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Reposted by ME/CFS research

Dr. Rachel Zoffness @drzoffness.bsky.social · 1d

Upcoming talk for the disability & chronic pain community on the science of pain and how to heal with @birdability.bsky.social - talk is free & accessible to all 💥💥💥

When: Mon 10/20 @ 7pm ET/4pm PT
Where: birdability.org

Join us!! 🙏🏼
#medsky #neuroskyence #disability #scisky 🧪

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Reposted by ME/CFS research

ME/CFS Science @mecfsskeptic.bsky.social · 2d

1) 🇬🇧 For ME/CFS patients in the UK only: Action for ME has opened its 2025 Big Survey! Last time, it had more than 4000 respondents, but hopefully this one will be even bigger.

The deadline for submitting your response is 27 January 2026.

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ME/CFS research @cfsresearch.bsky.social · 3d

This looks like a good study without any conflicts of interest. Would really need to see LC patients at 6 and 12 months, more healthy controls, and compare covid recovered patients to see if this is actually a factor in LC.

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ME/CFS research @cfsresearch.bsky.social · 3d

www.researchsquare.com/article/rs-7... Quantification of fibrinaloid clots in plasma from pediatric Long COVID patients using a microfluidic assay

Quantification of fibrinaloid clots in plasma from pediatric Long COVID patients using a microfluidic assay

Long COVID (LC) impacts one in five children after an acute SARS-CoV-2 infection. Typical LC symptoms include fatigue, brain fog, pain, and shortness of breath, which can significantly impact individu...

www.researchsquare.com

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ME/CFS research @cfsresearch.bsky.social · 5d

There isn't really any evidence showing that HR monitoring reduces PEM. The previous NICE guidelines and PACE trial used it for GET, and workwell also recommends using it for GET, but there is no evidence that it helps. The one study that looked at it found that it didn't help avoid PEM.

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Reposted by ME/CFS research

ME/CFS Science @mecfsskeptic.bsky.social · 5d

1) The Physios for ME team published a randomized trial on pacing with a heart rate monitor. It included 32 patients with ME/CFS and 15 with Long Covid.

A brief breakdown of the main results 🧵

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ME/CFS research @cfsresearch.bsky.social · 6d

Also significant conflict of interest there.

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ME/CFS research @cfsresearch.bsky.social · 6d

It's just a secondary analysis of their main study (pmc.ncbi.nlm.nih.gov/articles/PMC...), which was negative for its primary outcome.

RESTORE ME: a RCT of oxaloacetate for improving fatigue in patients with myalgic encephalomyelitis/chronic fatigue syndrome

The energy metabolite oxaloacetate is significantly lower in the blood plasma of ME/CFS subjects. A previous open-label trial with oxaloacetate supplementation demonstrated a significant reduction in ...

pmc.ncbi.nlm.nih.gov

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Reposted by ME/CFS research

Simon McGrath @simonmcg.bsky.social · 7d

There must be well over 100 ME/CFS biomarker studies, all claiming success – but none have been replicated.

And that's probably no better bet for forgetting media coverage either – it makes such a nice story (every time).

Chris Ponting @cgatist.bsky.social · 7d

The research used to claim reliability of a ME/CFS blood test has important limitations, shown here.

www.theguardian.com/society/2025...

Three possible confounders in a study proposing an ME/CFS blood test : sex/age, batch and inactivity/severity. Better designed studies by independent researchers are necessary.

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Reposted by ME/CFS research

ME/CFS Science @mecfsskeptic.bsky.social · 7d

1) There's a new ME/CFS study that is getting a lot of attention in the media. It focuses on epigenetics: how genes are switched on or off by folding DNA in a different way.

You genetic code itself is fixed but the expression of genes can change by environmental factors.

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ME/CFS research @cfsresearch.bsky.social · 7d

We get a few stories like this every year. Since the 90s there have been stories about blood tests that “prove” it is real.

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Reposted by ME/CFS research

Chris Ponting @cgatist.bsky.social · 7d

The research used to claim reliability of a ME/CFS blood test has important limitations, shown here.

www.theguardian.com/society/2025...

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ME/CFS research @cfsresearch.bsky.social · 8d

Oh, and the authors have a patent for the technique used in the study.

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ME/CFS research @cfsresearch.bsky.social · 9d

This kind of stuff just irritates me, as it's a waste of time and money. Let's look at the brain and try to find what is going wrong, rather than looking to prove a hypothesis.

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ME/CFS research @cfsresearch.bsky.social · 9d

All seems kind of dubious. No mention of overall differences between patients and controls, and has to use machine learning to come up with something. I mean, the brain is almost certainly involved, and it's plausible, but this just seems like junk science (correct me if I'm wrong about that).

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ME/CFS Science @mecfsskeptic.bsky.social · 11d

1) We’ve written an article about the DecodeME results: what the study measured, what the results show, and why its findings are important.

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ME/CFS research @cfsresearch.bsky.social · 12d

It's good that they reduce stress, but there is no evidence for those supplements or medications.

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ME/CFS research @cfsresearch.bsky.social · 14d

Chronic stress can result in ANS dysregulation and ME/CFS. For many patients, reducing that stress can help, and quite often leads to improvement or recovery. That should never involve self-gaslighting or pushing through. Stress reduction is always safe, and never harmful, if done sensibly.

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Reposted by ME/CFS research

ME/CFS research @cfsresearch.bsky.social · 17d

Most of the information in the article is incorrect. The ELISA test is only inaccurate for early lyme. For late lyme it's 100% accurate. The clinic seems to use a lot of unproven, unscientific tests and treatments.

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ME/CFS research @cfsresearch.bsky.social · 15d

They use Armin Labs (reddit.com/r/covidlongh...). Their test has very poor sensitivity and specificity (pmc.ncbi.nlm.nih.gov/articles/PMC...) and it comes back positive for most healthy people (forums.phoenixrising.me/threads/docu...
). It's basically a quacky scam.

From the covidlonghaulers community on Reddit

Explore this post and more from the covidlonghaulers community

reddit.com

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ME/CFS research @cfsresearch.bsky.social · 17d

I suspect the PACE trial is to blame for this theory. I was ill long before it.

ME/CFS research @cfsresearch.bsky.social · 17d

Sorry to hear that. I visited many doctors and didn't encounter any that subscribed to this model. Admittedly none were very helpful, although they did mention stress as a factor (which eventually got me on the right track).

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Reposted by ME/CFS research

Lyme Disease Action @lymediseaseaction.org.uk · 17d

It doesn't help, does it. Really sorry for the girl and her family. We have a Reality Check page which mentions that T-spot tests have been shown not to be useful. www.lymediseaseaction.org.uk/about-lyme/r... NB some late Lyme cases can test -ve if immunosuppression, or early inadequate treatment.

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ME/CFS research @cfsresearch.bsky.social · 17d

There isn't any evidence that HBOT is effective for MS, longcovid or ME/CFS. Save your money. onlinelibrary.wiley.com/doi/abs/10.1...

Hyperbaric Oxygen Therapy for Multiple Sclerosis

Multiple sclerosis (MS) is a chronic, inflammatory, and degenerative neurological illness with no cure. It has been suggested that Hyperbaric Oxygen Therapy (HBO2T) may slow or reverse the progress o...

onlinelibrary.wiley.com

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ME/CFS research @cfsresearch.bsky.social · 17d

Most of the information in the article is incorrect. The ELISA test is only inaccurate for early lyme. For late lyme it's 100% accurate. The clinic seems to use a lot of unproven, unscientific tests and treatments.

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