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Tania Melnyczuk | AutisticStrategies.net @ekverstania
, 24 tweets, 3 min read Read on Twitter
THREAD: "You may see a family with a member, often female, diagnosed with or suspected to have Ehlers-Danlos Syndrome, Hypermobility Type (EDS-HT), postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS)."
"Then in the extended family, you may find autoimmune diseases, i.e. multiple sclerosis, cutting and eating disorders, "possible bipolar disorder," gender fluidity, a highly successful and innovative genius, someone with chronic fatigue syndrome (CFS) or fibromyalgia (FM)..."
"...someone with severe post-traumatic stress disorder (PTSD) and someone else with bouts of psychosis. The children who are more scrutinized in this day and age, may be diagnosed with attention deficit disorder (ADD), sensory processing issues plus or minus [autism]."
"There is a characteristic psychological profile (CAPS) which goes with this: sensitive, emotional, often gifted and we tend to surround ourselves with others who share these traits."
We're talking about a cluster of conditions and phenomena which appear to have something in common. Some of the conditions are pleasant; some not. I will name some of the less pleasant ones.
Mast Cell Activation Syndrome (MCAS): histamine intolerance, migraines, diarrhea, sinus pain, burning eyes, syncope, distractibility, brain fog, irritability, interstitial cystitis, hyper-adrenergic POTS, etc., depending on location of the mast cells...
Postural Orthostatic Tachycardia (POTS), Dysautonomia, Orthostatic Intolerance, Low Blood volume...
Ehlers-Danlos Syndrome, Hypermobility Type (EDS-HT)
Chronic fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME)
Fibromyalgia (FM)
Chronic Lyme Disease, Gulf War Syndrome, Toxic Mold/Biologic Illness...
Pain Syndromes: Neuropathic Pain Syndromes/Chronic Regional Pain Syndrome/Myofascial Pain Disorder/Frequent Dislocations/Dysmenorrhea/Chronic Headache/Migraines/Interstitial Cystitis/Vulvodynia/Temporomandibular Joint Disorder (TMJ)...
GI Syndromes: Irritable Bowel Syndrome/Cyclical Vomiting/Gastroparesis/Food Intolerance/Gut dysbiosis/Candida overgrowth/Leaky Gut Syndromes/Malabsorption Syndromes...
Raised Intracranial Pressure Conditions: Pseudotumor Cerebri/Benign Intracranial Hypertension/Posterior Reversible Encephalopathy/Acquired Chiari Malformation...
Neurological Issues: Neuropathies/Pain Syndromes/Uncoordinated Swallow/Vertigo/Central Apnea/Sleep Paralysis/Dysautonomia/Seizure-Like Episodes/Dystonia/Narcolepsy/White Matter Lesions/Small Fibre Polyneuropathy (Erythromelalgia)/Restless Leg Syndrome
...
Brain Anatomic Abnormalities (big Amygdalae-fear and emotional center; small anterior cingulate; chiari malformation, hydrocephalus)
Mitochondrial Disorders...
Immune Dysregulation: Combined Variable Immunodeficiency (CVID)/IgA deficiency/fungal infections/recurrent HSV infections/no colds for years, severe bacterial infections, inability to clear strep/Epstein Barr/mycoplasma/chlamydia/candida, dysbiosis...
...small intestinal bacterial overgrowth, multiple sclerosis (MS), autoimmune disorders-classic and non classic, i.e. mixed connective tissue disorders/eosinophilic disorders, high TGF beta/inflammatory conditions (endometriosis, etc.)...
Chronic Inflammatory Response Syndrome (CIRS)
Psychiatric Issues: Psychiatric Conditions due to Dysautonomia (Panic/Anxiety)/ADHD/Hyperfocus/Autistic Wiring/Sensory Processing Disorders/Psychosis/Schizophrenia/Chronic Illness: Stress and Loss/PTSD...
Mood Disorders (Bipolar/Unipolar)/Chronic Insomnia/Generalized Anxiety Disorder/Obsessive Compulsive Disorder/Phobias/Obsessive Compulsive Personality Disorder/Paranoid Disorders/Emotional Dysregulation/Compulsive Behaviours...
Hormonal Disorders: Sex Hormone Disorders-Cystic Ovaries, Acne, Water +/- Fat Associated Weight Gain, Breast and Tissue Swelling, Fertility issues, Hot Flashes/Night Sweats; Adrenal Gland Issues: Adrenal Fatigue, Addison's, High/Low Cortisol, Low Aldosterone...
Pituitary Hormone Abnormalities-ACTH, TRH-Mediated Thyroid Disorders; Autoimmune Hormonal Issues (i.e. Hashimotos's Thyroiditis), etc...
GU/Renal Issues: Fibromuscular Dysplasia, Diabetes Insipidus, Interstitial Cystitis, Vesicoureteral Reflux...
Evidence of Poor connective tissue integrity (dislocations, bruising, bleeding, petechaie, calcific aortic valves, Mitral Valve Prolapse, etc), Dry eyes, Tinnitis, Subcutaneous Adipose Disorders (Lipidema, Dercum's Disease)...
Miscellaneous other stuff: Extreme Temperature Dysregulation (Dysautonomia or not), Multiple Chemical Sensitivity, High Adrenaline/Noradrenaline (also called norepinephrine) States, Erythromyalalgia, Raynaud's, Livedo Reticularis...
Perhaps: Medullary Sponge Kidney, Pyroluria, disorders of copper and zinc regulation, Early Onset Parkinson's Disease.
In addition to having some of the health problems above, you may also be very intelligent, left-handed, creative, genderfluid, and autistic.
Now that I have given you all the clues, can you name the theory that ties all this together, and can you name the neurodivergent doctor who advocates listening to neurodivergent people who suffer from those health issues?
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More from @ekverstania see all

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It suddenly struck me how amazing viruses actually are. I should get over my thinking that they look ugly and scary, and appreciate how they work. While their effects are genuinely complex, they tempt me to imagine that they themselves are merely complicated.
Perhaps viruses are also scary because they challenge us to contemplate systems that have aims and rules and ethos without an animal will or instinct, without consciousness of "good" or "evil". #systemsthinking
And with our Western science fiction frame of reference, they evoke images of robots, pseudo-lifeforms that inspire fear by their complete lack of passion or compassion. They are so utterly logical, yet they do not actually think. And humans at least want an argument.
Read 7 tweets
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@autismage @autistica I'm fine with research into gene editing. But they're not focusing on autistic priorities. If they were, they'd prioritise things like genes associated with painful degenerative connective tissue disorders which affect so many autistics and their families.

They

never

asked.
@autismage @autistica Imagine some of that money was used to turn information like THIS into treatment for autistic people whose pain is ignored just because they have a psychiatric diagnosis. Imagine some of that money was used to train doctors in these matters. Just imagine. ehlers-danlos.com/2018-eds-ghent/
@autismage @autistica Imagine they used the money to create awareness campaigns of what we already know on a molecular and cell biology level about sensory overload -- awareness campaigns for DOCTORS.
Read 16 tweets

Related threads

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Do you have Postural Orthostatic Tachycardia syndrome #POTS?

Approximately 25% of patients with #MECFS also have #POTS

This @FrontPediatrics study shows that a SHORT tilt table test fails to diagnose #POTS accurately

#pwME
frontiersin.org/article/10.338… …
This large @FrontPediatrics study finds that only a full TEN MINUTE tilt table test accurately diagnosed ALL #POTS patients

#MECFS #pwME
frontiersin.org/articles/10.33…
nearly half of #MECFS patients have severe cardiovascular symptoms that require treatment/management

@FrontPediatrics study found:

25% of #pwME also had #POTS
17% of #pwME also had #orthostatic intolerance #OI
<1% of #pwME had fainting spells

frontiersin.org/articles/10.33…
Read 3 tweets
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Full house at the Ehlers-Danlos Society Conference at Macquarie University today: @LaraBloomEDS opening the event
"Hypermobile EDS is probably more prevalent than diagnosed." #AustEDSConf18
. @LaraBloomEDS talks about a doctor at a conference who gave a talk denying EDS is real, despite the genetic data. #AustEDSConf18
Read 118 tweets
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Currently reading Claude Hamonet's work on Ehlers-Danlos Syndrome and iatrogenic harm to EDS patients claude.hamonet.free.fr/eng/eds.htm
"Ancient Greek painting in a vase, showing a physician (iatros) bleeding a patient"
Iatrogenesis refers to any effect on a person resulting from any activity of one or more other persons acting as healthcare professionals or promoting products or services as beneficial to health which does not support a goal of the person affected.
Read 129 tweets
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#THREAD

The Cosmic Movement's penetration of Indian Freedom Struggle, Politics, Education & Religion.

This thread focuses on advanced threat perception from this group. Although this is a vast network covering many areas we concentrate here on key players driving it forward.
This guy is Max Theon original name Louis-Maximilian Bimstein. He founded the Cosmic Movement. As we will see each and every member of this network prefers to hide their original name, identity and history.
Many prominent people were involved with this Cosmic Movement as we will see. One of them was Tomáš Masaryk (who became the first President of Czechoslovakia) also the Princess of Rohan in Vienna and many others. However this group was actually a spin-off of the OTO.
Read 44 tweets
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👋🏼 just wanted to share with you a new diagnosis. As suspected, I have craniocervical instability. My skull is compressing my brainstem causing my breathing + other problems. I’m having surgery later this month to stabilize my skull + neck. Learn more: medium.com/@jenbrea/a-new…
Craniocervical instability and atlantoaxial instability are a common complication of Ehlers-Danlos Syndrome, especially #hEDS. I don’t meet the criteria but it’s clear hypermobility is an important part of my clinical picture. #Nightingales
A handful of other #pwme have also been diagnosed with CCI/AAI in the past year including @jeff_says_that who, at one year post-surgery, considers himself in remission from both #POTS and PEM: mechanicalbasis.org
Read 11 tweets
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Ok, I'm currently still in bed reading a thesis on Ehlers-Danlos Syndrome and quality of life. I'm going to tweet some of it, because no doctors told me this stuff... ses.library.usyd.edu.au/bitstream/2123…
'Systemic Manifestations and Health- Related Quality of Life in Joint Hypermobility Syndrome/Ehlers- Danlos Syndrome-Hypermobility Type' by Anne Krahe, Biomedical Science, University of Sydney (2017)
"Chronic pain has been documented to affect up to 100% of individuals with a diagnosis of JHS/EDS-HT (63), while 85.7% report experiencing progressively worsening pain"
Read 35 tweets

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