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…
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…
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…
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…
We welcome measures in the Chancellor’s Autumn statement to support disabled people with additional cost of living pressures. However, while these measures go some way to recognising... This post appeared first on Action for M.E. Read more >>
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…
ANZMES has made this PDF version available to those who wish to download for their own use. IACFS conference 2022 combined report Download This post appeared first on ANZMES. Read More >>
Nieuw ME/CVS-onderzoek in Duitsland Hoopvol nieuws voor patiënten met myalgische encefalomyelitis/chronisch vermoeidheidssyndroom (ME/CVS). In Duitsland investeert de overheid 10 miljoen in een nieuw netwerk dat medicijnen gaat testen voor ME/CVS. Dat meldt het Charité, de universiteitskliniek van Berlijn, in een persbericht. Onder leiding van professor dokter Carmen Scheibenbogen wordt een…
The article published in NY Magazine on Nov 4, 2022, “Has Long COVID Always Existed? The pandemic might not have spawned a new chronic illness but rebranded an old one,” was a disappointing step back 30 years to a time when the science of post-viral conditions was young. Back then,…
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.…