Jarred Younger Finds a VERY Inflamed Brain in ME/CFS #MECFS healthrising.org/blog/2025/08/0…

Bateman Horne Center July Event Recaps. July 8: Communication in the Context of Being Chronically Ill. batemanhornecenter.org/wp-content/upl… July 15: Who Am I? Identity and Chronic Illness. batemanhornecenter.org/wp-content/upl…

Agree about neuroinflammation, but will add the brainstem, specifically inferior medulla with vagal nuclei, as a CNS localization of #Dysautonomia and #LongCOVID. mdpi.com/2227-9059/13/1…

Plied with Ritalin Disbelieved Marginalized Fired by a Henry Ford doctor for having MECFS Dismissed Laughed at. Henry Ford Health does not care about the chronically ill and allows it's doctors and others treat people already struggling like we are trash.

Prof David Systrom presented findings from an invasive cardiopulmonary exercise test (iCPET) in ME/CFS and Long COVID. youtube.com/watch?v=YIq1QM… Screenshot from AMMES email newsletter #LongCovid #MEcfs

Keystone Long COVID POST Acute Infection Syndromes Symposium - Davis- #longCOVID #MECFS - biological networks get more tweaked after ten years compared to less than 4 years; treatment efficacy dropped dramatically in two minocycline trials in longer duration patients (!)

Thank you for the clarification to us patients. Begs the question though? Why wasn’t it allowed #keystonesymposia ?

WE DID IT! This was HARD WORK. Leading this project was HARD. I am immensely grateful for the support of my team, their time and expertise, their patience. Y'all, every doctor in the world needs to read this manual. Let me tell you why in this thread 1/

Community Symposium on the Molecular Basis of ME/CFS returns Sept 5 on zoom! 8am-1pm PST Attendance limited to 5,000. Registration required and can’t be shared. Registration link: stanford.zoom.us/webinar/regist… See photo below:

They say Twitter is the devil but all it took was me screaming in my tweets asking for help for this lovely man to reach out. Thank you so much Michael R Scoma MD for taking the time to meet with me and help me try to figure out what is going on inside. 🙏

Someone asked me once why PWME are so ANGRY. Can you blame us? Lowest Quality of Life Stigma, ridicule & disbelief No treatments. Loss of careers, lives, dreams & being present in our relationships. Some of us have lived in suspended animation for decades hoping for reprieve.

Almost two years ago, our beloved, brilliant #bethmazur ended her life while visiting me. The grief has softened with time, but the impact has reshaped me. I've written about it here: jrehmeyer.substack.com/p/holding-what…

We need a little levity this afternoon.

Maybe we should create a patient led site that is like a YELP. A site where we rate them on their knowledge of MECFS, LC and the dumpster fire it creates. I just had to FIRE most of my care team for their total disrespect of MECFS patients. Henry Ford Health I'm looking at YOU.

Adam Can confirm many nurses feel this way. I was a mental health nurse and we were taught it is a mental health condition. I had pts on my mh unit with ME. When I was first diagnosed I argued with my doctor that ME isn’t a real thing. I feel ashamed now.

Excellent article.

Over a decade sick and THIS is what I try to explain to doctors and I always explained it like I feel toxic or poisoned. Michael R Scoma MD Dr Ihab Suliman Jay Bhattacharya Todd Maderis, ND S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic Bottsie Hicks ME Awareness Hour Open Medicine Foundation #MEAction Network

Lets talk supplements: After catching Covid in 2022, I developed severe neuropathy in my hands. Nothing touched the pain. Alpha Lipoic Acid Berberine complex with Turmeric A NAD+ Magnesium Noticing some improvement.

Looks like the usual suspects are talking out of their asses once again. I'm looking at you Paul Garner Zachary Grin, PT, DPT Simon Wessely

🧵 Sympathetic article that focuses on US estimates "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and COVID" by Leonard Jason & Arthur A. Mirin This image is a screenshot of the first paragraph which is like a summary #LongCovid #MEcfs 1/