The CFIDS Association has joined forces with the Genetic Alliance BioBank to create the SolveCFS BioBank. The CFIDS Association says about their new venture:
The SolveCFS BioBank will collect and store a bank of biological samples (such as blood, tissue, cells and DNA) and clinical information at the GA BioBank laboratory facility from individuals with CFS and healthy individuals (controls) aged 10 and older from the U.S. and other countries. It ensures that individual privacy and confidentiality are protected and that samples are available to researchers whose research projects have been reviewed and approved by the CFIDS Association of America Medical Research Advisory Committee.
Through the SolveCFS BioBank, individuals can enroll once and will then contribute information to multiple projects, advancing our understanding of CFS on multiple fronts. Because the SolveCFS BioBank’s purpose is dedicated to research and in order to preserve the privacy and security of all participants’ information, participants do not receive personal results about any tests performed using their samples. The Association will provide regular updates about how SolveCFS BioBank samples are being used, as well as the results of research conducted. Researchers will be required to publish their results in peer-reviewed medical journals.
The CFIDS Association is now inviting individuals to participate in the SolveCFS BioBank under a “General Enrollment” category. This enables interested individuals to provide written informed consent and complete detailed clinical questionnaires to become part of future SolveCFS BioBank studies. Blood and tissue samples will be requested from enrollees as they become eligible for approved studies. Creating this new enrollment status facilitates greater participation by members of the community, expands the clinical population available to interested investigators, and enables the Association to defer the expense of sample collection until those samples are needed for an approved study. IF YOU WANT TO TAKE PART IN THESE STUDIES, PLEASE CLICK ON THE SOURCE LINK BELOW AND YOU CAN READ THE INSTRUCTIONS AND COMPLETE THE NECESSARY PAPERWORK.
An individual will be eligible for general enrollment if they have been previously diagnosed with CFS by a licensed physician using either the 1994 Fukuda research criteria or the 2003 Canadian clinical criteria.
Individual must fulfill ALL THESE CRITERIA to be eligible for current studies:
- Post-exertional malaise defined as an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, and/or fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen after even minimal physical or mental exertion. Pathologically slow recovery period usually lasting 24 hours or longer.
- Significant cognitive impairment in concentration and short-term memory.
- At least 10 years of age at the time of signing the informed consent.
- Capable of giving written consent to the CFIDS Association of America, including compliance with the requirements and restrictions listed in the consent form.
- A female is eligible to participate if she is not pregnant, not within 3 months postpartum, and not currently lactating per the self-report.
An individual will not be eligible for the studies if they do not meet the Fukuda or Canadian criteria or if the following general exclusion criteria apply:
- Alcohol or substance abuse within two years before onset of chronic fatiguing illness defined as an average weekly intake of more than 14 drinks for males or more than 7 drinks for females. One drink is equivalent to 12 g of alcohol: 12 ounces (360 ml) of beer, 5 ounces (150 ml) of wine or 1.5 ounces (45 ml) of 80 proof distilled spirits.
- Where participation in the study would result in blood donation or blood products in excess of 500 mL within a 56-day period.
- Major surgery within 6 months after operation or minor surgery within 3 months after operation.
- Major infections (sepsis, pneumonia) within 3 months post-resolution.
- Heart attack or heart failure within 5 years after event.
- Morbid obesity (BMI greater than 40).
- Psychiatric conditions including lifetime diagnosis of bipolar affective disorders, schizophrenia of any subtype, delusional disorder of any subtype, organic brain disorders, or major depressive disorder with psychotic or melancholic features, anorexia nervosa, or bulemia within 5 years before the onset of chronically fatiguing illness.
- Unwilling or inability to provide written consent.
- Mental or legal incapacitation.
- Control subjects do not have a disorder causing immunosuppression including, but not limited to cancer, severe infections, HIV, or other immunosuppressive disorders.
- Alcohol or substance abuse defined as an average weekly intake of more than 14 drinks for males or more than 7 drinks for females. One drink is equivalent to 12 g of alcohol: 12 ounces (360 ml) of beer, 5 ounces (150 ml) of wine or 1.5 ounces (45 ml) of 80 proof distilled spirits.
- Unwillingness or inability to follow the procedures outlined in the protocol.
- Subject is mentally or legally incapacitated.