9) Link to the (open-access) paper:
Barr et al. 2026. Testing a Personalised Dysautonomia Management Protocol in Patients with Orthostatic Intolerance and a Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or Long COVID.
8 ) This pilot study was funded by the ME Association.
To evaluate these OI management programs in the future, it would be useful to have a randomized trial comparing different approaches with more objective outcomes.
7) Also notable: patients did multiple standing tests during the program, and some had variable results: sometimes meeting POTS or OH criteria while other times they don't. There seems to be quite some variability in these measurements.
6) The paper states: "When recommending conservative interventions, such as those in this program, clinicians should set realistic expectations for patients and recognise that these interventions can be burdensome."
5) The authors caution: "the magnitude of change was limited, and statistical significance might not necessarily relate to a clinically significant improvement in symptoms."
There was also no control group and lots of patients dropped out, so the results are not that convincing
4) The main results are shown in table 4, shared below.
The heart rate on standing decreased with 4.88 beats per minute (from 33.81 to 28.93). There was also an improvement on the COMPASS-31 questionnaire which asks about orthostatic intolerance symptoms.
3) So the results they report are only for the 16/22 patients who stayed in the program. It consisted of:
- increasing daily fluid intake to 3 litres per day
- increasing salt intake to 10g per day
- pacing to avoid crashes
- calf activation movements to avoid blood pooling
2) The authors included 22 ME/CFS and Long Covid patients who had an increased heart rate or hypotension during a standing test.
A big limitation is that 5/22 patients dropped out and 1 extra patient was withdrawn due to a severe crash following surgery.
1) Researchers from Leeds University tested a "Personalised Dysautonomia Management Protocol" involving 3 liters of daily fluid intake, 10 g salt, pacing and calf exercises.
There were some improvements in OI symptoms, but the authors caution that these were quite limited.
Thank you so much to Hope4MEFibroNI for hosting this event in Newry last month. Talks now on YouTube: www.youtube.com/watch?v=KHxz...
www.youtube.com/@hope4mefibr... #MEcfs @decodemestudy.bsky.social
4) Cheston's talk will take place between 12-13 PM. The event is free and a Zoom link will be circulated closer to the event.
More info:
www.durham.ac.uk/res...
3) In Action for ME’s 2025 Big Survey, which gathered data from over 5000 people living with ME and Long Covid, more than half said they had been disbelieved by an NHS healthcare professional. One in three had been made to feel that their ME was their own fault.
2) Cheston writes: "Drawing on preliminary analysis of the Big Survey data, alongside semi-structured interviews conducted during my PhD, I will interrogate this scandal [...] and demonstrate how it constitutes a compelling case study of affective injustice in healthcare."
1) On 11 May, Katharine Cheston will discusses Action for ME's 2025 Big Survey, the scandal around the treatment of people with ME, and its wider implications in terms of affective injustice in healthcare.
Event organised at Durham University.
9) Link to the paper:
Steinkirchner et al. 2026. Perioperative outcomes in patients with myalgic encephalomyelitis/chronic fatigue syndrome undergoing general anesthesia: a retrospective matched-pair study.
8 ) The main limitation is that this was a small, retrospective analysis: the authors used ICD-10 codes to identify ME/CFS patients in their records between 2015 and 2026. They were matched with controls sex and surgical procedure (but not for BMI, age, year of procedure etc).
7) Other outcomes, including non-opioid rescue analgesia, oxygen supplementation, postoperative nausea and vomiting, and length of stay in the care unit, did not differ significantly between groups.
6) There was a notable difference in pain scores after the procedure (a mean score of 5/10 in ME/CFS compared to 1/10 in controls). ME/CFS patients more often needed opioid rescue analgesia (80% versus 33% in controls).
5) The paper states: "No severe adverse events or escalation of therapy were observed. Vasopressor use, fluid administration, and other hemodynamic parameters were comparable between groups, and no episodes of clinically significant hypotension occurred."
4) The lowest recorded heart rate and systolic blood pressure were lower in ME/CFS patients compared to controls but "these differences did not translate into clinically relevant hemodynamic instability."
3) This small study did not find this to be the case. It concluded that "general anesthesia appears hemodynamically well tolerated in individuals with ME/CFS."
2) The rationale for this study is that ME/CFS patients might respond worse to anesthetic agents because they induce vasodilation and reduce the heart rate. Given the orthostatic intolerance and POTS in ME/CFS patients, there might be a higher risk of adverse events.
1) 🇩🇪 The university hospital of Regensburg looked at the effect of general analgesia in 15 ME/CFS patients and matched controls.
No severe hypotension or perioperative adverse events were found although ME/CFS patients had a higher increase in pain afterwards.
Think that's one of the most likely explanations.
7) Link to the paper:
Lim et al. Photobiomodulation for cognitive dysfunction (Brain Fog) in post-COVID-19 condition: a randomized double-blind sham-controlled pilot trial.
6) So overall no convincing evidence of effectiveness.
There was also a potential conflict of interest as all authors received compensation from Vielight (the company that makes the device) either as employees or consultants/advisors.
5) A subgroup analysis showed that the effect was larger in younger patients (<45 years).
On secondary outcome such as fatigue or quality of life there were no major group differences, with the sham group often performing a bit better than the intervention group.
4) The primary outcome was a composite change in cognitive performance tests after 8 weeks. The intervention group did better but the difference was small (cohen d = 0.28) and not statistically significant (p = 0.088).
3) The authors think this near-infrared light stimulates neuroplasticity and strengthens synaptic connectivity.
The control group received a sham device that looked the same but switched off after 3 seconds (wonder if patients could somehow tell the difference).
2) The treatment is officially called 'photobiomodulation'. It consists of a non-invasive device that delivers near-infrared light (810 nm at 40 Hz) up the nose into the brain.
The intervention group received 20 minutes of this, 6 days per week.