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.
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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
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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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…
Minute 47:10 -
@Bundeskanzler
antwortet auf die Frage zu Long Covid im heutigen Bürgerdialog in Erfurt
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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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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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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
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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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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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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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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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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…(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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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”
“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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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
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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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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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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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
@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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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
@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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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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“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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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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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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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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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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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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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
Charité Studie: Hinweis für immun-vermittelte Schädigung der kleinen Gefäße der Muskeln bei
#PostCovid
Betroffenen mit Belastungsintoleranz:
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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
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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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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
📣 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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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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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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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
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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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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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.
#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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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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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
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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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.
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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A much more emphatic statement than I’ve ever seen from the NIH. Do they actually have the competence though, is the question…
“[
#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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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
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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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
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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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
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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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
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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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!
Stanford Paxlovid clinical trial was stopped early because it wasn't effective in treating
#longCOVID
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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
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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“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
.
We are excited to announce a 2nd series of collaborative projects & clinical trials supported via our LongCovid Research Consortium:
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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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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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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?
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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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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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…
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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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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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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.
@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
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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
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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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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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@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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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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🚨 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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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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David is underselling the benefits of participating – they give you microclot and platelet imaging and impressions! Here are mine:
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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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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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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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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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?)
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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
@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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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
What are these 13 treatment trials mentioned? Does anybody know?
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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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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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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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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
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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:
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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@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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@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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Baricitinib trial for Long Covid is getting much larger
@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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🚨 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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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!
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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?
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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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!
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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…
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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
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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“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.”
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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!
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Triemli Hospital (Zurich) says they’ll enroll for BC007 in fall/end of 2023. Must have gotten Long Covid from an infection no more than 12 mos. ago, need a PCR or “official antigen test.” Send email with test result to studielongcovid
@stadtspital
.ch
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That wasn’t the finding at all. This wasn’t a trial, there was no intervention. It’s simply noting a correlation between symptoms and physical activity.
Exercise reduces long-term COVID symptoms in young women 🏋️♀️🧠❤️
#ExerciseHeals
#COVID19Recovery
#YoungWomenFitness
#PostCOVID
#MentalHealth
#Neurological
#Health
#StayActive
#COVID
#Health
#PhysicalActivity
@SciReports
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Two new sites have been added for the Long COVID Ampligen trial, all currently recruiting: Davie, in South Florida; and Dallas, Texas. Plus three older sites in Southern California. PCR or certain antibody tests accepted, must be diagnosable with ME/CFS
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Who says there’s no hard-hitting research on Long Covid in the UK? Here’s a study on…standing up every once in a while!! Currently recruiting for this exciting trial into what the investigators surely believe to be a complex, debilitating condition
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So many well understood autoimmune disorders have unique manifestations apparent to outside observers (drooping eye in myasthenia gravis, rash in lupus, sweet urine in T1D). How many others are we missing because they present “only” as nondescript fatigue, pain, or psychosis?
I stand by my mantra. Every disease should be considered immunological, until proven otherwise.
#neuroimmunology
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I believe Argenx has finished dosing patients in its Vyvgart for post-Covid POTS trial (or at least will very soon). Results should be out within 3 months! (All participants now have the option to roll over to a 48-week open label extension, where they get the drug, no placebo.)
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I’ve heard from people regarding a few different trials that the shortage of clinicians treating post-viral patients is a big source of delay for trials. Clinicians testing/qualifying participants for trials are the same ones treating other patients, and there’s such a lack of…
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“Putrino and colleagues choose one of the enzymes, called lumbrokinase, for a long Covid trial planned for early 2024”
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At a conference today,
@argenxglobal
defined what it believes is the size of the US post-Covid POTS market: 500,000 patients (330,000 for Sjögren’s). Both phase 3 trials could start in 2024 (contingent on good phase 2 results, due first half of this year)
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PLEASE do this! One or two sentences. Goal is not to get them to publish the letters, but to have editors hear interest. These stories get read at the highest levels at the NIH, but the Times won’t keep writing them if they don’t get any feedback, because they get little traffic
I used to be a reporter in a past life. At the Times especially, editors do not let columnists and reporters write about just whatever, especially not kinda low-traffic things like this. If you want to see more Long Covid coverage, email them and tell them! letters
@nytimes
.com
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AIM scientific officer says he wants to do further Ampligen studies for post-Covid fatigue. Wants to seek external government funding, in touch with DOD, BARDA, NIH. He also mentions another phase 2, wants to use this study data to refine subtypes
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I used to be a reporter in a past life. At the Times especially, editors do not let columnists and reporters write about just whatever, especially not kinda low-traffic things like this. If you want to see more Long Covid coverage, email them and tell them! letters
@nytimes
.com
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I have a personal LC-related connection to Alaska, so I called Sen. Murkowski’s Anchorage office and told them a *very* sad story. If you know anybody in Alaska or Utah in particular who will make a call, it would be really good to get the Republicans on the committee interested
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Given that ME/CFS (Covid-onset or not) is fundamentally an activity-limiting disease, it would make a lot of sense for trials to use number of daily steps as an endpoint
This is more or less, my improvement visualized in terms of steps. In September something kicked in. I will just leave it at that. Still quite sick but what a difference.
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A doctor involved in an open label study of immunoadsorption for patients with Long COVID with ß2 autoantibodies says the “vast majority” of patients respond to the treatment, but then they deteriorate after three months, as the autoantibodies return
Bei einer überwiegenden Mehrheit der 20 Patienten scheint ein Ansprechen auf die Immunadsorption beobachtet zu werden.
Allerdings scheint sich der Zustand der Patienten nach ca. 3 Monaten auch wieder zu verschlechtern, wenn die beobachteten ß2-AAK vom Körper nachgebildet werden.
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Spot on column about Long Covid and the US government. So much in there, but I especially appreciated the recognition of
@meighanstone
’s not only work in Washington, but also financial contribution to bring patients there in person
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@NateB_Panic
@billsonofbill2
Nate, that is absolutely not true. POTS was a common post-viral condition even before Covid. Many common circulating viruses cause it besides SARS-CoV-2. If you have no reason to believe she had Covid this summer, please respect her life and delete this misinformation.
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I’m surprised to see some people say this must be an underestimate. 1.3% of all US adults is more than have rheumatoid arthritis. Humira (adalimumab) is used to treat RA, and is the top-selling drug in the world
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