The Stony Brook Chronic Illness Project – Patient Survey

We are providing the following information as it may be of interest to some of our patients. They are particularly interested in patients with Mastocytosis or other Mast Cell disorders, as well as other types of chronic illness. We are not affiliated with the study, though we will be interested in the outcome.


Scientists at Stony Brook University are conducting one of the largest, most important research studies ever undertaken to understand people’s experiences with chronic illness.

The knowledge we gain from this study will help scientists and physicians to improve care and develop effective treatments.
This anonymous, online questionnaire welcomes any adult who has a rare or non-rare chronic illness to participate. The questionnaire is voluntary and takes approximately 30 to 60 minutes to complete.

Please click on the link below if you are interested in participating!

View Questionnaire Here >

Thank you for your contribution to our knowledge about chronic illness!

Jennifer Nicoloro-SantaBarbara, M.S.W., M.A., Project Director and
Marci Lobel, Ph.D., Principal Investigator and Professor of Psychology
Stony Brook University
Approved: May 15, 2017
Expiration Date: May 14, 2018


Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey

LYMEPOLICYWONK by Lorraine Johnson has an overview of the recent survey done by on the quality of life for chronic Lyme disease patients, compared to other people with chronic illness. While the conclusions are unlikely to surprise people who have chronic Lyme disease, it is another piece of evidence supporting the severity of this illness.

You can read the complete study for free.
Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey

Blog Post By Lorraine Johnson, originally published on the LYMEPOLICYWONK on March 27, 2014

LDo’s most recent survey of over 3,000 patients with chronic Lyme disease was published today by PeerJ. Although the Centers for Disease Control (CDC) recently increased the number of Lyme disease cases in the US from 30,000 to 300,000, little is known about how chronic Lyme disease affects patients. We decided it was time to ask them. This post will provide an overview of the findings and future blogs will focus on other findings regarding coinfection rates, rashes, disability, symptoms and other topics. The study was a joint effort of LymeDisease.Org and Prof. Jennifer Mankoff at Carnegie Mellon University.

Chronic Lyme disease is associated with a poorer quality of life than most other chronic illnesses, according to a newly published comprehensive patient survey. Patients with chronic Lyme disease have high disability and unemployment rates and, compared to the general population, are five times more likely to visit healthcare providers and twice as likely to be seen in emergency rooms.

The CDC estimates that more than 300,000 people contract Lyme disease every year in the United States. Approximately, 36% of patients diagnosed and treated early remain ill after a short-term course of antibiotics. The survey used standard questions developed by the CDC regarding health related quality of life.

Quality of Life in Lyme Disease Compared to other chronic illness

Read the complete summary article.