Netherlands: PAIS [Post-Acute Infection Syndromes] Conference, 26th to 29th August, 2026, Amsterdam

You could ask why people with ME/CFS are being asked to pay to contribute their lived experience and how that sits with good practice in PPI. Also is there anything at all that focuses on severe/very severe I couldn’t see it on skimming the agenda.
I have severe /very severe on my list of questions as agree it is important. I will see what else I discover
 
I am at the airport on my way home. My brain is full - so much information to digest before I can share in detail. I have done some high level summaries on my Linkedin page but there is so much more to share! Please bear with me whilst I try and pull it all together into something coherent
 
I am at the airport on my way home. My brain is full - so much information to digest before I can share in detail. I have done some high level summaries on my Linkedin page but there is so much more to share! Please bear with me whilst I try and pull it all together into something coherent
Thank you, Michelle, and safe travels!
 
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A blood-based mRNA signature distinguishes people with Long COVID from recovered individuals
Missailidis, Daniel; Ebrahimie, Esmaeil; Mohammadi-Dehcheshmeh, Manijeh; Allan, Claire; Sanislav, Oana; Fisher, Paul Robert; Gras, Stephanie; Annesley, Sarah Jane

Long COVID is a debilitating condition that lasts for more than three months post-infection by SARS-CoV-2. On average, one in ten individuals infected with SARS-CoV-2 develops Long COVID worldwide. A knowledge gap exists in our understanding of the mechanisms, genetic risk factors, and biomarkers that could be associated with Long COVID.

In this pilot study we used RNA-Seq to quantify the transcriptomes of peripheral blood mononuclear cells isolated from COVID-recovered individuals, seven with and seven without Long COVID symptoms (age-and sex-matched individuals), on average 6 months after infection.

Seventy genes were identified as significantly dysregulated up-or down-regulated in Long COVID samples, and the vast majority were downregulated. The most significantly dysregulated up or downregulated genes fell into two main categories, either associated with cell survival or with inflammation.

This included genes such as ICOS (FDR p = 0.024) and S1PR1 (FDR p = 0.019) that were both upregulated, indicating that a pro-inflammatory state is sustained in Long COVID PBMCs compared with Post-COVID recovered PBMCs. Functional enrichment analysis identified that immune-related functions were expectedly predominant among the dysregulated up-or down-regulated genes.

The most frequently downregulated genes in significantly altered functional categories were two leukocyte immunoglobulin-like receptors LILRB1 (FDR p = 0.005) and LILRB2 (FDR p = 0.027). Downregulation of these inhibitory receptors similarly indicates a sustained proinflammatory state in Long COVID PBMCs.

PCA analysis demonstrated that LILRB1 and LILRB2 expression discriminated all of the Long COVID samples from Post-COVID recovered samples. LILRB1 and LILRB2 should be validated as prospective biomarkers of Long COVID in larger cohorts, over time and against clinically overlapping conditions.

Link | PDF (Frontiers in Immunology)
Looks like follow on work from this study - look forward to seeing it in print at some point!
 
@DMissa saw your abstract in the “book of abstracts” congrats! This looks very interesting
I will have done the vast majority of the work that the abstract discusses, but I didn't write the abstract and I think my approach and thoughts will be best reflected in a paper currently under peer review - as forum regulars will know my interests have largely pivoted away from my older work. Hopefully you will be able to read it soon and decide for yourself. I would say it is our best-written ME/CFS paper in that it had the most time spent pre-planning the analysis strategy with minimal post-hoc steps and effort invested to present the results neutrally with minimum of interpretation. I hope it is a useful paper - we are all proud of it as a team.
 
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Having seen a couple threads about how brain cells use lipids when it was previously thought they only used glucose, I’m interested in seeing if there’s any connections to that.
Nothing I am aware of from the existing data that would be in that presentation

My future/ongoing interest in the lipid stuff is in first performing a multi-arm validation study (or a bunch of smaller studies) to see what actually has legs so we know what to focus on and what to throw in the bin. Not getting hung up on too many specific angles from prior studies yet.

My current interests are mostly in testing what's actually real among plausibly interesting things that have not had good replication attempts, and in following up DecodeME leads with more specific mechanistic questions. The too-small amount of time I get to do theory building is mostly based on important negative results that I am saddened many people seem not to regard as such, and on DecodeME.
 
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The too-small amount of time I get to do theory building is mostly based on important negative results that I am saddened many people seem not to regard as such, and on DecodeME.
I’m curious which negative results you’re talking about? It’s been difficult for me to keep up with the research as most goes right over my head. I’m interested to hear what has been ruled out because, as you say, they don’t get much attention.

Best of luck with the peer review process on that paper you wrote! I hope it goes as quickly and smoothly as possible!
 
I’m curious which negative results you’re talking about? It’s been difficult for me to keep up with the research as most goes right over my head. I’m interested to hear what has been ruled out because, as you say, they don’t get much attention.

Best of luck with the peer review process on that paper you wrote! I hope it goes as quickly and smoothly as possible!
To start with I am skeptical that ME/CFS is a primary mitochondrial disease despite this idea remaining in vogue for decades, and in spite of my PhD being on it and my career track record partly depending on it
 
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