Firstly, let me just say that The York ME Community is not a charity. I will not be asking you to put your hands in your pockets for cash. What I believe we need so much more at the moment is awareness of the illness and for that we need people who are learning about ME and therefore able to tell others. There are ME charities, and if in the future you or your business wish to do a charity run or whatever in aid of ME, I will happily help and support that aim.
Tired All The Time
By Deborah Mckno in ME Support. From seventeen years old, I was told by doctors, “You are just run down”. I had constant infections, viruses and chronic tonsillitis. Feeling as though I always had the flu, I’d visit my General Practitioner, who prescribed more antibiotics, stating that I needed to be on […]
My Letter To The BMJ Regarding Their Lax Editorial Approach To Bogus Therapy Paper
By Brian Hughes in The Science Bit. Here it is. I think it is pretty self-explanatory (nonetheless, I have added some additional context below the fold): For context, my email is part of a now lengthy correspondence following an Open Letter to the BMJ arising from the correction of the ‘Lightning Process’ paper. I […]
A Reflection Of ME
A REFLECTION OF ME I thought I was being followed Maybe being stalked I saw him running in the park As I just slowly walked I saw him through the window I saw him in the crowd Full of cheer, having a beer, In that pub that’s now too loud I saw him at […]
My Life With M.E. – Exploding The Myths
by Chrissy Russell. Myalgic encephalomyelitis (M.E.), chronic fatigue syndrome (CFS), Yuppy Flu, post-viral fatigue syndrome (PVFS), chronic fatigue immune dysfunction syndrome (CFIDS), systemic exertion intolerance disease (SEID)… The list goes on. Each decade has seen a new name, but the erroneous perception of it remains the same. The Word Health Organisation classifies the disease as Myalgic […]
Don’t Assume I Have A Carer Just Because I’m Disabled
By Samantha Renke in The Metro. Sometimes people ask me if I have a carer – a question which I find highly inappropriate, ableist and offensive. Still, let’s clear this up: I live alone in London, but I do have a young woman who works for me. I don’t call her a carer, […]
Drinking A Little Whiskey Might Actually Help Relieve Cold Symptoms
By Kate Bratskeir in The Huffington Post. There’s no real cure for the common cold, but a little bit of whiskey or bourbon (that’s a little bit, we said) could offer some relief. The classic hot toddy, typically made of whiskey, honey, lemon juice and hot water, can subdue the injustices of your inevitable winter cold. The hot […]
Did A Pivotal Moment For ME/CFS Just Happen ?
By Cort Johnson in Health Rising. The National Institutes of Health (NIH), with its pitiful funding, has been a thorn in the ME/CFS community’s side for decades. For decades advocates have thrown everything they could – heartbreaking stories, demonstrations, insults – at the NIH in vain. Even the much acclaimed 2015 […]
Dietary Advice For Bedbound ME/CFS Patients: Protein
By Dr Courtney Craig. Dietary protein requirements for the average person are about 0.8g/per kg body weight/day per the U.S. and European standards. That equates to about 67-114g per day for men, and between 59-102g per day for women. Adequate dietary protein allows for: Repair of tissues and cellular proteins: a […]
16 Everyday Tasks, And What They Feel Like For A Person With Chronic Fatigue
By Paige Wyant in The Mighty. One of the most common (and frustrating) symptoms those with chronic illness face is chronic fatigue: an overwhelming sense of exhaustion that can be debilitating, and is much different than “just being tired.” (It’s also different than chronic fatigue syndrome/myalgic encephalomyelitis, a separate illness with its own set of symptoms.) […]
How Social Media Helps Shield Me From The Social Isolation Of Being Sick
By Amber Blackburn in The Mighty. When it comes to social media, we often hear about the negative aspects of each platform –like the fact that social media is full of highlight reels rather than what’s actually real. We only get to see what influencers choose to show us, which is usually only the […]
Thousands Of Studies Begin To Paint New Picture Of Chronic Fatigue
By HEATHER GOLDSTONE & ELSA PARTAN in Cape and Islands. Chronic fatigue syndrome was first described in the early 1980s, and it affects an estimated two and a half million Americans. For many years, doctors’ tests couldn’t find an explanation for patients’ symptoms, so they were dismissed as “nothing wrong.” But a growing body of research reveals […]
York-Based GP Service Doc-OneStop Put Patients At ‘Risk Of Serious Harm’
By Ed Horner in York Press. AN ONLINE GP service in York has had its registration suspended after it was found to be putting patients at “risk of serious harm”. The Care Quality Commission (CQC) rated the care provided by Doc-OneStop to be ‘inadequate’, following an inspection carried out in July 2019. […]
Hospital Food Review Announced By Government
From The Yorkshire Times. The government will work with the NHS to improve food quality in hospitals and provide consistently safe, nutritious and tasty food. The review will consider: 1. How food can help aid faster recovery, taking into account the unique needs of vulnerable groups 2. Support from national bodies such as […]
DWP Admits It Has No Idea How Many Of Its Disability Champions Are Disabled People
By John Pring in Disability News Service. The Department for Work and Pensions (DWP) has admitted that it has no idea how many of its 19 “disability champions” are disabled people. The disability sector champions – covering areas such as banking, gaming, arts and culture, media, music and retail – are supposed to drive […]
Vitamin B12 Deficiency: The Six Main Signs You’re Lacking B12 And Could Be Deficient
By JESSICA KNIBBS in The Express. Vitamin B12 is the water-soluble vitamin that plays an essential role in the production of red blood cells. Lacking in the vitamin could cause a number of signs in the body. What are the six main symptoms that could mean you are vitamin B12 deficient? Vitamin […]
Are Chronic Illness And Trauma Related ? Here’s What You Need To Know
By Renee Fabian in The Mighty. If you’ve been diagnosed with a chronic illness and experienced trauma, you may have some uneasy feelings about the connection between the two. After all, some doctors who don’t really understand tricky conditions like fibromyalgia or myalgic encephalomyelitis (ME/CFS), for example, might be quick to tell you your symptoms are […]
A Blue Badge And Invisible ME
Gone from being life and soul Health gone down a huge black hole Rarely getting out too far Too much pain is the bar A blue badge now has rescued me When strength allows, it sets me free It gets me to a needed door Which was out of my aching reach before Many are […]
Site Maintenance
Just to let you know that this site will be down later this evening and overnight for required maintenance. Normal service will be resumed tomorrow !
New App To Help Mobility Aid Users “Take Back Their Streets” By Reporting Illegal Parking
By Calvin Barnett in Thiis. A new app giving disabled people the power to report parking infringements to their local councils is hoping to stop situations where people using mobility devices are forced to make unsafe manoeuvres to get past illegally parked vehicles. Developed by brother and sister team Alex Mühlhölzl, Chief Operating […]
Disabled Actress Samantha Renke – What Does Accessibility Mean To You ?
By Samantha Renke in AccessAble. With almost 14 million disabled people living in the UK and as the fastest growing minority group, creating a world that is more accessible has never been more prevalent. Not to mention that excluding the disabled people from the consumer market is a big financial mistake as disabled people […]
There Was A Young Lady From Goole…..
There was a young lady from Goole Whose doc made her feel like a fool So she told her GP If you can’t see it’s M.E. It’s time you went back off to school By Bill Clayton ©2016
Taking Opioids For Chronic Pain: Here’s What The Experts Recommend
By Lesley Colvin and Blair H. Smith in The Conversation. Chronic pain – acute pain that lasts for longer than three months – affects around one in five people in Europe. The increase in use of strong morphine-type drugs (opioids) for the treatment of chronic pain is an area of much concern, particularly in North America. […]
A Town For People With Chronic-Fatigue Syndrome
By Mike Mariani in The New Yorker. September 3, 2019 Patients moved from all over the country to Incline Village, Nevada, for an experimental drug. Then the drug disappeared. In December of 2012, I came down with what at first looked like a bad case of mononucleosis. I felt tired and had […]
Invest In ME Research Newsletter – August 2019
Invest in ME Research is an independent UK charity campaigning for and facilitating biomedical research into myalgic encephalomyelitis (ME). More details of the charity are here. To read the Newsletter, click on the link below: Link to Invest in ME Research Newsletter
Living With Chronic Fatigue Syndrome
On Nightlife with Philip Clark. CFS is considered to be a complicated disorder which is not only difficult to diagnose but also has no effective treatment. Estimates show that about 1% of the Australian population which is about 250,000 people suffer from it and many of those suffering from it are unable […]
The Struggle Of Identifying Pain
By Lindsay Glenne. How do you know when to seek help? When you have a chronic illness, it’s really hard to differentiate between your usual pain, and something new. With an illness like fibromyalgia, it can sometimes be even harder. It effects every single part of your body and a flare can […]
From Infectious Disease Specialist To ME/CFS Expert: Dr. Bela Chedda Talks
By Cort Johnson in Health Rising. Dr. Chheda’s Road to ME/CFS 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 […]
How Do I Know If I Need A Wheelchair ?
From How To Get On. Many people with Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome” find that too much physical activity can make their condition worse. Sometimes permanently. Pacing, resting, and using equipment like wheelchairs and scooters can be important tools in helping yourself. How do you know when the time has come? Stories and […]
Consultation Regarding Accessibility at Clifford’s Tower Area York
As you may know, a consultation process is under way with regard to the revamping of Clifford’s Tower area of York. This week I was invited by English Heritage to add my input with regard to accessibility for the area. The revamp will include removing the car park currently alongside the tower, which is […]
Myalgic Dncephalomyelitis (Or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis And Management
Call for evidence What we need We need evidence from the areas listed below for the guideline we are developing on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: 1. Studies that evaluate: Management strategies that are adopted while someone is being assessed for a diagnosis of ME/CFS. Methods of monitoring and/or reviewing […]
Cortene To Move Forward On New Drug For Chronic Fatigue Syndrome (ME/CFS)
By Cort Johnson in Health Rising. In February of last year, Health Rising announced an unusual event was going to take place: a small drug company named Cortene was going to trial a new drug for chronic fatigue syndrome (ME/CFS). Cortene’s trial was unique in a number of ways. For one, it involved ME/CFS […]
Mechanical Page Turners To Seeing AI: A Brief History Of Accessibility Tech
By Heidi Scrimgeour in The Guardian Labs. Cumbersome machinery has been replaced with unobtrusive, empowering innovations in the world of assistive technology. Heidi Scrimgeour charts its evolution. Assistive technology is transforming the lives of people with disabilities. But what’s perhaps more remarkable is the fact that you probably haven’t noticed. The unobtrusive nature of the technology demonstrates […]
ME/CFS Seahorse Energy Production Study Shows Surprises
By Cort Johnson in Simmaron Research. Dr. Maureen Hanson leads one of the three NIH funded ME/CFS research centers, but her ME/CFS research doesn’t stop there. Using samples from Dr. Daniel Peterson provided by the Simmaron Research Foundation, she’s also been assessing the metabolism of one of the most important cells in […]
Trial By Error: An Open Letter To Dr Godlee About BMJ’s Ethically Bankrupt Actions
By David Tuller, DrPH I have sent the following letter to Dr Fiona Godlee, editorial director of BMJ, about Archives of Disease in Childhood’s egregious decision to re-publish Bristol University’s Lightning Process trial with the original findings intact. Given the Bristol team’s flagrant methodological violations, the journal should have retracted the paper. […]
Time For Unrest: Why Patients With ME Are Demanding Justice.
