junkcrap50 retweeted
WCVB: 'Philanthropist, former Celtics co-owner Steve Pagliuca backs $15M long COVID research effort'
"It’s really hard to watch if one of your children is sick and one of your friends is sick," Pagliuca said. "And so this really needs to be done."
wcvb.com/article/former-celt…
junkcrap50 retweeted
I'm currently trialing a drug called "Trimetazidine" and it works!
My entire vascular system is damaged.
Each cell screams for oxygen,which also caused me to develop heart failure.
My entire body burns/hurts, it feels like I'm running a never ending marathon sprint.
I feel sick, feverish, hypoxic,
but my heart is quiet, it doesn't scream for oxygen right now.
It's keeping me alive, and out the ER.
Trimetazidine is a a metabolic modulator that is prescribed for Chest pains, and it works by shifting your cells from fatty oxidation, which costs more energy, to breaking down glucose.
The heart relies more on fatty oxidation, so the effects are greater there, but it works systemically.
It's also used as a doping agent by athletes and currently being trialed for ME in Australia (TRI-ME trial).
The majority of Long Covid patients have blood flow issues, because Covid primarily damages the microvasculature system.
This affects everything and perfectly explains a lot of our symptoms.
Maybe some others could benefit from TMZ as well ? I have to also add that it can cause Parkinson like symptoms. A lot of Long COVID patients also suffer from neurological symptoms, so it might worsen that.
That's why this drug is banned in a lot of countries, so your doctor might need to import it, if they think it could benefit you.
junkcrap50 retweeted
Why ME/CFS patients should be running DUTCH panels
Most ME/CFS research measures cortisol output, how much your adrenals produce. Almost nobody measures cortisol clearance, how fast your tissues break it down and dispose of it.
Cortisol breaks down collagen, that's why long-term steroid use thins your skin. If you can't clear cortisol fast enough, it sits in your tissue too long and does that damage slowly, for years, while your blood test looks completely normal. That gives you loose skin, easy bruising, bad healing and hypermobility, which looks like EDS (common in ME/CFS world)
Cortisol is inactivated largely by 5α- and 5β-reductase. If that clearance is impaired, a normal stress pulse lands on tissue that can't dispose of it on schedule. Serum cortisol looks fine. Tissue exposure runs high and lasts too long.
That would produce: a disproportionate response to ordinary stressors, a delayed crash rather than an immediate one, blunted inflammatory response to infection (can’t feel sick from virus common in ME/CFs) , and poor recovery from exertion.
That's post-exertional malaise described in clearance terms. And it explains the delay.
ME/CFS needs to run DUTCH panels specifically: a serum cortisol test gives you a snapshot of circulating hormone. DUTCH measures the metabolites a-THF, b-THF, b-THE and gives you a clearance rate, a 5α/5β preference ratio, and the cortisol/cortisone balance.
If you have ME/CFS, run a DUTCH Complete. If possible, run one at baseline and one during a crash. The comparison is the thing, if clearance markers shift during PEM while output stays normal, that's a big finding here.
junkcrap50 retweeted
The "confirmed" part is a stretch, but sleep inertia in ADHD is a real research thread. Circadian rhythm often runs later in ADHD, so the alarm goes off in the middle of your biological night. Clock gene variants and dopamine signaling both play into it. Bright light right after waking helps some people.
geneticlifehacks.com/adhd-ge…
This quoted post is unavailable.
junkcrap50 retweeted
CD19-CAR T cells clear the EBV-infected B cells that carry autoreactive antibodies. Rituximab doesn’t. That may be why only one of them produces lasting remission.
New Robinson Lab preprint led by me and @panditmahes. 🧵
biorxiv.org/content/10.64898…
junkcrap50 retweeted
8 of 12 people with autoimmune disease got a single infusion of CAR-T cells and went into lasting remission - years, no drugs.
With rituximab, the standard way of wiping out B cells, 0 of 15 did. A new preprint argues the gap comes down to one kind of cell - a B cell infected with EBV.🧵
Stanford researchers studied 27 autoimmune patients and found CD19 CAR T-cell therapy cleared EBV-infected, autoreactive B cells that resisted rituximab.
8 of 12 CAR T-cell patients achieved sustained drug-free remission.
biorxiv.org/content/10.64898…
junkcrap50 retweeted
Emerging evidence suggests that neuroinflammation, driven by elevated proinflammatory cytokines (e.g., IL-6, TNF-α), is a key factor in treatment-resistant cases.
We argue that this is especially true in cases of sudden-onset, post-infectious triggers (e.g., PANS, #LongCOVID) or immune dysregulation.
The prevalence of depression and anxiety in children and adolescents has nearly doubled since the COVID-19 pandemic. Global rates are astounding:
- 25.2% for depression
- 20.5% for anxiety
The skyrocketing number of pediatric psychiatric cases suggests traditional treatment approaches are inadequate, such as:
- psychotherapies
- psychotropic medications
These approaches offer:
- poor adherence
- tolerability issues
- treatment resistance
- low efficacy (response rates below 50-70%)
Youth are especially vulnerable to side effects such as:
- suicidal ideation
- severe withdrawal symptoms
\ A Role For Inflammation?
Emerging evidence suggests that neuroinflammation, driven by elevated proinflammatory cytokines (e.g., IL-6, TNF-α), is a key factor in treatment-resistant cases. We argue that this is especially true in cases of sudden-onset, post-infectious triggers (e.g., PANS, Long COVID) or immune dysregulation. Further research is needed to develop protocols and guide clinical adoption.
Please share this so we can amplify this message.
Read our publication here:
buff.ly/GLXdK2r
On a related note, our health tracking platform, unhide, is available for children and adolescents! Visit unhidenow.org to learn more.
junkcrap50 retweeted
Onderzoekers vinden #MEcvs biomarker met een gevoeligheid van 87% en bij de controle groep werden 94% van de gezonde controles uitgesloten.
Ze vinden specifieke #microRNA's bij #MECFS die bij gezonde mensen bijna niet te vinden zijn.
link.springer.com/article/10…
junkcrap50 retweeted
So glad for these smart Japanese researchers who have tirelessly added novel approaches to #MECFS research!
This time: a search for #biomarkers - and a successful (if exploratory) one!
link.springer.com/article/10…
junkcrap50 retweeted
Thinking takes extra blood flow to the brain. In people with ME/CFS and POTS, studies show that normal bump doesn't happen during mental tasks.
Back in the 1990s, researchers found reduced blood flow to the brain in about 80% of ME/CFS patients. That's one physical reason brain fog shows up as word-finding trouble, hazy thinking and losing your train of thought.
Blood flow is only one of several causes in the research. Others include low B12, folate, vitamin D, thiamine or magnesium, high inflammatory cytokines, lingering infections like long Covid, microclots, sleep apnea, low thyroid and medications.
Figuring out which one fits you matters more than another "get more sleep" tip. Which one turned out to be yours? 👇
geneticlifehacks.com/brain-f…
junkcrap50 retweeted
Dysregulation of mTORC2 in intestinal cells can cause neuropsychiatric effects such as depression, anxiety, cognitive impairment due to dysbiosis, chronic visceral pain, and inflammation [126].
mdpi.com/2624-5647/8/4/69
junkcrap50 retweeted
Amatica has closed a multi-million dollar seed round. We're using it to subsidise our test and accelerate building the richest multimodal dataset in chronic neuroimmune disease for AI analysis. What's changing? 🧵
junkcrap50 retweeted
BCG vaccination mitigates tau pathology, restores cognitive function. BCG induces systemic & central nervous system myeloid cell reprogramming- limits neuroinflammation, enhances tau clearance,rescues cognitive & neurodegenerative phenotypes in a tauopathy science.org/doi/10.1126/scia…
junkcrap50 retweeted
University of Perugia researchers reviewed evidence linking persistent JAK/STAT signaling to inflammation, autoimmunity, and dysautonomia in Long COVID.
JAK inhibitors show early promise, but larger trials are needed.
frontiersin.org/journals/pha…
Gisteren verscheen er een stukje in Men's Health @MensHealthMag over ons onderzoek, en waarom ook profatleten long covid kunnen ontwikkelen (en hoe je het kunt onderscheiden van overtraining/gewone vermoeidheid):
menshealth.nl/nieuws/wat-is-…
#coverboy :)
junkcrap50 retweeted
This paper revealed the shocking prevalence of neuropsychiatric conditions in patients with mast cell activation syndrome (MCAS).
Here are the numbers...
junkcrap50 retweeted
We’ve been blown away by the response to my interview with @BBCSport & @KatieFalkingham , thank you so much to everyone who has taken the time to read and engage with it ❤️ millions of views across multiple platforms really is immense.
We have since written to @andyburnham , calling on the @UKLabour government to fund research into this horrific illness. I know there’s so much more we could say, but with limited capacity, we’ve tried to focus on the lack of funding, resources in the NHS and how much it’s actually costing the government.
As you can see on the slides, it has been drastically underfunded compared to other illnesses and it is currently costing the UK Government far more than it would cost to fund research. ME is most often a post-viral illness. Therefore, since the start of the Covid pandemic, we’ve seen cases increase drastically and they will continue to increase. We need funding into research urgently. With estimates of people with ME being around 1.35 million, this is a lot of lives destroyed.
I’ve had thousands of messages on multiple platforms since sharing my story so please bear with me ❤️
Thanks to @ThereForME_UK and @wecrunchme for the stats.
junkcrap50 retweeted
British Olympic sprinter Beth Dobbin opens up on 'year of hell' after being diagnosed with M.E. - and reveals she is now bedbound 22 hours a day: 'It feels like you're days away from death' trib.al/rHeHyPg
junkcrap50 retweeted
The Olympic sprinter now bedbound for 22 hours a day bbc.in/3TWaqpx





























