Open Society

Open Society

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@cleartheair.atx | Linktree
@cleartheair.atx | Linktree
Creating access to cleaner air for artists, musicians, & organizers in Austin.
·linktr.ee·
@cleartheair.atx | Linktree
The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome - PubMed
The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome - PubMed
spanbBackground:/b Postural tachycardia syndrome (POTS), hypermobile Ehlers-Danlos syndrome (EDS), and mast cell activation syndrome (MCAS) can occur in the same patient. In this study, we investigated the relationship among these three syndromes. bObjective:/b To establish the relationship of M/span …
Results: The percentage of MCAS within the group of POTS and EDS was 31% in comparison with 2% within the non-POTS and EDS group. The 95% confidence interval calculated for the MCAS in the POTS and EDS group did not overlap with 2%, which showed a statistically significant result. The odds ratio between the two groups was found to be 32.46. Conclusion: There was a marked percentage of MCAS among the patients with diagnoses of POTS and EDS.
·pubmed.ncbi.nlm.nih.gov·
The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome - PubMed
Prevalence of gastrointestinal, cardiovascular, autonomic and allergic manifestations in hospitalized patients with Ehlers-Danlos syndrome: a case-control study - PubMed
Prevalence of gastrointestinal, cardiovascular, autonomic and allergic manifestations in hospitalized patients with Ehlers-Danlos syndrome: a case-control study - PubMed
GI, cardiovascular, autonomic and allergic manifestations are significantly more prevalent in EDS patients compared with hospitalized patients without EDS. Physicians should consider EDS in patients with unexplained GI, cardiovascular, autonomic and allergic conditions and exercise precautions when …
GI, cardiovascular, autonomic and allergic manifestations are significantly more prevalent in EDS patients compared with hospitalized patients without EDS. Physicians should consider EDS in patients with unexplained GI, cardiovascular, autonomic and allergic conditions and exercise precautions when treating EDS patients in a hospital setting.
·pubmed.ncbi.nlm.nih.gov·
Prevalence of gastrointestinal, cardiovascular, autonomic and allergic manifestations in hospitalized patients with Ehlers-Danlos syndrome: a case-control study - PubMed
Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain - PubMed
Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain - PubMed
In neurodivergent adults, there is a strong link between the expression of joint hypermobility, dysautonomia, and pain, more so than in the comparison group. Moreover, joint hypermobility mediates the link between neurodivergence and symptoms of dysautonomia and pain. Increased awareness and underst …
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.
The neurodivergent group manifested elevated prevalence of hypermobility (51%) compared to the general population rate of 20% and a comparison population (17.5%). Using a more stringent age specific cut-off, in the neurodivergent group this prevalence was 28.4%, more than double than the comparison group (12.5%). Odds ratio for presence of hypermobility in neurodivergent group, compared to the general population was 4.51 (95% CI 2.17-9.37), with greater odds in females than males. Using age specific cut-off, the odds ratio for GJH in neurodivergent group, compared to the comparison group, was 2.84 (95% CI 1.16-6.94). Neurodivergent participants reported significantly more symptoms of orthostatic intolerance and musculoskeletal skeletal pain than the comparison group. The number of hypermobile joints was found to mediate the relationship between neurodivergence and symptoms of both dysautonomia and pain.
In neurodivergent adults, there is a strong link between the expression of joint hypermobility, dysautonomia, and pain, more so than in the comparison group. Moreover, joint hypermobility mediates the link between neurodivergence and symptoms of dysautonomia and pain. Increased awareness and understanding of this association may enhance the management of core symptoms and allied difficulties in neurodivergent people, including co-occurring physical symptoms, and guide service delivery in the future.
·pubmed.ncbi.nlm.nih.gov·
Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain - PubMed
The Association Between Fibromyalgia, Hypermobility and Neurodivergence Extends to Families: Brief Report
The Association Between Fibromyalgia, Hypermobility and Neurodivergence Extends to Families: Brief Report
OBJECTIVES Fibromyalgia is associated with symptomatic hypermobility. People with these conditions have a higher prevalence of neurodivergent conditions. Many fibromyalgia patients with hypermobility also report similar symptoms within their family....
This self-reported small case-control study confirms the association of fibromyalgia, hypermobility and neurodivergence, and suggests that close relatives also exhibit this association.
Many patients presenting with fibromyalgia have features of neurodivergence This combination is strongly associated with the presence of joint hypermobility The relatives of these patients also report an increased prevalence of all three conditions
Fibromyalgia (FM) has an estimated lifetime prevalence in the west of 0.2-6.8% [1]. Clinical experience suggests patients are presenting to rheumatology specialists with the combination of FM and symptomatic hypermobile Ehlers-Danlos syndrome (hEDS) at a younger age than a decade ago. Case studies prompted interest in the potential overlap between fibromyalgia (FM) and attention deficit hyperactivity disorder (ADHD) over a decade ago [2] and high rates of prior ADHD were reported among women who later presented with features of FM [3]. The term ’neurodivergence’ incorporates conditions such as ADHD, autism and Tourette’s syndrome and further observations confirmed that a quarter of people with neurodivergence had FM [4], commensurate with a report that the prevalence of ADHD was raised in Dutch women with FM [5]. This association was soon confirmed by van Rensburg who demonstrated that 45% of FM patients also had ADHD [6]. Both conditions are associated with lower circulating levels of dopamine, with evidence of an overlap in the gene coding for dopamine receptor function, which is thought to explain some of the personality traits associated with each condition [7].  A Spanish study highlighted the overlap between autism, hEDS and FM and suggested that neurodivergent conditions in general were associated with both chronic pain and hEDS [8]. A high prevalence of joint hypermobility was recorded among women with ADHD [9], and hEDS itself was linked to the presence of several of the personality traits described among both people with chronic musculoskeletal pain and those with ADHD [9]. Eccles et al demonstrated that brain structure was different among people with hEDS and suggested that this explained many of the psychiatric features which mirrored those observed in neurodivergent conditions [10].  Psychological distress in early life was suggested as a predisposing factor for chronic pain, especially if adverse childhood experiences (ACE) included lack of parental support or validation which were also associated with personality traits seen in neurodivergence [11]. Considering mechanisms by which these diagnoses may occur, Khalil suggested that ADHD may trigger FM via central sensitisation, consequent upon ACEs [12], and that this might explain the pain and motor distress [13] seen in FM. Stimulants given for ADHD have been described as both reducing pain and improving cognitive dysfunction, the latter being a hallmark of FM (‘fibrofog’) [14]. A French study emphasised the extensive co-occurrence associated with ADHD and the overlap with both widespread musculoskeletal pain and personality disorders. They also noted that fatigue was a major aspect of ADHD, and that associated sleep disturbance was common [15]. They suggested that the prevalence and severity of co-occurring conditions increased with age, and this was supported by Asztely who demonstrated that 77% of neurodivergent women developed chronic musculoskeletal pain in later life [16]. Although most literature on the overlap between FM and neurodivergence has come from Europe, there is evidence that the relationship between these conditions also applies to populations in the Far East [17]. More recently, hypermobility was observed in over half of a neurodivergent group with an odds ratio of 4.5 compared to a comparison group. The extent of hypermobility mediated the relationship between neurodivergence and both dysautonomia and musculoskeletal pain [18]. Casanova et al. reviewed the evidence linking neurobehavioral and pain syndromes with dysautonomia and dysregulation of the immune system. They reported significant genetic overlap between each of neurodivergence, hEDS and FM, suggesting that hypermobility and pain may even be considered as aspects of autism [19].  Clinical experience has revealed that many patients presenting with FM and hEDS also report symptoms of chronic pain and mental health issues among their family members. Although the links between these conditions are now recognised among patient populations, we are unaware of any previous studies of the frequency with which they occur within families of those affected. An increased prevalence within close relatives might be expected given the genetic overlap between these disorders. Our objective was to investigate the incidence of diagnosed FM, hEDS and neurodivergence within first-and second-degree relatives of index cases with both FM and hEDS to assess whether this is greater than that observed within a comparison group of index cases attending the same clinical service but with a different musculoskeletal diagnosis.
This study confirmed a high prevalence of neurodivergence among patients presenting to a hospital clinical with features of FM and hEDS. Furthermore, close relatives of these patients’ self-reported increased levels of neurodivergence, FM and hypermobility among themselves. Those relatives who reported a diagnosis of neurodivergence also reported higher percentages of diagnosed FM and hypermobility.
The incidence of diagnosed neurodivergent conditions within first-and second-degree relatives of index cases with both FM and hypermobility was significantly greater than that observed within a comparison group of relatives. We included OA patients and their families as appropriate comparator controls as many immune disorders are increased in prevalence among neurodivergent people. In addition, the incidence of both FM and hypermobility were also increased among close relatives of those with these conditions, with the rates highest among neurodivergent relatives. This supports previous findings of overlap between these disorders and strongly suggests that neurodivergent people are at much greater risk of developing FM [3][4][5][6].  Neurodivergent conditions are present from birth and therefore predate the onset of both HSD and FM. However, symptoms arising from these conditions are very varied and may not be recognised as being due to neurodivergence until adult life. This is more often the case for females than males, and within trans and non-binary people, which may increase their psychological distress and promote anxiety. Overlapping psychological features are described among females with FM and ADHD females [9][10]. Chronic pain may be consequent upon central sensitisation, which can develop in more than three-quarters of women with ADHD over time [16] and this study suggests that similar trends are found among their close relatives.  The presence of hypermobility may mediate the relationship between neurodivergence and chronic pain in FM [18]. Psychological distress in early life is suggested as a predisposing factor for chronic pain, especially if adverse childhood experiences (ACEs) included lack of parental support or validation which may produce personality traits resembling those seen in neurodivergence [11][22]. As the present study demonstrated, females are disproportionately overrepresented within these pain populations, in contrast to the distribution of neurodivergent conditions in the community where diagnosis in males is more common, perhaps due to underdiagnosis in younger females. Many females obtain their diagnosis of neurodivergence during their teenage years or in early adulthood, while males are often diagnosed at an earlier age. Further research should focus on screening for neurodivergent conditions among patients referred to services for the management of chronic pain so that appropriate support and intervention can be offered. The association between FM and neurodivergent conditions is under-appreciated by many clinicians working in these areas and the promotion of greater awareness and understanding of the overlap between these conditions would benefit patients and clinicians alike. This study is very relevant to today's society where many young people are struggling with their identity. Pain in all its manifestations can be associated with this process, and it is important for health-care professionals to recognise this. Understanding how best to respond to young people's emotional and social issues is fundamental to providing an efficient and cost-effective health system.  Power calculations prior to the study were performed and the results used to guide the study design. Despite small numbers, the results were highly significant, supporting the validity of this approach. However, we acknowledge that this is a small study with significant limitations which include the fact that all data relied on self-reporting and that reported diagnoses were not independently verified. The lack of an objective determination of each diagnosis limits the results' internal and external validity. This could have led to an overestimate of the prevalence of neurodivergence, FM or hypermobility because of greater awareness of these conditions within affected families. By contrast, it is also possible that the reported prevalence estimates may be an underestimate, as not all relatives would have undergone diagnostic assessment for their symptoms, which may not have yet evolved in younger family members.  An overlap of genes coding for neurodivergence and for symptomatic hEDS has been reported [19]. This may explain some of relationship between the three conditions although further research is needed to confirm the extent of this association [23]. However, it is becoming evident that the relationship between FM and neurodivergent traits is not confined to patient populations. Recent work has shown a strong correlation between FM and autistic traits in a large, self-selected adult community population [24], mediated by a combination of hypermobility and food intolerance [25]. Clearly, more work is needed to assess the risk factors for chronic musculoskeletal pain among neurodivergent people both in diagnosed populations and in the community if we are to learn how to intervene early and effectively. It is essential that the voices of neurodivergent people are listened to and that their input to this p
·qeios.com·
The Association Between Fibromyalgia, Hypermobility and Neurodivergence Extends to Families: Brief Report
Gender dysphoria in adolescents with Ehlers–Danlos syndrome
Gender dysphoria in adolescents with Ehlers–Danlos syndrome
Ehlers–Danlos Syndrome represents a family of heritable connective tissue disorders that include joint hypermobility, tissue fragility, and skin hyperextensibility. Ehlers–Danlos Syndrome presents with clinical sequela across multiple ...
·ncbi.nlm.nih.gov·
Gender dysphoria in adolescents with Ehlers–Danlos syndrome
Meglathery MD: Coinherited CYP21A2, TNXB, C4 Genes in Chronic illness (CFS, FM, Lyme, MCAS, POTS, Pain, Psychiatric Spectrum, Immunological, Endocrine) +- Hypermobility +- Autoimmune Diseases
Meglathery MD: Coinherited CYP21A2, TNXB, C4 Genes in Chronic illness (CFS, FM, Lyme, MCAS, POTS, Pain, Psychiatric Spectrum, Immunological, Endocrine) +- Hypermobility +- Autoimmune Diseases
RCCX: Co-segregating C4, CYP21, TNXB mutations may explain EDS/hypermobility, CFS/ME/FM, MCAS, POTS/OI/dysautonomia, autism/mood disorders/anxiety/schizophrenia, MS, Lyme, CVID, endocrine and pain syndromes, etc. in patients and their families
·rccxandillness.com·
Meglathery MD: Coinherited CYP21A2, TNXB, C4 Genes in Chronic illness (CFS, FM, Lyme, MCAS, POTS, Pain, Psychiatric Spectrum, Immunological, Endocrine) +- Hypermobility +- Autoimmune Diseases
Resources for autistics and their families - Oh TWIST
Resources for autistics and their families - Oh TWIST
Autism Resources for parents, neurotypicals and allistics by and for autistic people. Autism is highly co-occuring with EDS and MCAD.
·ohtwist.com·
Resources for autistics and their families - Oh TWIST
The Chronic Constellation- the Double Trifecta of Co-morbid Conditions
The Chronic Constellation- the Double Trifecta of Co-morbid Conditions
The Chronic Constellation- a look at the collection of co-morbid conditions that we see common in the hypermobile and autistic community.
Hopefully you’ve heard of “The Trifecta” by now – that is, the relatively common trio of issues we find comorbid in the Ehlers-Danlos community of any form of EDS (or the newly recognized, less visible or well known diagnosis of Hypermobility Spectrum Disorders since March 2017) plus Mast Cell Diseases (now, MCDs) in any form (whether forms of Mastocytosis or Mast Cell Activation Syndrome or HaTS) and finally Dysautonomia which all have to some degree. Many hypermobile patients will have the specific subset known as POTS.
Everyone I meet with EDS seems to either be on or at least related or even married to an autistic person. Or alternatively experiences ADHD I’ve since realized (updated 2021).
Conversely, since befriending several autistics and autistic cousins in the local autistic support groups in past years, I found the reverse to be true as well: almost all showed signs of bendiness (hypermobility) to varying degrees, and complained of many of the same health issues I’ve had all my life including heavy allergies or at least sensitivities among other things. (Autoimmune diseases, fibro, IBS, more.) This is turning into one heck of a coincidence in my book and I’m dying to see a study correlating hypermobility and autism. Dr. Theoharis Theoharides has correlated autism with the highly comorbid Mast Cell Actviation Diseases since 2013 though meanwhile. Edited to add in September 2021: there are increasing numbers of studies showing this correlation you can find on my Autism Resources page now. I also find the following neuro-divergent and psychiatric constellation really common in our group as well, on the spectrum or not: anxiety, depression, ADD/ADHD, OCD, SPD, PTSD, mixed mood disorders, Bipolar, Borderline Personality Disorder, Narcissistic Personality Disorder and any and all variations thereupon you can find. Dual diagnosis anyone? Try “Hexa diagnosis” in some. And no, I’m not kidding, they’ve voluntarily shared their diagnoses with me in some cases even without my asking. We really must stop trying so hard to classify people into single boxes with our short sighted views; further, I’ve personally observed people’s conditions and mental health and neurology to change over time – and diagnoses to change or resolve, frankly. Yes I speak from experience in at least one case. Of course, we are often quite loathe to admit to any of this not only from the social stigma all too sadly attached to having mental illness or neurodivergence of any kind despite how common it truly is, but because way too many of our doctors proceed to write off all of our very real pain and physiological issues to “just anxiety” or depression, sadly.
·ohtwist.com·
The Chronic Constellation- the Double Trifecta of Co-morbid Conditions
How much cognitive dissonance is in your life?
How much cognitive dissonance is in your life?
The Autistic Collaboration Trust has been active in researching cultural and psychological safety from an intersectional perspective. We now explore the level of cognitive dissonance that is genera…
Cognitive dissonance surfaces whenever human emotional limits are reached. The catch is that those humans who are capable of considering themselves to be culturally well adjusted have a capacity for maintaining cognitive dissonance that seems nearly unlimited from an Autistic perspective.
As pointed out in earlier articles, the discipline of economics and the modern belief in the invisible hand are best understood as the foundational beliefs of a cult. More and more people are reaching this conclusion.
·autcollab.org·
How much cognitive dissonance is in your life?
Sorry Republicans But Jesus Was a Marxist
Sorry Republicans But Jesus Was a Marxist
Jesus was clearly a Marxist, not by name, but by ideology. He sought tirelessly to end poverty, to feed and house the needy and to heal those in need.
·huffpost.com·
Sorry Republicans But Jesus Was a Marxist
We Should All Be Archivists
We Should All Be Archivists
Lately, I keep obsessing about two seemingly opposing but interrelated trends: 1) The past decade has seen an incredible bounty of art and self-expression...
I’ve loved so much of the art, culture, criticism and reporting that I’ve seen from marginalized people in the past several years, and I’m terrified that a lot of it could be buried in this tidal wave of hate. We’re really going to need all of those stories and creations to hold onto, during the dark times to come. We’ll keep producing great art and culture no matter what, but we’ll still want to hold on to the proof of what we can accomplish when the “mainstream” culture industry gives us access to resources. And there are so many obscure, little-noticed, indie projects from the past several years that we’re going to want to revisit. This has been a fertile time, and we need to save as much of these riches as we can. The good news? There’s something you can do to help. You can become a citizen archivist.
·buttondown.email·
We Should All Be Archivists
Prince and the Sparkle Brains (cw: disability, ableism, sexual abuse)
Prince and the Sparkle Brains (cw: disability, ableism, sexual abuse)
The day Prince died, I was walking to the audiologist office to pick out hearing aids, Purple Rain playing on my purple iPod, my lipstick-red walking cane tapping its drumbeat on the sidewalk, vibr…
I didn’t know until years later that Prince did the same damn thing. Prince had epilepsy, too. Prince got freaky as survival strategy. In 2009, he talked about his epilepsy publicly for the first time on PBS with Tavis Smiley. “From that point on,” he said, “I’ve been having to deal with a lot of things, getting teased a lot in school. And early in my career I tried to compensate by being as flashy as I could and as noisy as I could.” Prince was a walking disability poetics. After that, when I listened to his music, I thought: Prince has a Sparkle Brain.
Sparkle Brain. My term for my Epileptic, Bipolar, Chiarian, PTSD-brain–for any neurodivergent brain. Sparkle Brain is big tent. Autistic brains are sparkly. Psychogenic Non-Epileptic Seizure brains are sparkly. Sensory disordered brains are sparkly. Neurodiversity in all its forms is sparkly. I mean sparkle literally: my brain is extra electric. When my brain lights up, it sparkles like it’s 1999. But I mean it figuratively, too: sparkly, like a disco ball. A Sparkle Brain is shiny. A Sparkle Brain is beautiful. Sparkle Brain is my fuck you to neurologists who only see me as broken. My fuck you to editors who want me to cut epilepsy out of my writing because they don’t think it’s relevant, they don’t think it sells, they don’t think it’s sexy. My fuck you to neurotypicals who think I need to be fixed. Sparkle Brain is Disability Poetics.
·karriehiggins.wordpress.com·
Prince and the Sparkle Brains (cw: disability, ableism, sexual abuse)
JCPP Advances | ACAMH Child Development Journal | Wiley Online Library
JCPP Advances | ACAMH Child Development Journal | Wiley Online Library
In the paper we argue that “Anything goes” (Feyerabend) when using PPI in an exploratory way to generate fruitful hypotheses. Translation of the findings of PPI studies however require a firm evidenc...
·acamh.onlinelibrary.wiley.com·
JCPP Advances | ACAMH Child Development Journal | Wiley Online Library
Defeating silence and stigma with WordPress - Sconfiggere silenzio e stigma con WordPress
Defeating silence and stigma with WordPress - Sconfiggere silenzio e stigma con WordPress
Elena Brescacin from Italy writes how WordPress enabled her to communicate a passion to the world despite being blind.
An experience that WordPress trainer Gloria and I are having together, because we realized how Gutenberg somehow has the same logic as the programs used by the blind, to interact with computers. I almost feel like I’m playing with toy bricks, then Gifter with his working eyes tells me if something has gone wrong and Gloria helps me put it right in case of need. All in all, the universal and accessible web is there, the WordPress community is proving it to me day by day, and I am glad to be an active part of it.
·heropress.com·
Defeating silence and stigma with WordPress - Sconfiggere silenzio e stigma con WordPress
📚 Beyond Montessori - 16 Educationists From the Global South You Should Know
📚 Beyond Montessori - 16 Educationists From the Global South You Should Know
John Dewey, Horace Mann, Maria Montessori. The same names we always hear. But there are so many other educationists who transformed schools around the world. Through their writing, theory-building, entrepreneurship & advocacy, educationists in Latin America, Africa, South Asia & Southeast Asia opened up
·edwell.substack.com·
📚 Beyond Montessori - 16 Educationists From the Global South You Should Know