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\u201cHumans of Chronic Illness\u201d is our take on the popular \u201cHumans of New York\u201d photoblog. The aim of this archive is to show the faces and stories of those suffering from ME\/CFS, Long Covid, and other post-infection diseases so that those who are in charge of allocating research funds cannot deny the widespread devastation this disease has inflicted on so many patients, caregivers, and families.<\/p>\n
Your story makes a difference!<\/strong><\/em> Each story raise awareness of these devastating diseases \u2014 ultimately increasing research funding and leading to answers for our community. Submit your story in one of these categories:<\/p>\n At Solve M.E., we know it’s so important to share personal experiences of complex, chronic illnesses to increase understanding and improve awareness. Through campaigns like Humans of Chronic Illness, we hope to elevate the voices of all individuals in the post-infectious chronic disease community space, such as: ME\/CFS, Long Covid, postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos Syndrome (EDS), hypermobility spectrum disorder (HSD), and mast cell activation syndrome (MCAS). It has been our mission to increase federal funding dollars and research solutions that will make ME\/CFS, Long Covid, and other \u201clong haul\u201d diseases more diagnosable, better understood, and treatable.<\/p>\n These diseases also have an immense impact on the lives of family and friends. Caregiving support is essential for many suffering from ME\/CFS, Long Covid, and other post-infection diseases. Some individuals face severe symptoms that leave them frequently bed-bound and require assistance with everyday activities such as eating, standing, or bathing. Caregivers and their experiences give us insight into navigating the emotional, logistical, and legal challenges of severe illness.<\/p>\n ME\/CFS Long Covid, and other infection-associated complex chronic illnesses are not psychosomatic or psychiatric in nature. For decades, mischaracterization of post-infection diseases has profoundly impacted scientific research and medical care, leaving patients misunderstood and without the support they need. Many ME\/CFS patients, for example,\u00a0 have even been falsely advised to pursue graded exercise therapy, or GET, which has actually been shown to exacerbate symptoms. Diagnosis can be delayed by medical gaslighting and dismissal of symptoms. Patients of Color face racism and discrimination that greatly impact their health outcomes. If you have received harmful or misleading information about your illness, we want to hear from you.<\/p>\n Please contact us with any questions at solvecfs@solvecfs.org<\/a>.<\/p>\n We can\u2019t wait to read and share your stories!<\/p>\n
\nLived Experience<\/h3>\n
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\nMyalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS) is a chronic, complex, neuroimmune disease that profoundly limits the health and productivity of patients and is often triggered by an infection. This disease affects as many as 24 million people across the world. People with ME\/CFS experience a wide spectrum of disability, ranging from mild symptoms to those who are unable to work at all. No two experiences with ME\/CFS are the same.<\/li>\n
\nWhile most patients recover from COVID-19, as many as half experience lingering symptoms six or more months after their initial infection. Long Covid is the patient-preferred term used to describe this experience of post-infection illness. Long Covid includes a broad range of symptoms that can be disabling and prevent recovery to pre-infection health. Raising awareness of this public health crisis is critical to making sure that those suffering get the support they need.<\/li>\n<\/ul>\n<\/div>\n
\nCAREGIVERS AND LOVED ONES<\/h3>\n
\nMISINFORMATION AND DISCRIMINATION HURTS<\/h3>\n
A few suggestions:<\/h4>\n
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