My name is Gabriel San Emeterio and I’m the cofounder of Strategies for High Impact and its Network for Long COVID Justice. I’m grateful to be here with the communities that I'm a part of and that I hold dearly which are: people living with HIV, and people living with illnesses that have a viral trigger such as Myalgic Encephalomyelitis or ME/CFS and Long COVID. Today, many decades after AIDS started killing us, we are in the crosshairs of colliding pandemics.Today is the 34t

Reflections from the World AIDS Day protest at the White House Protest

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

New York Magazine’s Intelligencer published an fallacious article last week about Long COVID and ME/CFS in which the author, Jeff Wise, paternalistically argues that graded exercise therapy (GET) and cognitive behavioral therapy (CBT) can successfully treat patients if only the ME and Long COVID communities were open to this possibility. Wise fails to acknowledge the long history of patients willingly undergoing these treatments at the guidance of their doctor, and the subseq

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.

On Wednesday 28th September, #MEAction Scotland led a successful #MillionsMissing demonstration outside the Scottish Parliament - the first time it’s been held in-person for three years. While it was in some ways a smaller event than #MillionsMissing Scotland was in 2018 and 2019, what it lacked in spectacle it made up for in engagement from politicians and the press.Approximately 120 people with ME, their friends and families joined #MEAction Scotland at the demonstration. A

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

#MEAction and Mayo Clinic win SIDM for diagnostic and treatment improvement at Mayo Clinic Rochester for people with ME/CFS!

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.

The press hits are rolling in! The media showed up in a big way yesterday to cover our #MillionsMissing protest in front of the White House.  One day after President Biden declared the “pandemic is over,” our community was at the gates of the White House to send Biden a message that a pandemic of chronic disease rages on. Protesters called on President Biden to declare Long COVID and ME a national emergency, and to provide all the urgent, full-scale resources for addressing t

Protesters disabled by Long COVID and myalgic encephalomyelitis (ME/CFS) are protesting at the White House sidewalk TODAY at 12 p.m. ET to say that the “pandemic is not over,” and to call on President Biden to declare Long COVID and ME/CFS a national emergency.