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Reposted by ME/CFS research

Simon McGrath @simonmcg.bsky.social · 6h

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 · 20h

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 · 12h

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 · 13h

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 · 20h

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 · 1d

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

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ME/CFS research @cfsresearch.bsky.social · 2d

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 · 2d

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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Reposted by ME/CFS research

ME/CFS Science @mecfsskeptic.bsky.social · 4d

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 · 5d

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 · 7d

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 · 10d

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 · 9d

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 · 10d

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

ME/CFS research @cfsresearch.bsky.social · 10d

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 · 10d

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 · 10d

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 · 10d

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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Reposted by ME/CFS research

ME/CFS Science @mecfsskeptic.bsky.social · 10d

1) A major genetic study on fibromyalgia just came out with DNA samples from 50.000 patients and 2.5 million controls.

Most of the hits point to the brain and several implicated genes (RABGAP1L, OLFM4, DCC) were also found in the DecodeME study on ME/CFS.

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ME/CFS research @cfsresearch.bsky.social · 11d

Regarding 1, there is good evidence that stress is a significant cause, but the effects of stress are not purely psychological...they are mainly physiological.

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ME/CFS research @cfsresearch.bsky.social · 11d

psychosocial factors and nervous system dysregulation. Of course, pushing through or forcing GET is a ridiculous cure for nervous system dysregulation, as that will just make it worse. What is needed is sensible researchers looking at the evidence (including patient experiences).

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ME/CFS research @cfsresearch.bsky.social · 11d

Maeve, as she did get nutrition, and she died because she decided she didn't want TPN (which was offered), as she didn't have any hope of recovery. That lack of hope is a common reason for suicide in patients, not some BPS bogeyman. And there is no objective pathology that has been found, only

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ME/CFS research @cfsresearch.bsky.social · 11d

This is quite biased and inaccurate. There is no one "BPS" model. Of course the model she describes is wrong and dangerous, but it's not the model that any serious scientist, or anyone who understands the illness, subscribes to. It's a bit of a straw man. It certainly wasn't the model used to treat

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

Interesting. CD38 is an important connector between the heart and the brain www.nature.com/articles/s41...

CD38 connects the heart and brain - Translational Psychiatry

Translational Psychiatry - CD38 connects the heart and brain

www.nature.com

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

I think it shows that PEM is too vaguely defined. I would define it as extreme fatigue as well as severe cognitive and/or neurological symptoms 24 hours later, that isn't due to deconditioning.

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Reposted by ME/CFS research

Simon McGrath @simonmcg.bsky.social · 14d

It was 86% for people with a post-Covid condition

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