Can you support our call for an All-Party Parliamentary Group (APPG) for Hypermobility & Neurodivergence ? BodyBrain 🙏2 minute form Please scan the QR code or use the LINK: forms.cloud.microsoft/e/8p0k… #Hypermobility #Neurodivergence

We are delighted that The Red Shoes 2: has been published 👣 doi.org/10.1145/3822301.3822… Rachel E.Hollands et al (2026) We know our members are understanding but lovely comments for them all the same 😀

Thanks @bhanlon15! This paper raises an issue I've been trying to shout from the rafters that we too often ignore: patients with orthostatic intolerance can have very different underlying physiological mechanisms, yet we continue to categorize them as one population. Not everyone with orthostatic intolerance has positional tachycardia. POTS is just one part of a much broader clinical picture. And that matters enormously when it comes to treatment. How many times have I heard a patient say, almost sheepishly, "Well, I don't have POTS, but I have something impacting my autonomic nervous system." Yes, you do. Just because your heart rate doesn't increase by 30–40 beats per minute when you stand doesn't mean you aren't experiencing orthostatic intolerance. Your symptoms deserve to be taken seriously, your physiology deserves to be investigated, and you deserve an accurate diagnosis that can guide the right treatment. SO do the patients who are positionally tachycardic. Across the spectrum of orthostatic intolerance, some patients experience positional tachycardia, others experience presyncope or significant symptoms without an elevated heart rate. Some experience episodes of tachycardia at other times, including during sleep. And many have overlapping abnormalities in autonomic and vascular function. These patterns may reflect different physiological mechanisms, and we need to understand what drives them. An elevated heart rate may be the body's way of compensating for inadequate circulation. Treating it can provide meaningful relief for patients who benefit, and that matters enormously. But it doesn't necessarily address the underlying dysfunction. Let's diagnose patients accurately rather than labeling everyone with orthostatic intolerance as having POTS. We need to understand the physiology driving each patient's symptoms so we can treat what's actually going wrong.

POTS I really hate the name POTS as diagnosis Why? Because it leads to massive under diagnosis for an already very common but little know about disorder POTS is a type of dysautonomia. It is named after the cardiovascular response to standing with symptoms

MCAS as a name is no better MCAS is defined as mast cell activation syndrome on the basis of consensus 1 or 2 criteria I personally use consensus 2 criteria. If it looks like a duck, walks like a duck and quacks like a duck, why do I need a DNA test to prove it is a duck?