Discover and read the best of Twitter Threads about #ALS
Most recents (24)
In May 2019, Dr. @rschilsky & I co-chaired the #AAADV19 Workshop Plenary Session "Decentralized #ClinicalTrials: The Future is Now." An incredible group of panelists from academia, industry, govt, & patient #advocacy 👇discussed the rationale, challenges, & opportunities of DCTs. 
No one knew yet that the #COVID19 #pandemic was just around the corner. In Mar 2020, FDA released a guidance on conduct of #clinicaltrials during the pandemic: fda.gov/media/136238/d…, & colleagues wrote about the impact on #OncTwitter trials: ncbi.nlm.nih.gov/pmc/articles/P…. /2
FDA has now released a draft guidance on decentralized #clinicaltrials for drugs, biological products, & devices covering #telehealth, remote assessments, consent, shipping of IP, & more: fda.gov/media/167696/d…. #MedTwitter #regulatory #drugdevelopment
Have you ever heard of glutamate excitotoxicity? No? Well, settle in for a thread. You're going to need to know about this fascinating (and slightly scary) topic that's essential to understanding brain health. 🧵 (1/30)
Glutamate is an excitatory neurotransmitter. You need some constantly being released and taken up by neurons to keep the brain functioning. It is critical to properly function several brain pathways essential for mood and cognitive function. (2/30)
In the prefrontal cortex, glutamate signaling is necessary for executive functions like decision-making, working memory, and attention. When glutamate signaling is functioning properly, it's a very good thing! (3/30)
@MadhavThambiset was the voice of reason at the #AANAM. He delivered a Neurology Year in Review Plenary about the dubious record of the anti-proteinopathy framework inspiring therapies in #Alzheimers, #Parkinsons, and #ALS --Some highlights (1/4)
(2/4) Unblinding due to infusion-related reactions or ARIA-H was not accounted for in the sensitivity analysis of the #lecanemab trial. This and other issues have led to an inflated sense of efficacy and underestimated risk for anti-amyloid therapies.
(3/4) What's the magnitude of brain loss induced by lecanemab over the course of the trial? 3 fewer "teaspoons" of brain lost at the highest ('therapeutic') dose of lecanemab.
New work from the lab @NatureAging!❄️Lowering body temperature extends #longevity. We find that cold-induced #proteostasis prevents #aging and aggregation of proteins that cause age-related diseases #ALS #HuntingtonDisease in C. elegans and human cells nature.com/articles/s4358…
This was a tour de force by Hyun Ju Lee, @sedakoyuncu12, Hafiza Alirzayeva, @AlirezaBarandaq, and Amir Khodakarami (3 lab generations!). 1000x thanks to @impetusgrants for believing in us. Thanks to @CECAD_ @CGA_age @UniCologne @UKKoeln for their support
Aging is a major risk factor for neurodegenerative disorders linked with protein aggregation (#Alzheimers, #Parkinsonsdisease , #HuntingtonDisease, #ALS). We hypothesized that defining cold-induced changes can lead to converging modifiers of pathological protein aggregation🤔
@BARMER_Presse @BARMER_ST @BARMER_BW @BARMER_BB @BARMER_HE @BARMER_HH @BARMER_SN @BARMER_RLPSAA @BARMER_MV ES REICHT ❗️
ALLE Therapiemöglichkeiten werden abgelehnt für mich als #LongCovid Erkrankte…
Jetzt wird auch noch die Kostenübernahme der #Diagnostik #abgelehnt 👎🏻
1/5
ALLE Therapiemöglichkeiten werden abgelehnt für mich als #LongCovid Erkrankte…
Jetzt wird auch noch die Kostenübernahme der #Diagnostik #abgelehnt 👎🏻
1/5
#Kosten für die #Hautbiopsie zur Diagnostik der #SFN (POSITIVBEFUND) heute ABGELEHNT ❗️
Rechnung ausgestellt vom @UK_Muenster.
Begrünung: Auftraggeber war ein Privatarzt!
Beide ❗️#GKV - #Neurologen stigmatisierten und diagnostizierten (nun bewiesen) falsch !!!
2/5
Rechnung ausgestellt vom @UK_Muenster.
Begrünung: Auftraggeber war ein Privatarzt!
Beide ❗️#GKV - #Neurologen stigmatisierten und diagnostizierten (nun bewiesen) falsch !!!
2/5
Es grenzt langsam an #UNTERLASSENER #HILFELEISTUNG ❗️❗️❗️
Da gibt man schon Kosten für Off-Label und alternative Therapien im Wert von >10.000€ innerhalb eines Jahres aus und dann wird auch Diagnostik die sich in ihrem Leistungskatalog befinden abgelehnt?? Ernsthaft? 🤬
3/5
Da gibt man schon Kosten für Off-Label und alternative Therapien im Wert von >10.000€ innerhalb eines Jahres aus und dann wird auch Diagnostik die sich in ihrem Leistungskatalog befinden abgelehnt?? Ernsthaft? 🤬
3/5
The blood-brain barrier (BBB) is a crucial defense mechanism for the brain, regulating the exchange of molecules between the bloodstream and the brain. When the BBB is disrupted, it can have severe consequences for brain health. (1/12)
Alzheimer's disease is one example of a condition that is exacerbated by BBB disruption. When the BBB is compromised, amyloid beta-peptide deposits can accumulate, leading to #inflammation and disruption of neuronal function. (2/12)
A disrupted BBB in #Alzheimers means astrocyte and microglia inflammation, disruption of synaptic transmission, and myelin destruction. (3/12)
1/n Thoughts on Neurofilament Light (NfL) as a neurodegeneration biomarker. I expect to hear a lot on it in the upcoming #Tofersen Adcom. @US_FDA refers to it as a promising biomarker of neurodegeneration in several diseases at the Relyvrio #ALS approval👇@ProfRobHoward @pash22
2/n This raises an important question- if decreasing NfL levels are associated with clinical benefit outcomes in #ALS, wouldn’t increasing levels associated with worsening clinical outcomes and/or adverse events in #Alzheimer’s be similarly meaningful? Unfortunately these results
3/n have not been published for #aducanumab or #lecanemab. But they have for #donanemab by @LillyPad in phase-2 where accelerated loss of brain volume seen relative to placebo is associated with Increase in NfL levels. Increase in NFL is also significantly associated with faster
"At first he was very skeptical of claims the virus hides out in the brain, but recent studies made him take it seriously, especially autopsy studies done by @NIH. It might be that residual traces of virus are causing persistent inflammation" #LongCovid washingtonpost.com/business/long-…
"Science is starting to uncover an unnerving fact about viruses: Some might affect our brains over the long haul. It came as a shock that SARS-CoV-2 can lead to lingering neurological problems — a post-viral syndrome we call #LongCovid. But.. might not be unique to this virus."
"Scientists are finding links between common viruses such as influenza & brain diseases like MS, Parkinson’s, Alzheimer’s & ALS. Researchers are hoping that identifying a viral link might finally allow scientists to figure out what causes these mysterious, deadly ailments"
Examining pulse of a patient with “MOTOR NEURON DISEASE” helped me find a cure
1.Motor neuron disease (MND) or amyotrophic lateral sclerosis (ALS), is a progressive neurological disease causing severe weakness and wasting of muscles. It has no cure and results in death in most.
1.Motor neuron disease (MND) or amyotrophic lateral sclerosis (ALS), is a progressive neurological disease causing severe weakness and wasting of muscles. It has no cure and results in death in most.
2. A 50-year old man consulted me 6 months ago for a second opinion. He had complaints of difficulty in swallowing, slurred speech, weakness and wasting of muscles of arms and legs, which had progressed over previous 9 months.
#MedTwitter #neurotwitter #ALS #MND
#MedTwitter #neurotwitter #ALS #MND
3. He was seen by neurologist and after needle electromyography; diagnosis of ALS was made. In view of grave prognosis, patient wished for second opinion. On examination, he had muscle fasciculation, wasting of tongue, arms and leg muscles. Deep tendon reflexes were exaggerated.
HAPPY #THANKSGIVING! So thankful 3x World Series Champ @gehrig38 will be joining @chevvvvvvvv Saturday @ 5pm EST, for a #AMA to discuss the upcoming #launch of his #NFT collections; all proceeds to support ALS research & raise awareness about the disease!
twitter.com/i/spaces/1zqKV…
twitter.com/i/spaces/1zqKV…
#ALS is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control.
More than half of those diagnosed die within 3 years, and still there is little evidence showing how or why one gets it…
More than half of those diagnosed die within 3 years, and still there is little evidence showing how or why one gets it…
Curt will join us to answer any questions from the community, and continue his more than 20 year effort to raise awareness about what is truly an excruciatingly painful death sentence for anyone diagnosed with it.
Next : Mypinder SEKHON on cardiac arrest in COVID-19 era.
Works in Vancouver
COVID 19 era cardiac arrest ARE a lot less sexy with all the PPE. #als #covid19 #resuscitation #LIVES2022
@ESICM
Works in Vancouver
COVID 19 era cardiac arrest ARE a lot less sexy with all the PPE. #als #covid19 #resuscitation #LIVES2022
@ESICM
@ESICM Let's look at epidemiology. Northern Italy, Manhattan - COVID hit hard and has impact on other diseases.
e.g., OHCA in Italy during COVID 19 massive spike.
e.g., OHCA in Italy during COVID 19 massive spike.
NEXT Speaker : VA ecmo for which patients?
Alain COMBES
Severe cardiogenic shock has different phenotypes
1. medical cardiogenic shock(AMI, end stage dilated CM, myocarditis, septic shock)
2. Post cardiotomy refractory CS (post CABG)
#LIVES2022
@ESICM #ecmo #resuscitation #ALS
Alain COMBES
Severe cardiogenic shock has different phenotypes
1. medical cardiogenic shock(AMI, end stage dilated CM, myocarditis, septic shock)
2. Post cardiotomy refractory CS (post CABG)
#LIVES2022
@ESICM #ecmo #resuscitation #ALS
@ESICM 2022 what do the guidelines say
- ESC recommends short term MCS should be considred in cardiogenic shock.
IABP may be considered but not routinely recommended in post MI
#LIVES2022
- ESC recommends short term MCS should be considred in cardiogenic shock.
IABP may be considered but not routinely recommended in post MI
#LIVES2022
Updates on Advanced life supprot by Theresa OLASVEENGEN
Vasopressors and Drugs : recent trial outcomes.
#LIVES2022
@ESICM #als #resuscitation
Vasopressors and Drugs : recent trial outcomes.
#LIVES2022
@ESICM #als #resuscitation
@ESICM 2020 ILCOR consensus : strong recommendation to use "ADRENALINE" in cardiac arrest, if you dont have it "LIDOCAINE".
Adrenaline to placebo comparison is mainly 1 older trial with latest PARAMEDIC 2
pubmed.ncbi.nlm.nih.gov/30980877/
Adrenaline to placebo comparison is mainly 1 older trial with latest PARAMEDIC 2
pubmed.ncbi.nlm.nih.gov/30980877/
@ESICM PARAMEDIC 2 - big study
8007 pts, adrenaline 4000, placebo 3999
- a lot of discussion post trial
- need a nuanced interpretation.
- 19 "more good" survivors and 5 "more bad" survivors in adrenaline arm.
nejm.org/doi/full/10.10…
8007 pts, adrenaline 4000, placebo 3999
- a lot of discussion post trial
- need a nuanced interpretation.
- 19 "more good" survivors and 5 "more bad" survivors in adrenaline arm.
nejm.org/doi/full/10.10…
Today, we are pleased to share an important development in our efforts to deliver hope for those living with #ALS. We owe it to them to do everything in our power to provide access to promising therapies as quickly as possible because they don’t have time to wait. 🧵
The continued analysis and the feedback received from the many scientific presentations of the Phase 3 data uncovered key insights that furthered our understanding of NurOwn's mechanism of action and potential as a treatment for ALS.
After carefully considering these learnings, the totality of the evidence from NurOwn’s clinical studies, and the feedback received from key opinion leaders and the broader ALS community, we will submit a Biologics License Application to @US_FDA.
📌İnan Kıraç Kimdir?
1- #SedatPeker 'in "Karanlıkların lordu İnan Kıraç" diye başlayan flod ile gündeme getirdiği Kıraç'ın babasını, derin ilişkilerini, medyayı dizayn çalışmalarını, siyasetteki etkisini, iddianamelerdeki gölgesini ve kim olduğunu merak ediyorsanız okuyun.
1- #SedatPeker 'in "Karanlıkların lordu İnan Kıraç" diye başlayan flod ile gündeme getirdiği Kıraç'ın babasını, derin ilişkilerini, medyayı dizayn çalışmalarını, siyasetteki etkisini, iddianamelerdeki gölgesini ve kim olduğunu merak ediyorsanız okuyun.
2- 1897 yılında Bursa’da posta idaresinde memur Kafkas kökenli Süleyman Bey'in ve Zekiye Hanımın oğlu olarak dünyaya gelen Ali Numan önce Afyon İdadisi daha sonra Bursa Ziraat Mektebi’ni bitirdi.
3- 1921’de Amasya’ya tayin olan Ali Numan önce Darulharır Müdürü, ardından da Ziraat Mektebi muallimliği yaptı.
1/🧵🎥 Grateful for Technology
As #ALS (Lou Gehrig) patients progress to being unable to speak, they are aided by #EyeControl technology. My pt & his wife agreed to let you watch.
Imagine his bravery
I told him I didn’t understand his suffering but that I would not leave him.
As #ALS (Lou Gehrig) patients progress to being unable to speak, they are aided by #EyeControl technology. My pt & his wife agreed to let you watch.
Imagine his bravery
I told him I didn’t understand his suffering but that I would not leave him.
2/ For the video, I speak to her a lot just to deal w short time constraints of Twitter (2 min), but my conversations w him are direct, paced, and open.
I chose not to show the conversation about his life support decisions.
Gut-wrenching, honest, and true.
Send us strength.
I chose not to show the conversation about his life support decisions.
Gut-wrenching, honest, and true.
Send us strength.
3/fin
There is no greater privilege in my days than to enter the lives of my patients and their families. It is unearned.
My working definition of #Mercy is the willingness to dive into their chaos & offer lifting and healing.
This is my vocation.
What is yours?
There is no greater privilege in my days than to enter the lives of my patients and their families. It is unearned.
My working definition of #Mercy is the willingness to dive into their chaos & offer lifting and healing.
This is my vocation.
What is yours?
#CIIIEN2022 | Comienza la VII Sesión Científica - Flash Talks del Global Summit #NEURO2020/22, con @NBorjini, investigadora de @ibis_sevilla y @ciberned
✅ "Microglia in the presynaptic dysfunction and neurodegeneration in mice lacking the synaptic co-chaperone CSPα/DNAJC5"
✅ "Microglia in the presynaptic dysfunction and neurodegeneration in mice lacking the synaptic co-chaperone CSPα/DNAJC5"
#CIIIEN2022 | Presenta José Jiménez-Villegas, investigador de @IIBmCSICUAM y de @ciberned.
✅ "Redox, mitochondrial and NRF2 imbalance are present in C9orf72-related amyotrophic lateral sclerosis"
📡
@Fund_CIEN #FundaciónReinaSofía #NEURO2020/22
✅ "Redox, mitochondrial and NRF2 imbalance are present in C9orf72-related amyotrophic lateral sclerosis"
📡
@Fund_CIEN #FundaciónReinaSofía #NEURO2020/22
#CIIIEN2022 | Interviene Letizia Moreno-García, investigadora de @unizar y de @ciberned
✅ "Circular RNAs as blood-based biomarkers of #ALS"
📡
@Fund_CIEN #FundaciónReinaSofía #NEURO2020/22
✅ "Circular RNAs as blood-based biomarkers of #ALS"
📡
@Fund_CIEN #FundaciónReinaSofía #NEURO2020/22
This week we will discuss #Ventilation during #Resuscitation. As a starter, we’d like to hear from you.
In your practice, which of the following ventilation parameters do you routinely measure during resuscitation?
@ERC_resus #ResusciTuesdays #ResusTwitter #CPR #ALS
In your practice, which of the following ventilation parameters do you routinely measure during resuscitation?
@ERC_resus #ResusciTuesdays #ResusTwitter #CPR #ALS
Thanks a lot for all your answers.
Let’s reveal the right answer (and more) through this thread with this interesting information brought by @johannes_wittig
Let’s reveal the right answer (and more) through this thread with this interesting information brought by @johannes_wittig
Verdrängte Fakten im 'Omicron ist mild'-Narrativ : #Impflücke bei #Ü65.
Wenn jetzt sich Welle wie in den Hotspots (Bremen, Berlin, SH) zur #OmikronWand wird und auf
>1% der EW pro Tag mit Sars-CoV-2 angesteckt, wenn beim Peak 1 von 10 SARS-CoV-2 Infektion hat, wird sich
1x
Wenn jetzt sich Welle wie in den Hotspots (Bremen, Berlin, SH) zur #OmikronWand wird und auf
>1% der EW pro Tag mit Sars-CoV-2 angesteckt, wenn beim Peak 1 von 10 SARS-CoV-2 Infektion hat, wird sich
1x
#Impflücke Ü60 #schließen. Das sind zb in Berlin ~#100k Ü60, also wenn Durchschnittsalter dieser 100k ~70 ansetzt, wir eine #IFR für diese Gruppe etwas höher als #Wildtyp, wenn man also 30% Hospitalisierungsquote 3% tödlichen Verläufen ausgeht, einer #Attack #Rate der
2x
2x
Welle von ~2/3 der Bevölkerung, davon der #Hauptteil (#50Prozent*) der #Bevölkerung sich innerhalb der nächsten #2_Monaten* ansteckt, sind das 50kx0.3= 15.000 Hospitalisierungen
und 1500 Tote allein
3x
*Prognose #WHO Euro Region, Reg-Dir Hans Kluge ⤵unric.org/en/who-50-of-t…
und 1500 Tote allein
3x
*Prognose #WHO Euro Region, Reg-Dir Hans Kluge ⤵unric.org/en/who-50-of-t…
2/ Arguably the most devastating set of #ALS symptoms are the bulbar symptoms: slurred, then loss of, speech; difficulty swallowing, then loss of ability to swallow; involuntary muscle spasms affecting the jaw, face, voice box, tongue, and throat...
3/ I do NOT have hereditary #ALS, and, 3 years since diagnosis, I somehow, mercifully, have NO bulbar symptoms...
As a physician, I support the FDA's role in protecting patients from adverse events, ensuring safety & efficacy.
As a physician living with #ALS, I've recognized there must be different regulatory flexibility for untreatable lethal diseases.
1/
As a physician living with #ALS, I've recognized there must be different regulatory flexibility for untreatable lethal diseases.
1/
As a physician who was denied access to clinical trials for 8 yrs, I have been #DyingWaiting for some drug, any drug, with some efficacy to be approved.
I have been horrified by the FDA's regulatory rigidity & inhumanity toward the ALS community.
2/
I have been horrified by the FDA's regulatory rigidity & inhumanity toward the ALS community.
2/
After multiple meetings, a new #ALS Guidance Document in 2019, and a flawed subjective tool to evaluate efficacy as a trial endpoint, the FDA has refused to honor its promise to exercise regulatory flexibility in recognition of the "critical unmet need."
3/
3/
Ready for a quick and easy tutorial on how to develop a #strength training treatment plan for your patients - such as those for #EMST, #CTAR, #IOPI? 💪🙋♂️ Check out the below thread along with an accompanying example using #expiratory #muscle #strength training #EMST
First, measure the patient’s 1-repetition maximum (RM) by determining where they "max" out on a resistance-based exercise💪📈
Second, determine the desired strength training intensity level (i.e., low, moderate, high). For most of our elderly and/or rehab patients, we will use moderate intensity. For neuromuscular diseases (e.g., #ALS), current research suggests to consider a low intensity exercise.
Op het schiereiland Reykjanes wordt hard gewerkt aan de mid-oceanische rug. Dit soort aardbevingen gaan vaak gepaard met een magma-injectie in de korst, die ongeveer 10 km dik is onder dit deel van #IJsland (35 km onder Nederland. Soms leidt dat tot een spleetuitbarsting.
De aardbevingszwermen op het schiereiland Reykjanes, Z.W. #IJsland, blijven toenemen. Wie weet zit er wel een spleetuitbarsting in.
Mooi om te zien hoe de aardbevingen schommelen rond de as van van het Krýsuvík systeem. Er wordt daar flink wat magma geïnjecteerd.
Finally, a treatment that slows down ALS (amyotrophic lateral sclerosis), better known as Lou Gehrigs disease.
ALS is one of the most devastating diseases that can afflict us. It has been entirely without any hope. It progresses swiftly and death is difficult and painful.
ALS is one of the most devastating diseases that can afflict us. It has been entirely without any hope. It progresses swiftly and death is difficult and painful.
A very dear friend died of this. She told me of her disease a few days after diagnosis. She went into seclusion soon after and was gone before long leaving s huge hole in my life. At that time there was zero hope. Now there is the vague glimmer of hope. And it comes from the ."
