Its ME Matina

5-star review: "As a physician who manages patients with chronic pain and other debilitating illnesses, I consider this book to be a must-read. Trust me: if you want to thrive in the midst of YOUR illness, read her book.” livewithcfs.blogspot.com/p/my-book.html

LA Weekly: How Emily Taylor Shaped Solve M.E.’s Catalyst Awards to Accelerate Breakthrough Research in ME/CFS and Long COVID Article about the Catalyst Awards, a program which funds ME/CFS and Long Covid research. laweekly.com/how-emily-tayl… #MEcfs #LongCovid

The failure of medicine is the denial of a clear-eyed assessment of the dire situation in which patients often find themselves, which leads to trivialization; lack of funding for research, clinical services, and social care; and therefore absence of cures. bmj.com/content/389/bm…

At #MillionsMissing, we made a significant breakthrough. The Office of the Surgeon General has committed to advocating for our community. This is a meaningful step toward the federal recognition that people with #MECFS & #LongCOVID deserve. More info: meaction.net/post/4-000-voi…

This #MillionsMissing was powerful. "Medical Frailty" was our rallying cry to advance research and protect Medicaid. We met with the Acting Chief of Staff to the U.S. Surgeon General, and connected with the Centers for Medicare & Medicaid Services. #FrailAndFurious #pwME

A Novel Immunomodulatory Strategy for ME/CFS + A Paradox Resolved? #MECFS healthrising.org/blog/2026/04/2…

People with #ME need protection from disbelief. Decades of dismissal and trivialisation of the disease has resulted in widespread misunderstanding, neglect, and harm. #MEAwarenessWeek

Tracking blood flow to the brain could become a good management tool for those with POTS-like symptoms and MECFS (and LongCovid). The Gen 2 Lumia uses a sensor in/near the ear (external carotid artery) to measure changes in blood flow heading toward the brain. I am really excited about this new blood flow to the brain tracking device. I have tried a few others based on FNIRS tech (Mendi, Muse Athena 2) but while these are interesting tools for other things - they would not be helpful for understanding blood flow to brain dynamics as one just goes about their daily/nightly behaviours. I love tracking devices but when they are too "gameified" they lose me - I want stuff that is operating in the background and is not only working for me when I am actively doing something with it. The Gen 2 Lumia also appears to be a general tracker - including a sleep tracker (which is very interesting and cool). As a long-time Oura ring user (as far back as the first version) - I am officially excited about this new tech. I missed out on the first gen of lumia as it was not available in Canada (which frankly bothered me immensely - but given how cool this Gen 2 release is - I am less bummed than I was). The kickstarter for the Gen 2 Lumia is up and you can save 33% with this link (you cannot access this discount just from kickstarter...its a special promo that is going for the next 48 hours). Just click: lumia-2-smart-earrings.kckb.me/5cb42720

I've always thought it's one of the biggest medical scandals of the new millenium, not just the current century.

We need help! There is SO MUCH SUFFERING and so little research funding. We are losing patients to suicide because they lose hope.

We showed up in front the U.S. Department of Health and Human Services today, joined by Dr. Stephanie Haridopolos, Principal Deputy Assistant Secretary for Health - Policy and Chief of Staff/Senior Advisor to Office of the Surgeon General. #MillionsMissing #FrailAndFurious

Full circle moment: the med student who received @AANmember Student Prize this year is one of my mentees who worked with our #Dysautonomia Clinic research team. And... I was also the recipient of the same award @Jacobs_Med_UB _ _ years ago! 🤣🧠🎉 #Neurology #WomenInSTEM

#MECFS and #longCOVID: Measuring Limits with a Heart Rate Monitor & Step Counter - I use two different methods to quantify my limits and help me pace and prevent post-exertional crashes. Here's how you can, too: youtube.com/watch?v=UTpmI8…

We are at HHS today for #MillionsMissing to educate about what's at stake for disabled people under #Medicaid Work Requirements. HHS is expected to finalize its guidance to states on "medically frail" exemptions by June 1st. meaction.net/savemedicaid #FrailAndFurious #pwME

Hey frail friends and friends of the frail, let's use a little humor to get more signatures for our letter to HHS! The you either laugh or cry kind! Let's get that letter to HHS signed now! A huge thanks to all who volunteered to be in this video! #Medicaid #FrailandFurious

There is no effective cure for #ME and little treatment for symptoms. People with ME are forced to avoid deterioration by carefully controlling their energy expenditure and exposure to harm. #MEAwarenessWeek

Online concert to raise awareness about ME and support for Chris Ponting's work at U of Edinburgh: linktr.ee/isaac4bluesund…

NIH and UCSF researchers argue Long COVID trials should begin now. They call for disease modifying trials of immunomodulators, antivirals, neurological drugs, GLP-1 drugs, monoclonal antibodies and devices. thelancet.com/journals/eclin…