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Tom Kindlon @tomkindlon.bsky.social · 10d

Microneurography Reveals Unmyelinated Small Nerve Fiber Dysfunction in Long COVID

onlinelibrary.wiley.com/doi/10.1002/...

"We show for first time widespread abnormalities in the function of unmyelinated somatosensory & autonomic axons that may explain the multiplicity of symptoms in #longCOVID”

Microneurography Reveals Unmyelinated Small Nerve Fiber Dysfunction in Long COVID

Objective To review the microneurography findings of long coronavirus disease 2019 (COVID) patients who presented to the clinic with multisystem involvement affecting neurological, cardiovascular, g.....

onlinelibrary.wiley.com

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Post-Viral Trials @postviraltrials.bsky.social · 10d

www.tenspros.com/intensity-mi...

www.facebook.com/groups/49204...

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ME/CFS Science @mecfsskeptic.bsky.social · 13d

7) The talk by Scheibenbogen at the Fatigatio conference is in German and can be rewatched here:

Prof. Carmen Scheibenbogen - Vortrag auf der ME/CFS-Fachtagung 2025 des Fatigatio e.V.

"Off-Label Medikamente bei ME/CFS" - Vortrag von Prof. Dr. med. Carmen Scheibenbogen, stellvertretende Leiterin Institut für Medizinische Immunologie am Charité Fatigue Centrum in Berlin. Über den Inhalt: Prof. Scheibenbogen betont, dass Off-Label-Medikamente wichtige Brückenoptionen darstellen, bi

www.youtube.com

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ME/CFS Science @mecfsskeptic.bsky.social · 13d

6) This is a bit curious, as the Norwegian group of Fluge and Mella is already doing a trial of Daratumumab, a drug that also targets CD38 cells. But perhaps it's good that different research groups are thinking in the same direction.

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ME/CFS Science @mecfsskeptic.bsky.social · 13d

5) Scheibenbogen said they have funding for the plasma/CD38 study through private funding and a foundation. Sanofi owns the medication they want to trial (so the drug is probably Isatuximab = Sarclisa) and they are interested in testing it further with them.

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ME/CFS Science @mecfsskeptic.bsky.social · 13d

4) With this new info, they would look to test drugs that deplete B-cells (targeting CD20 or CD19) or plasma cells (targeting CD38).

Her group is ambitious and wants to do both trials in parallel.

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ME/CFS Science @mecfsskeptic.bsky.social · 13d

1) Prof. Carmen Scheibenbogen's talk at the 2025 Fatigatio conference was mostly about off-label therapies in Germany.

But at the end she also talked about new treatment trials they have planned to pursue the hypothesis that ME/CFS is caused by antibodies.

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Post-Viral Trials @postviraltrials.bsky.social · 15d

Everything I’m on for ME/POTS: LDN, Mestinon, midodrine, desmopressin, IVIg, tVNS

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Tom Kindlon @tomkindlon.bsky.social · 16d

From the US

"this study...found that Paxlovid treatment during acute COVID-19 had no effect on subsequent PASC incidence."

journals.plos.org/plosmedicine...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC

Effect of Paxlovid treatment during acute COVID-19 on Long COVID onset: An EHR-based target trial emulation from the N3C and RECOVER consortia — Alexander Preiss et al.
"this study—with a large, nationally sampled cohort; a contemporary study period; and causal inference methodology—found that Paxlovid treatment during acute COVID-19 had no effect on subsequent PASC incidence."

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Tom Kindlon @tomkindlon.bsky.social · 15d

4/
“Since June, Vilde Lepsøy has been wearing a smartwatch to measure her basic fitness. She has also regularly answered questionnaires.

On September 30,she will receive the first injection of either daratumumab or a placebo drug”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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Tom Kindlon @tomkindlon.bsky.social · 15d

3/
“The [daratumumab] study has so far been funded solely by money donated by private individuals and funds raised by patients and patient associations for research into ME/CFS. The 5.5 million kroner* is still missing.”

* €471,312/US$555,886/GB£411,078

#MEcfs #CFS #MyalgicEncephalomyelitis

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Tom Kindlon @tomkindlon.bsky.social · 16d

Google translation of an article on an interesting #MECFS drug trial that is about to start in Norway

www-nettavisen-no.translate.goog/nyheter/vild...

Sadly they still haven't reached the amount required to fully do this study.

People can donate here:
www.me-foreningen.no/om-oss/stott...

#PwME

Vilde became disabled at the age of 25.

Vilde Lepsøy became disabled at the age of 25. Then many of her dreams withered. Photo: RUNE JOHANSEN

Now Vilde (33) is participating in a new ME study at Hauke

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Post-Viral Trials @postviraltrials.bsky.social · 19d

This study is enrolling across the U.S. – no need to visit New York in person. I’d highly recommend participating if you have Long Covid, tVNS is one of a few things that I think has helped me a lot.

Cort Johnson @cortjohnson.bsky.social · 20d

The Promise of Vagus Nerve Stimulation – and the No Brainer Long COVID Trial Underway #MECFS #longCOVID #FM #POTS www.healthrising.org/blog/2025/09...

The Promise of Vagus Nerve Stimulation - and the No Brainer Long COVID Trial Underway - Health Rising

Vagus nerve stimulation could reduce inflammation, pain and stress in ME/CFS, fibromyalgia and long COVID. A long COVID trial is underway.

www.healthrising.org

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Post-Viral Trials @postviraltrials.bsky.social · 28d

These trials (LDN and stellate ganglion blocks in particular) feel like they’re straight out of 2022

Heidi J. De Vries @matokieslaughter.bsky.social · 29d

New Long COVID clinical trials from RECOVER-TLC
thesicktimes.org/2025/09/09/r...

RECOVER-TLC announces new Long COVID clinical trials, receives mixed reactions from patient community - The Sick Times

Some Long COVID advocates and researchers, including those who advised the National Institutes of Health’s initiative, say RECOVER-TLC isn’t living up to its promised ambition.

thesicktimes.org

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Post-Viral Trials @postviraltrials.bsky.social · Sep 8

This is some of the best use of funding in the post-viral field. If you have money to spare, this is very much worth donating to. This team has some of the best experience in running trials, and one of the most promising drugs.

Tom Kindlon @tomkindlon.bsky.social · Sep 6

New:

English-language version of donation page for a Norwegian non-profit foundation dedicated to supporting biomedical research on ME/CFS.

Currently looking for funding for important drug trial [Daratumumab] by respected research team

www.me-foreningen.no/om-oss/stott...

#MEcfs #PwME #CFS

About ME-fondet
ME-fondet is a Norwegian non-profit foundation dedicated to supporting biomedical research on Myalgic Encephalomyelitis (ME/CFS). We raise funds for high-quality, independent studies that seek to uncover the underlying mechanisms of this severe disease and bring hope for better treatments.

Why Daratumumab?
Promising clinical observations suggest that the drug Daratumumab – a monoclonal antibody originally developed for multiple myeloma – may help ME patients. A pilot study in Norway has shown encouraging results, and further research is urgently needed to confirm its potential.

Our Goal
We are now fundraising to finance the next stage of Daratumumab research. At present, all donations to ME-fondet go directly to the Daratumumab study. The project is not yet fully funded, and additional resources are needed to move the research forward. ME-fondet is working actively to help secure the remaining funds so the study can be completed and provide answers for patients worldwide.

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Post-Viral Trials @postviraltrials.bsky.social · Sep 8

Data collected in 2012-2020, just published now, showing…people with ME/CFS often have dysautonomia. I know everybody is rallying around the federal government’s health initiatives since they’re under so much attack, but maybe this kind of ineptitude is why they were so vulnerable in the first place

Tom Kindlon @tomkindlon.bsky.social · Sep 5

New CDC-funded multi-centre study:

Autonomic Dysfunction in ME/CFS

www.mdpi.com/2077-0383/14...

"ME/CFS patients exhibit a substantial autonomic symptom burden that correlates with greater illness severity"

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Abstract
Background/Objectives: Symptoms of autonomic dysfunction are common in infection-associated chronic conditions and illnesses (IACCIs), including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This study aimed to evaluate autonomic symptoms and their impact on ME/CFS illness severity. Methods: Data came from a multi-site study conducted in seven ME/CFS specialty clinics during 2012–2020. Autonomic dysfunction was assessed using the Composite Autonomic Symptom Scale 31 (COMPASS-31), medical history, and a lean test originally described by the National Aeronautics and Space Administration (NASA). Illness severity was assessed using Patient-Reported Outcomes Measurement Information System measures, the 36-item short-form, as well as the CDC Symptom Inventory. This analysis included 442 participants who completed the baseline COMPASS-31 assessment, comprising 301 individuals with ME/CFS and 141 healthy controls (HC). Results: ME/CFS participants reported higher autonomic symptom burden than HC across three assessment tools (all p < 0.0001), including the COMPASS-31 total score (34.1 vs. 6.8) and medical history indicators [dizziness or vertigo (42.6% vs. 2.8%), cold extremities (38.6% vs. 5.7%), and orthostatic intolerance (OI, 33.9% vs. 0.7%)]. Among ME/CFS participants, 97% had at least one autonomic symptom. Those with symptoms in the OI, gastrointestinal, and pupillomotor domains had significantly higher illness severity than those without these symptoms. Conclusions: ME/CFS patients exhibit a substantial autonomic symptom burden that correlates with greater illness severity. Individualized care strategies targeting dysautonomia assessment and intervention may offer meaningful improvements in symptom management and quality of life for those with ME/CFS and similar chronic conditions.

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Long COVID Labs @longcovidlabs.bsky.social · Sep 3

IMC-2 was successful in reducing long COVID symptoms, both alone and in combination with Paxlovid!

Very exciting! 🙌🙌🙌

Thanks @putrinolab.bsky.social and Dr. Pridgen for everything you do to help LC patients! 🙏

Link: www.researchsquare.com/article/rs-7...

An error has occurred

Research Square is a preprint platform that makes research communication faster, fairer, and more useful.

www.researchsquare.com

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Long COVID Labs @longcovidlabs.bsky.social · Sep 3

New #LongCOVID case study out!

In this study, subjects were given a new drug called IMC-2, which is a combination of the herpesvirus antiviral drug valcyclovir and celexoxib, an anti-inflammatory which is believed to also have antiviral properties.

1/

Screenshot of article title and author info from this paper:

https://www.researchsquare.com/article/rs-7500476/'https://www.researchsquare.com/article/rs-7500476/v1

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ME/CFS Science @mecfsskeptic.bsky.social · Sep 3

8 ) Link to the (open-access) paper:

Jothi et al. Long COVID and chronic fatigue syndrome/myalgic encephalitis share similar pathophysiologic mechanisms of exercise limitation.

Long COVID and chronic fatigue syndrome/myalgic encephalitis share similar pathophysiologic mechanisms of exercise limitation

Post-acute sequelae of SARS-CoV-2 (PASC or “long COVID”) and chronic fatigue syndrome/myalgic encephalitis (CFS/ME) share symptoms such as exertional dyspnea. We used exercise oxygen pathway analysis...

physoc.onlinelibrary.wiley.com

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ME/CFS Science @mecfsskeptic.bsky.social · Sep 3

6) Results were similar to the preload failure that David Systrom's group reported.

The authors found a reduced cardiac index relative to controls and "in keeping with the lack of a rise in right atrial pressure with exercise, this may be considered 'preload insufficiency'”

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ME/CFS Science @mecfsskeptic.bsky.social · Sep 3

5) Instead, the authors suspect that the results point to an "abnormal peripheral neuromuscular response" to exercise. Five out of six patients tested had findings consistent with small fiber neuropathy.

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ME/CFS Science @mecfsskeptic.bsky.social · Sep 3

4) The researchers don't think it's just deconditioning: "While deconditioning can reduce cardiac output, the dysautonomia and preload insufficiency observed in PASC and CFS/ME appear mechanistically distinct."

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ME/CFS Science @mecfsskeptic.bsky.social · Sep 3

1) A research team from Arizona university used Invasive cardiopulmonary exercise testing (iCPET) in ME/CFS and Long Covid patients.

They found that muscle oxygen diffusion was the most impaired parameter.

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Post-Viral Trials @postviraltrials.bsky.social · Aug 29

Which trial are you in?

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ME/CFS Science @mecfsskeptic.bsky.social · Aug 24

1) Very preliminary data but Dutch researchers report that antibodies of Long Covid patients caused more cultured muscles cells to die.

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