Dee

Researchers at Westminster University are seeking people aged 18+ with any form of #dysautonomia to take a brief anonymous survey to share your experiences with medical dismissal and accessing healthcare services. Scan the QR code or visit surveymonkey.com/r/D3WJY8S

@tabler_tim @Gmwetz @diannahaze Hoping to add in another immune med like abatacept to address the T cell/CTLA-4 immune reg issues, or daratumumab to clear out persisting plasma cells, but finding a clinician that understands this data & is willing to act on it is very difficult!

@tabler_tim @Gmwetz @diannahaze Quite a few of my T cell & T cell-B cell co stimulation markers are still elevated even on the Ig therapy (which is consistent with some genetic SNPs I have like ctla-4) and also unfortunately consistent w ongoing symptoms. It has helped some, but is far from a silver bullet

Nearly four years in and I don’t understand this disease. I’m crashing so hard tonight. Heart pounding. Cheeks flushed. Nausea. Can’t think. I barely did anything today. Why?! #longcovid #PEM #MECFS

@amiandlife @TraceyABurgess Is this rash itchy?

My first covid infection 2021. I was 16. I was so unwell. Noticed this rash so took a photo. Now I’m severely chronically ill with multiple conditions and I still notice this rash flare up sometimes. I wish someone had warned me. #longcovid #mcas

@tabler_tim @Gmwetz @diannahaze Thanks for sharing your results. Think I might be on same batch/ cohort. My results are difficult to interpret because I’ve been on high dose SCIg for 1.5 years when sequencing bloods were drawn. So difficult to say what is naturally suppressed vs what is suppressed by SCIg!

@Gmwetz @diannahaze For sure, first all of I should say it’s a ton of data and they explicitly don’t make medical recommendations. But they are continually updating the patient pool with more LC and me/cfs people as well as healthy controls. There are also really helpful charts.

@NeuroSjogrens @blinkyblueeyed @amatica Can I ask what AI tool you used please? I’m a bit overwhelmed by the volume of results and how to interpret, delighted to have evidence that is now consistent with symptoms and some blood tests now from Amatica rna sequencing, this is surely the way forward with health!

@blinkyblueeyed @amatica W 20K results there will be a lot of out of range. And ranges are still based on low # of controls. And these pathways aren't familiar to most of us. Do AI's are a good tool. I have many pathways I haven't explored any inputs for yet & am in big life transition atm so am not

Early results from my stack targeted by my @Amatica 20K RNA results: 1) improved sleep even tho stopped ambien/cannabis 2) nap sleep drive returning tiny bit 3) sense of hunger 4) bowel function better 5) Impr stress tolerance. Optimistic re ⬆️ parasympathetic "rest/digest."...

Now imagine how chronic hypovolemic state underlying #POTS affects young women (and men) who live with POTS... But they are asked to exercise and function as if they are healthy people or worse, are sent to psychiatrists to "fix their mindset" when they physically can't do those things. If you're a physician, you need to think about this long and hard. Right now there is a post in a very large physician FB group about a very sick patient with #EDS and POTS, with many physicians commenting that this is psychiatric, needs psych, young people can't possibly be that sick. This ignorance is a medical emergency that we need to fix STAT!

sjogrens.org/blog/2022/venu… It took 7 years for someone as famous and wealthy as Venus Williams to get a diagnosis.

@finnishgunners V interesting, would you mind if I DM you about the daratumumab please?

Since starting daratumumab the scent of my sweat has normalised. That would fit the Sjogren’s suspicion I have.

When challenged O’Sullivan cites Paul Garner’s recovery as evidence #LongCOVID is psychosomatic. But a single recovery story (N=1) cannot establish causation or explain a heterogeneous condition affecting millions.

🧵 Suzanne O’Sullivan on the @amolrajan podcast says #LongCOVID is psychosomatic for a large proportion of patients. There are several problems with this claim.

The CLL Society's current guidance is that all clinicians should mask, "preferably a well-fitting N95 mask," when with patients who are immunocompromised or their family members. It's just the right thing to do.

"There's no such thing as Long Covid, I had covid and I'm fine" is like saying "There's no such thing as climate change, it was frosty here this morning".

Sigh. The human cost of failing to name covid airborne. thetyee.ca/Analysis/2026/…

People would rather risk disability for themselves and others than tolerate being reminded of risk. 😷 That’s not rational. That's denial and avoidance behavior. It's also incredibly careless.

"Covid infection makes you more vulnerable to other infections." So by avoiding Covid, the bonus is that you're also avoiding a whole heap of other shit – i.e. viral, bacterial and fungal infections that take advantage of the fact that Covid fucks with your immune system

When engaging in high-risk activities, such as travelling during the ongoing SARS-CoV-2 pandemic, I use the Aranet4 to find the best-ventilated places at airports, on trains and buses. However, my first line of protection is a mask, which I always wear when leaving the house.

Dalian Medical University, 40 samples, found COVID-19 and Parkinson’s share 77 genes tied to brain inflammation and dopamine loss, with CHI3L1 in astrocytes suggesting infection may worsen or trigger neurodegeneration. journals.asm.org/doi/10.1128/ms…

I don't have many regrets in life, but the more I see through personal experience how well KN95s & N95s work to block airborne viruses, I really wish I'd known about them much earlier in life because I sure as hell would have masked during winter before the pandemic started.