@WestHam Fan ⚒ 🏴 | Accidental Centrist I Pro-Pragmatism and Real World Outcomes I Anti-Ideologues.
Joined February 2021
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Shaney Wright retweeted
Our friend in the Long Covid community Gavin died fighting trench warfare. Severe, complex chronic illness is trench warfare - WWI style. The medical support is often WWI style too, and this defined the last days of Gavin’s life. He was still in his 40s, a light in our community, and he fought to stay alive.
Shaney Wright retweeted
As someone who has been on everything from lithium, Abilify, to now Qulipta and Xolair instead:
1.) mast cells/allergy likes to rage in and out like a tornado, often absent of a clear psychosocial trigger. You can go from 0-10 and be fine the next day. Someone can nearly die of an allergy, but then walk out of the ED fine. I have felt extremely suicidal during a Kounis response to a drug and then walked out of the ED fine.
2.) IntellxxDNA's mast cell/allergy panel was more convincing than their psych panels in terms of genetic vulnerability for me
3.) multiple drug sensitivities are a good hint, especially if they promote histamine
"The brain is a tricky thing," I tell patients every day.
Psychiatric manifestations of various systemic and neuroimmune disorders are numerous and should be acknowledged and managed appropriately.
However, in clinical practice, a knee-jerk reaction to prescribe antidepressants and/or psychotherapy is not the way to manage psychiatric manifestations nor systemic and neuroimmune disorder that causes them.
sciencedirect.com/science/ar…
Shaney Wright retweeted
Another blow to the hypothesis that persistent spike protein may be behind the #LongCovid symptoms:
pubmed.ncbi.nlm.nih.gov/4284…
In my view the same will eventuelly happen to the "persistent virus" hypothesis.
pubmed.ncbi.nlm.nih.gov/4284…
We knew this with certainty in 2020.
So tiresome how the same findings are re-established over and over again. I guarantee we'll see the same thing being reported again in 2027, then 2028, and on from there, seemingly forever.
MRI links long COVID fatigue to reduced cerebral blood flow.
radiologybusiness.com/topics…
What treatments?
Dr. Amy Proal, PolyBio Scientific Director, recently joined “Lab Visits” to discuss the process of commercializing and gaining regulatory approval for Long COVID diagnostics. She explained how PolyBio is building a diagnostic incubator program to connect promising early-stage diagnostic teams with guidance and expertise in regulatory strategy, FDA approval, reimbursement, and other key areas of development.
Said Proal, “Our focus now really is taking what we’re learning from the academic research, and making it work in the real world. And that’s because our goal, ultimately, as a foundation, is to get treatments to patients as rapidly as possible.”
Cerebral hypoperfusion is prevalent in ppl with Long Covid (vs controls). It can be tested for with a transcranial doppler. You would expect any Long Covid therapeutic to resolve / improve this indicator. Why then isn't it ever being used as a success metric in treatment trials?
6yrs on, Long Covid research failures:
– crap patient selection & differentiation. Little use of markers like microcirculatory dysfunction etc.
– dogmatic research. Much talk & spin.
– gross lack of autoinflammtory & mast cell disease consideration.
Sad sad state of affairs.
I also think too much attention on fatigue as a thing in itself. Not enough on dysautonomic & microvascular issues. Also not enough focus on genetic disposing factors (as are seen in autoimmune & mast cell diseases) where infections can essentially 'unlock' their expression.
Shaney Wright retweeted
🏆 Here is a beautiful study of 17 patients who presented to the ER with abnormal movements and other neurologic problems and were misdiagnosed with #FND. It turned out that... all 17 patients had #dysautonomia and most improved with dysautonomia-targeted treatment!
🎉 The authors conclude that patients presenting with abnormal movements should be evaluate for dysautonomia and not be mislabeled with FND.
P.S. I was not involved in this study or its publication, I promise, but my experience directly parallels that of the authors'. 😂
frontiersin.org/journals/neu…
Unblinded Long Covid treatment trials that don't phenotype participants based on specific, meaningful biomarkers, and which don't gauge improvement by correlating changes in those biomarkers to changes in symptoms, essentially tell you next to nothing.
With all respect, I'm not sure that claims of feasability & acceptability of remdesivir for ppl with Long Covid says much at all of real substance. I don't really understand why you'd go through the whole rigmarole & cost of a trial just to establish those mere things...
📢 Our paper is published in Oxford Open Immunology:
The @ERASE_LC evaluated whether a 5-day course of intravenous remdesivir is feasible, safe, and acceptable for people living with Long COVID.
This is the first study to specifically examine remdesivir as a treatment for LC.
There will be (almost literally) countless medications that are feasible & acceptable for ppl with Long Covid, in the sense that ppl with Long Covid could tolerate taking them. But that doesn't have anything to do with establishing whether those medications truly help or not.
Shaney Wright retweeted
POTS identified in nearly two-thirds of Long COVID patients
'Published in Journal of American Heart Association..study is believed to be the first to look at autonomic symptoms, heart rate response, inflammatory markers & autoantibodies in people w/LC'
news-medical.net/news/202609…
Shaney Wright retweeted
Topline results from the ADDRESS-LC trial have been released.
The story here appears to be: 1. subgrouping and 2. signal identification.
It needs to be noted that the overall trial population did not reach statistical significance on any individual endpoint.
Heterogeneity has been a continued barrier to finding treatments for Long COVID and other complex chronic illnesses. We are trying to find treatments for highly varied patient populations within one diagnosis, and that is unlikely to get us where we need to go.
But what this trial points to in terms of design is something of real significance: when researchers looked at pre-specified groups based on baseline symptom burden, a much clearer treatment signal emerged.
A meaningful treatment effect in one group can become much harder to detect when everyone is analyzed together.
The finding I am particularly interested in is post-exertional malaise (PEM).
PEM remains one of the most disabling and underserved areas of Long COVID and ME/CFS, with remarkably few therapeutic programs specifically targeting it.
In ADDRESS-LC, patients with high baseline PEM showed statistically significant improvements across PEM, fatigue and objective cognitive measures.
These are exploratory subgroup findings and need prospective confirmation. But that is exactly what signal-finding studies should help us do: identify a signal and determine where to go next.
For PEM, we may now have a signal worth pursuing.
Digging deeper into the biology shared by these patients, and hopefully advancing this signal into a prospective Phase III study, is exciting to consider.
@CODA_research
investors.bioviepharma.com/n…
Shaney Wright retweeted
So incredibly excited BioVie announced the positive results from our Phase 2 ADDRESS-LC trial of bezisterim in Long COVID and proud to have contributed! Thank you to our wonderful participants @BioVie_Pharma #LongCOVID
investors.bioviepharma.com/n…