Could you be our new Communications Volunteer in 2023? Apply today.

We’re looking for a new volunteer to support the World ME Alliance in growing our social media presence and helping with our website. Are you looking for something new and exciting to do in 2023? Apply now The World ME Alliance is a unique coalition of ME organisations from around…

Continue ReadingCould you be our new Communications Volunteer in 2023? Apply today.

On World AIDS Day, We’re Taking Action at the White House

MEAction is headed back to the White House for another BOLD ACTION on December 1st at 12pm ET for World AIDS Day. Join us virtually—or on-site if you’re able—for an important day of action. We’ve teamed up with the amazing and dedicated activists at Health GAP, ACT UP, Treatment Action…

Continue ReadingOn World AIDS Day, We’re Taking Action at the White House

Solve Ramsay Grant Scientists Among Those Awarded Nearly $5 Million for Biomedical Research

This week the Patient-Led Research Collaborative (PLRC) announced $4.8 million in biomedical research awards for Long Covid and associated conditions. ine research projects in Long Covid, ME/CFS, dysautonomia, and associated conditions will study “many investigative paths, including microclots, spinal-structural abnormalities, immunologic dysfunction, microbiome changes, mechanisms of sleep dysfunction, computational drug…

Continue ReadingSolve Ramsay Grant Scientists Among Those Awarded Nearly $5 Million for Biomedical Research

Carers rights day 24 Nov 2022 – Caring costs

Caring costs: Carers Rights day Caring Costs in so many ways. It could be the cost to unpaid carers’ wellbeing and ability to access health services. Sometimes it’s the financial costs associated with looking after someone – or the effects on carers’ employment options. Taking care of someone may cost…

Continue ReadingCarers rights day 24 Nov 2022 – Caring costs

Infection-associated chronic disease experts needed at ARPA-H

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…

Continue ReadingInfection-associated chronic disease experts needed at ARPA-H

BOLD ACTION is a Commitment to Healthcare Justice for People with ME

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…

Continue ReadingBOLD ACTION is a Commitment to Healthcare Justice for People with ME

Een hart voor ME 2022

Een hart voor ME 2022 Voor het 5e jaar op rij verkoopt 12ME verse hartenwafeltjes om het wetenschappelijk onderzoek naar de ziekte myalgische encefalomyelitis/chronisch vermoeidheidssyndroom (ME/CVS) een duwtje in de rug te geven. De wafeltjes worden ambachtelijk gemaakt aan de hand van een geheim familierecept. We presenteren ze in feestelijke…

Continue ReadingEen hart voor ME 2022

What Primary Care practitioners need to know about the new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome in adults

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…

Continue ReadingWhat Primary Care practitioners need to know about the new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome in adults