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
Last month, our community marshaled together in a mass protest on social media to tell the U.S. Health and Human Services (HHS) that it had NOT accomplished its job when it suddenly dissolved the federal advisory committee – known as CFSAC – that makes recommendations on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), and coordinates across federal agencies
Emerge Australia has released a report on the findings of a survey of more than 600 Australians with ME/CFS. The National Survey of the Health and Wellbeing of People with ME/CFS was carried out in conjunction with ASDF Research, and highlights the need for greater understanding of ME/CFS in Australia.
This past July, 2018, the U.S. Center for Disease Control and Prevention (CDC) launched new webpages about myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) geared to practitioners. ME advocates, clinicians and researchers had provided feedback about updates to these pages but not all of their recommendations were taken on board. As a result, some sections of the site
Advocates at #MEAction UK are working hard to engage Members of Parliament in the fight for appropriate clinical care and investment in biomedical research for ME. Gaining MPs support in lobbying for change is vital to our success. So whether you are a person with ME, their carer, friend, family member or ally, we are
At long last, Karina Hansen is now free from state guardianship! A local court in Denmark released Karina from state guardianship after an independent psychiatrist determined that she does not suffer with any psychiatric illness, understands the role of her state guardian and would like him removed from her case, and that she is capable of managing
The POTS and Beyond conference held in Salt Lake City this past weekend brought together experts in the field to educate physicians and patients on what is known about autonomic dysfunction. The neurology department of the University of Utah School of Medicine partnered with Dysautonomia International and Granger Medical to create this two-day event. The
Listen to the article: Here is a question for you: Is your life small or large? How do you know? Is it possible to have a big life in a single, small room? Or to lead a small life that is lived in many places? Questions like these have become more pertinent to me
Volunteers from #MEAction Scotland will attend the annual conference of the Royal College of General Practitioners (RCGP) in Glasgow this year from 4th to 6th October! Forward ME, an umbrella group of UK charities and voluntary organisations, is hosting a stand in the conference exhibition centre. A workshop on myalgic encephalomyelitis (ME) will take place
The Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) Advisory Committee, set up by the National Health and Medical Research Council to advise the government on research and clinical guidelines, has one more meeting before releasing their report for public consultation. The ME and CFS Advisory Committee will be finalising the report at the next meeting. The
