Research and Publications
We make sure our members and supporters are always in the loop when it comes to key research. This page links to some of the most cutting edge publications and with the help of our patron (Dr Eccles) we are passionately research based in order to promote the best outcomes for our members.
Check back often, this is a rapidly developing field with ongoing projects and research opportunities around the world.
By donating, you are changing lives in our day to day practice, and our worldwide research.
‘Inside Health’ Neurodivergence and hypermobility Brain /Body connections with Dr Eccles and Jane Green MBE, MA Ed.
Bragee et al – Signs of Intercranial hypertension, hypermobility and craniovervical obstructions in patients with myalgic encephalomyelitis/chronic fatigue syndrome – Frontiers in Neurology (2021)
The pathophysiology of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is unknown. In this study, we test the hypothesis that hypermobility, signs of intracranial hypertension (IH), and craniocervical obstructions may be overrepresented in patients with ME/CFS and thereby explain many of the symptoms. Our study is a retrospective, cross-sectional study, performed at a specialist clinic for referred patients with severe ME/CFS as defined by the Canada Consensus Criteria.
Csecs J et al (2022) – Joint hypermobility neurodivergence to dysautonomia and pain (Frontiers - 2022)and here in the US National Library of Medicine.
Autism, attention deficit hyperactivity disorder (ADHD), and tic disorder (Tourette syndrome; TS) are neurodevelopmental conditions that frequently co-occur and impact psychological, social, and emotional processes. Increased likelihood of chronic physical symptoms, including fatigue and pain, are also recognized. The expression of joint hypermobility, reflecting a constitutional variant in connective tissue, predicts susceptibility to psychological symptoms alongside recognized physical symptoms. Here, we tested for increased prevalence of joint hypermobility, autonomic dysfunction, and musculoskeletal symptoms in 109 adults with neurodevelopmental condition diagnoses.
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Bragee et al – Signs of Intercranial hypertension, hypermobility and craniovervical obstructions in patients with myalgic encephalomyelitis/chronic fatigue syndrome – Frontiers in Neurology (2021)
The pathophysiology of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is unknown. In this study, we test the hypothesis that hypermobility, signs of intracranial hypertension (IH), and craniocervical obstructions may be overrepresented in patients with ME/CFS and thereby explain many of the symptoms. Our study is a retrospective, cross-sectional study, performed at a specialist clinic for referred patients with severe ME/CFS as defined by the Canada Consensus Criteria. The first 272 patients with ME/CFS were invited to participate, and 229 who provided prompt informed consent were included. Hypermobility was assessed using the Beighton Score.
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Willams G, Hart A - Improving communication between autistic and non-autistic individuals
Autistic people often experience difficulties with social communication. It is so common, in fact, that is it one of the central criteria for an autism diagnosis (see: DSM-5 criteria, APA, 2013). Social communication difficulties impact all areas of life and can contribute to things such as poor mental health outcomes and reduced opportunities for fulfilling social interactions as well as barriers to health and social care, education and employment.
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Casanova El, Baeza-Velasco C, Buchanan CB, Casanova MF – The relationship between autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders: Journal of Personalized Medicine (2020; 10(4): 260)
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Considerable interest has arisen concerning the relationship between hereditary connective tissue disorders such as the Ehlers-Danlos syndromes (EDS)/hypermobility spectrum disorders (HSD) and autism, both in terms of their comorbidity as well as co-occurrence within the same families. This paper reviews our current state of knowledge, as well as highlighting unanswered questions concerning this remarkable patient group, which we hope will attract further scientific interest in coming years.
To test the hypothesis that Joint hypermobility and autonomic dysfunction are over-expressed within neurodevelopmental disorders. Joint hypermobility is a widespread poorly recognized connective tissue condition with affected individuals overrepresented among panic and anxiety disorders, irritable bowel syndrome, fibromyalgia, and chronic fatigue. The relevance of hypermobility to neuropsychiatric disorders of developmental origin is currently unknown, despite anecdotal case reports and clinical suspicion of a link.
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Eccles Jessica A et al – Beyond Bones: The relevance of variants of connective tissue (hypermobility) to fibromyalgia, ME/CFS and controversies surrounding diagnostic classification – An observational study (MedRxiv – Feb 2020)
To understand the relevance of symptomatic hypermobility and related connective tissue variants to the expression of symptoms in Fibromyalgia and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The study further tested if specific subfactors within the diagnostic classification of hypermobility predict clinical presentations.
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Eccles JA, Scott HE, Davies KA, Bond R, David AS, Harrison NE and Critchley HD – Joint Hypermobility and its relevance to common mental illness in adolescents: A population-based longitudinal study (2021)
Depression and anxiety are common mood disorders that show higher prevalence in adults with joint hypermobility, a consequence of a constitutional variant of connective tissue structure. In adolescents, an association between mood disorder and hypermobility may enhance the potential understanding of risk factors for emotional disorder and provide opportunities for early intervention approaches.
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EDS UK – The Ehlers-Danlos syndromes (EDS) GP Toolkit (Ehlers-Danlos.org, 2021 (accessed 2020)
​The Ehlers-Danlos syndromes (EDS) are heritable connective tissue disorders affecting the quality of collagen in every part of the body. They were once considered to be very rare and only seen by rheumatologists. There are 13 types of Ehlers-Danlos syndrome, most of which are indeed rare. However, the hypermobile type of EDS (and associated hypermobility spectrum disorder) is thought to be common and this toolkit will focus primarily on this type, although many of the clinical signs and symptoms discussed can also appear across the other EDS types. The old diagnosis of Joint Hypermobility syndrome (JHS) is now considered part of the spectrum of Hypermobile EDS.
Jovin D – Disjointed; Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. Hidden stripes publications (2020)
Disjointed is for patients with hEDS/HSD and the physicians who treat them. hEDS/HSD is an underrecognized, complex, multisystemic disorder, with the silos of healthcare’s specialties often working against effective and efficient treatment. With 21 specialist & 6 resource chapters, Disjointed brings together physician, patient, and parent perspectives to support the goal of earlier and more complete intervention.
Goodreads
Green, J – We need to do more to help autistic neurodivergent children & young people (psychreg, Feb 2022)
left school early and at 16 had two basic qualifications, considered dim, and on return to England in secondary school I was absent a lot due to illness and or interest in education nor they in me. Previously I moved to 6 different primary/elementary schools due to my father’s job. I always felt I was different. Fast forward at 37, I divorced and became a single sole parent of two children. My eldest had severe medical issues after a difficult birth and both had extreme allergies. My eldest was diagnosed autistic, ADHD, and dyspraxic very young at around 3 years old.
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Green, J – Raising awareness of pupils with Ehlers-Danlos syndromes/hypermobility spectrum disorders (edpsy, July 2022)
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Increasingly Ehlers-Danlos syndromes (EDS) and the closely related Hypermobility Spectrum Disorders (HSD) are being diagnosed in some pupils but very little is known about the impact this has on the pupil, parents/carers and their attainment and attendance in school.
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Green, J – Understanding hypermobility disorders and syndromes in schools (Spotlight Online NASEN 2019)
Published and presented by NASEN, Jane Green, MA Ed. ex AHT and lead autism educationalist talks about symptomatic hypermobility issues, most common symptoms plus possible associated conditions/disorders, Autism and dyspaxia (DCD) and how these affect pupils in schools.
Green, J – Joint hypermobility links neurodivergence to dysautonomia and pain (Frontiers - 2022)
​Autism, attention deficit hyperactivity disorder (ADHD), and tic disorder (Tourette syndrome; TS) are neurodevelopmental conditions that frequently co-occur and impact psychological, social, and emotional processes. Increased likelihood of chronic physical symptoms, including fatigue and pain, are also recognized. The expression of joint hypermobility, reflecting a constitutional variant in connective tissue, predicts susceptibility to psychological symptoms alongside recognized physical symptoms. Here, we tested for increased prevalence of joint hypermobility, autonomic dysfunction, and musculoskeletal symptoms in 109 adults with neurodevelopmental condition diagnoses.
Green, J – Autism adjustments needed in your classroom (TES 2022)
When it comes to supporting autistic children in the classroom, teachers put a whole range of adjustments in place. It may be that students are given extra time on specific tasks, have texts in a format that is more accessible to read or are allowed to leave the lesson a little earlier to avoid the corridor rush.
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McEeown, S – Dealing with hypermobility means knowing about it first (Teaching Times, Nov 2021)
For Jane Green, school was a challenge. She went to six different schools and was frequently in the bottom set. She was a tall, thin girl who missed a lot of lessons. She was always tired, had problems with bowels, bladder and allergies; suffered from bloating and migraines, dislocations and low grade infections.
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Green, J – Raising awareness of pupils with Ehlers-Danlos syndromes/hypermobility spectrum disorders (edpsy, July 2022)
Increasingly Ehlers-Danlos syndromes (EDS) and the closely related Hypermobility Spectrum Disorders (HSD) are being diagnosed in some pupils but very little is known about the impact this has on the pupil, parents/carers and their attainment and attendance in school.
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Jelsma Lemke D et al – The Relationship between Joint Mobility and Motor Performance in Children with and without the diagnosis of developmental coordination disorder – BMC Pediatrics vol. 13 (2013)
The purpose of this study was to determine whether joint mobility is associated with motor performance in children referred for Developmental Coordination Disorder (DCD-group) in contrast to a randomly selected group of children between 3–16 years of age (Random-Group).
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Kindgren Erik et al – Prevalence of ADHD and autism spectrum disorder in children with hypermobility spectrum disorders or hypermobilie Ehlers-Danlos syndrome: A retrospective study – Neuropsychiatric disease and treatment (Feb, 2021)
Hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) are both characterized by generalized hypermobility, in combination with pain, affected proprioception, and pronounced fatigue. Clinical observation indicates that behavioral problems, hyperactivity, and autistic traits are overrepresented in children with those conditions. The purpose of this retrospective study was to establish the prevalence of attention-deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) among children with HSD and hEDS treated in our clinic since 2012.
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School Toolkit Launches to transform understanding of hypermobility syndromes in children (SEN Magazine 2021)
A school toolkit for Ehlers-Danlos syndromes (EDS) and joint hypermobility syndrome (JHS) has been launched, aiming to improve the understanding, attainment and attendance of pupils with these little-known conditions in schools across the UK. The free online resource, funded by The D’Oyly Carte Charitable Trust, The Peter Harrison Foundation and The Ehlers-Danlos Support UK, has been developed in collaboration with the Hypermobility Syndromes Association to plug the urgent need for education of staff in mainstream primary and secondary schools to give children a better chance of living normal lives.
Kindgren Erik et al – Prevalence of ADHD and autism spectrum disorder in children with hypermobility spectrum disorders or hypermobilie Ehlers-Danlos syndrome: A retrospective study – Neuropsychiatric disease and treatment (Feb, 2021)
Hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) are both characterized by generalized hypermobility, in combination with pain, affected proprioception, and pronounced fatigue. Clinical observation indicates that behavioral problems, hyperactivity, and autistic traits are overrepresented in children with those conditions. The purpose of this retrospective study was to establish the prevalence of attention-deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) among children with HSD and hEDS treated in our clinic since 2012.
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Moore DJ, Eccleston C, Keogh E. 2017. Cognitive load selectively influences the interruptive effect of pain on attention. Pain, 158 :2035-2041
Pain is known to interrupt attentional performance. Such interference effects seem to occur preferentially for tasks that are complex and/or difficult. However, few studies have directly manipulated memory load in the context of pain interference to test this view. Therefore, this study examines the effect of experimental manipulations of both memory load and pain on 3 tasks previously found to be sensitive to pain interference. Three experiments were conducted. A different task was examined in each experiment, each comprising of a high- and low-cognitive load versions of the task. Experiment 1 comprised an attention span (n-back) task, experiment 2 an attention switching task, and experiment 3 a divided attention task.
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Ogden RS, Moore D, Redfern L, McGlone F. 2015. The effect of pain and the anticipation of pain on temporal perception: a role for attention and arousal Cognition and Emotion.
The overestimation of the duration of fear-inducing stimuli relative to neutral stimuli is a robust finding within the temporal perception literature. Whilst this effect is consistently reported with auditory and visual stimuli, there has been little examination of whether it can be replicated using painful stimulation. The aim of the current study was, therefore, to explore how pain and the anticipation of pain affected perceived duration of time.
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Miserandino, C – ‘But you don’t look sick’ (2003):
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
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Grant, S et al – Autism and chronic ill health; an observational study of symptoms and diagnosis of central sensitivity syndromes in autistic adults (Molecular Autism Vol 13, Article 17 2022)
Autistic adults, particularly women, are more likely to experience chronic ill health than the general population. Central sensitivity syndromes (CSS) are a group of related conditions that are thought to include an underlying sensitisation of the central nervous system; heightened sensory sensitivity is a common feature. Anecdotal evidence suggests autistic adults may be more prone to developing a CSS. This study aimed to investigate the occurrence of CSS diagnoses and symptoms in autistic adults, and to explore whether CSS symptoms were related to autistic traits, mental health, sensory sensitivity, or gender.
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