Coping with Chronic Illness

Researchers Recruiting 5,000 First-Degree Relatives of People with MS for Genetic/Environmental Research Study

Researchers from the Harvard Medical School, Brigham and Women’s Hospital, and Partners Multiple Sclerosis Center are recruiting 5,000 subjects who have at least one first-degree relative with a diagnosis of MS. The goal of the study is to identify the genetic, environmental and immune profiles that may increase a person’s risk of developing MS. A first-degree relative could be a parent, sibling, or child of a person with MS, and the study is limited to those between 18 and 50 years of age. The GEMS (Genes and Environment in MS) study is led by primary investigator Philip De Jager, MD, PhD, a Harry Weaver Neuroscience Scholar of the National MS Society. The study is privately funded.

There is no cost to participate in the study, and participants can reside anywhere in the United States because no travel is required to enroll in the study. Some travel may be required for the optional MRI portion of the study and the participant will be reimbursed for travel cost.

Get more information here.

Survey on Invisible Illnesses and Hidden Disabilities & Identification Symbol

Laura Brydges and Jennifer Martin bring their personal experiences of having disabilities together with more than 30 years of research and health communication expertise. They began a group last year on Facebook called “Hidden Disability” and now have launched an invisible illness and hidden disability survey that asks about hidden disabilities and the idea of an international symbol/wallet card. It is a secure and confidential English-language survey that will give adults everywhere their chance to share their opinions on some new disability issues.

Take the survey here.

I took the survey and realized that I am in no way interested in a wallet card with a hidden disability symbol on it. An informal symbol wouldn't do anything to help me. I can't figure out when I'd use this hidden disability symbol. Would I flash it at someone and tell them I need a place to take a nap? Would I pull it out and give a lecture about hidden disability to anyone who makes a sarcastic comment about my taking the elevator and not the stairs? Honestly, I don't need a symbol to give that lecture.

I'm not sure I see a purpose to having a specific hidden disability symbol. There are disability symbols and though they are limiting in that they feature only a figure in a wheelchair, they are also widely accepted as to their meaning. Introducing another symbol would perhaps be unnecessarily confusing. I can go through official disability channels for needs such as parking passes, disability insurance, and accomodations, I'm included under that umbrella even though you can't see my disabilities and I'd still need to go through those official channels even if I had a handy wallet card symbol.

I'm also super uncomfortable about the idea of differentiating disabilities in this manner. Are we also going to tag someone with a visible disability? Are we going to assume those people don't need an ID because their disability is visible? If we do that, are we also assuming that every single person with a disability needs and wants the same types of assistance? Some people with visible illnesses don't identify as disabled and don't need or want assistance. Some do identify as disabled and do need/want assistance. The same goes for those with invisible disabilities/illnesses. I think the idea of an identification card is too simplistic and could actually cause more confusion and harm than it would help.

If other people don't understand invisible disability that's not my problem and it's not something I can solve with a wallet card.

Researchers pinpoint molecule which may control how acupuncture relieves pain.

Experiments in mice showed that levels of adenosine - a natural painkiller - increased in tissues near acupuncture sites.The Nature Neuroscience study also found that in mice resistant to the effects of adenosine, acupuncture had no effect.

Adenosine is known to have many roles in the body including regulating sleep and reducing inflammation, the researchers said.

[BBC News]

What really interests me about this is the connection between adenosine and chronic pain. Am I, like some of those mice, resistant to adenosine?

Giving your chronic pain a V.O.I.C.E.

Participate in the University of North Florida's Verification of Illness, Coping & Experience (V.O.I.C.E.) study.

Our goal is to document and share the collective voices of those who endure the challenges of living with chronic physical symptoms. We seek honest and candid responses in an online survey from patients who personally know about the impacts of living with symptoms of illness. Your voice is vital to providing awareness and understanding, and to help establish issues that we need to address in medicine. This research taps into information that lab work and other technologies cannot reveal, relying on input from you for the advancement of science and understanding.

Physicians and other people in your life may not always see or understand your illness the way that you do. We hope to improve understanding by gathering firsthand information from people, like you, who are dealing with ongoing illness for which there is no known cure. We hope this information will help improve the lives and support of individuals who are affected by such illnesses.

There are four surveys, each taking approximately 10-15 minutes to complete. Click here to learn more and take the surveys.

Participate in an online chronic pain study.

The Wasser Pain Management Clinic at the Mount Sinai Hospital & the University of Toronto is now enrolling chronic pain patients for a study investigating the relationships between everyday experiences, the thoughts and feelings surrounding those experiences, and pain.

Click here for more information, to determine eligibility, and sign-up.

I've already signed up. Anything that can help the medical profession understand chronic pain and then help those of us with it is a good thing!