Chfrazzle
Active Member
Hi everyone. I hope spring is bringing you a sigh of relief and some sunshine on your shoulders. It's been a long long year and I truly hope we can get back to some level of normality. I had taken a break from ME/CFS social media groups, Youtube, Pub Med, NIH, etc. in trying to stay informed. I am the caregiver of an adult child with ME/CFS. I felt I was spending too much time keeping up to date and neglecting my family and my own mental health. So easy to get stuck in the rut of reading news about ME/CFS that doesn't materialize or details of treatments that are not possible to utilize. But since I still feel the need to stay informed for the sake of my child I have gone back into research mode. Mainly motivated by fear, fear of missing something that might be helpful and secondly from my nerdy curiosity. I had been following OMF - Open Medicine Foundation fairly religiously . Seems they were the most energetic group, or at least most enthusiastically marketed. I do believe they met via video conferencing (Did they?) during COVID? I also checked in with Dr. Jarred Younger's neuroinflammation group at UAB. Nothing substantial from them for several years. Does anyone have any updates or info to report? Am I just not looking in the right places? I really feel with April here and it being the season for advocacy that we need to be hearing more from those doing research in ME/CFS. What can be done to propel those researching to reach out and provide us updates? Please post what you have heard or what you know. I think we could all use some news that may be inspiring or hopeful.