What can you do for ME activism today? Many patients, caregivers, physicians and educators would like to contribute to ME activism in a meaningful way, but patients have limited resources and energy. ME patients aren’t working alone, however: if even a small percentage of the ME population were to work together, we would still be
Patient Voice – a special place online for members of our community to share their stories, art poetry, photography and music. We highlight the strength, joy, humor and beauty that can be found in a life changed by ME/CFS. Our goal is to lift your voice a little higher and help your story be heard loud and clear. Topic for June/July : “Tell us about a time when someone showed you unexpected kindness and it had a positive impact on you as you manage your chronic illness” Make Your Submission!
Calling all ME activists, allies and advocates. #MEAction is gearing up for some major actions that need your input. Now is a great time to join the conversation to a) shape the structure of your advocacy organization, and b) organize the #MillionsMissing protest for September. Even if you’re not ready to dive in yet but you
Join our response to the NIH Request for Information: we seek NIH funding for ME/CFS clinical trials starting with Ampligen as the closest medication to approval for our disease.
The latest of the US Centers for Disease Control’s (CDC’s) Patient-Centered Outreach and Communication Activity (PCOCA) telephone conference calls for ME/CFS will take place on Thursday, June 23, and will feature Dr. Jarred Younger. His talk, which will begin at 3:15 pm EDT (Eastern Daylight Time), is titled, “Current and Future Research on ME/CFS Treatments
On May 25, 2016, we did something extraordinary together: we held the largest, loudest protest ever held for ME/CFS. We came out in force: in Boston, Dallas, San Francisco, Seattle, Washington D.C., Raleigh, and Atlanta; in London; in Melbourne; in a Canada-wide virtual protest; in Bergen, Norway; and in Belfast, Northern Ireland. Impromptu shoe displays
Recently, the US National Institutes of Health (NIH) put out an RFI – a ‘request for information’ – asking patients and patient advocates to tell the Trans-NIH Working Group on ME/CFS what kind of opportunities there are for studying the illness, what technologies and tests might be utilized in studying it, and what challenges ME/CFS
The Bateman Horne Center (BHC) – uniquely positioned to create collaborations between amazing, well-qualified patients and stellar research partners – has an urgent need to increase capacity in order to see patients and grow the research program. Investigators are seeking access to our patient population more and more, yet due to physical and personnel capacity restrictions, too many patients are on waiting list, medical assistants and research associates are doubled up in offices; there is no more room for the equipment needed to expand our research efforts. We have secured a new, larger facility but require the funding needed to expand our critical work. Every gift, of any size, is an investment in real progress.
“Simply by spurring a conversation across the community, I see this as a win.”
Yesterday, the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) announced that the NIH awarded them a R13 conference grant by the National Institutes of Health for their international conference in Fort Lauderdale, Florida, October 27 – 30, 2016. The grant will fund conference registration, travel and hotel expenses for up to 10 early stage
