Blogs

Brain Studies Show Chronic Fatigue Syndrome And Gulf War Illness Are Distinct Conditions

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    By Karen Teber in Georgetown University Medical Center News.   Gulf War Illness (GWI) and chronic fatigue syndrome (CFS) share symptoms of disabling fatigue, pain, systemic hyperalgesia (tenderness), negative emotion, sleep and cognitive dysfunction that are made worse after mild exertion (postexertional malaise). Now, neuroscientists at Georgetown University Medical Center have evidence, derived […]

7 Ways To Survive A Flare When You’re Chronically Ill

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    By Toni Bernhard J.D. in Turning Straw Into Gold.   Part of living day-to-day with chronic illness (which includes chronic pain) is learning to cope with a flare in symptoms. Even though my parade of symptoms tend to be relentlessly the same, at times they flare and can even feel out of control. Here are […]

From Infectious Disease Specialist To ME/CFS Expert: Dr. Bela Chedda Talks

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    By Cort Johnson in Health Rising.   I met Dr. Chheda of the Center for Complex Diseases at Ron Davis’s Working Group Meetings funded by the Open Medicine Foundation. She graciously agreed to talk more about how she approaches treating ME/CFS in her practice. I was particularly eager to talk to one of the younger […]

Fear Of The Unknown – Leaving My Protective Cocoon

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  By Jo Moss in A Journey Through The Fog.   I have a hospital appointment coming up. It’s for a painless, straightforward heart scan (Echocardiogram) as a follow-up to my recent heart problems. Now this would be a simple activity for a healthy, able-bodied person but for someone with a disabling chronic illness like […]

After I Revealed Whitehall Plans To Deceive The Public On Universal Credit, An Investigation Began. Its Conclusions Are Shocking

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By Aditya Chakrabortty in The Guardian.   Early this summer, a national newspaper published a string of curious articles. Under the logo Universal Credit Uncovered, the features promised readers of the Metro the truth about this most notorious of all benefits. The series began with a giant advert wrapped around the cover of the paper, coupled […]

The Suffering Of One Of Us Is The Story Of All Of Us: Pt I – REELing

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    By Kyle McNease in Health Rising.    (Kyle’s story of going from abundant health to a very severe case of ME/CFS, and then, when all looked bleakest, back to relative health, almost defies description. The length of his narrative, the elegance and directness of his writing, even the difficulty it sometimes presents, makes it unique […]

Using A Heart Rate Monitor To Prevent Post-Exertional Malaise In ME/CFS

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    By Susan L. Jackson in ProHealth.   One of the identifying characteristics and key symptoms of ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) is an intolerance to even mild exertion, known as Post-Exertional Malaise or PEM. In simple terms, this means that when people with ME/CFS engage in activity – even just walking […]

CPS Concern Over Huge Drop In Police Disability Hate Crime Cases

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    By John Pring in Disability News Service. The Crown Prosecution Service has joined a leading disabled campaigner in raising concerns about a huge fall in the number of disability hate crime cases passed by police forces to prosecutors. The Crown Prosecution Service (CPS) annual hate crime report for 2018-19 revealed this week that […]

Essentials For Getting Out And About As A Wheelchair User

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    By Soph in Mummying and M.E.   Out on a shopping trip recently with a good friend, she suggested I put together a list of the things I’ve learnt to be essential when getting out and about. You see I’ve always been fiercely independent, not thinking twice about the ability to leave the […]

Inside The Isolation Caused By ME/CFS Hypersensitivity

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    By Jo Moss in A Journey Through The Fog.   I find hypersensitivity one of the hardest ME/CFS symptoms to cope with as it can be so isolating. Hypersensitivity comes in many forms: hypersensitivity to light, touch, noise, smells, vibrations, foods, medication, chemicals, heat, cold and irritants like pollen and dust. All of […]

Emerging Insights #1: McGregor’s Grand Conception Of ME/CFS

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By Cort Johnson in Health Rising.   This is the first in a series of blogs that report on the recent EMERGE conference in Australia. The different conference format – which allowed for long presentations – allowed the presenters to dig more deeply into their topics than usual. Longtime Australian metabolomics researcher Neil McGregor took […]

What Does ‘Listen To Your Body’ Mean When You Have M.E ?

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  From ME Action.   So I’ve been doing this fundraiser, where I try to get 1000 body weight reps done in half an hour every day to raise money for #meaction. It’s been a test for me in listening to my body, and knowing when to slow down, rest, or even skip a day. And it […]

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 […]

The Exercise Intolerance In ME/CFS – Is it Unique ?

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By Cort Johnson in Health Rising. Just about everyone with chronic fatigue syndrome (ME/CFS) has the sense that the disease has an astonishing ability to fall through the cracks. It’s a major disease that affects around a million people in the U.S. yet gets very little funding. It has no home at the NIH; it […]

Aids And Equipment For Managing Fatigue

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        By Pippa, in Life of Pippa.   [AD] This piece is sponsored by CareCo Ltd and features affiliate links. More information can be found at the bottom of this post! Something that comes up a lot in conversation is how I negotiate living independently whilst dealing with long-term chronic fatigue. And whilst that’s […]

Beneath The Surface, Part 2

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    By Naomi Whittingham in A Life Hidden.   In Part 1, I highlighted some positive aspects of the BACME guidelines, as well as giving an overview of my concerns. Here, in Part 2, I look more closely at the guidelines’ focus on deconditioning and graded exercise therapy (GET), as well as their failure to address […]

Trial By Error: Bristol’s Report Due Soon; Slides From My Oxford Talk

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  By David Tuller, DrPH A day of reckoning could be coming for Bristol University and Professor Esther Crawley, the ethically challenged pediatrician whose work has come under official scrutiny (that is, under scrutiny from people with greater authority than me) on multiple fronts. According to the Health Research Authority, the National Health Service unit […]

Why We Shouldn’t Test Our Physical Limits To Make Others Feel More Comfortable

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  By Heidi in The Mighty.   Whenever I am scrolling through chronic illness forums online, I usually come across posts about mobility aids. Having postural orthostatic tachycardia syndrome, or POTS, I understand what it feels like to use mobility aids in public without an obvious physical disability. “But you don’t look sick.” “Are you […]

SEID Is Killing ME

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  From ME Advocacy.   Advocating in the United States for the disease myalgic encephalomyelitis (ME) has reached a new challenge that threatens the very core of the recognition for the disease. While some advocacy organizations have diverged and taken the alarming path of partnering with the US Health and Human Services (HHS) in adopting, […]

Fibromyalgia And Chronic Fatigue Syndrome: The Gap Widens

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  By Cort Johnson in Health Rising.   The similarities are striking: the symptoms, the shoddy research funding, the poor treatment from doctors, the gender imbalance and the stigma both still face. Both diseases still really exist on the fringes of medicine and medical research. Yet one disease is moving forward rapidly and the other […]

My Disabled Body Is Not A ‘Burden.’ Inaccessibility Is

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      By Aryanna Falkner in Healthline. I discovered my love for literature and creative writing during my senior year of high school in Mr. C’s AP English class. It was the only class I could physically attend, and even then, I usually only made it once a week — sometimes less. I used […]

My Story

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    From Mummying and M.E.   I used to be healthy (ish!) Full of energy. I used to think nothing of working a 10+ hour day, 5 days a week, going to a 2-hour rehearsal twice a week after work, and most other nights going for a drink or 2 at the local. Weekends were spent […]

Why Friendships Can Be Difficult With A Chronic Illness

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    By Jo Moss in The Mighty.   There is a saying that goes, “It’s amazing how chronic illness turns friends into strangers and strangers into friends.” Maintaining friendships can be difficult for those of us with chronic illness. It may be hard for friends to understand the challenges we face, and the limitations our ill-health places on […]

The Never-Ending Challenge Of Dealing With Post-Exertional Malaise (PEM)

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  From the Not Just Tired Blog.   After a good day, or a spell of feeling pretty ok, it’s always a kick in the teeth when Post-Exertional Malaise (PEM) catches up with you. As I’m sure those of you living with ME/CFS, will be all too familiar with. For those not familiar, PEM is […]

Molecules May Convert Acute Infection Into ME

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      By Sasha Nimmo in ME Australia.  A paper published in Metabolic Brain Disease by Morris, Maes, Burk and Puri suggests Myalgic Encephalomyelitis develops because of genes responsible for immune responses. Their paper discusses how molecules may convert an acute infection into a state of escalating chronic systemic inflammation. Morris and Maes have written extensively […]

Unsolicited Health Advice Is Intrusive & Invalidating – Please Stop

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    By Jo Moss in A Journey Through The Fog.   Everyone living with a chronic illness has had to deal with unsolicited advice about their health. Whether it’s from strangers on social media or from well-meaning friends and family, uninvited advice is a frustrating part of living with an incurable chronic illness. It’s […]

The Cure For Toxic Positivity

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  By Rebecca Renner in Forge.   When my dad was diagnosed with colon cancer at age 52, I was flooded with emails, calls, and in-person pep talks from friends and acquaintances. Anyone who’d ever met me, it seemed, was eager to offer up a platitude. “Think positive,” they told me. “It will be okay. […]

David Tuller On Exposing The Bad Science Behind The Biopsychosocial Effort To Define ME/CFS

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    By Cort Johnson in Health Rising.   “…many of these people spout nonsense and then freak out when confronted with facts or details about the research that they can’t explain away.” David Tuller David Tuller is a unique figure in the ME/CFS universe. A reporter and editor for the San Francisco Chronicle, Salon and […]

18 Myths & Misconceptions Of Post-Exertional Malaise #PEM In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

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  By Dr Mark Guthridge in Thread Reader.   #PEM (aka PENE, “flare” or “crash”) is seriously debilitating symptom caused by exercise #SickNotWeak #SickNotTired #pwME #chronicillness #medtwitter #MedEd 1. #PEM is just tiredness No #pwME experience <pathological> fatigue after #exercise which can be long-lasting and includes debilitating fatigue, flu-like symptoms, cognitive impairment, #sleep disturbance   To read the rest of this story, click on the link below:   Link […]

Living With An Unsociable Illness

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  From the Not Just Tired Blog. As I’m writing this post, I’m sat in bed, having to take time out to rest, whilst we have a family member staying with us for the weekend. Enjoying listening from afar to the lively chatter, yet not a part of it. Would I not rather be downstairs, chatting […]

The Power Of Listening

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    From A Life Hidden. In September 2016, I contributed to a training course for junior doctors at my local hospital.  The following was used as part of a seminar entitled “Patients and doctors as partners in learning”.  I used the term ME/CFS for this piece, as this is how ME is known within the NHS. […]

I Sometimes Feel Defeated By My Disability – And That’s Okay

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By Pippa in HUFFPOST.   Last month, Sport England and a number of partnering charities launched a new campaign aimed at people living with long-term health conditions. We Are Undefeatable, they called it – making a statement on behalf of the millions of people living with these illnesses in the UK. As a member of the […]

Changing The Narrative #4: The QMUL Judgment Explained And Some Observations On Feedback

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      By Valerie Eliot Smith.   The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  “Institutional abuse is the maltreatment of a person…….from a system of power.” “Changing the narrative” was originally planned as a series of three posts which explored several different aspects relating to the […]

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