MAYDAY! Take A Bite Out of Lyme and Thunderclap for ME/CFS/ME are some of the campaigns occurring in May for NEID awareness. Also new, a major lupus study seeks participants.
by Erin Fromkes
Artist, Erin Fromkes, painted the banner above for the MAYDAY Lyme protests. Her art often illustrates the realities of living with Lyme. Check out the article about and her awesome crown of
spoons in
Ability magazine.
Fromkes channels her talents through art making and is emerging onto the scene as an artistic voice for a global community experiencing similar afflictions. . . This ambitious fighter and advocate aims to open a dialogue about the experiences of invisible illness through her art, providing interpretation and a better understanding for viewers with the ultimate goal of expanding global understanding and compassion for those suffering through it.
Twenty-three years ago, May 12 was selected for CFS/ME, and fibromyalgia (FM) awareness activities when patients recognized these conditions were all mostly ignored and underpinned by NEID (neuro-endocrine-immune disorders). By combining into a collective of NEID, we hoped to gain more attention to our needs, and bring more people to events. As with the early years of AIDS events, a large percent of people with NEID aren't able to travel or participate.
May 12 is Florence Nightingale's birthday and was chosen because it is believed now that she suffered with fibromyalgia. Subsequently, Lyme disease, Gulf War illness, lupus, MS, PD, and others have been added and awareness day has extended to the entire month of May.
|
KosAbility is a Sunday 4PM leftkost/7PM east volunteer diarist community of, by & for people living with disabilities, who love someone with a disability, or who want to know more about the issues. Our use of disability includes temporary as well as permanent health/medical conditions — from small, gnawing problems to major, life- threatening ones. Our use of love someone extends to cherished members of other species.
Our discussions are open threads in the context of this community. Feel free to comment on the diary topic, ask questions of the diarist or to everyone generally, share something you've learned, tell bad jokes, post photos, or rage about your situation. Our only rule is to be kind; trolls will be spayed or neutered. If you're interested in contributing a diary, contact series coordinator postmodernista.
|
MAYDAY! Lyme activists protested against the IDSA (Infectious Disease Society of America) this past Thursday and Friday in Arlington MA (Washington D.C.) at the IDSA headquarters. Another MAYDAY protest targets the CDC in Atlanta GA on 28 May.
Take A Bite Out of Lyme is an on-going awareness fundraiser modeled on last year's ALS Ice Bucket Challenge. Participants photograph themselves biting into a lime, share a Lyme truth, donate to Lyme non-profits, and name others to take the challenge. Many people post their photo on Twitter or a video on YouTube. This began in March and now involves hundreds of people and has raised close to $50,000.
Thunderclap May 12th International Awareness Day has a poster to copy and share on Twitter, Facebook, and Tumblr for ME/CFS/FM awareness.
We promote May 12th International Awareness Day for ME, FM and neuroimmune illnesses. This is our day to raise awareness around the world.
This year marks the 23rd anniversary. We are real people, with a real physical illness and we need to raise awareness. Awareness will ultimately translate to more funding, research and a solution.
In addition to activism, we have a new research opportunity. The genetic testing company
23andme is partnering with Pfitzer to conduct a large lupus study.
We want to find a better way to treat lupus through genetics. By partnering with Pfizer (a pharmaceutical company developing drugs to treat lupus) on this study, we will work together to learn how your genes and your environment could play role in lupus drug treatment, and how they relate to lupus risk and progression. This will be the single largest genetics study of lupus anywhere in the world.
Our research objective is to understand the genetic associations found between lupus patients' DNA and their disease, and apply this understanding to Pfizer's drug development efforts.
You can participate in this study without leaving your home. Your full participation will take less than 90 minutes. And your participation is anonymous. With this study, you provide a small saliva sample and complete several online surveys ranging from 5 to 15 minutes each.
Eligible participants will receive (free, usually costs $99) 23andme genetic testing and a $50 Amazon gift card after completing the surveys required during the 12 month study period. All your genetic test results will be shared with you. These are (1) full DNA genotyping and analysis; (2) your personalized genetic ancestry reports; and (3) your uninterpreted raw genetic data. The raw data can be analyzed through various free and paid programs such as
Nutrahacker,
Genetic Genie, and
Livewello.
Events are scheduled worldwide for NEID awareness this month. Tell us in the comments what is happening in your area.
