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
On May 24th, the National Institutes of Health (NIH) released the document Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). An RFI, or Request for Information is “critical for identification and consideration of research areas and topics to be included in future efforts.” The Trans-NIH ME/CFS Working Group
What is Chasing Competent Care? Hope 4 ME & Fibro Northern Ireland have organized Chasing Competent Care as part of a campaign to improve medical care for the thousands of ME and fibromyalgia patients in Northern Ireland. The conference will be tomorrow, Monday, June 6 at 6 PM at the Stormont Hotel, 587 Upper Newtownards
1) PUT YOUR SHOES OUT Put your shoes out on your front step, at the end of your driveway, or in a public place to symbolize a patient, a friend or a loved one missing because of ME; consider placing them with a sign to tell the story of just what that person – and
Hello, everyone! It’s only three days until the #MillionsMissing protest, so it’s time to review what’s gone on so far, and discuss what you can do to help ensure we are heard by our governments! Locations: So, your protest has gone out into the world and is now in a dozen different locations. Locations now
The Center for Infection and Immunity (CII) at the Mailman School of Public Health in New York is internationally recognized as the world’s largest and most advanced academic center in microbe discovery, identification and diagnosis. Dr. Lipkin and Dr. Hornig and the CII team are thoroughly on the case of ME/CFS but they need our community support.
