Patient-Led Research Collaborative

We’ve released a new paper on designing & optimizing clinical trials for #LongCOVID! Strong, high-impact trials are critical & most current ones are insufficient. The paper gives guidance on treatments, outcomes, design, participant inclusion, & more. sciencedirect.com/science/articl… 1/

12/ Megan - Talked about the core Patient Led aspects. - Funding work to best impact patient community. - Applying lived experience to improve study design. - Hoping to move the whole research field by example. - Touched on the amazing patients behind the scenes.

7/ Dr Per Sjogren - Pilot study of MEcfs improvements via surgery for cervical spinal issues: - Problems: ethics board, strict recruitment criteria, surgical expertise. - Of 2 patients so far, both improved brain function, 1 life changed. - @TessFalor quick Q&A, knows much more!

6/ Dr Roshan Kumar - T-Cell dysfunction Pt2: - Detail of CD8+, etc, altered expression in 6 patients via single cell RNA sequencing. - IFNg, TNFa exhaustion. - TGF-B up, PRF1 & GZMB down. - Marker/sub-grouping possible. - Aiming to identify the persistent trigger antigen.

Happening today! Join @MichaelPelusoMD, @ahhrrr & others to hear the latest updates on #LongCovid research & the ADDRESS-LC trial — which will assess the impact of Bezisterim on cognitive impairment/brain fog & fatigue in people with LC. Register: us02web.zoom.us/webinar/regist…

Tomorrow @ 3 pm PT/6 pm ET! Register for “ADDRESS-LC Trial: Studying the Impact of #Bezisterim on #BrainFog & #Fatigue in People with #LongCovid.” We'll discuss how to join & implications for #MECFS. @biovie @MichaelPelusoMD #clinicaltrials ow.ly/LuQ450WiKtY

Coverage of July 9 webinar which covered "new findings about the underlying biology of infection-associated chronic conditions (IACCs),plus discussions about how patient engagement leads to better research" thesicktimes.org/2025/07/09/liv… Image from @s4me_info update #LongCovid #MEcfs

13/ @ahandvanish closed a tidy little round-table with a call for more donations to take them passed this summer into a full second round of funding (I think): patientresearchcovid19.com/donate/ This was just my haphazard quick take on much more comprehensive mini-conference.

11/ Dr Michael J. Peluso - Monoclonal antibodies [treatment] in LC. - Sadly not effective. - Maybe combination therapies (eg with anti-virals) might fare better. - Doesn't disprove vial persistence, but... - Emphasised repeatedly: should testing non-persistence hypotheses too!

10/ Dr Janet Mullington - sleep in LC. - 30% report sleep disturbance (insomnia, hypersomnia, breathing disorder, rhythm). - Poor sleep (<6h) before = 2.7x risk of LC. - Later & *less* REM. - Cortisol flattening = more fatigue. - Characteristic microsructural anomalies (novel)!

5/ David Esteban - Altered gut tryptophan metabolism. - Confirmed gut permeability & dysbiosis (low butyrate, SCFA, fimicutes:bacteroidetes). - Increased AHR agonist (bacterial products) correlate with cognitive symptoms (not patient vs control).

4/ Liisa Selin on T-Cell dysfunction (ME & LC) - Nice diagram of differentiation to CD4+, CD8+ (depleted), combined 4+8+ (greatly increased from ~1%)... - Cytokine production (IFNg, TNFa) & perforin down. - Hypothesis: difficulty clearing pathogens, etc. Echos @Joshual_TM some.

3/ Dr. Caroline Dalton - Microclots: - Recently infected have my clots than patients without problems. - Counts normally take ~1 year to fade. - Only half of LC show high counts (not sensitive marker). - Meds reduce clots, but often not symptoms. - Clots indicate inflammation.

2/ Braeden Charlton - Long COVID & MEcfs: - Poor oxygen extraction, earlier lactate (& steeper HR slopes). - Retain muscle mass vs deconditioning = severe atrophy. - Poor mitochondrial function vs deconditioning = loss of mitochondria. - Basement membrane thicker (biomarker?).

1/ My highlights from the very well run webinar of @PatientLed funded study results on #MEcfs & #LongCovid. Interesting patient directed funding + colab design. But I've focused more on science titbits. See also @IsabelRamirezRD live-tweeted thread via: x.com/patientled/sta…