📈 EFNA has launched a Europe-wide survey on the invisible issues (such as #pain, #stigma, #sleep problems) affecting #neurology patients & their carers. It is available in 8 languages. 📣 Please share the survey with your network! efna.net/survey2024/

A win here would be great for ME/CFS visibility in the research space. Please support Tina if you can! She worked really hard to include footage of real people with ME to really convey a no-BS look at the realities of the disease. #MECFS

Nearly 18 million adults and 6 million children suffer from Long COVID. The time has come to start treating the Long COVID crisis as the public health emergency that it is. thedailybeast.com/bernie-sanders…

New: #LongCovid has cost the Australian economy billions in lost work hours, new research (our study) says abc.net.au/news/2024-08-1… via ABC Australia

One of Germany's biggest science YouTubers Doktor Whatson has just released a new video about #MECFS. It gives a good overview of #MECFS and also briefly addresses the role of the PACE trial.

Save the dates! Long Covid Families, WHN, Wail of a Tale (Non-Profit), Brain Inflammation Collaborative, Long Covid Moonshot & many more have been working together to create a week of information and advocacy. Let's get motivated for #LongCovidKids! 🩷💜🩵

The Invisible Issues of Neurological Conditions! Complete this survey from EFNA and share your experiences with #MyalgicEncephalomyelitis! Deadline 30th August! #MECFS #Neurology #InvisibleIllness efna.net/survey2024/

Our next demo is an invitation to share and listen to the stories of people with Long Covid & ME/CFS, & what they've been through.

While over 17 million EU citizens have been trying to survive somehow with #LongCovid for years, the European Commission is only investing a ridiculous €2m! Stella Kyriakides we need research and care NOW that do justice to the scale of the health crisis. eunews.it/en/2024/09/09/…

We have no words left! Only €2 million are being invested to address the #LongCovid health crisis. This is beyond unacceptable.

AAI has written to Bernie Sanders to offer support for his recently introduced legislation, the "Long COVID Research Moonshot Act" which would, among other things, provide NIH with $1 billion/year for 10 years to support Long COVID research. Read it here: bit.ly/4gbD38x

Be heard! This is your chance to quickly share your lived experience with #LongCovid #MECFS #IACC with Recover:

I just wrote a Long Covid Moonshot letter: Long Covid Pediatric Research. Write one here: actionnetwork.org/letters/long-c…

I want to host a hybrid conference, MIT Dept of BE, with speakers and audience members also joining us virtually to hear from those who have recovered from infection-associated chronic illnesses like chronic #Lyme, #LongCovid, and #MECFS. Have speaker suggestions? Your own story?

A Call for Urgent Action: Better Trials and Inclusion for ME/CFS Patients in the NIH Long Covid initiative. We have sent this letter to the NIH Director, Monica Bertagnolli, urging the inclusion of #MECFS (chronic fatigue syndrome) in the RECOVER Initiative, which currently

Why does the medical-industrial complex still ignore the #MECFS catastrophe? If you're a GP, neurologist or rheumatologist in your 50s or 60s, you've probably harmed at least 100 people in your career by following standard medical practices—whether actively or passively.

This is what we need all over the world: Centers of excellence that drive research, care and education on post acute infection syndromes! #MECFS #PAIS #LongCovid

65 million people are unnecessarily suffering from neurodegeneration from long COVID without a single FDA-approved treatment. You can help them by taking a few seconds to show your support here: actionnetwork.org/letters/moonsh… Long Covid Moonshot