What You See is Not How I Feel is a visually simple overview of how living with Myalgic Encephalomyelitis (ME) feels. It opens conversation, clears misperceptions, and encourages understanding rather than judgement. This book is appropriate for children, adults, and professionals.
Byron Hyde M.D. is a Canadian physician who has focused his practice on chronic fatigue syndrome (ME/CFS) patients for the past 30 years. In 1988, he founded the Nightingale Research Foundation to “explore, understand and treat the patients disabled with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome (M.E. and CFS), fibromyalgia-type illnesses […]
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Post-exertional malaise (PEM) is the hallmark clinical feature of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). PEM involves a constellation of substantially disabling signs and symptoms that occur in response to physical, mental, emotional, and spiritual over-exertion. Because PEM occurs in response to over-exertion, physiological measurements obtained during standardized exertional paradigms hold promise to contribute greatly to our understanding of the cardiovascular, pulmonary, and metabolic states underlying PEM. In turn, information from standardized exertional paradigms can inform patho-etiologic studies and analeptic management strategies in people with ME/CFS. Several studies have been published that describe physiologic responses to exercise in people with ME/CFS, using maximal cardiopulmonary testing (CPET) as a standardized physiologic stressor. In both non-disabled people and people with a wide range of health conditions, the relationship between exercise heart rate (HR) and exercise workload during maximal CPET are repeatable and demonstrate a positive linear relationship. However, smaller or reduced increases in heart rate during CPET are consistently observed in ME/CFS. This blunted rise in heart rate is called chronotropic intolerance (CI). CI reflects an inability to appropriately increase cardiac output because of smaller than expected increases in heart rate. The purposes of this review are to (1) define CI and discuss its applications to...
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Those physicians and researchers who are familiar with the disease of Myalgic Encephalomyelitis (M.E.) are in agreement that activity or exercise can lead to a severe relapse.How to
New research holds out hope for those suffering from an insidious and debilitating illness known as chronic fatigue syndrome (CFS), or myalgic encephalomyelitis (ME).
A new test developed by Montreal researchers is expected to improve the diagnosis and treatment of patients with myalgic encephalomyelitis (ME), a condition better known as chronic fatigue syndrome.
As the world continues to watch the number of COVID-19 cases increase (and daily records being broken), patients with myalgic encephalomyelitis, aka chronic fatigue syndrome, want to tell those rec…
Book Synopsis What You See is Not How I Feel is a visually simple overview of how living with Myalgic Encephalomyelitis (ME) feels. It opens conversation, clears misperceptions, and encourages understanding rather than judgement. This book is appropriate for children, adults, and professionals.
Please show understanding for people experiencing Chronic Fatigue Syndrome
Let Our Compass Guide You on Your Journey Whether you are newly diagnosed or have been living with a chronic medical condition for years, you have likely felt a loss of power and direction over yourself, surviving at the mercy of doctors who often don’t understand your condition. Here at Chronic Care Compass, we hope to guide you through taking back your power and becoming an informed and educated patient, putting you and your health first. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic condition characterized by extreme fatigue, pain, cognitive dysfunction, and other symptoms. The exact cause of ME/CFS is unknown, and there is no specific diagnostic test for it. Research has shown that ME/CFS may involve mitochondrial, neuroendocrine, immunological, and metabolic abnormalities. In many cases, clinicians rely on patients to better understand symptoms, activity levels, and how medications are working to help ease symptoms. Maintaining a medical binder can often be a critical part of your healthcare plan. This ME/CFS Journal provides over 50+ pages of trackers and sheets, allowing you to keep all your health information in one place. With this binder you can track symptoms, treatments, and more, giving you a clearer picture of your overall health, the effectiveness of medications, and even potential symptom triggers – allowing you to better track your health, provide information to your healthcare providers, and put the power back in your hands when it comes to your health management. Each medical binder includes an in-depth table of contents that describes each tracking page and how to get the most out of your medical binder. As someone with medical experience and multiple chronic conditions, I have worked to include just about everything in these binders, and, while each one may be geared toward a specific medical condition in design, it is very common for us to have multiple conditions, so the tracking sheets cover all common comorbidities, meaning you won’t need to purchase additional tracking sheets. I am very open to adding to these binders, so if there is something else you track and would like to see added, please contact me and I work to add more, as I believe in providing every person with a chronic condition the tools they need to take control of their health. Each binder is designed to show awareness of specific conditions. Your table of contents provides details on each tracking sheet, as well as tips to help you make your medical binder complete. The tracking sheets are kept simple as I also understand how time-consuming and energy-zapping regular tracking can become. Forms included - Table of content pages (7) Medical Snapshot Emergency Information Personal Medical History Family Medical History Vaccination History Current Providers Surgical History Major Illnesses Chronic Conditions Blood Pressure Log Blood Glucose Log Daily Food Journal Allergy Tracker Medication List Medication Refill Log Supplements List Medication Tracker Heart Rate and Activity Daily Heart Rate Heart Rate Variability Oxygen Saturation Log Daily Vitals Log Monthly Temperature Log Insurance Information Sleep Time Log Hours of Sleep Log Exercise Log Chronic Pain Log Weekly Symptom Log Daily Symptom Sheet Appointment Calendar Infusion Calendar Appointment Summary Treatment Log Activity Log Weekly Weigh-in Body Measurement Tracker Daily Water Intake Laboratory Tests and Results Imaging Tests and Results Diagnostic and Treatment Procedures Dental Care History Emergency Room Visit History Vision Care History Menstruation Log Headache Tracker Bowel Movement Tracker Mood Tracker Assistive Devices Activity Spoon Value Hospital Bag Checklist Daily Sodium Tracker Monthly Morning Stiffness Log Orthostatic Symptom Tracking What You Receive: Each binder comes as a digital download non-editable PDF designed for printing and the creation of a medical binder. Those looking for a digital option can upload these binders into PDF annotation apps, such as GoodNotes to fill in information digitally. Files will be available once payment is received and confirmed. You can download the files through a link in your confirmation email or through your Etsy account. Go to Purchases and Reviews to see the available downloads. Files are available in 3 sizes (letter, A4, and A5) and you will receive all three files. This is a digital item only and no physical copy will be mailed directly to you. Terms of Use These files are for personal use, and you are unable to print out unlimited sheets. However, these files or the printed product may not be redistributed, recreated, or repackaged and sold to others. Chronic Care Compass is currently working on an informative and supportive website designed to further empower those living with chronic conditions. Bookmark our site at http://www.chroniccarecompass.com
What is CFS or ME or MECFS? These different names for illnesses with same core symptoms show a history of confusion and lack of definitive diagnostic tools.
Stop ignorance!
Exploring The Connection Could Lead To Better Understanding For These Conditions and Other Related Conditions I have spent most of my life disabled from four different conditions. While this has been…
Without understanding the lingering illness that some patients experience, we can’t understand the pandemic.
Objectives Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a significant medical challenge, with no indisputable pathophysiological mechanism identified to date. Methods Based on clinical clues, we hypothesized that 5-hydroxytryptamine (5-HT) hyperactivation is implicated in the pathogenic causes of ME/CFS and the associated symptoms. We experimentally evaluated this hypothesis in a series of mouse models. Results High-dose selective serotonin reuptake inhibitor (SSRI) treatment induced intra- and extracellular serotonin spillover in the dorsal raphe nuclei of mice. This condition resulted in severe fatigue (rota-rod, fatigue rotating wheel and home-cage activity tests) and ME/CFS-associated symptoms (nest building, plantar and open field test), along with dysfunction in the hypothalamic-pituitary-adrenal (HPA) axis response to exercise challenge. These ME/CFS-like features induced by excess serotonin were additionally verified using both a 5-HT synthesis inhibitor and viral vector for Htr1a (5-HT1A receptor) gene knockdown. Conclusions Our findings support the involvement of 5-HTergic hyperactivity in the pathophysiology of ME/CFS. This ME/CFS-mimicking animal model would be useful for understanding ME/CFS biology and its therapeutic approaches.
Researchers used a broad brush when they focused on the most easily understood aspect of the disorder – fatigue. Now, in this bold and provocative blog, the first part of a four-part series called “A Neuroinflammatory Model of ME/CFS”, guest blogger Marco proposes that other symptoms, none of which are […]
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If we had properly funded research into chronic fatigue syndrome, we’d already be a long way to understanding long COVID. Instead, we’re playing catch-up.
Meeting people that recovered from ME/CFS/Fibromyalgia almost every week, has revealed a common theme in their approach to recovery that is powerful and ...
"Forgetting your list of things not to forget."
