Stacey S DeLoye

Long term follow up of a phase 1 trial of an mRNA tumor vaccine shows that 7/8 patients with pancreatic cancer, who mounted an immune response to the vaccine, are still alive 6 years later. This is breathtaking data and shows the promise of mRNA vaccines. nbcnews.com/health/cancer/…

The independent research by a world renowned breast cancer oncologist at UCLA, Dr Aditya Barda, breaks news today at AACR that consistently shows regardless of the stage of BREAST CANCER, that post Covid lymphopenia results in poorer prognosis, poorer response to treatment and even 2x higher recurrence when patients are in remission. The relationship of low NK and low T cells to breast cancer ( and frankly all cancers ) is so clear. Will share his data that he presented at major breast cancer conferences and now at AACR next. Very compelling

@TomKindlon This seems like good news…maybe.

From Norway Longitudinal study of genome-wide DNA methylation in individuals with and without post-acute symptoms following SARS-CoV-2 infection tandfonline.com/doi/abs/10.108… Screenshot from latest Science for ME weekly update #LongCovid #PASC

Study of neuro #LongCovid patients found pTau-181 (marker of Alzheimer's/brain injury) increased by 59% after COVID. Interestingly, levels increased more AFTER 1.5 years from infection (only 15% increased in the before-1.5 year time period). thelancet.com/journals/ebiom… 1/

@sadfoxqueen Do you have electrolytes?

You guys my blood sugar is super low but the triage nurse won’t let me take anything until I see the doctor. I feel like I’m gonna meet God. What do I do?

@mecfsskeptic Good news. Thanks for your advocacy! We need biomarkers, diagnostic tests, and models. Drug repurposing studies, too. Increasing grant availability will make a huge difference how many research groups are willing to study this.

1) Some good news: MEAction announced that it has secured a meeting with the NIH Director, Dr. Bhattacharya, on May 13th to discuss funding for the NIH ME/CFS Research Roadmap.

University of Florida recognized as one of Forbes' 'New Ivies' for 2026 | Click on the image to read the full story wpbf.com/article/uf-uni…

@AntoineMECFS A teaspoon of apple cider vinegar in a cup of warm ginger tea is very soothing. Plus papaya enzymes with meals. My fave: a.co/d/04sNbiWs

Stomach is dead. Full blown nausea and intense pain since 3 days. No reason at all. Will lose weight for sure. Awful crash. Gives me spasms at night and preventing sleep. Can't move. I hope this is the end #MECFS

@elizaclove Yes, helpful.

I can now possibly trial LDN because I have got the diagnosis and can go to a provider. Has anyone had a good response to LDN for their ME/LC? I have heard it could be good for weight loss and inflammation. I may have some insulin resistance that it could help.

@amiautoimmunex To clarify… the fizzy electrolyte tablets are a problem for me

@amiautoimmunex Are you drinking a lot of electrolytes? They can throw off your stomach acidity. Other big help, papaya enzymes with meals.

I think my MCAS is causing some form of gastroparesis or slow gut motility. So the food I eat just sits in my stomach and I’m constantly reacting to it and in pain. But what would cause my MCAS to get worse?! I just geniunely don’t know what I’m supposed to do.

@sadfoxqueen Are you able to take an Epsom salt bath? It’s amazing comfort for itchy skin.

Fuck I think I’ve been having anaphylaxis constantly. No wonder I’ve felt like I’ve been dying for the past three days. I’ve been constantly itchy and burning and red and hot and covered in rashes. My parents gaslight me so badly I end up gaslighting myself

@JackHadfield14 With compression to the waist, I am managing to do a few reps with light hand weights and not yet getting PEM. Couldn’t do that without compression.

I also think this part of my disease is not the same as everything else. My visual symptoms started much earlier and followed a different pattern. My muscle weakness also became its own major problem after a different turning point. So I don’t think one simple theory explains all of it.

I think I may have narrowed down the main driver of the worst part of my illness. Not all of my symptoms look like one single problem. The brain fog, head pressure and neuropathy may be one linked process, and it may point to a specific mast cell and nerve mechanism.

@JackHadfield14 Mast cells release something like 200 different chemicals, histamine is just 1. Vasodilating prostaglandins, platelet activating factors, VEGF, interleukins, heparin, proteases…

Antihistamines did not do much for this phase, which makes me think it may not be just “too much histamine.” It may be a broader mast cell and nerve signaling problem, where many chemicals are involved, not just one.

@JackHadfield14 NAC helps a lot with the reactive upper airway issues. Dr. Klimas gave me KPax Immune, a supplement with NAC, plus luteolin. They help. Compression, very heavy, to the waist, is amazing for POTS and mental stamina, for me.

So my current theory is that COVID may have pushed my immune and nerve system into a more reactive state. Then later events may have made that state even more unstable. Since then, the upper airway and sinus area may have become one of the main places this process is happening.

@JackHadfield14 The Make Visible podcast just dropped a good episode about POTS: podcasts.apple.com/us/podcast/mak…

My main symptoms are severe brain fog, pressure high up behind the nose and palate area, post exertional muscle weakness, visual snow type symptoms, POTS, shortness of breath, reflux, intermittent neuropathy, and seasonal narcolepsy type episodes.

Congress needs to act quickly to protect creators and artists.

@iatrogenicse I’m sorry to hear that, wishing you good care and recovery.

I had a seizure in the bathroom and the ambulance is now transferring me to a care home.

@laramecfs leave behind a copy of the Bateman Horne Center’s guide for clinicians. It is free online.

Looking for #gearheads #automotiveengineers or #mechanics who have thoughts on protecting my car engine from crappy, ethanol-laden gas. Any additives we should use? #cartalk