ME/CFS Science

ME/CFS Science

@mecfsscience.org

In-depth analysis of research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Formerly known as ME/CFS Skeptic. https://mecfsscience.org/

2,620 Followers 159 Following 2,723 Posts Joined Oct 2023
5 hours ago

Useful comments on the new Polybio study on viral persistence πŸ‘‡

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11 hours ago
Persistent SARS-CoV-2 Spike is Associated with Localized Immune Dysregulation in Long COVID Gut Biopsies | bioRxiv bioRxiv - the preprint server for biology, operated by openRxiv, a nonprofit organization dedicated to advancing scientific communication

8) Link to the preprint:

Soria et al. Persistent SARS-CoV-2 Spike is Associated with Localized Immune Dysregulation in Long COVID Gut Biopsies

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11 hours ago

7) The paper mentions for example: "Surprisingly, a participant with no recorded infection was positive for nCoV2019-S and Spike protein." So either this person had an asymptomatic infection without knowing it, or the RNA and spike protein were remnants from the vaccine.

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11 hours ago

6) The median dots per cell was 0.042 for LC, so RNA was quite sparse. It's unclear if this signal represents intact RNA virus, fragmented debris, or something else.

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11 hours ago

5) The different gene expression analysis also suffered from the tiny sample size. There were many differences, but only 6 downregulated genes passed thestatistical significance threshold.

These changes might also be due to other factors than SARS-CoV-2 RNA.

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11 hours ago

4) The difference in viral RNA was only significant for one probe (V-nCoV2019-S), not the other (V-nCoV2019-orf1ab-sense), and only in the colon tissue, not in the small intestine.

The antibody panel targeting the SARS-CoV-2 Spike protein showed no significant differences.

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11 hours ago

3) A big problem, however, is that this is a very small study with only 8 LC patients and 5 controls, which makes it hard to draw strong conclusions. The participants were also not well matched: 75% of the patients were female, compared with 20% of the controls.

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11 hours ago

2) The authors argue that viral persistence may still be important for Long Covid because:

- There was more virus in patients than controls
- There were more signs of local immune activation in patients versus controls

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11 hours ago
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1) New Polybio study reports: "We confirmed the persistence of SARS-CoV-2 Spike transcript and protein in the gut tissue of all LC cases and controls tested."

So while RNA and proteins from the virus were present, these were found in controls as well.

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2 days ago

Think this account is just making fake AI posts for Facebook likes.

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2 days ago
Preview
It's Science One of medicine's most dismissed and misunderstood conditions β€” chronic fatigue syndrome (ME/CFS) β€” now has a potential biological answer that has emerged from the gut microbiome. Dutch researchers...

5) Link to the post on Facebook:

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2 days ago

4) This account 'It's Science' publishes multiple of these AI posts a day about all sorts of topics. The one on the fake ME/CFS study from Leiden got 1.9 likes and 227 comments.

Hopefully this is not a sign of what's to come with unreliable AI posts...

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2 days ago

3) So the claims about this strain being identified at Leiden University Medical Center, that they used a
targeted probiotic therapy to restore these bacteria in ME/CFS, and that these resulted in complete resolution of symptom in a majority of patients...

Seems all false.

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2 days ago

2) It looks like the post was made with AI hallucinations. The microbe strain they mention "Faecalibacterium prausnitzii" was reduced in ME/CFS patients in a 2023 study by the Lipkin group at Columbia university.

But there wasn't a treatment trial of these bacteria.

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2 days ago
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1) A Facebook account with more than 100k followers posts about a ME/CFS study from Leiden university, saying that its "targeted probiotic therapy produced complete resolution of fatigue, cognitive impairment, and post-exertional malaise"

Except this study doesn't exist...

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3 days ago
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No doesn't look like it, does mention pacing and other lifestyle interventions.

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3 days ago

Interesting research project on ME/CFS and Long Covid πŸ‘‡

"Our research consultation offers a structured, research-focused review [...] The process begins with an in-depth analysis of the participant’s genetic info, focusing on genes and variants of interest."

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3 days ago
ME/CFS & Long COVID Research Consultation – Center for Computational Genomics and Data Science

If people are interested in being a part of our personalized medicine #MECFS #LongCovid #Genomics research study, we have added additional information on how to go about that here: sites.uab.edu/cgds/mecfs-c...

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3 days ago

This is a useful thread, and a bit disappointing, especially regarding not mentioning negative trials or conflicts of interest. I only really looked at Modafinil, since it's one I'm meant to be trying.

Though I did get the impression it was just a list of the most common "maybe it will help??"

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3 days ago
Preview
Long COVID Treatment Guide An evidence-supported guide covering treatments addressing multiple Long COVID symptoms & mechanisms β€” focused on prescription medication, with a limited set of supplements, OTC medications, procedures, and lifestyle modifications included for breadth.

10) The Long COVID Treatment Guide is available here:

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3 days ago

9) I realize that this guide is well-intentioned, that due lack of funding we have very little evidence, that patients often do not get the support they deserve, etc.

But the overviews seem to promote these treatments, rather than giving a neutral summary of the evidence.

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3 days ago

8 ) Most of the treatments listed in this guide are based on the TREATME study by Martha Eckey et al. While interesting, this TREATME study was just a survey with all sorts of selection and response bias. This is not reliable way to identify effective treatments.

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3 days ago

7) The treatment guide also doesn't mention major conflicts of interest in positive trials of Oxaloacetate (by Terra Biological, a company that sells this supplement) or the Zilberman-Itskovich trial on HBOT (by AVIV Scientific LTD which promotes hyperbaric medicine).

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3 days ago

6) Most of the trials mentioned above are small so they do not prove that the treatment doesn't work. But when giving an overview of scientific papers per treatment, it's best to not only focus on positives ones but mention negative trials as well.

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3 days ago

5) Same issue with Hyperbaric Oxygen Therapy (HBOT): they mention all sorts of papers except the Belgian RCT that found no significant effect. The other trials were also much less convincing that summarized in the treatment guide.
pubmed.ncbi.nlm.nih....

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3 days ago

4) For Modafinil, no mention of this small negative trial:
pubmed.ncbi.nlm.nih....

For antihistamines, no mention of this small RCT that trialled an older antihistamine terfenadine and got negative results.
pubmed.ncbi.nlm.nih....

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3 days ago

3) Same issue with IVIG where they mention "In ME/CFS, three studies reported positive outcomes" but this mostly refers to case reports. They don't seem to mention the ME/CFS randomized trials that had negative results.

pubmed.ncbi.nlm.nih....
pubmed.ncbi.nlm.nih....

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3 days ago

2) In the case of "Antivirals against Herpesvirus Reactivations" it doesn't mention that there are randomized controlled trials on ME/CFS for Acyclovir and Valganciclovir that had null results.

pubmed.ncbi.nlm.nih....
www.nejm.org/doi/10....

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3 days ago
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1) See several problems with the new Long Covid treatment guide by RTHM and Patient-Led Research Collaborative.

- It focuses on a social media survey instead of randomized controlled trials
- It fails to mention several trials that had negative results.

A brief thread 🧡

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4 days ago
Neurons undergo IFNΞ³-driven persistent epigenetic shifts and synaptopathy in encephalitis Shammas et al. show a neuronal epigenetic remodeling during CNS encephalitis. This program involves IFNΞ³-driven persistent reduction in TF-binding site accessibility, linked to long-lasting reduction of synaptic gene expression and associated synaptopathy. Parallel findings in Rasmussen encephalitis patient neurons point toward a conserved cross-species mechanism.

9) Link to the paper:

Shammas et al. 2026. Neurons undergo IFNy-driven persistent epigenetic shifts and synaptopathy in encephalitis.

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