Nina A Tomei, MD

@DafoeWhitney This is beautiful, Whitney. I’m printing this out tomorrow to put on my wall. 🫂

Living just one more day with #MECFS is the saddest, most horrifying thing I could imagine.  But I’m going to do it.  I’m going to wake up tomorrow and let another day slide past me without living it.  And I’m going to get up the next day and do it again.  Acceptance, letting go, courage, crying, cursing, righteous anger, pulling out what’s left of my hair, whatever it takes to get through one more day and closer to that day when we get real treatments and a cure.  It breaks my heart every single day, but I can live with a broken heart.  I need to feel freedom again. #pwME #ChronicIllness

Neuroinflammation der weißen Substanz bei ME/CFS Diese neue Studie liefert mithilfe moderner Diffusionsbildgebung (Neuroinflammation Imaging, NII) die bislang wohl klarsten bildgebenden Belege dafür, dass ME/CFS mit entzündlichen Veränderungen der weißen Hirnsubstanz einhergeht.

@trishorwen Thank you for your kind words! I know she’ll be so touched to hear this

@doctormom63 She is such a talented writer — I pray she gets a treatment one day so that she can live the life she writes about.

My daughter, who is bedridden from chronic illness, has written again. "You’ll die and die everyday and still wake up breathing and older..." the-elephant-in-the-room.com/2026/03/13/mar… #MECFS #LongCovid #pwME #POTS #chronicillness #disability #Sjogrens #EDS #grief #chronicmigraine #endometriosis #gastroparesis #CCI #neuropathy #dysautonomia #fibromyalgia #chronicpain

@NeleHelena Thank you so much, I will pass along to her what you said. She hasn’t been active here lately but may try to come back.

@doctormom63 Your daughter writes so beautifully ❤️‍🩹 Is she still on twitter?

Grateful for the 2 year extension of Telehealth coverage for Medicare. It is essential for the disabled, chronically ill, house-bound and bedridden patients for whom getting to the doctor's office may not only be extremely difficult, but may also result in worsening of their condition. When you become disabled, you must purchase Medicare as your health insurance, even though you are under 65. Telehealth coverage for those of us on Medicare who are too ill to even leave our homes should be made permanent. Let our doctors decide when we need to be seen in person. #MECFS #LongCovid #Sjogrens #POTS #chronicillness #disability #telehealth @WhiteHouse @POTUS @realDonaldTrump @RobertKennedyJr @DrOz @VP @LeaderJohnThune @MikeJohnson @SenBrianSchatz

1) Dr. Felipe Correa da Silva shared more info about the first 10 brain autopsies from the Netherlands. In this new thread, we made a brief summary of his presentation.

@WhiteHouse @POTUS @SenBrianSchatz @RobertKennedyJr @DrOz @SenRickScott @SenAshleyMoody @MarioDB We are grateful for the 2 year extension of Telehealth coverage for Medicare--it is essential for the disabled, chronically ill, house-bound and bedridden patients for whom getting to the doctor's office may not only be extremely difficult, but may also result in worsening of their condition. Many do not realize that when you become disabled, you must purchase Medicare as your health insurance. Telehealth coverage for those of us on Medicare who are too ill to even leave our homes should be made permanent. Let our doctors decide when we need to be seen in person. #MECFS #LongCovid #Sjogrens #POTS #chronicillness #disability #telehealth

In pre-2020 ME cases, analysis of over 7000 proteins demonstrates that exertion disrupts T and B cell signaling, IL-17 pathways, and mitochondrial metabolism in comparison to healthy sedentary controls. Protein signatures correlate with symptom severity.

New research has identified a potential biological cause for post-COVID fatigue/muscle fatigue. Scientists found that a molecule called soluble IL-2 receptor (sIL-2R), linked to immune activation, may directly harm mitochondria in muscle cells.

The recent RAPAMYCIN study - while solid research - overstates its findings. What it actually shows is that RAPA works for a subgroup. Response rate was 33.7% (16.3% being minor gains), not 72.5% once dropouts are counted. But it shows proof of concept. Let’s break it down 🧵

Cool mouse study shows inhibiting 15-PGDH prevents deterioration of the blood-brain barrier and protects mice in Alzheimer's and traumatic brain injury: pnas.org/doi/10.1073/pn… #LongCovid

"There is a fundamental inability in some people to clear the virus in the acute phase" — @VirusesImmunity at the @HHSGov roundtable on #LongCovid last week. She outlines the fundamental drivers of LC, and recommends strategies to address the root cause of symptoms👇

Molecules for the reversal of T cell exhaustion … if this doesn´t make ears in #MECFS research ring! cell.com/cell-reports/f…

New study on PEM! After a mild stress challenge, people with ME had a sharp drop in haptoglobin (Hp), a blood protein that protects the body from damage when red blood cells break down. Low Hp correlated with worse PEM & cognition. …nslational-medicine.biomedcentral.com/articles/10.11… 1/ #LongCovid #pwme

It's estimated that 65 million individuals worldwide are affected by ME/CFS (1). However, there are no clinically validated biomarkers. Here's why that could change...🧵

Ok, so after that (unintentional) cliffhanger, let's talk about energy production infrastructure and post-exertional malaise (PEM) in people with infection- and exposure-associated chronic illnesses (IACIs) such as #LongCOVID, #MECFS, chronic #Lyme and more. Let's start with 1/

Good news for dysautonomia patients w/ Sjogren's! Ianalumab is the 1st immunotherapy to have successful Phase 3 trials in Sjogren's, which means it has a real chance to obtain FDA approval. Sjogren's is the 2nd most common cause of autonomic neuropathy. novartis.com/news/media-rel…

So glad to join this SPEAR Study Group! LongCOVID & Post Vaccine Syndrome patients have waited way too long for expanded research on how #monoclonal antibodies - including those with broadly neutralizing activity - may improve their symptoms. We intend to change that!