myalgic encephalomyelitis

The Struggle To Gain Adequate Care While Living With Myalgic Encephalomyelitis (ME)

Disability

    By Corina Duyn in ME Advocates Ireland.   I have been ill with Myalgic Encephalomyelitis (ME) for twenty years. But it is only in the past year, and more so in the past six months that my most basic needs are not being met, at a time when my illness has become more severe again […]

Invisible Disabilities: Just Because You Can’t See it Doesn’t Mean it’s Not Real

Invisible Illness

  From Healthy Living Facts.   Have you ever heard diseases like fibromyalgia called an “invisible disability?” Essentially, invisible disabilities are conditions that can’t be seen but still have serious effects on your ability to live a normal life. The term makes a distinction between conditions like cerebral palsy, where the effects of the disability are […]

What You Would See If You Looked Under The Blanket Of ME/CFS

Lonely

  By Ali in The Mighty. Sometimes I feel like I am lost, not as in aimlessly wandering and off the track, but as in missing and can’t be found. But I am here, under blankets. Much of the time I can usually be found under an actual blanket on the couch or in my […]

Care Charges Are Driving Disabled People Into Debt, Says Report

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  By John Pring in Disability News Service. Charging disabled people for their care and support is driving many of them into debt and forcing them to cut their spending on food or heating, according to new research by a network of disabled people’s organisations and their allies. The study by the Independent Living Strategy Group […]

This Is Personal: BHC’s Patient-First Perspective

Bateman Horne Center

  By Rachel Black in The Batema Horne Center.   Bateman Horne Center is guided by a board of directors that is intimately connected to ME/CFS and FM. Many have sons, daughters or are themselves managing an illness that has taken much of their life away. The Horne in Bateman Horne Most of you know that our […]

The Gut Microbiota At The Intersection Of Diet And Human Health

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  By Christopher L. Gentile, Tiffany L. Weir et al in Science.   Abstract Diet affects multiple facets of human health and is inextricably linked to chronic metabolic conditions such as obesity, type 2 diabetes, and cardiovascular disease. Dietary nutrients are essential not only for human health but also for the health and survival of the trillions […]

When I Can’t Hide My Chronic Fatigue Syndrome Anymore

ME

    By Kirsty Hird in The Mighty.   I remember in the late 1990s watching a film about a group of teenagers who dabble in witchcraft, with disastrous consequences. They use a form of magic called a “glamour,” which allows the witches to create an illusion, concealing the true form of something. In the film, glamours are used […]

Trial By Error: How To Avoid Ethical Review

David Tuller

  By David Tuller, DrPH I have written many posts about BMJ Open’s 2011 school absence study, which reported that school absence records could be useful in identifying children with chronic fatigue syndrome. However, for reasons not yet adequately explained, the investigators exempted the study from ethical review on the grounds that it qualified as “service […]

Woman In A Wheelchair Reveals Ordeal Of Simple Tasks Like Buying New Clothes

Wheelchair

  By Tanveer Mann in Metro.   Today is Purple Tuesday – and no, it’s not yet another day for crazy shoppers trying to bag a bargain. It’s actually pretty serious and is the first of its kind aimed at highlighting some of the challenges disabled people face while shopping. The national day was founded […]

Mother Of Disabled Girl Is Asking Shops To Stop Banning Single Use Plastic Straws

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  By Lucy Middleton in the Metro.   A mother with a disabled daughter is fighting for stores and restaurants to not ‘jump the gun’ when it comes to banning single use plastic straws. Karen Grimwade’s daughter Lucy, 15, was diagnosed with severe Myalgic Encephalomyelitis (ME) in 2015 and cannot drink without a straw. But […]

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 […]

Dear Bug… When The Nights Are Long…

Jessica

    By Jessica Taylor-Bearman. My escapades with the change of drugs reached fever pitch three weeks ago, when I rang up the doctors with a blood pressure of 80/50….The dearest junior doctor had told me or more like made me promise that if my blood pressure went under 90/60, that I’d ring for an […]

ME: What You And Your School Need To Know

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By ME Foggy Dog in Innovate My School.   Founder of ME Foggy Dog, ME advocate and ME sufferer. I have raised over £10k for ME research since 2014, and am now in the process of setting up a social enterprise that will offer ME training to healthcare, business and education professionals. I don’t ‘do’ […]

Humans of ME/CFS – Camille C.

ME !

  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, […]

The Triumph of Eminence-Based Medicine

Research Study

  By Brian Hughes in Not The Science Bit.   Lines are drawn A quarter of a million Britons have been diagnosed with myalgic encephalomyelitis (ME), the condition also known as chronic fatigue syndrome (CFS). ME/CFS is a severe debilitating illness that renders patients either temporarily or perennially immobile. Sufferers will have often led very active lives […]

When I Can’t Hide My Chronic Fatigue Syndrome Anymore

Lost

      By Kirsty Hire in The Mighty. I remember in the late 1990s watching a film about a group of teenagers who dabble in witchcraft, with disastrous consequences. They use a form of magic called a “glamour,” which allows the witches to create an illusion, concealing the true form of something. In the film, glamours are used […]

I Can Walk, But That Doesn’t Mean I Don’t Need A Wheelchair

Wheelchair

By Rebecca Giddings in The Mighty. Everyone knows when you are ill, you are in bed and can’t do anything. Obviously this example is great for someone with the flu, but what if you have a chronic illness, an illness that is going to last your lifetime? Are you supposed to just hide away in […]

On Autism & Chronic Fatigue Syndrome

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From Syndrome A.   When I was in second grade, a little girl started calling me Weird One. I was elated. I felt that I had been knighted with some sort of public identity and it felt wonderful. I felt as though I belonged in some way and I hardly ever felt as though I […]

Exposing The Deception: SEID Is Not ME!

ME

  By Gabby Klein in Relating to ME.   My thanks to advocate Eileen Holderman for her consultation on this blog post The US government health agencies and some organizations who purport to represent people with ME (pwME) are deceiving this community by purposefully conflating names and criteria for myalgic encephalomyelitis (ME), and the government constructs […]

The illness People Can’t See: Living With Chronic Fatigue Syndrome

Lost

  By Hannah Gibson in The Spinoff.   What is it like to have a disease that nobody can ‘see’ and which society can shame you for talking about? To mark International ME/CFS Awareness Day, Hannah Gibson writes about her experience with ME/CFS, and the struggle to have her condition legitimised in Western medicine. When […]

Health Benefits Of Seeds: Sesame, Pumpkin, Sunflower & Linseed

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    From SAGA Magazine. Seeds such as pumpkin, sesame and sunflower pack a powerful health punch and a quick look at their nutrient content will tell you why. Seeds contain high levels of essential fatty acids, the full profile of amino acids needed to form complete and digestible protein, plus vitamins A, B, C […]

Millions Suffer From An Invisible Disease: My ME/CFS Story

Ryan Prior

  By Ryan Prior in CNN Health.   yan Prior visited 16 doctors with various specialties to identify his illness. Ryan Prior is a cross-platform associate producer at CNN. He has suffered from chronic fatigue syndrome for 11 years. The views expressed in this article are solely his. Atlanta (CNN)Every morning, I shave, brush my […]

Carol Monaghan Continues Fight For Parliamentary Debate On ME

Carol Monaghan SNP

This is the text of an email I’ve sent to York MPs to gain support for a Parliamentary Debate on ME. We are entering an extremely crucial period where NICE are reviewing their guidelines to potentially remove the harmful Graded Exercise Therapy (GET) as a recommended treatment for this illness. They are however loading their […]

Grandma With Severe Chronic Fatigue Syndrome Misses Daughter’s Wedding And Grandchildren’s Childhoods

ME

  By John Siddle in Surrey Live. The cruel condition affects 250,000 people in the UK. An 80-year-old from Farnham has had to skip every family gathering, birthday and Christmas over the past 20 years after a shock diagnosis of a devastating ‘living death’ illness. Nancy Collins a former NHS nurse was struck down with Myalgic Encephalomyelitis (ME) 20 […]

Playing Nice With NICE

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  From Dizzy Girl Writes.   In view of my last blog post, I have decided to email NICE to talk about my experiences of having ME under the current guidelines and to raise my concerns about their panel. The latest tweets I’ve seen suggest that their panel for the review of guidelines for treating […]

ME/CFS, Naviaux’s Cell Danger Response And A Nervous System Under Threat

Nervous system

    By Veronique Mead M.D. in Health Rising.   Thanks again to Veronique for providing her intriguing take on chronic fatigue syndrome (ME/CFS). This is one of a series of articles from Health Rising which feature hypotheses created by health care professionals with ME/CFS or who are associated with ME/CFS. (It is a long post – you […]

A Continuing Saga Of Ineptitude

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From Invest In ME Research.   Comment After failing ME patients for so many years with their guidelines, and despite being taken to a judicial review (by patients), and despite the NICE guidelines director seeming to admit that the current guidelines were unfit for purpose, NICE were able to begin afresh and really concentrate on […]

Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review

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  By Mark Vink and Alexandra Vink-Niese in Health Psychology Open.   Abstract The analysis of the 2017 Cochrane review reveals flaws, which means that contrary to its findings, there is no evidence that graded exercise therapy is effective. Because of the failure to report harms adequately in the trials covered by the review, it cannot […]

When You’re Stuck In The Middle Of ‘Sick’ And ‘Well’

Lonely

  By Cherilyn Schutze in The Mighty.   Stuck in the middle of sick and well. That’s how I feel. Chronic illness is never easy, whether you are the person who’s sick, or the caretaker or family member of a person with a protracted illness. Before I became ill, I was very busy multi-tasking, care-taking, mothering, wife-ing, and […]

Does The Microbiome And Virome Contribute To Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ?

Microbiome

  By Fiona Newberry, Shen-Yuan Hsieh, […], and Simon R. Carding in  www.ncbi.nlm.nih.gov. Additional article information Abstract Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) (ME/CFS) is a disabling and debilitating disease of unknown aetiology. It is a heterogeneous disease characterized by various inflammatory, immune, viral, neurological and endocrine symptoms. Several microbiome studies have described alterations in the […]

The Care Home Fee Trap

Author-PaulLewis

  By Paul Lewis in SAGA Magazine.   The fear of having to sell a home to pay for care is being exploited by commercial firms offering risky schemes to shelter homes from means-testing. Don’t fall for them. There are other, perfectly legitimate ways to preserve the value of a family home. When someone moves […]

Forty-One International Scientists Have Signed A Declaration Supporting Cochrane’s Decision To Withdraw Its Controversial Review Of Exercise Therapy In ME/CFS

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  From Not The Science Bit.   And I’m one of them. This is important not least because of claims appearing over the weekend that Cochrane pulled its controversial review due to pressure from brain-addled trouble-making “patient activitists,” rather than for scientific reasons. Claims that Cochrane had been harassed were made not by Cochrane themselves, but, […]

Finding Accessibe Work With A Chronic Illness

Pippa

From The Life of Pippa Blog.   So, let’s talk about working with a chronic illness. Since I started blogging, there’s one question I’ve consistently been asked more than any other: how I got my flexible, work from home job. If you don’t already know, I split my time between employment with a well-known UK […]

A Statement In Support Of Cochrane

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  From the Virology Blog. Cochrane has decided to temporarily withdraw a review of exercise therapies for the illness variously known as ME, CFS, ME/CFS and CFS/ME. The review reported that exercise therapy is effective in treating the illness—a finding that has provided unwarranted support for recommendations that patients should undergo the intervention known as […]

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