understanding of the condition, with an eye toward improving diagnostic tests and treatments." The center "is dedicated to the study of mechanisms responsible for musculoskeletal pain" but it also focused on patient care related to Fibromyalgia Syndrome, Chronic Fatigue Syndrome, Osteoarthritis, Rheumatoid Arthritis, Systemic Lupus Erythematosus, Polymyalgia Rheumatica.
Staud and his research group have provided "convincing scientific evidence for abnormal central nervous system mechanism in fibromyalgia patients. In contrast to "Normal Controls", FM patients show increased wind-up of second pain, abnormal maintenance of "wind-up", and evidence for central sensitization. The results of this research were published in PAIN 91:165-175 (2001) and PAIN 110:689-696 (2004). Abnormal pain amplification mechanisms clearly contribute significantly to the biological aspects of the pain experience of FM.
If you live in the Gainesville area, you should attend the Sixth Annual Fibromyalgia Research Meeting at the University of Florida on May 12th, 2007 at 2:00pm, McKnight Brain Institute. Admission is free & everybody is welcome. This event is to highlight Fibromyalgia Awareness Day.
If you would like to purchase his book, "Fibromyalgia for Dummies" please go to Shop Pandora's Book Store. Amazon.com provides a part of their sales revenues of items purchased through our Virtual Shopping Mall to benefit P.A.N.D.O.R.A. You must access their web site through our bookstore page or through our web site.
Click here for more information on Dr. Staud's outstanding Fibromyalgia research
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P.A.N.D.O.R.A. supports the Chronic Fatigue Syndrome Center at the University of Miami VA Hospital, Miami, Florida. If you would like to make a tax-deductible donation to P.A.N.D.O.R.A., to be applied toward research, click here.