Kate Barnes

🚨 Hot off the press: my new paper that moves this field forward 🚀 and changes the narrative on what #POTS, #MECFS and #LongCOVID are... Neuroimmune Disorders! 🧠 The brain and the autonomic nervous system are involved in the immune system regulation. 🧠 There is evidence of autoimmunity, immune dysregulation, cerebral hypoperfusion, neuroinflammation and other mechanisms in all three disorders. 🧠 #Neuroimmunology is a field that should embrace these disorders: #MultipleSclerosis, the staple of neuroimmunology, used to be called hysterical paralysis before CT and MRI were invented. We're at the same crossroads with these disorders. ❌ These disorders are not "mysterious", "anxiety", "deconditioning," "functional neurologic" etc. etc. ‼️ Classifying these disorders as neuroimmune and including them as part of neuroimmunology training is critical. 🛌 #PatientCare and lives of millions of people living with these disabling conditions are at stake! Thanks to my esteemed colleagues and co-authors, Dr. @TaylorDoherty8, immunologist from UC San Diego and Dr. Lawrence Steinman, neuroimmunologist from @StanfordMed, for their support! Read open-access paper here: 👇 dovepress.com/postural-ortho…

A few months ago I was asked by a journal to review a case report on #FND disguised as angioedema. I explained to the authors that angioedema is NEVER FND and that they should learn about allergies and mast cell activation syndrome (MCAS). The patient was so sick, they ended up in the ICU with angioedema and compromised airway. Today I received a notification from the journal that the paper was withdrawn. Good! I suggested that the authors rewrite the case as a complex presentation of MCAS, not FND. A disclaimer: I diagnose FND when the patient has FND and don't diagnose it when they don't. #POTS, #MCAS, #EDS, #LongCOVID are not FND. frontiersin.org/journals/neuro…

Join Dysautonomia International on December 10th from 7:00-8:00PM Eastern for a free webinar with Dr. Amanda Miller to discuss her new research findings on using the Lumia device to track blood flow to the head in #dysautonomia. Register here: bit.ly/DysWebinar_Dec…

📢New Research Identifies Potential Biomarkers for Diagnosing Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD)! 🩸A recent study funded by The Ehlers-Danlos Society, and published in the American Journal of Medical Genetics, has identified potential blood-based biomarkers that could help diagnose hEDS and HSD. ❗This discovery is significant because diagnosing hEDS and HSD has been challenging due to the lack of established laboratory tests and molecular markers. What was the study, and what did it find❓ 🔬In this study, researchers examined blood samples from 466 adults, including 94 diagnosed with hEDS and 80 with HSD. 1. The study revealed the presence of a specific 52 kDa fragment of fibronectin in the blood of every individual with hEDS and HSD. This fragment was notably absent in healthy controls, individuals with other types of EDS, and those with various kinds of arthritis. 2. The consistent presence of the 52 kDa fibronectin fragment in individuals with hEDS and HSD suggests a possible common underlying pathophysiology, thus questioning the differentiation between these conditions. 3. Additionally, a fragment of collagen I was found in all individuals with hEDS and HSD, although this fragment was also present in other conditions. What could this study mean❓ The identification of these fragments could lead to the development of the first blood test for hEDS and HSD, providing a more reliable diagnostic tool for healthcare providers, and reducing the time to diagnosis, which currently averages around 12 years. What are the next steps❓ The study's findings are a significant step forward, but the authors emphasize that before this test is ready for diagnostic use, other investigators must confirm the results in additional cohorts of hEDS, HSD, and controls. The Ehlers-Danlos Society is sponsoring further confirmatory work. Currently, no diagnostic lab offers this test, but if validated, it could become an important tool in diagnosis and treatment trials and provide new insights into the underlying causes of hEDS and HSD. Of course, we will keep you up to date with all developments! Find an FAQ and further information, including a link to the research paper here: ehlers-danlos.com/new-research-i… #hEDS #HypermobileEDS #HSD #hypermobility #hypermobilityspectrumdisorder #EhlersDanlossyndrome #medtwitter #meded

The #DysConf2024 lecture recordings are now available! You can register to view 25 recorded sessions from the leading dysautonomia experts for $25 at DysConf.org.

‘.. people are often struggling to function and ‘keep going’ most often in flux and dependant on many factors. This complex picture keeps people gauging what to do, when and how to do it whenever a headache presents, often learning from trial and error.’@NatMigraineCtr So true!

Therapeutic relationships are key ..suggestions cause beliefs which affect outcomes ..discover how to avoid words that hurt & find words that help. Learn skills to calm your patients & yourself #CPD #MedEd #MedTwitter @barnes_johnson @OneLongPlait @katejchartres @GNielsen_Physio

New research finds that COVID infects & significantly damages sensory and autonomic neurons before the virus infects the blood. Let's discuss... 🧵👇

He just wanted to help his mother. ❤️ 😂

Exciting new @BSMSMedSchool brain-body research. Role of #proprioception and #hypermobility in #emotions in #neurodivergence published by @royalsociety. News item here: tinyurl.com/mpw6ax2s. Full paper: tinyurl.com/yf32tpyh Thanks @LisaQuadt @DrSFink and @CritchleyHugo and to @sedsconnective for graphic.

Following our lively discussion on #stress and mind-body connection when it comes to #POTS or #LongCovid, here is my take on stress and some pointers to other physicians dealing with complex patients: #MedTwitter #NeuroTwitter ✔️ Stress is an important trigger for any chronic illness exacerbation. ✔️ Stress needs to be managed and reduced. ✔️ But living with a chronic illness that has no effective therapies is HIGHLY STRESSFUL ✔️ How do you reconcile this? 1⃣ Stop telling patients that their illness is CAUSED BY STRESS - most diseases are not CAUSED by stress. 2⃣ First, provide symptomatic control of physical symptoms - not a referral to a psychologist. 3⃣ LISTEN TO YOUR PATIENTS. Don't inject your own opinions and judgement. Most patients will tell you themselves if they are stressed or not. If they say they are not stressed, then don't push your narrative. They know better than their doctor if they're stressed or not. 4⃣ If there is comorbid anxiety, depression, PTSD, OCD and FND, then please by all means address that, but DO NOT use these comorbidities as an explanation of the chronic illness (e.g. your patient's 24-hr average heart rate of 100 bpm is not from anxiety, it's inappropriate sinus tachycardia so treat that!) 5⃣ If you're stuck with a complex patient, the best thing you can do for them is refer them out. It's OK to ask for help from your colleagues: none of us know everything. 6⃣ If all you have to offer to your patient with #POTS or #LongCovid is an antidepressant or psychotherapy, you're doing it wrong. Read this guidance statement to learn what to do and how to do it. onlinelibrary.wiley.com/doi/10.1002/pm…

Hypermobile Ehlers-Danlos syndrome (hEDS) is a connective tissue disorder whose genetic cause has been difficult to identify. Researchers at the Norris Lab conducted a study looking for genetic links to hEDS by sequencing the DNA of families and individuals with hEDS. They discovered a specific change (variant) in the KLK15 gene that was associated with hEDS in two families. The KLK15 gene provides instructions for making a protein called kallikrein-15. To test what happens when this specific KLK15 genetic variant is present, the team created mice with an equivalent KLK15 variant. Six mice were studied and most had similar connective tissue problems to those seen in hEDS patients, such as weaker tendons and heart valve issues. It suggests that this KLK15 variant could play a role in causing hEDS in some people. A further analysis of 197 hEDS patients also showed that 65 (one third) had at least one kallikrein gene variant from within the whole family of kallikrein genes. This raises the possibility that other kallikrein gene variants may also be involved, but further work needs to be done to explore this. The findings highlight the importance of ongoing genetic research in understanding and diagnosing hEDS, which can lead to better health outcomes for patients. Further studies on kallikrein genes could reveal more about how they contribute to hEDS and related health issues, improving diagnosis and treatment. The KLK genes are not available on EDS genetic testing panels. It is too soon to recommend this because further studies are needed to replicate the findings, including further research in the HEDGE study looking at 1,000 people with hEDS and studies of the other KLK genes. hEDS remains a clinical diagnosis at this time.  The Norris Lab preprint can be read here:  researchsquare.com/article/rs-454… Further information on genetics and inheritance can be found here: ehlers-danlos.com/genetics-and-i…

My paper on #POTS as a CNS disorder explores how neuroinflammation at the dorsal medulla may be one of the key mechanisms in POTS. link.springer.com/article/10.100…

Today is a huge win for our field: #POTS, #MCAS and #MECFS are listed as pathophysiologic mechanisms of #LongCovid in the @theNASEM report on Long Covid definition. Many people and organizations worked tirelessly to make this happen, not only since the pandemic, but for decades before it, in order to legitimize these disorders, which have been largely neglected by the medical establishment. The silver lining of #Covid #pandemic is that it's finally acknowledged - through years of hard work by patients, physicians, researchers and numerous non-profit organizations - that these conditions are serious, complex, disabling and multi-systemic and require investment of resources to come up with effective therapies for many millions of people who have been disabled for decades. #MedTwitter @Dysautonomia @DINET @POTSActivist @DysSupport

EXCITING NEWS! Researchers at Medical University of South Carolina have identified kallikrein genetic variants in about 1/3 of individuals with hypermobile Ehlers-Danlos syndrome. A thread... 🧵👇

What should we do to influence large groups of people to change their behaviour? The most comprehensive synthesis of studies on behaviour change ever undertaken has been published & offers some clear steers: 1) For behaviour change at an individual level: - giving accurate information or trying to change beliefs is less effective - providing social support, tapping into individuals’ behavioural skills/habits & removing practical obstacles to behaviour is more effective 2) For behaviour change at a social/structural level: - interventions seeking to increase trustworthiness or targeting knowledge, general attitudes, beliefs, or mandates or other administrative/legal sanctions have negligible effect - access to resources that facilitate behaviour change & social support have the greatest impact asc.upenn.edu/news-events/ne…. Via @AnnenbergPenn Karen Lord

Dysautonomia, also called autonomic dysfunction, is a group of disorders that affect the autonomic nervous system. Many people with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) also have a type of dysautonomia. There are different types of dysautonomia with different symptoms. People with EDS and HSD most commonly have a form of orthostatic intolerance. “Orthostasis” means to stand upright, so orthostatic intolerance refers to symptoms that occur due to standing up or being upright. The two most common types of orthostatic intolerance are: 1️⃣ Orthostatic hypotension (OH) — low blood pressure on being upright. ⁠ 2️⃣ Postural orthostatic tachycardia syndrome (POTS) — an abnormal increase in heart rate when standing without a drop in blood pressure. Symptoms of dysautonomia include: ⁠ ● Tachycardia (fast heart rate)⁠ ⁠● Palpitations (feeling the heart racing or pounding) ● Hypotension (low blood pressure) ● Lightheadedness ● Presyncope (a sense of being about to faint) ● Syncope (fainting) ● ⁠Blurred vision ⁠😶‍🌫️Brain fog (problems with concentration and memory) ● Headaches ⁠● Chest pain ⁠ ⁠● Shakiness⁠ ⁠💤Chronic fatigue ⁠● Exercise intolerance and feeling worse after exercise⁠ ● Swelling and/or discoloration of the legs after standing for short periods of time ● Cold, discolored hands and feet⁠ ⁠● Temperature dysregulation⁠ 🥵 Sweating ● Sleep disturbance⁠ ● Gastrointestinal issues ● Nausea 🚽Bladder dysfunction Learn more about diagnosis and management here: ehlers-danlos.com/dysautonomia/ #Dysautonomia #EhlersDanlosSyndrome #Hypermobility #HypermobilitySpectrumDisorder #POTS #meded #medtwitter

A wonderful meeting with great colleagues. If you want to join our GPwER in Headache group, sign up to be a BASH member on our new website. bash.org.uk/become-a-membe… #migraine #headache

Thank you to the fantastic Dr Phil Holland for hosting the BASH GP group today 🩺 We started the day with an excellent talk from Phil on advances in migraine biology 🧠 & were treated to a fascinating tour of the lab 🔬Thank you to the team @WolfsonSPaRC for showing us around!

'Are You Choking? Throat Problems and Care in #EhlersDanlosSyndrome and #Hypermobility' with Professor Martin Birchall - Now available to watch on YouTube: youtu.be/da0r6HZ7qHs?si… #WorldVoiceDay ⁠