@wamesmecfs.bsky.social

Dr Michael Stingl is a private neuro in Vienna, Austria. He provides care for patients with ME/CFS, supports epidemiological ME/CFS research projects & is one of co-authors of 2024 D-A-CH (Germany, Austria & Switzerland) ME/CFS consensus statement on ME/CFS [3 mins]+Transcript tinyurl.com/y82zaunm

A neurologist's guide to ME/CFS diagnosis | Dr. Michael Stingl | Int. ME/CFS Conference 2025

Dr. Michael Stingl is a neurologist working as a private doctor from his medical practice in Vienna, Austria. His fields of clinical expertise include multiple sclerosis, pain therapy and pre- and post-stroke care, as well as neurorehabilitation and telemedicine. One of Dr Stingl's main fields of expertise is the care for patients with ME/CFS. Apart from his regular medical practice, he has also supported the implementation of both basic and epidemiological ME/CFS research projects conducted by the Medical University in Vienna. Aside from other publications, Dr Stingl is one of the co-authors of the interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement concerning the diagnostic and treatment of ME/CFS, published in 2024. In the video, he answers the following questions: 1. Why is Post-Exertional Malaise so central to understanding ME/CFS from a neurological perspective? 2. What is one key message you would like to give other doctors when they see patients with suspected ME/CFS or Long COVID? 3. What methods exist to detect Post-Exertional Malaise? 4. What advances in neurological research on ME/CFS are you most hoping for in the coming years? 🔗 More Details about Dr. (MD) Michael Stingl: https://events.mecfs-research.org/de/events/conference_2025/interviews 🔔 Subscribe to our channel so you won’t miss any updates! Other interesting links: 👉Report on the societal costs of ME/CFS and Long COVID in Germany: https://t.ly/Co70F 👉Official Website of the International ME/CFS Conference 2026: https://t.ly/2Crcm 👉ME/CFS Research Register: https://t.ly/-19pp

tinyurl.com

Cort Johnson explores a German study on Long COVID brain using an MRSI technique that can determine how much actual energy is available to brain. The cingulate cortex seems to be hub of energy problems in brain. Cort discusses related research & possible future treatments. tinyurl.com/5bjuanxx

Long COVID Study Finds Major Energy Deficits in the Brain - Health Rising

A long COVID study examining, for the first time, energy levels in the brain, found them to be depleted in a large region called the cingulate cortex.

tinyurl.com

A concise guide to the Biopsychosocial Model and how it began as a common-sense approach to one that was weaponised by a psychosomatic interpretation and used against medically unexplained symptoms (MUS), such as ME/CFS, FM etc. tinyurl.com/3uthnf3n

101: 03. The Biopsychosocial Model

To clearly name the problem: The term is accepted in medicine as a common-sense position that on the surface makes a great deal of sense. Yet, there is often a hidden psychosomatic interpretation that...

tinyurl.com

The Health Minister has answered Darren Millar MS’s question on how Wales will support biomedical ME research. In short: no dedicated funding, no strategy, and no targeted support — only general UK/Wales research schemes that ME researchers may apply to. tinyurl.com/3hpvh4u8

Health Minister answers a question about ME biomedical research and Wales - WAMES

The Minister says: ‘I recognise that research is a fundamental component of high-quality healthcare’ Darren Millar MS tabled a written question to the Cabinet Minister for Health and Care, Mabon...

tinyurl.com

Willecke tells the story of how an 'ME good' moment can quickly deteriorate into a longer 'ME bad' period of time. She still tried to enjoy the time she was not in bed and housebound, and took photos to remind her of a joyful time. tinyurl.com/33sh7ykh

Hip, happy & kleurrijk

Ik zag HET vest op Marktplaats: een ‘granny square’-vest. Dit vest is voor mij hét symbool van vrijheid; heerlijke zonnige dagen, kampvuur, zingen met de gitaar en hip, happy & kleurrijk elke d…

tinyurl.com

Dr Katie Woolf gives an overview of sexual health & relp cx's arising from Long COVID, ME/CFS & other infection-associated chronic illnesses. She provides practical ways to screen, assess & treat these issues along with resources to learn more [58mins]+Transcript+Chapters tinyurl.com/yjw7whr8

Sex, Intimacy, and Pelvic Health - July 2026

Long COVID and Post-Infectious Syndromes ECHO A Practical Approach to Complex Long COVID & ME/CFS Patient Cases Bateman Horne Center and the University of Utah Health Project ECHO teams join forces once again to provide a case-based learning series illuminating strategies for assessment and management of Long COVID (PASC), ME/CFS, and related comorbid conditions. Patient cases are shared in this session for educational purposes. In some instances, the information does not relate to an individual and instead represents a compilation of disease presentation. In cases involving individual patient information, the patients have authorized the discussion of their case in this setting. This ECHO session focused on sexual health and chronic illness. In this session, Katie Woolf, doctor of physical therapy and pelvic floor therapy expert, provides an overview of sexual health and relationship complications arising from Long COVID, ME/CFS and other infection-associated chronic illnesses. She provides practical ways to screen, assess, and treat these issues along with resources to learn more. Key topics include: Pelvic Floor Anatomy Pelvic Floor Therapy Sexual Arousal Chronic Illness Relationships Treatments Skin & Mucosal Tissue Time Stamps: 0:00 Housekeeping 1:23 Introduction 2:26 Pelvic Floor Anatomy 5:06 Pelvic Floor Therapy 6:59 Phases of Sexual Arousal 13:50 Chronic Illness 17:14 Relationships & Roles 19:27 Skin & Mucosal Tissue 24:30 Screening & Assessment 30:14 Interventions 35:25 Resources 37:27 Panel Discussion and Q&A Note to community members: We advise viewers to always speak with their medical care team before making any adjustments or changes to their current care regimen. Bateman Horne Center’s involvement in this program is made possible with the additional support of the Open Medicine Foundation. 📘 Download the Clinical Care Guide: https://bit.ly/4jScKFu 🖥️ View the Slide Deck: https://bit.ly/4vXMjU6

tinyurl.com

Dr Franziska Sotzny discusses the role of G protein-coupled receptor (GPCR) antibodies in ME/CFS and Long COVID. She focused on the molecular mimicry of the Epstein-Barr virus (EBV) and SARS-CoV-2 which can increase the likelihood of autoimmune reactions. [19 mins] +Transcript tinyurl.com/42xm6285

Franziska Sotzny | International ME/CFS Conference 2025: Autoantibodies mimicking EBV sequences

Dr Franziska Sotzny discussed the role of G protein-coupled receptor (GPCR) antibodies in ME/CFS and Long COVID. She focused on the molecular mimicry of the Epstein-Barr virus (EBV) and SARS-CoV-2, which describes similar molecular properties of the virus with the body's own structures. Since SARS-CoV-2 infections can lead to EBV reactivation, this mimicry also increases the likelihood that human antigens become the target of antibodies. This can increase the likelihood of autoimmune reactions. 🔗 More Details: https://events.mecfs-research.org/en/events/conference_2025/videos/franziska-sotzny-autoantibodies-mimicking-ebv-sequences 🔔 Subscribe to our channel so you won’t miss any updates or presentations from the International ME/CFS Conference 2025! Other interesting links: 👉 Report on the societal costs of ME/CFS and Long COVID in Germany: https://mecfs-research.org/costreport-long-covid-and-mecfs/ 👉 Official Website of the International ME/CFS Conference 2025: https://events.mecfs-research.org/en/events/conference_2025 👉 ME/CFS Research Register: https://mrr.mecfs-research.org/

tinyurl.com

Share & learn is a series of online activities for carers. August activities: how art can help women care for loved ones with serious mental illness (11th); Money confidence (14th); Zumba (21st); Art for wellbeing (26th) tinyurl.com/5n7uwvke

Bild

Forward‑ME has published a new briefing paper for DHSC and NHS England on assessing very severe ME/CFS — also useful for patients and carers when dealing with health services. It’s a living document, so feedback is welcome. tinyurl.com/22v5t3hu

MERUK highlights a study that provides useful evidence that immune and gut symptoms may be organised differently in women and men with ME/CFS, and may also vary by menopause status. However, the researchers say their findings should be interpreted with caution tinyurl.com/yc3hpxtn

Bild

In early 2024, Mabon ap Gwynfor MS pressed Labour Gov on need for an ME strategy & delivery plan. Given his earlier calls for action, now that he is Health Minister, we look forward to seeing him follow up with a clear, evidence‑based plan for improving ME services across Wales tinyurl.com/2ed3yfbf

Senedd Q&A on ME/CFS, 30 Jan 2024 - WAMES

Delivery plan and strategy for ME? Back in 2024, on 30th January 2024 Mabon ap Gwynfor MS tabled a written question in the Senedd: What action has the Government taken...

tinyurl.com

Dr Jaime Tartar gives insights into the biological differences between different kinds of stress and suggests 'science-backed tools' to manage it. [33 mins] +Transcript +Chapters tinyurl.com/2x6kx26k

What Stress Is Really Doing to Your Body

Donate to the Institute: https://givenow.nova.edu/donations-for-me-cfs-research-2026 In today's episode, Haylie Pomroy sits down with Dr. Jaime Tartar, Professor and Chair of the Department of Psychology and Neuroscience at Nova Southeastern University, to reframe everything you think you know about stress and give you the science-backed tools to actually manage it. Dr. Tartar explains the biological difference between acute stress, chronic stress, and eustress, why worry is a physiological state that releases cortisol, and how perception is the single most powerful variable in whether stress helps or harms you. She walks through the neuroscience of cognitive reframing, the measurable brain benefits of gratitude, and the two-phase sleep cycle that determines how well you process emotions and recover from the day before. She also covers screen time, electronic boundaries, the physiological impact of nature and movement on the stress response, and practical strategies for helping children navigate catastrophic thinking. For anyone navigating chronic illness, autoimmune conditions, long COVID, or ME/CFS, watch this episode of the Hope and Help For Fatigue and Chronic Illness podcast. Key points: 00:01 Introduction 02:24 Why stress is not inherently bad 04:11 Acute stress versus chronic stress 05:51 How your body prepares to survive the next five minutes 07:02 Why worry is a biological state 08:01 When worry becomes chronic 10:49 The power of mindset and cognitive reframing 12:50 Building a stress management toolbox 13:43 Practicing gratitude and why it changes your brain chemistry 14:14 How naming your emotions gives you more control 16:42 What happens to your body and brain overnight 17:29 Deep sleep versus REM sleep 18:53 Why disrupted REM sleep impairs emotional regulation 20:52 Why your phone needs to leave your bedroom 23:09 How to set an electronic boundary that actually works 27:33 How to help young adults navigate catastrophic thinking 28:55 Nature has a measurable physiological impact on stress 30:31 Why movement is therapeutic for the brain Jaime Tartar is a Professor of Neuroscience at Nova Southeastern University. She earned her Ph.D. in the Behavioral Neuroscience program at the University of Florida, where the focus of her research involved discovering long-term changes that occur in neurobiological pathways involved in stress responses and developing animal models of stress. Dr. Tartar has also completed Postdoctoral Training at Harvard Medical School, where she studied the neurological consequences of sleep perturbations using in vitro electrophysiological recording techniques. She also received training in Sleep Medicine at Harvard Medical School. She was also awarded an Honorary Doctorate at Nova Southeastern University. Dr. Tartar is the co-founder and CEO of The Society for Sports Neuroscience, an academic organization for the field of Sports Neuroscience. Dr. Tartar's current research is focused on stress, sleep, and athletic performance in humans. LinkedIn: https://www.linkedin.com/in/jaime-tartar-1545889/ Haylie Pomroy, Founder and CEO of The Haylie Pomroy Group, is a leading health strategist specializing in metabolism, weight loss, and integrative wellness. With over 25 years of experience, she has worked with top medical institutions and high-profile clients, developing targeted programs and supplements rooted in the "Food is Medicine" philosophy. Inspired by her own autoimmune journey, she combines expertise in nutrition, biochemistry, and patient advocacy to help others reclaim their health. She is a New York Times bestselling author of The Fast Metabolism Diet. Website: https://hayliepomroy.com Instagram: https://www.instagram.com/hayliepomroy Facebook: https://www.facebook.com/hayliepomroy YouTube: https://www.youtube.com/@hayliepomroy/videos LinkedIn: https://www.linkedin.com/in/hayliepomroy/ X: https://x.com/hayliepomroy Thank you for tuning in to the Hope and Help For Fatigue and Chronic Illness Podcast. Sign up today for our newsletter. 👉 https://nova.us4.list-manage.com/subscribe?u=419072c88a85f355f15ab1257&id=5e03a4de7d Enjoy our show? Please leave us a 5-star review so we can bring hope and help to others This podcast is brought to you by the Institute for Neuro-Immune Medicine. Learn more about us here. Website: https://www.nova.edu/nim/ Facebook: https://www.facebook.com/InstituteForNeuroImmuneMedicine Instagram: https://www.instagram.com/NSU_INIM/ Twitter: https://www.twitter.com/NSU_INIM TikTok: https://www.tiktok.com/@nsu_inim Your support goes a long way toward the advancement of clinical research. Donate here. 👉 https://www.nova.edu/nim/donations.html #StressManagement #ChronicStress #SleepHealth

tinyurl.com

This week WAMES met Cabinet Minister for Health & Care, Mabon ap Gwynfor, with reps from AfME, SMEDC & Long Covid Support. Each organisation presented 1 of 4 proposals aimed at addressing serious & ongoing gaps in care for people living with ME & Long Covid in Wales tinyurl.com/4rjxa958

Meeting with Health Minister - ME & LC services in Wales - WAMES

Evidence‑based proposals for change On Tuesday 28 July, WAMES met with the Cabinet Minister for Health and Care, Mabon ap Gwynfor MS, alongside representatives from Action for ME, SMEDC and...

tinyurl.com

In written Senedd answers, Health Minister presents an over‑optimistic view of current ME services, that doesn’t reflect reality for many ppl in Wales. Tho we welcome his recog of ongoing chls & his commitment to work with ME comm to prov “appropriate, safe & compassionate care” tinyurl.com/umkn8fbe

Health Minister answers questions about ME/CFS in the Senedd - WAMES

The Minister’s goal: ‘appropriate, safe, and compassionate care’ Darren Millar MS posed 3 written questions to the Cabinet Minister for Health and Care, Mabon ap Gwynfor MS, about ME/CFS healthcare...

tinyurl.com

Clinicians, researchers and patients discuss 'Defining and Measuring PEM vs “Crashes” in ME/CFS: Patient Experience, Triggers, and Research Tools' [1h22] +Transcript +Chapters tinyurl.com/mrpudvmu

Defining and Measuring PEM vs “Crashes” in ME/CFS: Patient Experience, Triggers, and Research Tools

Dr. Danielle Meadows (Open Medicine Foundation) co-hosts a live discussion with Renegade Research and ME/CFS researchers and clinicians on how patients and studies define and distinguish post-exertional symptom exacerbation/malaise (PESE/PEM/PENE) versus “crashes,” prompted by OMF’s CTN Lite survey prioritizing post-exertional symptom worsening for decentralized clinical trials. Panelists review research definitions (Canadian and International Consensus Criteria) and patient-reported uses of “crash,” including sudden, rapid shutdowns versus prolonged or more severe PEM, and discuss timing, phases, and baseline shifts. The group highlights diverse triggers (physical, cognitive, emotional, sensory, chemical/immune) and heterogeneity in symptoms, especially across severity levels. They explore research implications and measurement challenges, including pacing and rolling PEM, questionnaires and function scales (including individualized activities), wearables and device-use tracking, CPET and other provocation methods, caregiver-assisted sampling, and potential physiological markers such as lactate and metabolic changes. Panelists include: Todd Davenport Rob Phair Chris Armstrong Isabel Burnett Tess Falor 00:00 Welcome and Housekeeping 01:39 Panel Introductions 03:38 Why This Discussion Matters 06:40 Defining PEM and PESE 10:54 What Patients Mean by Crash 15:12 Time Course and Staging 24:10 Triggers Beyond Physical Exertion 39:00 Research Challenges and Measures 45:00 Cognitive PEM Triggers 47:11 Thresholds and Daily Stressors 48:49 Severity and Delay Effects 52:00 Personalized Function Scales 55:19 Pacing Masks PEM Data 58:35 Wearables and Symptom Diaries 01:04:01 Physiology During PEM 01:06:35 Lactate and Energy Pathways 01:18:05 Research Takeaways and Wrap-Up

tinyurl.com

MERUK highlights a research review of overlapping pain conditions which includes ME/CFS. Traditional care models that treat diseases in isolation are often inadequate. Instead, patients could see better outcomes when different medical specialties are brought together. tinyurl.com/n8us79w9

Bild

OMF’s StudyME project aims to link researchers with willing participants in ME research. Both ill and healthy people anywhere are invited to sign up. They will then send you email notifications whenever there are research opportunities that match your interests. tinyurl.com/4t35dwhd

Bild

David Tuller is heartened by preprint of study that is honest in acknowledging lack of meaningful benefits in German rehabilitation programme for ME/CFS. Team say there is an urgent need for "well-controlled clinical trials aimed at developing disease-modifying txs for ME/CFS” tinyurl.com/2teu4r8c

OMF introduces sleep spindles and their possible role in sleep. An OMF study with Ronald G. Tompkins is working to understand unrefreshing sleep in ME/CFS and Long COVID. Read more about their in-depth analysis of sleep. tinyurl.com/49d327kx

Sleep Disturbance in ME/CFS and Long COVID - Open Medicine Foundation

We intend to examine multiple sleep studies that have been conducted in the past two years and performed at the MGH Neurology Sleep Medicine Laboratory.

tinyurl.com