I am sending the following message to my non-ME friends and I would encourage other patients to do the same. We can help out Lenny Jason and his team greatly in recruiting our healthy friends and family members. I used Lenny’s name in the message because he is the bigger name and he will oversee this study, but the principal investigator will be Meredyth Evans and I mean no disrespect to her. I am just trying to be as effective as I can in recruiting. Also, I use “ME/CFS” in my message instead of “ME” because that’s what the researchers are using.
Hello Friends & Family,
I hope you are all doing as reasonably well as can be expected in this crazy world. I would like to recruit you for an important ME/CFS research project. I am not asking you for money or blood, although one day I might But I would like to ask you for 1 to 2 hours of your time spent on the phone answering questions to researchers.
The team of Dr. Leonard Jason, a renowned professor of psychology at DePaul University in Chicago, Illinois, is looking for individuals who do not have a diagnosis of ME/CFS. Lenny and his team have done some outstanding research work over the years helping the cause of ME/CFS a great deal. One of Lenny’s studies concluded that ME/CFS patients die an average of 20 younger than the non-ME/CFS population and that the three main causes of death in ME/CFS are cancer, heart disease and suicide.
The DePaul team is in the process of developing new criteria for classifying individuals with ME/CFS. Identifying ME/CFS patients properly is important because early diagnosis decreases the risk of illness progression to a debilitating state. It also ensures the use of the correct patient cohort in studies, which is crucial if we ever want a chance of a cure or even a treatment. Wrongly identifying patients for the few studies that the government has funded has done great harm to the patient population. Improvements on that front are essential and long overdue.
The DePaul team has interviewed many ME/CFS patients for this ongoing project. However, in order to establish a reliable new case definition for the disease, they also need to speak with people who do not suffer from ME/CFS.
Participating in this study requires your being:
(1) an individual who does not have an ME/CFS diagnosis (although it’s ok to live or have lived with an ME/CFS patient) and
(2) available for two short (between 30 and 60 minutes) phone sessions. Session 2 would have to occur exactly two weeks after session 1.
I expect questions to cover general information, such as age, gender, ethnicity, education, marital status as well as medical information, such as level of pain, sleep problems, cognitive problems, fatigue, sore throats, swollen lymph nodes etc. The information that will be provided will be de-identified, after which it will not be personally identifiable anymore.
If you are willing to participate, please send an email to DePaulMECFSResearch@gmail.com and somebody will be in touch with you shortly.
Here is the full contact info for the DePaul research team:
ME/CFS Research Team
990 W. Fullerton Ave., Suite 3100
Chicago, IL 60614
If you have any concerns about taking part in this, let me know and I will try to get clarification from the DePaul folks.
I know everybody is very busy in this hectic world and carving out 1 to 2 hours of your schedule is not easy. But I would really consider your participation in this study a personal favor.