ME/CFS research
@cfsresearch.bsky.social
Interested in research into ME/CFS/MECFS, FND and related conditions. https://medium.com/@cfs_research
Reposted by ME/CFS research
1) New preprint from the Stanford group of Ron Davis.
They looked for 185 human viruses, and found traces of 17 viruses in patients or controls. "Surprisingly", the authors write "more viruses were found in the healthy controls than in the ME/CFS patients."
They looked for 185 human viruses, and found traces of 17 viruses in patients or controls. "Surprisingly", the authors write "more viruses were found in the healthy controls than in the ME/CFS patients."
November 8, 2025 at 3:06 PM
1) New preprint from the Stanford group of Ron Davis.
They looked for 185 human viruses, and found traces of 17 viruses in patients or controls. "Surprisingly", the authors write "more viruses were found in the healthy controls than in the ME/CFS patients."
They looked for 185 human viruses, and found traces of 17 viruses in patients or controls. "Surprisingly", the authors write "more viruses were found in the healthy controls than in the ME/CFS patients."
Reposted by ME/CFS research
For patients with Long Covid: you can now participate in a remote treatment trial of tirzepatide (a GLP-1 inhibitor also known as zepbound).
The study is organized by Scripps Research and aims to enroll 1000 participants.
The study is organized by Scripps Research and aims to enroll 1000 participants.
November 3, 2025 at 8:15 AM
For patients with Long Covid: you can now participate in a remote treatment trial of tirzepatide (a GLP-1 inhibitor also known as zepbound).
The study is organized by Scripps Research and aims to enroll 1000 participants.
The study is organized by Scripps Research and aims to enroll 1000 participants.
Reposted by ME/CFS research
Preventive effect of vaccination on long COVID in adolescents with SARS-CoV-2 infection
Immune memory more rapidly contains and clears infections, thereby reducing amplitude and time of immune responses, reducing risk of secondary effects.
www.sciencedirect.co...
1/6
Immune memory more rapidly contains and clears infections, thereby reducing amplitude and time of immune responses, reducing risk of secondary effects.
www.sciencedirect.co...
1/6
Preventive effect of vaccination on long COVID in adolescents with SARS-CoV-2 infection
In adolescents (12–17 years), it is unknown whether COVID-19 vaccination reduces progression from COVID-19 to Long COVID (LC) beyond preventing SARS-C…
www.sciencedirect.com
November 3, 2025 at 12:22 PM
Preventive effect of vaccination on long COVID in adolescents with SARS-CoV-2 infection
Immune memory more rapidly contains and clears infections, thereby reducing amplitude and time of immune responses, reducing risk of secondary effects.
www.sciencedirect.co...
1/6
Immune memory more rapidly contains and clears infections, thereby reducing amplitude and time of immune responses, reducing risk of secondary effects.
www.sciencedirect.co...
1/6
Reposted by ME/CFS research
Looks like this trial actually showed that HBOT likely doesn't work in ME/CFS.
They excluded 7/37 participants who dropped out
They do not compare results to a control group
Participants received 40 sessions
And still, the improvement was only 6.3 points on the SF-36 PF scale
They excluded 7/37 participants who dropped out
They do not compare results to a control group
Participants received 40 sessions
And still, the improvement was only 6.3 points on the SF-36 PF scale
1) 🇩🇪 A new preprint by the Charité group reports improvements after 40 sessions of hyperbaric oxygen therapy in 30 ME/CFS patients.
However, there was no control group, and the improvements were far from impressive.
However, there was no control group, and the improvements were far from impressive.
November 2, 2025 at 10:42 AM
Looks like this trial actually showed that HBOT likely doesn't work in ME/CFS.
They excluded 7/37 participants who dropped out
They do not compare results to a control group
Participants received 40 sessions
And still, the improvement was only 6.3 points on the SF-36 PF scale
They excluded 7/37 participants who dropped out
They do not compare results to a control group
Participants received 40 sessions
And still, the improvement was only 6.3 points on the SF-36 PF scale
Reposted by ME/CFS research
1) Reading this review on fatigue in other diseases: it's notable how it manifests early in the illness (often before diagnosis), how it's often poorly explained (correlates poorly with pathology markers), yet is reported to be one of the most disabling symptoms.
October 29, 2025 at 8:23 AM
1) Reading this review on fatigue in other diseases: it's notable how it manifests early in the illness (often before diagnosis), how it's often poorly explained (correlates poorly with pathology markers), yet is reported to be one of the most disabling symptoms.
Reposted by ME/CFS research
Interested in ME/CFS research?
Want to do a PhD with @aryback.bsky.social, @avakhamseh.bsky.social, @sjoerdvbeentjes.bsky.social & @cgatist.bsky.social?
Then apply for a *funded* Future Medicine PhD Fellowship.
See: www.findaphd.com/phds/project...
Please contact us to discuss before applying.
Want to do a PhD with @aryback.bsky.social, @avakhamseh.bsky.social, @sjoerdvbeentjes.bsky.social & @cgatist.bsky.social?
Then apply for a *funded* Future Medicine PhD Fellowship.
See: www.findaphd.com/phds/project...
Please contact us to discuss before applying.
Personalised blood-based biomarkers for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) symptom severity at University of Edinburgh on FindAPhD.com
PhD Project - Personalised blood-based biomarkers for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) symptom severity at University of Edinburgh, listed on FindAPhD.com
www.findaphd.com
October 28, 2025 at 8:27 PM
Interested in ME/CFS research?
Want to do a PhD with @aryback.bsky.social, @avakhamseh.bsky.social, @sjoerdvbeentjes.bsky.social & @cgatist.bsky.social?
Then apply for a *funded* Future Medicine PhD Fellowship.
See: www.findaphd.com/phds/project...
Please contact us to discuss before applying.
Want to do a PhD with @aryback.bsky.social, @avakhamseh.bsky.social, @sjoerdvbeentjes.bsky.social & @cgatist.bsky.social?
Then apply for a *funded* Future Medicine PhD Fellowship.
See: www.findaphd.com/phds/project...
Please contact us to discuss before applying.
Reposted by ME/CFS research
1) 🇮🇳 Colchicine, an anti-inflammatory drug used to treat gout, was found to be ineffective for Long Covid.
A placebo-controlled trial in JAMA Internal Medicine found that "colchicine did not improve functional capacity, respiratory function, or inflammatory markers."
A placebo-controlled trial in JAMA Internal Medicine found that "colchicine did not improve functional capacity, respiratory function, or inflammatory markers."
October 27, 2025 at 8:34 AM
1) 🇮🇳 Colchicine, an anti-inflammatory drug used to treat gout, was found to be ineffective for Long Covid.
A placebo-controlled trial in JAMA Internal Medicine found that "colchicine did not improve functional capacity, respiratory function, or inflammatory markers."
A placebo-controlled trial in JAMA Internal Medicine found that "colchicine did not improve functional capacity, respiratory function, or inflammatory markers."
Reposted by ME/CFS research
1) A pilot study tested transcranial magnetic stimulation in 15 ME/CFS patients.
It's a non-invasive treatment that repeatedly uses magnetic fields to influence brain activity. The hope is that it helps to recalibrate dysregulated neural networks.
It's a non-invasive treatment that repeatedly uses magnetic fields to influence brain activity. The hope is that it helps to recalibrate dysregulated neural networks.
October 25, 2025 at 8:09 AM
1) A pilot study tested transcranial magnetic stimulation in 15 ME/CFS patients.
It's a non-invasive treatment that repeatedly uses magnetic fields to influence brain activity. The hope is that it helps to recalibrate dysregulated neural networks.
It's a non-invasive treatment that repeatedly uses magnetic fields to influence brain activity. The hope is that it helps to recalibrate dysregulated neural networks.
Reposted by ME/CFS research
1) The research team of Leonard Jason has published the DSQ-PEM-2, a new short questionnaire to assess post-exertional malaise (PEM).
It includes extra questions about multiple PEM triggers, delayed onset, and prolonged recovery.
But there are also some issues...
It includes extra questions about multiple PEM triggers, delayed onset, and prolonged recovery.
But there are also some issues...
October 22, 2025 at 7:51 AM
1) The research team of Leonard Jason has published the DSQ-PEM-2, a new short questionnaire to assess post-exertional malaise (PEM).
It includes extra questions about multiple PEM triggers, delayed onset, and prolonged recovery.
But there are also some issues...
It includes extra questions about multiple PEM triggers, delayed onset, and prolonged recovery.
But there are also some issues...
Reposted by ME/CFS research
1) It doesn't happen very often that an ME/CFS paper gets retracted.
But the journal Food Science & Nutrition just retracted a study that claimed certain lipids contribute to the development of ME/CFS. It suggested that "dietary choices can potentially mitigate the syndrome."
But the journal Food Science & Nutrition just retracted a study that claimed certain lipids contribute to the development of ME/CFS. It suggested that "dietary choices can potentially mitigate the syndrome."
October 22, 2025 at 1:35 PM
1) It doesn't happen very often that an ME/CFS paper gets retracted.
But the journal Food Science & Nutrition just retracted a study that claimed certain lipids contribute to the development of ME/CFS. It suggested that "dietary choices can potentially mitigate the syndrome."
But the journal Food Science & Nutrition just retracted a study that claimed certain lipids contribute to the development of ME/CFS. It suggested that "dietary choices can potentially mitigate the syndrome."
Reposted by ME/CFS research
1) We watched the 2025 Stanford Symposium on ME/CFS and summarized many of the presentations.
While it's great to see so many talented people focusing on ME/CFS, we also noted that a lot of research is focused on hypotheses that are not yet supported by strong evidence.
While it's great to see so many talented people focusing on ME/CFS, we also noted that a lot of research is focused on hypotheses that are not yet supported by strong evidence.
October 21, 2025 at 3:58 PM
1) We watched the 2025 Stanford Symposium on ME/CFS and summarized many of the presentations.
While it's great to see so many talented people focusing on ME/CFS, we also noted that a lot of research is focused on hypotheses that are not yet supported by strong evidence.
While it's great to see so many talented people focusing on ME/CFS, we also noted that a lot of research is focused on hypotheses that are not yet supported by strong evidence.
Reposted by ME/CFS research
1) We’ve just published our second instalment on the DecodeME results, this timing zooming in on the genes associated with ME/CFS.
October 13, 2025 at 8:58 AM
1) We’ve just published our second instalment on the DecodeME results, this timing zooming in on the genes associated with ME/CFS.
Reposted by ME/CFS research
📚Been writing a book for the past 3 years about the science of pain & how to heal. I'm nervous AF but also know that the time has come for change-
ESPECIALLY with all the pain in the world right now.
Please spread the word & share with anyone who might need it 🙏🏼💥
www.amazon.com/Tell-Me-Wher...
ESPECIALLY with all the pain in the world right now.
Please spread the word & share with anyone who might need it 🙏🏼💥
www.amazon.com/Tell-Me-Wher...
Tell Me Where It Hurts: The New Science of Pain and How to Heal
Tell Me Where It Hurts: The New Science of Pain and How to Heal [Zoffness Ph.D, Dr. Rachel] on Amazon.com. *FREE* shipping on qualifying offers. Tell Me Where It Hurts: The New Science of Pain and How to Heal
www.amazon.com
October 20, 2025 at 12:58 AM
📚Been writing a book for the past 3 years about the science of pain & how to heal. I'm nervous AF but also know that the time has come for change-
ESPECIALLY with all the pain in the world right now.
Please spread the word & share with anyone who might need it 🙏🏼💥
www.amazon.com/Tell-Me-Wher...
ESPECIALLY with all the pain in the world right now.
Please spread the word & share with anyone who might need it 🙏🏼💥
www.amazon.com/Tell-Me-Wher...
Autonomic phenotyping, brain blood flow control, and cognitive-motor-integration in Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome: A pilot study www.sciencedirect.com/science/arti...
Autonomic phenotyping, brain blood flow control, and cognitive-motor-integration in Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome: A pilot study
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and the prolonged sequelae after COVID-19 (>3 months; Long COVID) have similar symptomolog…
www.sciencedirect.com
October 16, 2025 at 12:47 AM
Autonomic phenotyping, brain blood flow control, and cognitive-motor-integration in Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome: A pilot study www.sciencedirect.com/science/arti...
Reposted by ME/CFS research
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 🧪
When: Mon 10/20 @ 7pm ET/4pm PT
Where: birdability.org
Join us!! 🙏🏼
#medsky #neuroskyence #disability #scisky 🧪
October 14, 2025 at 10:45 PM
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 🧪
When: Mon 10/20 @ 7pm ET/4pm PT
Where: birdability.org
Join us!! 🙏🏼
#medsky #neuroskyence #disability #scisky 🧪
Reposted by ME/CFS research
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.
The deadline for submitting your response is 27 January 2026.
October 13, 2025 at 5:24 PM
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.
The deadline for submitting your response is 27 January 2026.
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
October 12, 2025 at 8:04 PM
www.researchsquare.com/article/rs-7... Quantification of fibrinaloid clots in plasma from pediatric Long COVID patients using a microfluidic assay
Reposted by ME/CFS research
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 🧵
A brief breakdown of the main results 🧵
October 10, 2025 at 12:59 PM
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 🧵
A brief breakdown of the main results 🧵
Reposted by ME/CFS research
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).
And that's probably no better bet for forgetting media coverage either – it makes such a nice story (every time).
The research used to claim reliability of a ME/CFS blood test has important limitations, shown here.
www.theguardian.com/society/2025...
www.theguardian.com/society/2025...
October 8, 2025 at 8:21 PM
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).
And that's probably no better bet for forgetting media coverage either – it makes such a nice story (every time).
Reposted by ME/CFS research
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.
You genetic code itself is fixed but the expression of genes can change by environmental factors.
October 8, 2025 at 3:13 PM
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.
You genetic code itself is fixed but the expression of genes can change by environmental factors.
Reposted by ME/CFS research
The research used to claim reliability of a ME/CFS blood test has important limitations, shown here.
www.theguardian.com/society/2025...
www.theguardian.com/society/2025...
October 8, 2025 at 6:39 AM
The research used to claim reliability of a ME/CFS blood test has important limitations, shown here.
www.theguardian.com/society/2025...
www.theguardian.com/society/2025...
Reposted by ME/CFS research
1) We’ve written an article about the DecodeME results: what the study measured, what the results show, and why its findings are important.
October 4, 2025 at 8:27 AM
1) We’ve written an article about the DecodeME results: what the study measured, what the results show, and why its findings are important.
Reposted by ME/CFS research
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.
September 28, 2025 at 6:28 PM
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.
Reposted by ME/CFS research
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.
September 28, 2025 at 8:31 PM
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.
Reposted by ME/CFS research
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.
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.
September 28, 2025 at 8:01 AM
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.
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.