CFS/ME

Is Fibromyalgia And Chronic Fatigue Syndrome Actually Small Fiber Polyneuropathy ?

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  By Cort Johnson in Health Rising.   Chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) produce so many symptoms that diagnosing them can be difficult for uninformed doctors. While we know that small fiber polyneuropathy (SFPN) (or small fiber neuropathy (SFN) commonly occurs in both these diseases, what I didn’t realize until I read the […]

From The Tahoe Outbreak To COVID-19 Dr. Peterson And Simmaron Take On The Coronavirus – And ME/CFS

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  By Cort Johnson in Simmaron Research.   “Testing is so important to everyone in our community, especially front-line workers and people who are at higher risk of severe disease. Simmaron is excited to serve our neighbors and lead the way to broader testing, so we help keep Nevada safe and learn more about this […]

Data Firm Zegami Joins Project To Find Cure For ME

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  By Agata Gurkovska in Zagami.   Zegami, the Oxford University data visualisation spin-out, has joined an international team of medical researchers to try and find the cause of Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). The startup believes the project could lead to the discovery of the root cause of the condition […]

Paul Garner: Covid-19 And Fatigue—A Game Of Snakes And Ladders

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  By Paul Garner in BMJ BMJ Blogs.   It’s over, I thought! It was the beginning of May, after the weirdest seven weeks of illness I had ever had, a roller coaster of exhaustion, pain everywhere, tinnitus, headaches, and fog: I felt remarkably well, almost high. The aches had gone, my mind was alive, […]

The Blood Vessel Crunch: A Unifying Hypothesis For ME/CFS

Research

  By Cort Johnson in Simmaron Research.   This is another hypothesis paper that gives one hope – and makes one wonder if the authors might have a handle on what’s happening with chronic fatigue syndrome (ME/CFS). The paper proposes that a tantalizingly simple problem – an autoimmune attack on just one receptor – out […]

Trial By Error: Merck Manual Still Disseminates GET/CBT Advice

David Tuller

  By David Tuller, DrPH The graded exercise therapy/cognitive behavior therapy treatment paradigm for chronic fatigue syndrome—also imposed on those diagnosed with myalgic encephalomyelitis, CFS/ME, ME/CFS, and other variants–is like the undead. This concept keeps reemerging from the fetid intellectual swamplands that spawned it, no matter how many times it is revealed as nonsense. Although […]

7 Signs That You’re Running Out Of Spoons

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    By ME/CFS Self-Help Guru.   One frustrating thing about energy limiting chronic illnesses like ME/CFS, Fibromyalgia and Lyme disease, is that energy levels can fluctuate from one day to the next. Christine Miserandino’s Spoon Theory has helped many people understand the concept of rationing out your energy by relating an energy unit to a spoon, […]

For ME/CFS Patients, Viral Immunities Come At A Devastating, Lifelong Cost

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  By Scott LaFee in USC San Diego Health.   Mylagic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness. Affected persons often cannot pursue ordinary activities — physical or mental — because of an incapacitating loss of energy and other symptoms, and may find themselves confined to bed or house-bound for years. Anyone […]

10 Things People Don’t Realize You’re Doing Because You Have An Invisible Illness

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  By Kim Quindlen in Thought Catalog.    Often, the hardest part of having an invisible illness is not the chronic pain or the constant discomfort or any of the other symptoms – it’s the fact that other people cannot really see or understand what you’re going through. Although the disability causes endless problems and challenges for […]

Coronavirus And Chronic Illness

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  What does Covid-19 mean for the chronic illness community? A guest blog by Catherine Hale with Alison Allam, Victoria Clutton and Leonora Gunn in Disability Wales. The Covid-19 crisis has us all in shock. But it has also shone a light on our social exclusion as a group of disabled people, as well as our […]

Meet The Businesswomen Whose Chronic Conditions Mean They Have To Sneak In Sleep In Toilets

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By Dayna McAlpine in the Metro.   It’s 8am on a Monday morning. I’ve had ten hours of sleep, a strong coffee to kick start the day and a cold shower to get my blood pumping before heading to the office. It’s 12pm on a Monday afternoon. I’ve been staring at my screen for three […]

Benefit Assessment Companies ‘Have Made Almost No Progress’ On Safeguarding

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  By John Pring in Disability News Service.   The three companies that carry out disability benefit assessments for the government have made almost no progress in the last year on alerting local authorities to concerns about claimants whose safety is at risk, according to a disabled campaigner. Last year, freedom of information responses from […]

Ending The Somatization Myth In ME/CFS (Or “Who’s The Deluded One Now” ?)

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By Cort Johnson in Health Rising.   Ronald Reagan said to Gorbachev, “Take down that wall!” and it did ultimately fall.  The ME/CFS version of that might be, “Get rid of those stubborn psychiatric ideas!” It’s a cultural problem.  The authors pointed out that anytime a physician sees a patient with unexplained fatigue, their default […]

New Pathways: A Step Towards Fine-Tuning Treatments For ME/CFS ?

Research

    By Cort Johnson in Simmaron Research.   Most chronic fatigue syndrome (ME/CFS) studies focus on females, but for once we have a study contrasting females and males. It makes sense that this group – hailing from Dr. Klimas’s Institute for Neuroimmune Studies, the University of Miami, the Veterans Center in Miami, the University […]

Eight Reasons People With Chronic Fatigue Syndrome (ME/CFS) And/Or Fibromyalgia Should Take Care

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  By Cort Johnson in Health Rising.   Please note, if it’s not obvious, that I’m not a doctor – I’m a patient. Take these musings as you will. We don’t know if people with ME/CFS or FM are more at risk of: a) getting COVID-19; or b) coming down with a severe case of […]

Do You Ever Feel Like Giving Up ?

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    By Jo Moss in A Journey Through The Fog.   Do you ever feel like giving up? Do you ever feel like you don’t have the strength to keep going? Do you ever feel like screaming; “I didn’t sign up for this”? Do you ever feel like the world is against you? Do […]

When You Say Coronavirus Will Only Kill The Vulnerable, You’re Talking About Me

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  BY BROOKE VITTIMBERG in Fast Company.  When news of COVID-19 started to spread, there were two popular responses. The first was to rush to the store, buying N95 masks and hand sanitizer until shelves were bare. The second was to shrug and comfort the masses because mostly immunocompromised people—people like me—would die. On Twitter, […]

M.E Myths Debunked: Part 1

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  By Lorna McFindlow in the Cream Crakered Blog.   Two years ago, when I was diagnosed with M.E, I knew a little about it because a friend of mine had it, but other than that I was clueless. From what I was told at the time of my diagnosis, I understood that I was […]

Who Is Getting Sick, And How Sick ? A Breakdown Of Coronavirus Risk By Demographic Factors

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  By Sharon Begly in Stat News.   The new coronavirus is not an equal-opportunity killer: Being elderly and having other illnesses, for instance, greatly increases the risk of dying from the disease the virus causes, Covid-19. It’s also possible being male could put you at increased risk. For both medical and public health reasons, researchers want […]

Eating Meat: Links To Chronic Disease Might Be Related To Amino Acids – New Findings

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    By Laura Brown and Kelly Jones in The Conversation.   Plant-based diets have been popular in the media recently, but research shows that going vegetarian or vegan isn’t only good for the environment, but for our health, too. Meat-rich diets are linked to a range of health problems, from heart disease and strokes to type two diabetes and some cancers. […]

To The People Who Assume I’ve ‘Stolen’ My Disability Parking Permit

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  By Bree Hogan in The Mighty.   I can walk, but I can’t walk very far, and it’s always with pain and fatigue. I can stand, just not for very long. I use a mobility scooter — a small version of an electric wheelchair — and walking sticks.  Limited as my mobility is, I’m still made […]

Has The “Reptilian Brain” Gone Haywire In ME/CFS ? Back To The Brainstem We Go.

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By Cort Johnson in Health Rising.   The most primitive part of the brain, the brainstem – a  part of “the reptilian brain” – doesn’t get much respect in medical research. VanElzakker pointed out that most brain scan studies focus on the upper, more highly developed parts of the brain.  Because brain imaging techniques can’t […]

My Disability Is Dynamic

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  By Brianne Benness in Medium. Maybe the media has led you to believe that all disabilities are visible and static. Disabilities caused by chronic illness can be anything but. The relationship between chronic illness and disability can be a complicated one. Not everyone who is disabled is chronically ill, and vice versa. And when I […]

A Doctor’s Perspective: Is ME/CFS Really Lyme Disease ?

Research

  By Dr David Bell in ProHealth.   Editor’s Note: David S. Bell, MD is a well-known doctor in the field of ME/CFS treatment and research. Though now retired, Bell was among the first physicians who cared for the group of ME/CFS patients that were part of the original cluster of outbreaks in the mid-1980s. […]

Chronic Fatigue Syndrome: Living With An Invisible Illness

BBC News

  From BBCNews.   Lorna Bryson, 25, suffers from Myalgic Encephalomyelitis (ME) also known as chronic fatigue syndrome. The illness means she has a low immune system, gets headaches, sore muscles and joints, and needs at least 12 hours sleep every night. Doctors didn’t believe there was anything wrong with Lorna growing up as she […]

You Don’t Look Sick: ‘You Might Think I Look Better But I Still Feel Horrible Every Day’

Frustration Chronic Illness

By Laura Abernethy in The Metro. Amy Norris, 23, from Southampton has postural orthostatic tachycardia syndrome (PoTS) and chronic fatigue syndrome (also known as myalgic encephalomyelitis) (CFS/ME). As part of our, You Don’t Look Sick series about invisible illnesses, Amy chatted to Metro.co.uk about living with both conditions and how most people still don’t understand chronic […]

“Neither Dying, Nor Recovering”: Learning From ICUs To Solve ME/CFS And Fibromyalgia – A Synopsis

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    By Dominic Stanculescu in Health Rising.    From Dominic   I believe observations made in Intensive Care Units can further understanding of ME/CFS.   Indeed, following a severe injury or infection some ICU patients fail to begin recovery for unknown reasons. This condition, termed “chronic” or “prolonged critical illness,” is characterized by neuroendocrine dysfunctions perpetuated by cytokines and oxidative/nitrosative stress. Regardless of the initial injury or […]

7 Tips For Better Pacing

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      By Julie Holliday in Pro Health. With an energy-limiting chronic illness like ME/CFS, a key to being as well as possible is to make sure you don’t use more energy than you readily have available to you (sometimes called your “energy envelope”). When you push past your limits, your cells have to […]

Shining A Light On Chronic Fatigue Syndrome, A Little Understood Disease Among Doctors

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  By Jennie Spotila, in the Inquirer.   I recently went to a new doctor. He looked over my chart: “Chronic fatigue syndrome,” he read, and then he glanced up at me. “You don’t look tired,” he quipped. “There, I made it go away.” I’ve been sick for 24 years, and I get comments like […]

Shining A Light On Chronic Fatigue Syndrome, A Little Understood Disease Among Doctors

Chronic

  By Jennie Spotila, For the Inquirer.   I recently went to a new doctor. He looked over my chart: “Chronic fatigue syndrome,” he read, and then he glanced up at me. “You don’t look tired,” he quipped. “There, I made it go away.” I’ve been sick for 24 years, and I get comments like […]

Humans of ME/CFS – Camille C.

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  From Solve ME/CFS Initiative.   I was an elementary school music teacher, community volunteer, church pianist, wife, and young mother when I became ill in March, 2000. My doctor said I had mono and I was totally bed bound. The sickness wiped away my memory and I lost memories of my children as babies, […]

Open Medicine Foundation Sponsors Second Annual Community Symposium On The Molecular Basis Of ME/CFS At Stanford University

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    From Market Insider.   LOS ANGELES, Sept. 20, 2018 /PRNewswire/ — Open Medicine Foundation (OMF), the premier nonprofit organization investing in research to cure myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), sponsors the Second Annual Community Symposium on the Molecular Basis of ME/CFS on September 29, 2018, at Stanford University. This event is expected to draw more than 300 scientists, […]

Investigating The Causes Of Chronic Fatigue Syndrome

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    By James Moore in Patient Worthy.   According to a story from Medical Xpress, chronic fatigue syndrome is one of the most poorly understood diseases. Although the name chronic fatigue syndrome seems to merely suggest that patients are just run down or overly stressed, the reality is that the disorder can lead to severe […]

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