What’s been happening at NICE? The National Institute of Clinical Excellence (NICE) is re-writing its guidelines on ME/CFS. Health professionals in the UK base their care of people with ME on these guidelines, and they are influential globally. Since their inception, patients and their families have found the current guidelines detrimental to care. Last week,
Carol Monaghan MP presented her application for a debate on ME to the Backbench Business Committee on Tuesday October 30th supported by Nicky Morgan MP, Steve Pound MP and Kelvin Hopkins MP. The application was also supported by over 30 other MPs from across the political divide at a crucial time for people with ME
We are a group of people over the age of 55 with ME. In August, Bob Gawron wrote our first article introducing us to the ME community. At that time we had 520 members from around the globe. In less than 3 months we have almost doubled our membership. We are now over 1,000 members
Australia: An hour-long, nationally televised discussion panel on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) on Oct. 16 has raised the ire of many in the patient community, who claim the program overrepresented the likelihood of recovery from the illness, and promoted harmful graded exercise therapy (GET). Insight is a weekly current affairs show hosted
Mary Gelpi first published this post on her blog, 25 Pills a Day. Mary launched a petition asking the director of the U.S. National Institutes of Health, Francis Collins, to increase funding to 100 million annually for ME/CFS. She just sent a large box containing the petition and 50,000 signatures to Francis Collins. The box
N.b. We wrote this article prior to more of the appointments for the guideline development committee being made. Some of these appointments are inappropriate and we are working on a response to that. There are still some committee vacancies that have yet to be filled. We’ll update everyone as soon as possible. In the meantime
A productive and extremely positive meeting on the current developments on ME in the UK took place on Monday, 22nd October in the UK Parliament. Carol Monaghan, MP, and David Tuller, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health, University of California, met at
ACTIVISTS PROTEST SPEAKER AT COLUMBIA UNIVERSITY CONFERENCE Human Rights Abuser Per Fink is Not Welcome in New York Follow the story at: @meactnet and #ScienceNotStigma FOR IMMEDIATE RELEASE October 18, 2018- New York, NY Activists with NY #MEAction will converge on Columbia University Saturday, October 20that 8:00 a.m. to protest Danish Physician Per Fink’s appearance at the 4thColumbia
On August 27th, #MEAction published a petition calling for the U.S. Center for Disease Control and Prevention (CDC) to immediately halt its plan to issue a sole-source contract – meaning there was no true competitive bidding process in place – to the Pacific Northwest Evidence-based Practice Center (EPC) for conducting a literature review for myalgic
PLEASE NOTE: The Unrest CME has now expired. However, you can still recommend the film to your provider and access the associated materials. The film is available on Netflix and can be found here. We are so thrilled to announce that US healthcare providers – including doctors, nurses, physician assistants, therapists and social workers – can now
