The Lumia Device sits on your outer ear and measures changes in blood flow to the head. This short video on X/Twitter shows how it can show changes in blood flow for those with Orthostatic Intolerance when standing, sitting or lying down.
The Lumia #wearable tracks blood flow to head. Demo shows Lumia Flow Index (white) & Heart Rate (blue) changing w/ body position & #compression in a person with #pots. Lumia Flow index is a proxy for changes in #cbf with orthostatic changes. For #longcovid #pwme #dysautonomia pic.twitter.com/JZyi5lIGuL
— Lumia Health (@wearlumia) February 21, 2025
ME Hub is of course unable to endorse or advise regarding use of this product.
Released as version 1.0 today, a new and outstandingly comprehensive reference guide for both Doctors and Health Care Workers. The reference guide we needed 20 years ago! This certainly feels like an essential training reference:
“A Roadmap to Better Care:
Clinical Care Guide for ME/CFS, Long COVID &
Infection-Associated Chronic ConditionsDeveloped by the OMF-supported Medical Education Resource Center (MERC) at Bateman Horne Center, this resource offers a practical path forward—one grounded in clinical expertise, research, and the lived experience of patients”
A comprehensive overview of four VNS devices (though one doesn’t actually perform Vagus Nerve stimulation at all) by Health Scientific Institute.
These devices have become popular, but they can also be very expensive, once monthly subscriptions are considered.
People with ME and Long Covid should also take care to choose a device with a variable stimulation level, else stimulation given can cause unwanted side effects or unexpected increase of symptoms.
The latest video from Dr. Sanjay Gupta shows true compassion for those suffering from ME, Long Covid and POTS. More selected videos from Dr. Sanjay Gupta can be found here.
Dr. Sanjay Gupta explores mitochondrial dysfunction as a cause for unexplained long term fatigue, brain fog, post-exertional malaise and temperature dysregulation
Extracts from full Mayo Clinic Article Originally published in October 2023. Selected text and images only included below see full article link at end of page
Concise review for clinicians Volume 98, Issue 10, p1544-1551, October 2023: Stephanie L. Grach, MD, Jaime Seltzer, MS, Tony Y. Chon, MD, Ravindra Ganesh, MD, MBBS
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease
often preceded by infection. There has been increased interest in ME/CFS recently
because of its significant overlap with the post-COVID syndrome (long COVID or post-acute
sequelae of COVID), with several studies estimating that half of patients with post-COVID
syndrome fulfill ME/CFS criteria. Our concise review describes a generalist approach to
ME/CFS, including diagnosis, evaluation, and management strategies.
(c) 2023 THE AUTHORS. Published by Elsevier Inc on behalf of Mayo Foundation for Medical Education and Research. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/) n Mayo Clin Proc. 2023;98(10):1544-1551
Annie Aitken1; Abbey Sawyer; Akiko Iwasaki; Harlan M. Krumholz; Rory Preston; Harry Leeming; Jenna Tosto-Mancuso; Amy Proal; Michael A. Osborne; David Putrino
Version 1 posted 29 Nov, 2024
Background: Complex chronic conditions like Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome involve energy limitations and changes in heart rate variability (HRV) and resting heart rate (HR). Mobile health technologies now offer real-time, valid measurements of HRV and HR, advancing symptom monitoring and management. Using a high-density dataset from an observational longitudinal study, we aimed to describe, quantify, and predict within-person co-variations in daily biometric data and subsequent crash, fatigue, and brain fog symptom occurrences.
Methods: Leveraging data collected through a mobile health app (n=4,244), we developed predictive models using mixed-effects linear regression and logistic regression to explore how within-person fluctuations in biometrics (HR, HRV, and respiratory rate) predict dynamic change in symptomology (crash, fatigue, and brain fog). Predictive performance was assessed using 5-fold stratified cross-validation and compared to a 20% holdout set to evaluate model generalizability to new observations and individuals.
Results: Across all symptom domains, within-person changes in HRV and HR consistently emerged as key predictors of symptom change across all models, with higher HR and lower HRV conferring risk for crashes, fatigue, and brain fog. Moreover, 7-day biometric stability (or variable dispersion) was a robust predictor of symptom occurrence and severity. Models trained solely on biometric features achieved moderate predictive performance in the stratified cross-validation set; however, incorporating random effects to capture individual-specific variations and prior-day symptom reports substantially enhanced model accuracy, with AUC values reaching .91.
Discussion and Conclusion: This study is the first to use data-driven models to predict everyday symptom experiences in individuals with complex chronic illnesses based on biometric fluctuations. Findings demonstrate the potential utility of mobile health tools for real-time monitoring of symptoms and highlight the need for further research to refine these predictive models and integrate them into clinical decision-making processes.
Read the full preprint article here: https://www.researchsquare.com/article/rs-5423422/v1
Please share – A very important campaign was launched on the evening of 29th August 2025 to help provide legal support for targeting improvements in medical care, thereby benefiting everyone with ME or Long Covid induced illness.
“Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness”
Find history, campaign details information and endorsements available on on the Crowd Justice site via the following link: justice4me.uk
Update 31/08/2025 – On a public facing Facebook comment, where some were discussing the nature of the campaign and potential legal cases, in answer to a question raised by an ME patient, Sarah Boothby (one of the endorsers of the campaign and mother of Maeve Boothby O’Neill, who tragically died from ME in October 2021 aged only 27) shared her understanding of what she believes #JusticeForME is intending (my bold, for emphasis, below):
“It is a case against the government, for neglecting to deliver a specialist health service in its Final Delivery Plan for ME/cfs.
Without Consultant led NHS specialist services everyone with #ME in England is denied access to the disability rights other medical conditions are given as granted and, if/when they need hospital treatment, no provision is made for the specialist nursing care demanded by the nature of the illness (hypersensitivies to all sensory stimuli that increase with #PEM). This automatically triggers the worst PEM ever – adding years of the most horrible symptoms to an already horrible illness. The campaign is to stop this neglect.”
As of this evening (31/08/2025), the campaign has astonishingly already received over £5,000 in pledges of first target of £6,000 within 48 hours of launch, with 28 days still remaining.
Full details and donations via the link here, taking you to Crowd Justice: justice4me.uk
