You + M.E. Registry and Biobank
Patient registries and biobanks help overcome a significant obstacle in ME/CFS research by providing a research-ready community of patients and their clinical information and samples.
Mobile app[edit | edit source]
A unique feature of this registry is a mobile app.
With the use of a mobile app, participants are asked to consistently report on a core set of symptoms: fatigue, brain fog, unrefreshing sleep, lightheadedness, and post-exertional malaise (PEM)., thus allowing "a moving picture of the disease and how it affects everyday life, as opposed to the single snapshot of the symptoms you might report to your healthcare team during an office visit."
Data security[edit | edit source]
The data is stored in a secure database with anonymized and obvious personal identifiers are removed and is managed by Solve M.E. and our partners.
Data collection[edit | edit source]
A collection kit and instructions for the collection, labeling, and shipping of the kits is sent to your address. You can take the kit to a lab (e.g. a Quest Diagnostics facility) close to where you live. Postage-paid return mailers are included. Solve ME/CFS Initiative can arrange for someone to come to your home to collect the sample, if access to a lab is not possible.
See also[edit | edit source]
Online presence[edit | edit source]
References[edit | edit source]
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.
lightheadedness the condition of being dizzy or on the verge of fainting
post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others.