NEWS

Two caregivers share their insights from decades of caregiving for spouse, children, mother, teens and adult children with ME

Where we spend money reflects what we value. From ME research funding to Medicaid cuts, here’s why we’re speaking out, and how you can help.

We know how important this is for you.

Halfway through summer, we have so much to report about our immense, day-to-day work advocating for M.E., for you, and for each other. On the medical front, our ongoing, grant-funded project with Mayo Clinic Rochester continues to transform medical education at Mayo. Together, we have updated the ME/CFS homepage, written a Concise Clinical Review article that will debut in Mayo Clinic Proceedings with an attendant CME, and created a new diagnostic and treatment algorithm on A

#MEAction and three Long COVID organizations published a statement today urging Congress to support bipartisan legislation to establish a national task force to investigate the COVID-19 outbreak. Our organizations have also signed onto Marked By Covid’s open letter to Congress calling for the bill’s passage. Together, we are urging Congress to hold our federal health and research agencies accountable for their abject failure to be prepared for the Long COVID and ME/CFS crisis

DHSC has released an update on the progress of the work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue. This is dated from December 2022.You can read the full report using the link below:DHSC Information Bulletin Dec 22 FINAL MECFS updated

Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February - and your MSPs should be there! The motion calls on the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME, including education of healthcare professionals and development of specialist services. We’re pleased that 59 MSPs have given their support to the motion, and you can see if your MSP supported it on the Scottish Parliament

AIDS, ME/CFS & Long COVID activists demand Biden, Congress fund pandemic plans

White House Must Confront Global Health Nightmare of Colliding Pandemics

Congress launched ARPA-H (the Advanced Research Projects Agency for Health) this past March to focus on high-risk, high-reward research projects with the goal to solve intractable health problems.As ARPA-H is in the process of hiring its first cohort of program managers, #MEAction and a coalition of chronic disease advocacy groups have published an open letter calling for experts in infection-associated chronic illness to pursue this opportunity.Our coalition includes: #MEAct

BOLD ACTION to me, means mobilizing our community to publicly demonstrate our deep and intense—as opposed to shallow and passive—commitment to seeing healthcare justice for people with ME. It is about bringing our issues to the forefront of public consciousness and putting strong pressure on our leaders to act. Taking BOLD ACTION is both a pragmatic tactical tool for building the people-based power of our movement, and it is the vivid demonstration of the too-long hidden cris

Caroline Kingdon's new paper on the NICE guideline for ME was co-written with #MEAction UK volunteer Adam Lowe, as well as Charles Shepherd of the ME Association and Luis Nacul of the London School of Tropical Medicine. As members of the NICE guideline development committee, the authors wrote this paper with GPs and primary care practitioners in mind. It explains the key messages of the guideline, including the need for better and earlier diagnosis, better treatment and the n

Taking BOLD ACTION with our press outreach has led to national media writing about ME.

#MillionsMissing France has been busy.

At #MillionsMissing Scotland many MSPs pledged their support for people with ME, and now they have a chance to follow up on that commitment. And we need you to let them know about it! Sue Webber, MSP for Lothian, has put forward a motion that asks the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME commissioned earlier this year - ​​including education of healthcare professionals and development of specialist services.Motions

Post-viral conditions like ME/CFS provide guidance for estimating the economic impact of Long COVID.

Code change will ensure US can track diagnosed cases of ME/CFS in newly created electronic health records

There has been so much happening since the #MillionsMissing protest on September 19th. We’ve shared some of our amazing press wins. You tuned into the live stream on Twitter. You saw the article that cover our government’s response. We are thrilled. And we want to take a moment to acknowledge all of the amazing activism from home that happened on or around September 19th. We saw #LongCOVID and #COVIDIsNotOver trending online. This is no small feat with all that was going on t

People with ME, Long COVID and other complex, chronic diseases have experienced all kinds of healthcare discrimination. Now there is an opportunity for you to share your story and urge our government to move forward with improved protections to secure access to healthcare that is free from discrimination or prejudice.The deadline to submit a public comment is Monday, October 3rd at 11:59pm ET.Let’s share our stories and tell HHS that discrimination has no place in health care

DHSC has released an update on the progress of the work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue.