ME Support and Awareness in York

Disgraced PIP Assessor Escapes Being Struck Off

Capita

  By John Pring in Disability News Service.   A disgraced former disability assessor and paramedic has avoided being struck off, despite a tribunal concluding that he made offensive remarks about disabled benefit claimants. Alan Barham was sacked by the government outsourcing giant Capita last year after being exposed by an undercover reporter working for […]

I Live With Disabling Illness And Chronic Fatigue. It Has Taught Me To Ask For Help.

Help

    By Litsa Dremousis in The Washington Post. Remember the last time your WiFi went out? How you felt alone in an empty world? You tried to restart it yourself, to no avail. Then you called tech support, which was as helpful as pouring glue down a clogged drain. You were baffled that no one […]

One In Seven GP Practices In England Failing On Safety

Doctor

    By Patrick Greenfield in The Guardian.   About 7 million people are being treated at GP surgeries in England that have severe safety problems, according to the first performance review of its kind by the Care Quality Commission (CQC). One in seven GP practices are failing on safety, even after CQC inspectors have told them […]

NICE Agrees To Re-Visit Guidelines On Treatment Of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

NICE logo

From The National Institute For Health And Care Excellence.   Surveillance report 2017 – Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (2007) NICE guideline CG53.   Surveillance decision. Reason for the decision   We will plan a full update with a modified scope of the guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (NICE guideline […]

#MEAction Rejects The Findings Of The SMILE Trial Of The Lightning Process For Chronic Fatigue Syndrome

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    From #MEAction.   Trial Uses Flawed Methodology That Can Lead To False Positives Following the release of the results of the SMILE trial, Ben HsuBorger of ME Action said: “The SMILE trial of the Lightning Process, a known quack treatment, for ME/CFS, used unblinded treatment coupled with subjective, self-report outcomes. It illustrates that such serious […]

As Summer Ends, A Warning To NIH

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  By Adriane Tillman in #MEAction.   Johanna Kaiser, a person who has had ME for decades, sent this open letter over Labor Day to Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke (NINDS) and Dr. Francis Collins, director of National Institutes of Health (NIH). Staff member Adriane Tillman only posted the article.  Dear Dr. Walter Koroshetz and […]

Do You Have Chronic Fatigue Syndrome ?

Chronic

    By Edmund O. Lawler in Next Avenue.   Despite a profound and persistent fatigue that struck when he was 40 and lasted through his 50s and into his 60s, Leonard Jason, a psychology professor at DePaul University in Chicago, is a remarkably productive scholar at 68. He has published 700 scientific articles and has written or […]

5 Unrealistic Expectations About Pacing That Can Hurt Our Health

Pacing

    By Kels Invisible-Warrior in The Mighty.   They say the key to happiness, sustaining our lifestyle and managing pain is to simply pace ourselves. We have all been in a place in our lives where pacing our actions would benefit us. Whether it be because we had the flu, were pregnant, broke a leg or we were just too stressed […]

Have You Been Unable To Shop Due To Poor Accessibility ?

Accessibility

    By Lottie Jackson in The Guardian.   We want to hear from less-abled people who have experienced difficulties with poor access when shopping in high-street or luxury fashion stores. Britain’s 11.9 million disabled people represent a potentially large untapped consumer market with a perceived spending power of £80bn, yet many clothes shops are completely […]

UK Slammed For Media Portrayal Of People With Disabilities

Disability

  By Catholic News Agency.   A United Nations committee addressing the rights of disabled people has rebuked the U.K. for how people with disabilities are portrayed by the government and seen in the media, with one expert expressing concern for attitudes which may lead to euthanasia. “Disabled people being portrayed as parasites, living on social benefits, and […]

What Should I Do When Someone Tells Me to Exercise ?

Exercise

  By Sleepy girl in her ‘How To Get On’ Blog.   Many people with ME and Chronic Fatigue Syndrome are told by their doctors that exercise will help them. This is often called “Graded Exercise Therapy,” though some doctors doctors will simply recommend “exercise”. Some people are also advised to exercise by their loved […]

PIP: The Truth Is Out

benefits

  By Mik Scarlet in HUFFPOST.   On April 2013 the government introduced the Personal Independence Payment, a new so called “disability benefit” which would replace Disability Living Allowance. DLA itself was introduced in 1992, when the existing Mobility Allowance, which helped disabled people with the financial cost of getting around, and Attendance Allowance, designed to […]

Changing Hearts And Minds: A Review Of Unrest

Jen Unrest

  By Cort Johnson in Health Rising.   Unrest is about to spring into action. Scheduled to go into widespread theatrical release in dozens of theaters over the next couple of months: on Sept 22nd in the U.S. and Oct. in the U.K., Unrest is about to really make its mark. Jen Brea and her […]

New Research Sheds Light On The Mystery Of Chronic Fatigue Syndrome

Chronic

    By  Megan Ray Nichols in Interesting Engineering.   A recent discovery may help doctors figure out a new way to treat chronic fatigue syndrome, a medical condition that affects up to 2.5 million people in the United States every year.   Chronic fatigue syndrome, or CFS, is a medical condition that affects up to 2.5 million people in […]

What Would You Do If You Had A Horrible Disease That Doctors Could Not Cure ?

Lonely-man

  By Liisa Lugus in Quora. I have a horrible disease that doctors can’t cure. It’s called Myalgic Encephalomyelitis. I have a profoundly severe form that has left me paralyzed for 9 months (and then for shorter periods), mute for longer, unable to read/use computer/listen to music for 6 years or to have any one […]

Worse Than The Disease

GET

  A case study of Graded Exercise Therapy from UNDARK.   After living in Oklahoma for 40 years, Nita and Doug Thatcher retired in 2009 to the Rust Belt city of Lorain, Ohio, a Cleveland suburb that hugs Lake Erie. When Nita needed to find a new primary care doctor, a friend recommended someone from the Cleveland […]

‘But You Don’t Look Disabled ?’ What Living With An Invisible Disability Is Really Like

Invisible Illness

  By Mared Parry in The Tab.   I shouldn’t have to prove I’m disabled by showing my scars If you were sat opposite me on the train or if you looked at my Instagram, you’d never guess I’m disabled. You’d never guess I had major surgery three weeks ago, or that I’ve been having […]

Glial Cell Inhibitors: The Next Sleep Drugs For Fibromyalgia And Chronic Fatigue Syndrome (ME/CFS) ?

brain-power

    By Cort Johnson in Health Rising.   Sleep disturbances and severe stress as glial activators: key targets for treating central sensitization in chronic pain patients? Jo Nijs,Marco L. Loggia,Andrea Polli,Maarten Moens,Eva Huysmans,Lisa Goudman, Expert Opinion on Therapeutic Targets  Volume 21, 2017 – Issue 8 . The interplay between central sensitization (pain originating in the central nervous […]

The Real Story About Chronic Fatigue Syndrome

Chronic

  By Eric Ries in PTinMotion.   Chronic fatigue syndrome (CFS) has come a long way since the 1980s, when it was widely dismissed as “yuppie flu” and was suspected by many health care providers of being a psychological rather than a physiological condition. (A note on terminology: CFS goes by at least 3 names, […]

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