Pikagi
Post-Viral Trials News Profile
Post-Viral Trials News

@postviraltrials

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News and updates about treatment trials for Long Covid, ME/CFS, POTS, and other post-viral and related illnesses. DM if participating in a trial or interested.

Joined March 2023
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@postviraltrials
Post-Viral Trials News
@postviraltrials
1 year
I urge anybody with any post-viral illness contemplating suicide or euthanasia to hold off making a decision for at least a year or two, until the big trial results are out. It’d be a shame to suffer for three (or worse, 30 years) years, only to miss treatment by mere months
@jenbrea
Jennifer Brea🦒
@jenbrea
1 year
I wonder if we need a Be Here for the Cure-style campaign, to help people weather the news cycle and the vagaries of the illness. Or just the simple message that it gets better, because it can (even if your physical circumstances don’t change). #LongCovid
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Post-Viral Trials News
@postviraltrials
1 year
I have to break it up into two parts, but here’s the segment of German Chancellor Scholz answering a question from a Long Covid patient, with auto-translated auto-generated English captions. He says he personally knows a young man lying in a dark room all day…
@faei11
faei
@faei11
1 year
Minute 47:10 - @Bundeskanzler antwortet auf die Frage zu Long Covid im heutigen Bürgerdialog in Erfurt
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Post-Viral Trials News
@postviraltrials
1 year
Phase 2 trials ongoing, planned, or concluded worth staying alive for, and when I think results are due (interim if planned): - RSLV-132 (soon?) - Temelimab (Q4 2023) - Ampligen (Q1 2024) - Efgartigimod (Q2 2024) - Hope Bio stem cells (Q2 2024) - BC007 (Q4 2024) - AER002 mAb (?)
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Post-Viral Trials News
@postviraltrials
7 months
If you’re a non-Covid ME/CFS patient near NYC, @VirusesImmunity & @PutrinoLab are doing a study where they’ll give you FREE microclot and platelet activation imaging results! I apparently have both. Email PRcovid @MountSinai .org. They’ll come to your home (within 50 miles of NYC)
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Post-Viral Trials News
@postviraltrials
1 year
The German ME/CFS activists are running circles around the rest of us. The bed protest at the Bundestag, a banner in a packed stadium, the federal health minister showing up again and again to events – such an inspiration
@AaronCa11
A 😎 Long Covid + MECFS Billboards
@AaronCa11
1 year
This is the Twitter account - Sebastian - who the MECFS banner was advocating for! ‘MECFS can affect everyone! Don’t let Sebastian and the other 300,00 down!’
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Post-Viral Trials News
@postviraltrials
9 months
The CDC has released, for the first time, an estimate of how many American adults have ME/CFS, based on the National Health Interview Survey conducted between in 2021-2022: 1.3%
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Post-Viral Trials News
@postviraltrials
1 year
RECOVER spending has been made public, and it’s bad – of the “almost fully allocated” $1.15 billion the NIH got, almost half went to that pointless observational study that didn’t even so much as run tilt table tests on patients. Only 15% for trials
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Post-Viral Trials News
@postviraltrials
2 months
@elle_carnitine I would reply that “As you point out, this is really not trivial, and I wouldn’t be here if it were correctable with something as trivial as physiotherapy. Unfortunately, due to the trivialization of my illness for years, there is no treatment.”
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Post-Viral Trials News
@postviraltrials
1 year
Peluso, Deeks, Henrich & Hsue at UCSF (HIV background) just registered a monoclonal antibody trial for Long Covid (not yet recruiting). Based on previous statements/association with @polybioRF , seems like they are very interested in viral persistence
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Post-Viral Trials News
@postviraltrials
1 year
…(unclear if he’s a pre- or post-Covid patient, but clearly somebody with severe ME/CFS), then talks about removing bureaucratic barriers to and speeding research and drug approval. Sounds to me like foreshadowing accelerated access to BC007, etc. if phase 2 results are good
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Post-Viral Trials News
@postviraltrials
1 year
Tevogen CSO Neal Flomenberg says “we are exploring the potential of TVGN 489 for the treatment and prevention of Long COVID”
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Tevogen Bio will Present Positive Proof-of-Concept Trial Findings at the 5th Annual Allogeneic Cell...

Tevogen Bio is pleased to announce that it will present the proof-of-concept clinical trial results of TVGN 489, the company's first clinical product

www.businesswire.com
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Post-Viral Trials News
@postviraltrials
30 days
Unpublished finding from David Systrom, in January podcast: he and Peter Novak found even more evidence of small fiber neuropathy in ME/CFS and LC patients with a skin biopsy down to the sweat glands, deeper than the usual epidermal one (via @bhanlon15 )
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Post-Viral Trials News
@postviraltrials
11 months
He keeps repeating how new it is, how we didn’t know “anything” about it, but over three years ago he himself said “you can see people who…have things that are highly suggestive of myalgic encephalomyelitis and chronic fatigue syndrome”
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Dr. Anthony Fauci says that post-covid syndrome “is highly suggestive of” myalgic encephalomyelitis

During an International AIDS Society Covid-19 press conference held July 9th, Dr. Anthony Fauci (Director of the National Institute of Allergy and Infectious Diseases and member of the White House...

www.meaction.net
@mehdirhasan
Mehdi Hasan
@mehdirhasan
11 months
“Clinical trials likely should have been done sooner.” On today's @MehdiHasanShow , I pressed Dr. Anthony Fauci on the slowness of our government to address what he calls the “serious problem” of Long COVID - and on Biden never mentioning it.
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Post-Viral Trials News
@postviraltrials
2 months
The largest 2-day CPET study ever comparing ME/CFS patients and sedentary controls has just been published. Congratulations to @DrMaureenHanson and others
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Cardiopulmonary and metabolic responses during a 2-day CPET in myalgic encephalomyelitis/chronic...

Background Post-exertional malaise (PEM), the hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), represents a constellation of abnormal responses to physical, cognitive,...

translational-medicine.biomedcentral.com
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Post-Viral Trials News
@postviraltrials
1 month
. @VirusesImmunity says she hopes to conduct RCTs of therapies targeting autoimmunity in Long Covid based on her passive IgG transfer mouse model findings, and lists IVIg, anti-FcRns, B cell depletion therapy, and plasmapheresis as possible options
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New Evidence Supports Autoimmunity as One of Long COVID’s Underlying Drivers

Mice that received antibodies from Long COVID patients showed symptoms including pain and dizziness, a Yale-led study has found.

medicine.yale.edu
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Post-Viral Trials News
@postviraltrials
8 months
Upsetting that the NIH got $1.15bn from Congress and their team of professional medical researchers, without any cognitive dysfunction, has not been able to find the same quality of grantees as LC patients themselves have with a tiny fraction of the financial/cognitive resources
@ahandvanish
Hannah Davis
@ahandvanish
8 months
This tremendously exciting paper is now published: Exercise in #LongCovid induces severe tissue damage & skeletal muscle necrosis, metabolic disturbances, myopathy, & tissue infiltration of amyloid-containing deposits. Patient-Led Research Collaborative helped fund this study!
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Post-Viral Trials News
@postviraltrials
2 months
The three remaining major Long Covid trial results this year are temelimab (this month), BC007 (October), and AER-002 (not sure when). There is still hope for something positive this year from trials!
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Post-Viral Trials News
@postviraltrials
11 months
Great article by ME/CFS patient and journalist Brian Vastag on the backstory that led to the discovery that overexpression of WASF3 might be at the root of her fatigue, and maybe that of others with ME/CFS (including maybe those triggered by Covid…?)
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She wrote to a scientist about her fatigue. It inspired a breakthrough.

Her dogged efforts lead to a new scientific discovery that may help many others with chronically fatiguing illnesses, including long covid.

www.washingtonpost.com
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Post-Viral Trials News
@postviraltrials
7 months
Ampligen phase 2 study results are out. The company saw hints of success, but the primary endpoint was not met. These do not look like results that will lead to any sort of expedited approval
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Post-Viral Trials News
@postviraltrials
3 months
The first of the four Paxlovid trials for Long Covid, at Stanford, has published results: the 15-day course did not improve a composite score of fatigue, brain fog, shortness of breath, body aches, gastrointestinal symptoms, and cardiovascular symptoms
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Nirmatrelvir-Ritonavir and Symptoms of Postacute Sequelae of SARS-CoV-2 Infection

This randomized clinical trial evaluates the efficacy of oral nirmatrelvir-ritonavir for treatment of moderate to severe postacute sequelae of SARS-CoV-2 infection of 3 months or longer duration.

jamanetwork.com
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Post-Viral Trials News
@postviraltrials
4 months
I’ve tried so hard with this account to keep it very level-headed with researchers, but I can’t hold my tongue about what happened with RECOVER. Nobody at the NIH, Duke, NYU, or RTI leading this $1.15bn effort is qualified, and this “collegiality” may cost me a lot of my life
@GYamey
Prof Gavin Yamey @gavinyamey.bsky.social
@GYamey
4 months
@postviraltrials @DukeU @duke It’s really unfortunate to see you call my Duke colleagues “cruel”—including my colleagues at the IRB that approved these trials and my colleagues at NIH that funded these trials. I had hoped that this might be a good faith discussion of science & data. Muting this convo now.
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Post-Viral Trials News
@postviraltrials
6 months
Spoke with researchers yesterday (tons of experience with NIH and other grants) who said they’re looking for non-NIH options for LC/ME trial funding because NIH just takes too long (this one in @DrJeanneM ’s world). Largest source of medical research funding has lost credibility
@JanetDafoe
Janet Dafoe
@JanetDafoe
6 months
@coco_chatel @SawyerBlatz @MichaelPelusoMD @PutrinoLab @zalaly Add Ron Davis to the list of critics. For one thing he’s been ready to go with a clinical trial of Abilify and can’t get it funded. There are many clinical trials that are ready to go but don’t have funding. That response is so disingenuous
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Post-Viral Trials News
@postviraltrials
2 months
On such a disappointing day, it is heartening to know that a generation of students are now being raised to take these diseases seriously. I’m sorry to all of us that it didn’t happen sooner, but it is happening now
@RobWust
Rob Wüst
@RobWust
2 months
Our BSc students are presenting their results about #PEM in #longcovid and #mecfs . Lots of work, and giving us another 🧩 pieces to understanding PEM. We now check their data, and will add more results before writing this up for a follow-up publication. Great work guys! @VU_FGB
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Post-Viral Trials News
@postviraltrials
4 months
Nancy Klimas was on a podcast talking about mAbs and Long Covid. She says Dr. Pepe (from this case series: ) says he’s now he’s got 18 LC patients who’ve responded to mAbs against SARS-CoV-2
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Remission of severe forms of long COVID following monoclonal antibody (MCA) infusions: A report of...

These index cases provide compelling clinical signals that MCA infusions may be capable of treating long COVID in certain cases, including those with severe debilitation. While the complete and...

pubmed.ncbi.nlm.nih.gov
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Post-Viral Trials News
@postviraltrials
9 months
Just received this email from Berlin Cures, regarding the BC007 trial for Long Covid taking place in Germany, Austria, Spain, and soon Switzerland and Finland. They say the one-year infection limit is “under review,” and has already been lifted in Germany
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Post-Viral Trials News
@postviraltrials
1 year
“Berlin Cures…has officially started its Phase II clinical trial in the indication Long COVID. The first patients were admitted in the study at Münster University Hospital and Havelhöhe Hospital, with several other trial sites expected to follow.”
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Post-Viral Trials News
@postviraltrials
5 months
The $1 billion/year Long Covid funding bill that @SenSanders introduced requires the NIH to set up a new grant process for clinical trials, “reviewed more quickly than traditional grants,” with priority for non-behavioral interventions
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Post-Viral Trials News
@postviraltrials
2 months
. @C_Scheibenbogen says she’ll launch a 15-patient (LC & non-LC ME) open label trial of inebilizumab. It binds to and depletes CD19+ B cells, which she thinks make the autoantibodies behind ME/CFS & LC. No study funding from Amgen, which sells it as Uplizna
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Long Covid: „Wir müssen uns nun die Frage stellen, ob Blutspenden sic…

archived 4 Jul 2024 14:58:25 UTC

archive.ph
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Post-Viral Trials News
@postviraltrials
1 year
Partial list of trials for Long Covid by @Daltmann10 in Nature (missing some very important ones though – BC007, efgartigimod by Argenx, vericiguat by @C_Scheibenbogen , baricitinib by @WesElyMD , Paxlovid at Karolinska Institutet)
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Post-Viral Trials News
@postviraltrials
6 months
As I stew about the NIH, I’m looking through studies @patientled (partly) funded with just $4,800,000. Amazing how many not only were compelling ideas, but have ALREADY delivered results that moved the field forward not 1.5 years post-application deadline
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Post-Viral Trials News
@postviraltrials
8 months
Survey responses of 15 adolescents prescribed Ig (SCIg or IVIg) for POTS or small fiber neuropathy: all but one reported increased quality of health, 60% reported improved exercise tolerance, 47% reported decreased fatigue (not blinded)
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Post-Viral Trials News
@postviraltrials
9 months
New Charité study: skeletal muscle biopsies from LC patients w/PEM show “fewer capillaries, thicker capillary basement membranes & increased numbers of CD169+ macrophages” than healthy controls, SARS-CoV-2 RNA undetected in muscle tissue. They hypothesize immune-mediated damage
@C_Scheibenbogen
Carmen Scheibenbogen
@C_Scheibenbogen
9 months
Charité Studie: Hinweis für immun-vermittelte Schädigung der kleinen Gefäße der Muskeln bei #PostCovid Betroffenen mit Belastungsintoleranz:
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Post-Viral Trials News
@postviraltrials
1 year
Dr. Scheibenbogen’s group at the Charité in Berlin has published interim results of a small open label study of repeat immunoadsorption (depletes immunoglobulin levels through apheresis). Of 10 post-Covid ME/CFS patients with elevated ß2-adrenergic AAbs, 7 responded to treatment
@C_Scheibenbogen
Carmen Scheibenbogen
@C_Scheibenbogen
1 year
Die Entfernung von Autoantikörpern mit Immunadsoprtion kann auch bei #MECFS nach COVID #PCS zu rascher Besserung führen. Erste Ergebnisse unserer #NKSG Studie als preprint, gefördert durch #BMBF
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Post-Viral Trials News
@postviraltrials
1 year
If anybody who lives near the DC area is interested in the NIH’s IVIg trial for long COVID (fatigue, brain fog, orthostatic intolerance symptoms explicitly mentioned, among others), email angelique.gavin @nih .gov about recruitment. Trial details here:
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Post-Viral Trials News
@postviraltrials
3 months
She sits on the advisory board for Berlin Cures’ BC007 phase 2 trial, and says results are planned to be released in October of this year!
@U2Fight_World
UniteToFight2024
@U2Fight_World
3 months
📢 New Keynote online! Prof. Dr. Carmen Scheibenbogen ( @C_Scheibenbogen ) presents on "ME/CFS as part of the post-COVID spectrum" at #UniteToFight2024 . Discover the latest research on the overlap between #MECFS and #LongCovid . 📽️ Watch here:
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Post-Viral Trials News
@postviraltrials
4 months
Argenx had its Q1 investor call yesterday and said they’re on track to release results for efgartigimod for post-Covid POTS before the end of June
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Post-Viral Trials News
@postviraltrials
4 months
I’m going to summarize the interview with Dr. Adrian Hernandez, at Duke, who is coordinating RECOVER’s trials. Dr. Hernandez’s comments are disappointing, and I think shed light on what went wrong with RECOVER
@GYamey
Prof Gavin Yamey @gavinyamey.bsky.social
@GYamey
4 months
📣 Our podcast on Long Covid is now online It begins with 30 mins of short interviews with Dr Fauci, Dr Iwasaki, patient advocate Fiona Lowenstein & others Then we did a 30 min interview with the inspirational Dr Adrian Hernandez @DukeU Hope you enjoy
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Post-Viral Trials News
@postviraltrials
1 year
Two sites now recruiting for the Long Covid Ampligen trial, both in Southern California, according to the clinical trials dot gov page updated today. Inclusion criteria elsewhere on this page
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9 months
Interesting that they mention chronic fatigue syndrome even before MS and cancers in their list of sequelae. In Moderna’s investor material for its EBV vaccine in development, ME/CFS was never mentioned…times are changing
@TomKindlon
Tom Kindlon
@TomKindlon
9 months
Press release: EBViously Presents Novel In-Vitro Data Demonstrating Potent Infection Prevention of its Vaccine Candidate EBV-001 “EBV-001 is designed for the prevention of EBV-induced diseases via high titers of potent, neutralizing antibodies”
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Post-Viral Trials News
@postviraltrials
1 year
Peluso says to @polybioRF that his UCSF team is planning “a number of” small Long Covid trials of “immune system therapies or more complicated therapies” with lots of measurement in the next few months, more to understand the biology than to treat
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Interview with Dr. Michael Peluso: Clinical & research infrastructure innovation for LongCovid/PASC

Episode · The PolyBio Podcast · Michael Peluso is an infectious disease clinical-translational physician-scientist at University of California San Francisco School of Medicine. He is involved in both...

open.spotify.com
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Post-Viral Trials News
@postviraltrials
2 months
Due to work/family issues, I’m not going to be able to follow trials news on my own very closely for the foreseeable future. I will check my notifications though, so if you see anything, please (continue to) tag/DM me! Really appreciate everybody who’s been doing that already
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@postviraltrials
12 days
CSL Behring’s trial of Hizentra (subcutaneous immunoglobulin, like IVIg) for post-Covid POTS has been registered. It’s a phase 3 (final one), 177 patients enrolled, primary outcome measure is whether somebody still meets the POTS criteria after 25 weeks
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Post-Viral Trials News
@postviraltrials
4 months
Normally don’t focus on things so far off from a phase 2 trial, but this company’s cofounder is Klaus Wirth, who’s been active in this field for a while: Both cofounders left Sanofi to start this firm, so they’ve got a lot of experience in pharma.
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ME/CFS Muscle Study Results in Drug Company Startup - Health Rising

High sodium muscle findings in chronic fatigue syndrome (ME/CFS) have resulted in a startup company being formed to bring a drug to market.

www.healthrising.org
@mitodicure
Mitodicure
@mitodicure
4 months
#mitodicure launched its website: We are the only #MECFS start-up company worldwide developing a novel targeted drug. Support innovative drug development aimed at healing ME/CFS, which is also the most severe form of #LongCovid . #BMBF #MECFSAwarenessDay
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Post-Viral Trials News
@postviraltrials
6 months
I think patients should channel out anger at this study towards a unified and consistent demand for the NIH to begin a study on the therapeutic option mentioned: immune checkpoint inhibitors. And demand that the NIH start it QUICKLY, without the delays of RECOVER
@ValeBodi
PwME 4 bioMEdical research
@ValeBodi
6 months
Prof. ⁦ @DrMaureenHanson on the recent NIH intramural clinical study: “It's really imperative to start doing clinical trials for people who have been sick for decades.” #MEcfs #PwME
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@postviraltrials
8 months
This is absolutely devastating. Beth was the only person with an ME/CFS diagnosis who I’ve ever met in person. Please call your reps (and if you knew her and where she lived, hers) and ask for funding for research in her memory.
@MEActNet
#MEAction Network
@MEActNet
8 months
It is with deep sadness that we share with you that we lost one of our heroes and champions of ME yesterday. Beth Mazur passed away after battling ME for 15 years. She was a selfless beacon of hope & light in our community. She demonstrated an unwavering commitment to the cause.
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1 year
Hello new followers! If you’re in the US, have post-Covid POTS and a PCR, and had no related conditions pre-Covid, you may be able to participate in the efgartigimod trial! Here are the sites – in some cases they’ll send a nurse to your home for infusions!
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@postviraltrials
3 months
A much more emphatic statement than I’ve ever seen from the NIH. Do they actually have the competence though, is the question…
@loscharlos
charlos
@loscharlos
3 months
“[ #LongCovid ] is a full NIH activity.. We must find better ways to.. restore the lives of these people” “We are not where we want to be right now in terms of rapid, nimble clinical trials.. testing promising treatments.. that is our focus right now moving forward” — @NIHDirector
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@postviraltrials
2 months
And a third disappointing result for the month. BC007 and AER-002 should be out by the end of the year, hopefully better luck with one of those.
@GeneuroO
GeNeuro
@GeneuroO
2 months
Today we announced that the clinical trial against #postCOVID did not meet its primary endpoint. While these results are disappointing, GeNeuro will continue to analyze the data thoroughly to understand the results and explore potential insights.
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@postviraltrials
1 year
FDA. If they put out a public statement saying they consider Long Covid to be an urgent matter and are open to issuing emergency use authorization for well-done phase 2 trials, I think we’d see more (and bigger) trials happening right now
@loscharlos
charlos
@loscharlos
1 year
Even though I’m a poli sci major & I’ve seen every episode of the West Wing — I found this to be very helpful lol Besides HHS, Congress & WH — What other offices or departments have the power to expedite, fund or play a role in #LongCovid research ?
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7 months
I think in his eagerness to dunk on Putrino and other clinicians and patients who believe post-viral ME/CFS is not just an elaborate form of hypochondria, Dr. Gaffney did not notice the entire study population was hospitalized, many in the ICU, and none showed signs of PEM/PESE
@awgaffney
Adam W Gaffney
@awgaffney
7 months
Notable development on the Long Covid front: consistent with previous studies, a randomized trial in ⁦ @bmj_latest ⁩ found that an exercise-based physical & mental health rehabilitation program improved outcomes for those with Long COVID.
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Post-Viral Trials News
@postviraltrials
2 months
Second Long Covid IgG/mouse model preprint has been published. I hope these are peer-reviewed and published quickly, and encourage other pharma/biotech firms to pursue trials of IgG degraders – and maybe @argenxglobal even to try again – despite the failure of the Vyvgart trial
@Osaca_ME
Osaca
@Osaca_ME
2 months
"A causal link between autoantibodies and neurological symptoms in long COVID" by @VirusesImmunity , @PutrinoLab et al has been put on the Arxiv @DrDenDunnen @PatientPersists @bhanlon15 @ahandvanish
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Post-Viral Trials News
@postviraltrials
8 months
Seven years from announcement to results. We cannot afford any more of these useless behavioral/psych intervention studies. No more money for Esther Crawley (), she’s had enough
@davidtuller1
davidtuller
@davidtuller1
8 months
In 2016, Professor Esther Crawley of Bristol University announced with great fanfare the launch of FITNET-NHS, a trial of online CBT for adolescents with ME/CFS. The first reported outcome results--on cost-effectiveness--are disastrous. Oops!
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Post-Viral Trials News
@postviraltrials
5 months
The Bavarian government says that a trial of BC007 for non-Covid-onset ME/CFS is still planned by the University of Erlangen, and is negotiating with Berlin Cures about providing the drug
@MECfsFundraiser
#fundraisingBC007MEcfs
@MECfsFundraiser
5 months
Wir haben eine Antwort vom Bayrischen Staatsministerium für Wissenschaft und Kunst erhalten, was eigentlich aus der Studie #bc007 für #MEcfs (prä-pandemisch) werden soll. (Wir hatten auch dorthin geschrieben und nachgefragt) #fundraisingbc00MEcfs 🧵
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Post-Viral Trials News
@postviraltrials
11 months
The director of the National Heart, Lung, and Blood Institute is Gary Gibbons, and he likely has the power to fully fund Dr. Hwang’s team and trial. His office’s email is NHLBIinfo @nhlbi .nih.gov, note that it’s for Dr. Gibbons when you reach out
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@dysclinic
S Blitshteyn MD, FAAN, Dysautonomia Clinic
@dysclinic
11 months
Excellent piece on #MECFS ! It'll take a number of physicians and scientists like Dr. Hwang WITH FUNDING to solve #MECFS , #Dysautonomia and #LongCovid .
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@postviraltrials
1 year
This is the problem with taking years to launch studies of already approved drugs that patients have already been experimenting with extensively – if patients aren’t already raving about it by then, it’s probably because it doesn’t work!
@dsethlewis
Daniel Lewis (but with Long COVID)
@dsethlewis
1 year
Stanford Paxlovid clinical trial was stopped early because it wasn't effective in treating #longCOVID
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Post-Viral Trials News
@postviraltrials
6 months
The NIH got 240 times as much money from Congress to study Long Covid (not including extra they’re taking from the general budget), and they haven’t delivered anything even half as compelling as just the @RobWust study alone. It makes me quite literally sick.
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Post-Viral Trials News
@postviraltrials
6 months
“PolyBio’s second phase of projects also includes funding for clinical trials to evaluate the impact of HIV antivirals on LongCOVID.” Will be directed by @PutrinoLab .
@polybioRF
PolyBio
@polybioRF
6 months
We are excited to announce a 2nd series of collaborative projects & clinical trials supported via our LongCovid Research Consortium:
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Post-Viral Trials News
@postviraltrials
1 year
Listening to the AIM (Ampligen drugmaker) investor call. They expect to be open and treating patients in their post-COVID phase 2 in mid- to late June. Enrollment should take 2-3 mos., last patient enrolled in Q4 2023. Here are some preliminary results from four patients:
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Post-Viral Trials News
@postviraltrials
2 months
On June 11, Argenx confirmed that preliminary phase 2 results for Vyvgart for post-Covid POTS will be out by the end of this month, mainly whether or not they will move forward with a phase 3
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Post-Viral Trials News
@postviraltrials
1 year
Case series from last year of six Long Covid patients treated with IVIg, all improved. Not a trial, but I do appreciate that they mentioned how many total patients were treated, and didn’t leave the reader to wonder about unreported non-responders
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Long-term high-dose immunoglobulin successfully treats Long COVID patients with pulmonary, neurol...

Long COVID is the overarching name for a wide variety of disorders that may follow the diagnosis of acute SARS-COVID-19 infection and persist for weeks to many months. Nearly every organ system may...

www.ncbi.nlm.nih.gov
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@postviraltrials
Post-Viral Trials News
@postviraltrials
10 months
A very similar study looking to measure the same in patients with non-COVID ME/CFS is still recruiting! Requires one visit to Boston, see next tweet for details…
@EricTopol
Eric Topol
@EricTopol
10 months
The diffuse inflammation of the brain in symptomatic people with #LongCovid by PET scans, with matched controls, and correlation with their blood inflammatory biomarkers @MBVanElzakker @MGHMartinos @HannahFBues
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@postviraltrials
7 months
Hundreds of millions in RECOVER $$ went to studies like this – thousands of patients enrolled, and for what? To learn Long Covid involves PEM, fatigue & dizziness (so it’s ME & POTS), and anxiety, depression & poverty are LC risk factors. How does that help patients?
@DrJeanneM
Jeanne Marrazzo
@DrJeanneM
7 months
LB01 Development of post-acute sequelae of SARS-CoV-2 (PASC) after infection in pregnancy: NIH RECOVER-Pregnancy Cohort - American Journal of Obstetrics & Gynecology
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@postviraltrials
6 months
RECOVER-AUTONOMIC has launched, testing IVIg and ivabradine, in combination with some sort of “coordinated care” that I won’t get too deeply into. These should be the best of the RECOVER trials, and I’d personally enroll if I were eligible
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Post-Viral Trials News
@postviraltrials
9 months
. @PutrinoLab says they’re finishing up with the last patients in the Mt. Sinai vagus nerve stimulation trial, and results should read out at the end of Q1 2024
@dsethlewis
Daniel Lewis (but with Long COVID)
@dsethlewis
9 months
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Post-Viral Trials News
@postviraltrials
1 year
I’m told that this study near Salt Lake City using Regeneron’s monoclonal antibodies to try to treat Long Covid (using only patients in the fifth month after infection?) has been completed, and results are coming
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Post-Viral Trials News
@postviraltrials
2 months
Great article by @jcouzin on the recent IgG mouse model Long Covid studies. At the end, @DrDenDunnen says he’s considering a trial of an IgG removal therapy, using passive IgG transfer to mice for patient selection
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@postviraltrials
7 months
Looks like we’re still on for June. Middle of this year should be big for Long Covid drug trials – we should have efgartigimod, temelimab, and I hope @hopebio_org ’s stem cell results by then
@GeneuroO
GeNeuro
@GeneuroO
7 months
@r_prior We have finalized the enrollment in Europe of a biomarker-based, placebo-controlled, 200-patient phase 2 to neutralize W-ENV, a pathogenic protein that is found in more than a third of patients affected. Top-line results will be available in June 2024 !
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@postviraltrials
4 months
Slides on possible future trials from today’s NIH ME symposium, Avi Nath on future directions. I wish the ME advocacy community would push the NIH to fund these rather than dwell on “effort preference” and the like. Avi is offering us a way forward, but activists need to seize it
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@postviraltrials
7 months
Is anybody aware of any present, past, or future randomized control trial of metformin to *treat* (not prevent) Long Covid, or ME/CFS, and could link me?
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Post-Viral Trials News
@postviraltrials
4 months
From a @PlzSolveCFS presentation, @PutrinoLab discusses an unpublished finding from @keylas3 and @VirusesImmunity : mice some exhibit balance and sensory issues (sounds like POTS and SFN?) after being injected with IgG from human Long Covid patients
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Comparing immunological signatures between Long Covid and ME/CFS

Dr. David Putrino and Dr. Jamie Wood, of the Icahn School of Medicine at Mount Sinai, have conducted several landmark studies on Long Covid. Their extensive ...

www.youtube.com
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Post-Viral Trials News
@postviraltrials
3 months
Funny things about hanging around an infusion center is that whenever I overhear what drugs the cancer patients are getting, I think, “Hm, I wouldn’t mind trying that.” Daratumumab, rituximab, Keytruda – all of these have been proposed for ME/CFS or Long Covid! Give ME some!!
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Post-Viral Trials News
@postviraltrials
2 months
I haven’t paid much attention to subjective disease scoring systems for trials, and I think that was a mistake. With the failure of the Vyvgart trial I’m looking more in to these scoring systems, and I think choosing the right ones needs to be a way bigger focus going forward
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Post-Viral Trials News
@postviraltrials
4 months
@VirusesImmunity @hmkyale At 48:24 (last LC question), he mentions “chronic fatigue syndrome” as an example of condition that wasn’t taken seriously until the pandemic and still “hasn’t trickled down through healthcare.” Ironic given he hasn’t taken ME, POTS, etc. seriously at all designing RECOVER trials
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Post-Viral Trials News
@postviraltrials
9 months
🚨 AIM ImmunoTech has dosed its last patient in the Ampligen phase 2 RCT for Long Covid! “The Company remains on track to report topline data as early as Q1 2024.” Primary endpoint is PROMIS Fatigue Score.
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AIM ImmunoTech Completes Treatment of Last Subject in Phase 2 Study Evaluating Ampligen® for the...

AIM ImmunoTech Inc. today announced the last subject has completed treatment in the Company’s Phase 2 study evaluating Ampligen® as a potential therapeutic for people with the Post-COVID condition of...

www.biospace.com
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Post-Viral Trials News
@postviraltrials
10 months
OMF announce its first ME/CFS RCT: pyridostigmine (Mestinon) & LDN, separately and in combo. Systrom and Bergquist will recruit from their Boston patients and StudyME, “will integrate molecular assays & evaluate changes in functional capacity” (iCPET?)
OMF's First Clinical Trial - Open Medicine Foundation

Learn about OMF's First Clinical Trial on LDN and Mestinon and have your donation tripled until November 28, 2023!

www.omf.ngo
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Post-Viral Trials News
@postviraltrials
1 year
At the Charité’s conference, Wolfgang Ries says he’s treated 31 moderate to very severe patients (post-COVID, post-other virus & post-vax!) with 5-7 sessions of immunoadsorption. 22 had some improvement (some took a while), no change in 6, 5 are ongoing
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Post-Viral Trials News
@postviraltrials
5 months
David is underselling the benefits of participating – they give you microclot and platelet imaging and impressions! Here are mine:
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@PutrinoLab
Putrino Lab
@PutrinoLab
5 months
A reminder that if you live within 50 miles of NYC and you have a PRE-2020 #MECFS diagnosis, then @VirusesImmunity and I NEED your help! If you have difficulty traveling we will come to you. Please help us to hit our recruitment goals if you can! 🙏🙏
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Post-Viral Trials News
@postviraltrials
1 year
Great presentation by @hopebiosciences with @PlzSolveCFS on their stem cell pilot study (no placebo control) in Long COVID. Five infusions of autologous cells (from their own fat tissue). Really good subjective results!
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Post-Viral Trials News
@postviraltrials
3 months
Beyond whole blood donations – what about plasma “donations” (which actually paid and would therefore be more likely to attract sick people, who perhaps cannot earn an income in other ways)? That’s where Ig product that goes into IVIg comes from. And now maybe it’s tainted? Yikes
@SaraAna66550269
Sara
@SaraAna66550269
3 months
@EricTopol Why is the US still allowing patients with #LongCovid to donate blood? The UK doesn’t allow it. Not that we have the energy to donate anyways, but if it can happen to mice, I would feel terrible knowing that I gave another person my LC symptoms !
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Post-Viral Trials News
@postviraltrials
7 months
Japan’s National Center of Neurology and Psychiatry has IRB approval for a rituximab trial for ME/CFS, according to machine translation of this page (via @MECFSNews )
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Post-Viral Trials News
@postviraltrials
5 months
The NIH’s placebo-controlled trial of IVIg for Long Covid is still recruiting (contrary to the study page), you do NOT need to be invited. It’s three months of infusions in Bethesda, MD. Email study coordinator Ladi Fouanta at ladifatou.fouanta @nih .gov
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Post-Viral Trials News
@postviraltrials
6 months
Bad news. After dogging the RECOVER press team, I found out that NIH’s RECOVER is double-counting the Paxlovid trial in their “13 interventions” claim, since they’re doing two dosing arms – one for 15 days, another for 15 days. So we’re down an “intervention” unfortunately
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Post-Viral Trials News
@postviraltrials
7 months
What are these 13 treatment trials mentioned? Does anybody know?
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@postviraltrials
11 months
BC007 turning away a lot of patients because of strict criteria (sick 3-12 mos., PCR, tough AAbs test), recruiting in Germany and Austria but not yet Switzerland, Poland, Spain, Finland. Ampligen is fully recruited, last dose should be in November, results…soon after, hopefully
@Silas33
Stephen MIA
@Silas33
11 months
Does anyone know what the latest is with the BC 007 and the Ampligen trials is?
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Post-Viral Trials News
@postviraltrials
9 months
Temelimab LC phase 2 RCT updates: - Interim analysis performed, study not halted (no safety issues, apparently passed futility analysis) - 203 patients recruited - 36% patients HERV-W+ - Topline results June 2023 - If successful, marketed as early as 2025
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Post-Viral Trials News
@postviraltrials
11 months
First patient dosed last month. Still recruiting in San Francisco (30 patients total, 2:1 blinding), email outsmartLC @ucsf .edu. Major criterion is that your Long Covid must have started before Aug. 15, 2022. I don’t see a PCR test requirement. More here:
@MichaelPelusoMD
Michael Peluso, MD
@MichaelPelusoMD
11 months
Our first @UCSF #LongCOVID clinical trial targeting viral persistence with monoclonal antibodies featured by @NanetteAsimov in the @sfchronicle today. I am grateful to @AeriumTx @patientled @polybioRF for supporting this effort.
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Post-Viral Trials News
@postviraltrials
1 year
This Ampligen trial is moving FAST compared to the other trials. Hopefully that’s a good thing and they aren’t being sloppy with patient qualification and other things…
@Ramyisback
Ramy2.0
@Ramyisback
1 year
I hope it is ampligen lol
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Post-Viral Trials News
@postviraltrials
9 months
Baricitinib trial for Long Covid is getting much larger
@WesElyMD
WesElyMD
@WesElyMD
9 months
@PatientPersists We’re converting this into a phase 3 trial which will enroll 550 patients. Awaiting final funding notice from NIH. More to come.
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Post-Viral Trials News
@postviraltrials
1 year
There is now an approved subcutaneous formulation of efgartigimod. So if the post-Covid POTS trials lead to approval for that indication, there should be an at-home infusion option
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FDA Approves Subcutaneous Efgartigimod as Treatment for Generalized Myasthenia Gravis

The basis for the FDA’s decision came from the phase 3 ADAPT-SC study, in which subcutaneous efgartigimod showed a slightly better ability to reduce immunoglobulin compared with its previously...

www.neurologylive.com
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Post-Viral Trials News
@postviraltrials
4 months
@VirusesImmunity @hmkyale “Suggest” vs. “note, well, actually” suggests to me that he doubts that PEM doesn’t improve with exercise. Beyond that, he seems to misunderstand that pacing is the practical application of the idea that PEM is not surmountable with gradual exercise, not an alternative hypothesis
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Post-Viral Trials News
@postviraltrials
6 months
Gotta hand it to the Moonshot Kills crazies: great press for @LCMoonshot !
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Post-Viral Trials News
@postviraltrials
1 year
🚨 AIM ImmunoTech’s Phase 2 trial of Ampligen for Long Covid is fully enrolled! 80 patients enrolled in a 12-week trial, so the last patient is expected to be dosed in December 2023, with top line results “expected as early as Q1 2024.”
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Post-Viral Trials News
@postviraltrials
1 year
@sebdave23 No Long Covid suicides allowed until at least 2025, too many trials ongoing right now. Sorry for the inconvenience but I don’t make the rules 🤷
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Post-Viral Trials News
@postviraltrials
1 year
First Long Covid patients at Floridsdorf in Austria expected to be dosed with BC007 in beginning of September, says @lungendoc . Preliminary results expected mid-2024, final results end 2024. Expects a phase III, but accelerated approval à la Paxlovid also possible, maybe by 2025?
@neurostingl
Michael Stingl
@neurostingl
1 year
Details zur #BC007 -Studie für #LongCovid , die jetzt an Kliniken Floridsdorf und Favoriten von @wiengesundheit auch in 🇦🇹 begonnen hat. Gut, dass endlich Bewegung in die Sache kommt und potentielle Therapien geprüft werden.
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Post-Viral Trials News
@postviraltrials
1 year
Berlin Cures appears to have added a Swiss trial site for BC007 phase 2 for Long Covid, in Zurich, at the city hospital. Contact is Lars Huber, +41 44 416 3001, lars.huber @zuerich .ch (speaks EN/DE/FR). Please, if you reach out, let me know how it goes!
Eine Studie der Phase II zur Untersuchung der Wirksamkeit, der Sicherheit und der Verträglichkeit...

kofam.ch ist das Portal des Bundesamts für Gesundheit (BAG) zur Humanforschung in der Schweiz. Auf dieser Webseite finden sich ausführliche Basisinformationen zur Regelung der Humanforschung in der...

kofam.ch
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@postviraltrials
3 months
This article really nails what went wrong with RECOVER – prioritizing epidemiologists and biostats over postviral experts (which harmed even their epidemiological efforts!). Read it all – I got a few quotes!
‘They bungled it:’ NIH documents reveal how $1.6 billion Long Covid initiative has failed so far to...

In February 2021, the National Institutes of Health launched a new $1 billion initiative to study Long Covid, a chronic disease that has changed the lives of millions of Americans. Three years later,...

thesicktimes.org
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Post-Viral Trials News
@postviraltrials
1 month
It’s the ensitrelvir trial…still recruiting if you are in the Bay Area:
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UCSF COVID-19 Trial: Ensitrelvir for Viral Persistence and Inflammation in People Experiencing Long...

This COVID-19 study at UCSF is now recruiting people ages 18-69.

clinicaltrials.ucsf.edu
@k8lettuce
kl
@k8lettuce
1 month
Just finished my PREVAIL intake. Antivirals for Long Covid! Thank you, Dr. Peluso and Dr. Henrich!!!! @MichaelPelusoMD
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@postviraltrials
1 year
This one is enrolling finally! Let’s add a sixth to the Big Five trials. Looks like it’s by invitation only. If anybody knows anything more about it, or is asked to enroll (or reaches out themselves), my DMs are open
@PatientPersists
Siebe.
@PatientPersists
1 year
UCSF, led by @MichaelPelusoMD , is starting this trial with the anti -SARS-CoV-2 spike antibody cocktail AER002. Why I'm so excited that this can cure viral persistence in Long Covid:
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Post-Viral Trials News
@postviraltrials
1 year
Didn’t realize this but Berlin Cures on their website says we’ll get interim results on BC007 in Q1 2024. Hopefully they stick to it!
@LongCovid1997
John
@LongCovid1997
1 year
@PaulStavrou3 @postviraltrials @cuboidalhug @LongCovidComms @TylerPaulP It’s on their pipeline
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@postviraltrials
11 months
“The fact that an editor of the New England Journal of Medicine actually made a plea for researchers to submit long-COVID studies suggested that the field is struggling.”
@cuboidalhug
CL
@cuboidalhug
11 months
Summary of day 2 Keystone Long Covid meeting from @CortJohnson
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@postviraltrials
14 days
I hope this wasn’t one of the “really amazing manuscripts” that @NIHDirector said was coming out this summer
@PabloGVasco
Pablo Guisado Vasco
@PabloGVasco
15 days
Routine clinical daily laboratory values are useless for assessing prevalence or monitoring #longCOVID We already know that! Here are the data 🫤 PD: I hope the RECOVER cohort has a 2nd paper looking for real candidates as biomarkers @AnnalsofIM
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