You are being invited to participate in a research study of
how individuals with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome or
ME/CFS feel about mental health treatment, their experiences with therapy, and
what they would like to see improved.
I chose to do this study because I have a family member
affected by this disease and I wanted to find a way as a clinical social work
student to help educate other social workers about how to best support people
struggling with ME, CFS or ME/CFS without causing greater harm.
I understand that some researchers and providers have caused
many people with ME, CFS or ME/CFS to feel invalidated. If you choose to
complete the following survey, you may share these experiences. There are also
people who may have experiences where psychotherapy helped provide them with
emotional support during a difficult time and would like to share what approaches
they found most helpful. Others may not have had the opportunity to seek mental
health services for various reasons, but may have opinions about what would
make desired therapy more accessible or what they would like therapists to
Feel free to share the good, the bad, and the ugly about
your experiences in the comments sections, as well as what you would like to
This is an unfunded study and I have no affiliations with
any other institutions other than Smith College School for Social Work, where I
am studying in a Masters of Social Work program.
Any person over the age of 18 who has ME, CFS or ME/CFS is
invited to participate in the study. If you choose to participate, you will be
asked a few screening questions on the following page. If you are eligible, you
will then be directed to an informed consent page after which the study will
begin. I ask that you read this form and ask any questions that you may
have before agreeing to be in the study.
Description of the Study Procedures
If you agree to be in this study, you will be asked to do
the following things: Fill out an anonymous, online survey that should take between
20-30 minutes in total depending on how much you decide to comment.
Taking a Break from the Survey
If needed, you can pause and take a break to return to the
questions at a later time. You may exit the survey and your responses will be
saved for up to one month for you to complete at your convenience. You can
simply return to the survey link from the same computer. Once you have
submitted your responses, you will not be able to go back and make any
Ending Participation in the Study
If you would like to end your participation in the study
before submitting, you may exit at any time and not return. Incomplete
responses will not be recorded in the final analysis. After submitting your
responses, it will not be possible to take them back because I would not be
able to distinguish them from others since the survey is anonymous.
Please note that I have tried to be conscious of my use of
language throughout the survey, but I understand that there is an ongoing
discussion about terminology.