Communications Office
3 Apr 2025
Tackling Misinformation about Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders and Postural Tachycardia Syndrome – A shared statement from The Ehlers-Danlos Support UK, PoTS UK and The Hypermobility Syndromes Association (HMSA)
We've prepared the following statement with EDS UK and PoTS UK following recent media coverage of Dr Suzanne O'Sullivan's new book 'The Age of Diagnosis' which has caused some concern and dismay among some of our members and followers.
Further, we'd like to reassure those in our broader community with symptomatic hypermobility and/or neurodivergent traits that we'll continue to challenge the notion that acknowledging these symptoms and conditions is unhelpful. On the contrary it validates the lived experience of patients, recognising the very real symptoms they experience. Through this process patients can better understand their bodies, learn to self-manage their condition(s), and seek support from health care professionals as appropriate.
Denying an explanation for such problems prevents people from accessing the available support, understanding how to mitigate the impact on their physical and mental health, and instead leads to increased fear, anxiety and hopelessness. We'll continue to work with the medical community so that rather than dismissing these conditions, and the patients experiencing them, they can confidently diagnose and support patients to maintain and improve their health and wellbeing.
Joint statement begins
Tackling Misinformation about Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders and Postural Tachycardia Syndrome – A shared statement from The Ehlers-Danlos Support UK, PoTS UK and The Hypermobility Syndromes Association (HMSA)
We have recently reviewed the podcast and book from Dr Suzanne O'Sullivan about the culture of medical diagnosis. It has some concerning themes within it and a lack of understanding of complex chronic conditions like Ehlers Danlos Syndrome (EDS), Hypermobility Spectrum Disorders (HSD) and Postural Tachycardia Syndrome (PoTS). We feel it has the potential to cause real harm as it does not address diagnosis for complex conditions like EDS, HSD or PoTS accurately.
Our communities, experts and organisations have continually provided evidence to eradicate misinformation about EDS, HSD and PoTS. The evidence base also clearly indicates that receiving appropriate care and obtaining a clinical diagnosis is essential to patients physical and mental health and well-being:
· Misinformation about EDS, HSD and PoTS sadly fuels a lack of understanding from the public, clinicians and policy makers. Without recognition and a diagnosis, we see that patients can miss early opportunities to learn about and manage their condition.
· Unwittingly take steps that causes their condition to deteriorate.
· Lose faith in themselves and their bodies.
· Be misunderstood and can become isolated from others.
We agree that patients need someone to take the time to listen to them and ensure that they do not build an unhelpful illness identity or experience a sense of fear around a diagnosis. However, the idea that services and a diagnosis are damaging is simply not supported by the evidence (discussed below). In fact, there is a wealth of studies that indicate how diagnosis and understanding improves mental health, quality of life and symptom management for people with PoTS, EDS and HSD.
While it is true that in some cases excessive numbers of referrals and investigations can be unhelpful to patients, especially when concerns are not addressed, the solution is in fact to have clearer treatment pathways and informed services to offer the right amount of support and onward referrals. The evidence states, that it is of primary importance to not ignore these conditions, but identify early and use clear diagnosis to guide appropriate referral and care.
Currently the average wait for diagnosis for the most common type of EDS (hypermobile Ehlers Danlos syndrome, hEDS) or HSD (hypermobility spectrum disorders) is up to 20 years. This is due to a variety of factors including lack of awareness and knowledge, lack of agreed pathways and guidelines for hEDS and HSD, and the lack of a genetic marker meaning diagnosis is reliant on clinician knowledge. The hEDS START report by Berg and Dockrill 2024 stated that 87% of the Scottish survey population reported chronic pain and said that any delay to diagnosis could compound and exacerbate this. In their review of the published evidence base on hEDS and HSD they quoted a study from Sweden that found an earlier diagnosis of EDS had a protective effect on later suicide attempts. Berg and Dockrill said that "Where people living with these conditions are left waiting decades to receive a diagnosis and consequently an appropriate management plan, it is common for their ability to self-manage to become impaired." In their report they also quoted Halverson et al 2023 and their finding that there was a 52% reduction in the number of clinicians participants accessed following a diagnosis of hEDS.
Additionally, we challenge the explanation of Postural Tachycardia Syndrome. The common misconception that Postural Tachycardia Syndrome is due to a fall in blood pressure is wholly inaccurate. While many people with PoTS do experience haemodynamic and non-haemodynamic syncope (or fainting), fainting is not a diagnostic or intrinsic feature of PoTS. In fact, diagnosis depends on sustained tachycardia on standing which is not associated with a fall in blood pressure. PoTS is a form of autonomic dysfunction, which often involves other compromised functions such as temperature regulation and digestive issues. Understanding this is essential for building optimal services and treatment pathways.
PoTS frequently co-exists with EDS, HSD, and other hypermobility syndromes, and there is growing evidence that it is not in fact a case of multiple diagnoses. They can be all connected as one multisystemic disorder. Our charities are all campaigning to have more health professionals, policy makers and the public understand this.
Additionally, we would also vehemently dispute any accusation that it can ever be possible to know that a non-haemodynamic faint, or psychogenic pseudo seizure can be pinpointed on one cause such as ‘being overwhelmed by diagnoses’. Such statements simply cannot be supported with the current evidence-based understanding of this complex phenomenon, and we feel this is misleading in the extreme.
We strongly dispute the claim that 85% of PoTS patients go into spontaneous remission. Recent evidence shows that although most patients will improve if they access the correct treatment, the majority will continue to have ongoing symptoms.
It would be a travesty if appropriate referrals for diagnosis and swift intervention were limited based on attitudes and misleading narratives such as these.
If you are concerned by any written, podcast, or social media misinformation about EDS, HSD or PoTS, please visit our websites where you can rely on our evidence-based research and information.
https://www.ehlers-danlos.org/
https://www.hypermobility.org/
Sources of evidence
Kathryn Berg and Dervil Dockrell. 2024. Translating Research into Change: Reporting the Lived Experience of hEDS and HSD in Scotland. Edinburgh: University of Edinburgh. https://doi.org/10.2218/ED.9781912669837 (Pages 15-17)