ME Support and Awareness in York – The York ME Community

Cutting Disability Services Doesn’t Save Money. But It Does Damage Lives

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By Frances Ryan in The Guardian.   In times of deep inequality and shrinking services, politics is often framed like a David and Goliath battle. You see it in the mothers who this week challenged the London developers trying to stop their “social housing kids” playing in segregated play areas. Or the teachers and parents in Cambridge marching against […]

About Ian Rudd

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  From All About M.E.   My cousin Ian Rudd died in April 2018. Paramedics were called in the early morning and were unable to resuscitate him. This is an edited version of a blog I wrote for severe ME Day in 2015 while Ian was still alive. He suffered from a cruel disease called […]

DWP Admits Destroying Report On Safety Failings In Jobcentres

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      By John Pring in Disability News Service.   The Department for Work and Pensions (DWP) destroyed a damaging internal report about its failure to ensure the safety of benefit claimants in jobcentres, preventing it being released under freedom of information laws. The report into safeguarding failures in south London jobcentres was written […]

When Children Don’t Get Well

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From Utting-Wolff Spouts.   When children don’t get well, when there is no adequate treatment, and they remain ill, we need to step in and fight for their right to be part of society. When children don’t get well, time passes by, sometimes like treacle, sometimes quickly,  with the realisation that another school year has whipped […]

When Chronic Fatigue Syndrome Feels Like An Energy-Sucking Vampire

Lost

    By Caitlin Phillips-Peddlesden in The Mighty.   Chronic fatigue syndrome (CFS) fatigue. The invisible illness vampire. The blood- (or energy-) sucking beast ever at your shoulder, teeth in your neck. CFS fatigue is invisible. Many people with CFS have no visibly discernible symptoms. Only the bags under our eyes point to the constant torture people […]

Hidden Disabilities – Heathrow’s Sunflower Lanyard

Air Travel

    From Heathrow.com.   At Heathrow we understand all passengers are unique and we offer different levels of support tailored to your needs. For a hidden disability such as autism, dementia or anxiety, help is always at hand at the airport. If you would like to book assistance just let your airline know 48 […]

GET And CBT Are Not Safe For ME – Summary Of Survey Results

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    By ME Action Network UK.   Topline findings A new patient survey of 2274 respondents has confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME report that cognitive behavioural therapy (CBT) led to no change in their […]

Mitochondrial Complex Activity

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  From ME Research UK. Cara Tomas and colleagues from Newcastle University have recently published a report on mitochondrial function in ME/CFS, and this study is related to research on muscle fatigue they are currently pursuing with support from ME Research UK. The mitochondria are considered the power plants of the body, generating the energy needed to […]

B-Lymphocyte Depletion In Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Randomized, Double-Blind, Placebo-Controlled Trial

Research Study

    From Annals of Internal Medicine.   Abstract Background:Previous phase 2 trials indicated benefit from B-lymphocyte depletion in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Objective:To evaluate the effect of the monoclonal anti-CD20 antibody rituximab versus placebo in patients with ME/CFS. Design:Randomized, placebo-controlled, double-blind, multicenter trial. (ClinicalTrials.gov: NCT02229942) Setting:4 university hospitals and 1 general hospital in […]

Massive Increase In Cyber Crime In York

Cyber Crime

  By Chloe Laversuch in YorkMix.   Cyber crime in York has increased by nearly 85 per cent in the past year – because it is seen as a wealthy area with “less tech-savvy” residents, according to police. Assistant chief constable Ciaron Irvine told a meeting that there has been a “significant increase” in scams – particularly […]

To People With Invisible Illnesses, From A Paramedic Who Didn’t Believe You

Invisible Illness

  By Ashley in The Mighty.   I’ve been a paramedic on and off for 10 years now. I’ve seen the good and the bad — probably more bad than good, but I’ve opened my eyes to something different. I’ve seen people in Facebook groups post about how health care professionals treat people with invisible illnesses poorly because they […]

Top Tips For Accessible Air Travel

Airport

    By Carrie-Ann Lightly.   Air travel for a disabled person can be difficult, and daunting, but with the right information and planning it can be done. Here are my tips to help your flight go smoothly, so all you have to worry about is enjoying your holiday!   Mobility Equipment If you need […]

Naidex 45

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  From the Two Doughnts blog. on tuesday i travelled to birmingham nec for naidex. it’s a yearly convention for all things disabled. or as i like to call it – all things i can’t afford. i felt right at home of course with all my wheelchair homie’s rocking up for the occasion. it was […]

Manchester Airport Disability Service Left Woman ‘Humiliated’

Air Travel

    From BBC News.   A woman with chronic fatigue syndrome has accused Manchester Airport of treating her like “cargo” and “cattle” following a long-haul flight. Jessica Stafford, 29, booked a special assistance service as she needed help to move through the airport. But she found the experience “distressing” and “humiliating” after being asked […]

Energy Suppliers Install Almost Five Million Smart Meters At Risk Of ‘Going Dumb’

Smart-Meters

  By Sam Meadows in The Telegraph.   Energy firms last year installed almost five million smart meters vulnerable to “going dumb” ahead of a looming deadline to switch to updated devices, figures reveal. Latest government statistics on installations of the meters, which aim to help households control energy usage by displaying real-time costs in […]

Medscape’s Chronic Fatigue Syndrome (ME/CFS) Program Reaches Deep Into The Medical Community

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By Cort Johnson in Health Rising.   With its regular news updates, information on drugs and diseases, quizzes, conference overviews, and educational courses, Medscape, which just turned 20 years old, strives to be a kind of one-stop shop for medical professionals (and consumers). It appears to be succeeding. Producing dozens of news stories a day, […]

Chronic Illness: Aren’t You Glad It Isn’t Worse ?

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  From The Brainless Blogger.   Okay, so stop telling people it could be worse. Yeah. It could be worse. It can always be worse. But it sure as hell could be better. We are aware it could be worse. We tell ourselves this sometimes to get through. Hell, sometimes worse happens and we are […]

The Difference Between ‘Rest’ And ‘Bad’ Days For My Chronic Illness

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    By Amy Saunders in The Mighty.   Living with an illness is hard. It means being ill. It means constant worry that you’re going to be ill. And it means your life is spent managing your illness to avoid being ill. You can have days when you feel on top of the world […]

Things I Wish I Knew Before I Bought My First Powerchair For Chronic Illness

Natasha Lipman

    By Natasha Lipman.   It took me a long time to come to terms with deciding to become a wheelchair user, but when I knew that I was ready it was like a switch flicked in my brain. For the first time in years, I had a ‘real job’, and even the few […]

Five Things To Consider Before Speed Limiters Are Added To Cars

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    By John McDermid in The Conversation.   The recent announcement that EU rules for fitting speed limiters to new cars from 2022 will be adopted by the UK was welcomed by many, including the European Transport Safety Council, as a move that will save lives. However, not everyone is convinced by this “guardian angel” technology. […]

If Your Chronic Illness Is Making You Want to Give Up

Frustration Chronic Illness

  By Candida Reece in The Mighty. Having a chronic illness can mean life can be rough. It means going to the store with only one sock on because you didn’t want to go through the pain to find the other one; or maybe your shirt is inside out, or you have two different shoes, or clothes […]

Migraines And Other Headaches In Fibromyalgia And Chronic Fatigue Syndrome (ME/CFS)

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  By Brent Wells in Health Rising.   If you’ve ever suffered from any type of headache, you know that there is nothing funny about them. However, because migraines and headaches are not fatal and often do not result in permanent disability for most, their importance to public health has long been understated. This is […]

Trial By Error: The CDC’s Pathetic Response To Reuters

David Tuller

    By David Tuller, DrPH The recent Reuters article about the illness, or cluster of illnesses, variously called CFS, ME, CFS/ME and ME/CFS was problematic for many reasons. One of them was the information included from the US Centers for Disease Control and Prevention. In explaining why the CDC dropped its longstanding recommendations for […]

5 Reasons We Should Never Assume Someone Isn’t In Pain

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      By Christina Carrell in The Mighty.   I was sitting in one of those canvas painting classes, waving a paintbrush back and forth in a very amateur attempt to recreate Monet’s “Bridge Over a Pond of Water Lillies” (spoiler: I’m not an artist and the end result bore little resemblance to the […]

CDC The Puppeteer And The UK BPS Connection To Bury ME

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By Gabby Klein in Relating to ME.   Fake Media Attacks on #PwME In the past week, there has been a media onslaught of biased and stinging articles maligning 17 million disabled men, women and children worldwide who suffer from the acquired neurological and immunological disease myalgic encephalomyelitis (ME).  The false media stories about the […]

Mike’s EU Marathons- Cyprus (17.03.19)

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  By Mike Harley. After 6 months since Sofia, I arrived in Cyprus for number 20 after 60 training runs and 400 miles of winter training to kick off year 5 and the first of six marathons in 2019.  Heading into the race I’d run my fastest ever Half Marathon (1 hr 40 in Gloucester) and raised […]

15 Things People With Chronic Illness Mean When They Say ‘I Don’t Feel Good’

Frustration Chronic Illness

  By Veronica Vivona in The Mighty.   Many of those with chronic illness may be used to saying they’re “good” or “fine” when it comes to how they’re feeling. It doesn’t always mean they’re actually good or fine though. It might just be what they’re portraying to the world. They may do this for a variety of […]

Extra Costs With A Disability

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  From Scope.   Life costs more for disabled people and their families. Spending more on essential goods and services like; heating, insurance, equipment and therapies. These extra costs mean disabled people have less money in their pocket than non-disabled people, or simply go without. Therefore, disabled people are likely to have a lower standard […]

Video: York Spitfire Pilot To Get A Hero’s Funeral 74 Years After Being Shot Down Near Venice

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  From YorkMix.   A York war hero who was killed when his Spitfire was shot down over Italy is to finally be laid to rest 74 years later – after archaeologists discovered his body. John Henry Coates, 24, took off in one of six RAF Spitfires from 111 Squadron from Rimini Airfield on March […]

Hull Mum: ‘Horror Illness Has Left My Body Feeling Like An 80-Year-Old’s – But No-One Believed Me’

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  By Anna Riley in Hull Live. A Hull mum has spoken of her battle with a health condition people believed she did not have. Nicola Meekin, 39, from Hull, became ill nine years ago when she started suffering from a bad chest infection. But instead of getting better, her sickness worsened. To Mrs Meekin, it felt like […]

Experimental Blood Test Accurately Spots Fibromyalgia

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  By Misti Crane in Ohio Stae News.   For the first time, researchers have evidence that fibromyalgia can be reliably detected in blood samples – work they hope will pave the way for a simple, fast diagnosis. In a study that appears in the Journal of Biological Chemistry, researchers from The Ohio State University report success […]

Big Gods Came After The Rise Of Civilisations, Not Before, Finds Study Using Huge Historical Database

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    By Harvey  Whitehouse et al in The Conversation.   When you think of religion, you probably think of a god who rewards the good and punishes the wicked. But the idea of morally concerned gods is by no means universal. Social scientists have long known that small-scale traditional societies – the kind missionaries used to […]

Why ME, Or Yuppie Flu, Is Like Aids Was Once – Misunderstood Or Dismissed As Not Real, And Ignored By Most Doctors

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By Anthea Rowan  in The South China Morning Post.   Twenty million people suffer from myalgic encephalomyelitis, yet there is still no test for it, nor any approved treatment. We talk to a mother whose daughter has the illness, and who has consulted dozens of doctors in search of help. Until my friend Caroline introduced me […]

Which Painkiller ?

Painkillers

  From NHS Choices.   The type of medicines that you need to treat your pain depend on what type of pain you have. For pain associated with inflammation, such as back pain or headaches, paracetamol and anti-inflammatory painkillers work best. If the pain is caused by sensitive or damaged nerves, as is the case with shingles or sciatica, it’s usually treated with tablets that […]

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