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Take the NYU Research Survey about your ME Experience

Emily Lim Rogers is a researcher at NYU interested in the experiences of people with ME or CFS in the U.S. She is looking to speak to people with ME or CFS for the two studies below. 

Read an interview with Emily! Scroll down past the studies to read an interview with Emily about the questions she is attempting to answer, and how she got involved with ME activism. 

Research Studies
Study #1 | Social Security: Do you live in the U.S. and receive disability from the Social Security Administration? If you are receiving SSI/SSDI, I want to hear about your experiences with the program, specifically with work incentive programs (e.g. Ticket to Work). I’m looking to find around 15 folks to interview for about 45 minutes each about Social Security. To be eligible, you must live in the US and receive SSI or SSDI and self-identify as a person living with ME or CFS. (Note: you do not have to receive SSI/SSDI for ME or CFS; it could be for a different or related condition.) The results of this study will inform the SSA about the experiences of people with ME.

Study #2 | Illness experience: If you don’t receive disability, I’m still interested in hearing from you! I’m doing a larger study about ME/CFS, illness identity, and the politics of biomedicine in the U.S. If you live in the U.S. with ME/CFS, I’m interested in hearing about your experiences with activism, with getting a diagnosis, with dealing with and managing your symptoms, with doctors—anything and everything relating to what your life is like with ME.

Please feel free to reach out to me directly with any questions, comments, or concerns: emily.rogers@nyu.edu.

Particiapate in the Studies

Interview with Emily

#MEAction sits down to talk with Emily about the questions she is trying to answer, and how she got involved in this project. 

How did you get involved? 

I am a PhD candidate in American studies in the Department of Social & Cultural Analysis at New York University. I came in to doctoral study with an interest in gender and the body. My own experience with chronic illness led to my research interest in ME/CFS. While I do not have ME, there are certainly parallels to how amorphous, chronic illnesses without biomarkers are received in our society and within the American system of delivering healthcare (which is part of my interest as an Americanist). I found out that while anthropologists, sociologists, and other scholars have long been interested in the question of what is called “contested illness,” there had been very little social science or humanistic research on ME/CFS that was actually engaged with the patient community. (In fact, there are no book-length histories or ethnographies about ME/CFS.) I feel there is a lot to be gained from in-depth, ethnographic research with patient activist groups because they can demonstrate the importance of community in shaping the experience of illness.  

What are the questions that drive you? 

In my research, I am interested in what I call, broadly, “the politics of diagnosis”—that is, what is the social function of a diagnostic term? How does a diagnosis emerge as legitimate or illegitimate? ME/CFS is a striking example. It has been over 30 years since the CDC first investigated and named it, yet, it is still a stigmatized and misunderstood illness. I frame my questions around the sociocultural take-up of illness, what impact it has on the chronically ill person, and what it says about American culture. I do this rather than taking illness to be “just” a cultural construction, because I continue to be troubled by how scholars in the social sciences and humanities have been complicit in the delegitimization and stigmatization of certain diseases (disproportionately, those associated with women). 

What is your connection with #MEAction NY? 

Following #MEAction NY has been very rewarding. I have been most struck by the parallels with HIV/AIDS activism (like the AIDS Coalition to Unleash Power-ACT UP) and how AIDS activists today continue to support the ME/CFS community and activist efforts. It has been heartening to see alliances between these two overlapping communities. Moreover, it demonstrates what is at stake in how we define, conceptualize, and respond to illness. 

It’s been a pleasure working with the #MEAction team and I look forward to hearing about your experiences through this research project! 

Categories: Actions, Enrolling studies, Featured actions, Research, United States

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6 comments on “Take the NYU Research Survey about your ME Experience
  1. Maschelle Mashburn says:

    having read the interview, I find myself crying. I have never had anybody truly interested in what has been and still is happening to me. I’m not sure how to begin, because I’ve never been asked about my experience. To cry because I’m so touched that a researcher is interested in the societal bias we have to deal with makes me feel like I actually DO matter.
    I’m definitely going to answer the questions she asks on the survey to the best of my neuro-cognitive ability.

    1. Autumn Raye says:

      Maschelle, I also cry when I read how interested & hard working researchers/scientists/doctors/caregivers/etc are for All of us with ME.

      You Matter! Always believe in yourself. You are a surviving Warrior. Hugs, from a fellow ME/CFS Survivor.

  2. Siobhan says:

    This sounds so interesting! I did my undergrad in sociology/anthropology and and have always been interested in the social construction of deviance and stigma. I’m now a social worker in mental health (where stigma remains a very difficult part of people’s illness experiences) and am also living with M.E. Since I’m Canadian I can’t help as an interview participant but would be very interested in following your research. All the best with your research!

    1. Autumn Raye says:

      Siobhan, a huge hug from a fellow ME/CFS Warrior!

  3. John Lemon says:

    I am a Gulf War Vet and suffer from the symptoms of ME/CFS. I read about your study and am interested in getting involved. I know it’s took late for the study but is there any other way get involved. I served 5 tours of duty in the Persian Gulf (Saudi Arabia and Kuwait from 1996-2000) in support of Operation Southern Watch. Neither the VA nor the DoD recognize CFS as a viable disease. As a result they immediately deny all claims for CFS. I have filed 3 claims since 2012. The reason I am interested in this study is perhaps the results will convince the VA and DoD that CFS is truly viable disease and I along with other Gulf War Vets can get our claims for CFS approved.
    Sincerely,
    John F. Lemon, SMSgt (USAF (Ret.)

    1. Emily Rogers says:

      Hi there, John, could you send me an email at emily.rogers at nyu.edu? Thanks!

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