From Invisible Disabilities Association. Don’t judge appearances. People with invisible disabilities don’t LOOK Disabled. Don’t judge appearances when you think you see someone abusing privileges or rights reserved for the disabled because you might be making a common mistake based on perception. Have you ever seen someone get out of a car parked […]
By Cort Johnson in Health Rising. For years, ketamine was known for its use as an anesthetic or as a recreational drug. It had the nice benefit of being able to knock one out without impacting heart rate or breathing. Its ability to provide quick and safe sedation saved many lives during the Vietnam […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
By Alicia Thompson in The Mighty. It never ceases to frustrate me to realize how pervasive the “Just Do It” culture is. Whenever I discuss my physical limitations with others, I’m often met with the suggestion that I simply need to “push through.” Which leaves me wondering, what does this phrase really mean […]
By Alexis Redenbach in The Mighty. We’ve all seen the movies: the patient stoically braves the struggles of treatment and only gets angry one time, in a huge but righteous burst of frustration. The person in a traumatic accident is told they will never walk again but by sheer force of will, they somehow […]
By Cort Johnson in Health Rising. Jeff had a typical ME/CFS onset: he was a young, healthy and active individual before being felled by a viral infection and a high temperature. The infection left him with headaches, dizziness, muscle weakness and pain, sound and light sensitivity, and a general sense of being […]
From Health Rising. “You guys are about a litre short in blood volume, ok? If I’m sitting at five litres, you’re sitting at four. So, you’re really, really sensitive to blood volume changes. If you’re a little dry, you crash. ” Dr. Nancy Klimas. The low blood volume finding in chronic […]
By Cassidy Colbert in The Mighty. Living life with a chronic illness is basically living life constantly walking on eggshells. One day you may be bouncing off the walls because you are so full of energy and the next you are lying on the cool bathroom floor — your only source of relief from the agonizing […]
By Simon Parker in Health Rising. Fifteen years ago I was diagnosed with Fibromyalgia and ME (aka Chronic Fatigue Syndrome), a debilitating condition that includes continual pain and delayed fatigue as its primary symptoms. I often find myself trying to explain to other people what the delayed fatigue is like by giving an example […]
By Cort Johnson in Health Rising. A Different Approach to Fibromyalgia “The effects of not getting good blood flow to your brain, joints and muscles?…. Fibromyalgia” – Vital Motion Erik Hiester D.O., is not your ordinary doctor. He’s an interesting blend of engineer and doctor. Hiester’s first love was biomedical engineering (B.S. and M.S.). Wanting […]
From ME Support. The clock is now counting down to International May 12th Awareness Day 2019. This year, 2019, marks the 27th anniversary of International May 12th Awareness Day. The idea originated with Thomas Michael Hennessy, Jr., the founder of Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases (no longer active). Tom Hennessy was based in […]
By Cort Johnson in Health Rising. Having any disease is scary, but having chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM) often adds a hefty dose of confusion and bewilderment to that fear. Not only are people with ME/CFS and FM typically exhausted and in pain, but problems with short-term memory and information processing […]
by Denise Grech in Times of Malta. Ninety-six patients have been prescribed medical cannabis since the law was amended in March this year, Superintendent of Public Health Charmaine Gauci said. The 96 patients were under the care of 14 doctors, she said, adding the superintendence was also following the cases closely. Many of these patients suffered from fibromyalgia, […]
By Erin Migdol in The Mighty. Everyone has said “I’m tired” at one point or another. But those deceptively simple words can have so many meanings. Without knowing the extent of the exhaustion someone with chronic illness is feeling when they say they’re tired, people may think your “tiredness” can be cured by a nap or early night, like theirs, not […]
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 […]
By Alicia Thompon in The Mighty. It never ceases to frustrate me to realize how pervasive the “Just Do It” culture is. Whenever I discuss my physical limitations with others, I’m often met with the suggestion that I simply need to “push through.” Which leaves me wondering, what does this phrase really mean to […]
By Krista Germanis in The Mighty. Pain and sickness are really difficult things to write about. Trying to describe things you’re feeling, but many people have never dealt with before, is essentially attempting to put pen to paper about the way butterflies feel in the beginning of a relationship to someone who still has yet […]
By Christen Marie in The Mighty. For those of us dealing with chronic pain or chronic illness such as fibromyalgia, autoimmune disorders, or any host of other physical or mental health issues, there is often this one overriding issue that can wreak havoc on our lives and yet be very difficult to explain to the average person. Chronic fatigue. Chronic […]
By Kate Nicholson in The Mighty. When I went into the office one Saturday afternoon in August 1994, I planned to spend a few hours finishing a brief that was due in federal court Monday morning. At the time, I was a civil rights attorney for the justice department. After 30 minutes […]
By Alexandra Kaye in The Mighty. “Pain tolerance” and “pain threshold” are phrases used to describe how much pain a person can handle, but they don’t actually mean the same thing. Pain tolerance is how much pain you can handle while still functioning (for me, this means how much pain I can handle without taking medication). […]
By Cort Johnson in Health Rising. This blog is part IV in a series of blogs covering the issues presented at the 2018 Dysautonomia International Conference in Nashville, Tennessee. As if we needed another syndrome. Chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), fibromyalgia (syndrome), irritable bowel syndrome (IBS) are old-timers in the ME/CFS/FM world. In the last […]
By Remy in Health Rising. The RCCX hypothesis blog by Remy is the third in a series of blogs by Health Rising which highlight hypotheses produced by health care professionals which attempt to shed a new light on the chronic fatigue syndrome / fibromyalgia spectrum of diseases. Chronic illness is exploding in modern […]
By Victoria Fernando in The Mighty. I have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and I am writing this post in honor of International ME/CFS and Fibromyalgia Awareness Day, this Saturday, May 12th, 2018. Kudos to all those surviving and doing their best whilst living with these diseases, and to the caregivers and loved ones who love and […]
By Jose Marques Lopes, PhD in Fibromyalgia News Today. Patients with fibromyalgia and patients with chronic fatigue syndrome (CFS) both show similar differences in postural control in comparison with healthy subjects, researchers found in a study. The study, “Lower regulatory frequency for postural control in patients with fibromyalgia and chronic fatigue syndrome,” appeared in the journal PLOS ONE. Patients […]
By Cort Johnson in Health Rising. Dr. Lapp’s path to medicine and then into chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) was an unusual one. Lapp graduated from the Rensselaer Polytechnic Institute with both Bachelor’s and Master’s degrees in engineering. After doing research, consulting, and marketing in Boston, Lapp turned to medicine and […]
By Cort Johnson in Simmaron Research. Why should a blog focused on chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) be interested in multiple sclerosis? Because some distinct similarities exist between the three diseases, and when diseases like ME/CFS and FM aren’t getting much research, sometimes it pays to pay attention to diseases […]
From Your Daily Ideas. License to treat pain with medicinal cannabis given the go ahead A license to treat chronic pain with medicinal cannabis has been granted here for the first time, it has emerged. A 3-month agreement was given the green light by the Department of Health to use Tetrahydrocannabinol (THC) people […]
By Caz in The Mighty. Living with invisible, chronic illness can often feel like trudging through mud – an endless downward spiral of problems, regrets and maybe a sprinkle or more of resentment, too. I know I have my down days and struggles with fibromyalgia, a stoma, fatigue, pain and migraines. But it’s important to appreciate […]
From Solve ME/CFS Initiative. Note: the use of “CFS” in this article reflects the nomenclature used in the studies referenced. New research published in Fatigue: Biomedicine, Health & Behavior found ventricular lactate (lactate present in cerebrospinal fluid) might serve as a biological marker of underlying brain dysfunction for patients with chronic fatigue syndrome (CFS), fibromyalgia […]
From BBC News: People with dementia and autism could get blue badge parking permits in England under new government proposals. It is hoped that providing the permits for those with hidden disabilities will create equality between the treatment of physical and mental health. The Department for Transport said at the moment only certain […]
By Tiffany Early in The Conversation. My husband and I had a conversation about how others perceive my illness the other day. It wasn’t a confrontational conversation — it was more the random musings that happen when you’re waiting for dinner to come out of the oven. Joe mentioned that a mutual friend had once […]
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Sun 28 Apr 2019 - The York Inset Scooter Club will be setting off on their annual Mods and Rockers Charity Ride Out from Clifford's Tower in York to the coast in aid of The York ME Community. Departure time is 10.30 am. Why not come a long to wave them off with us ?
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Mon 6 May 2019 at 11 am - The York ME Community Coffee Club at Bar Convent, 17 Blossom Street, York.
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6 - 12 May 2019 #Missing Millions Events around the country.
For Birmingham, on Friday 10 May, 12 noon to 4pm, at St Philip's Cathedral.
For Leeds, on 11 May, full details can be found by clicking on the link below:
Link to Missing Millions Event in Leeds
For Bristol, 11 May, contact : BristolMissingMillions@gmail.com.
For Liverpool 11 May, contact ask@alishawitham.com
For Norwich 11 May, 11.00 am by McDonald's and NEXT.
For Durham, 11 May, 11.30 am to 3 pm in Durham City Market Place. Info at: www.menortheast.org
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12 May 2019 (but may be for the week around that date)
Clifford's Tower and city walls in York will be lit in blue for ME Awareness.
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To get involved in Nottingham on 12 May, contact: meshnottingham@gmail.com.
For Southampton on 12 May, MillionsMissingSouthampton@gmail.com.
For Glasgow 12 May, starts at 2 pm at George Square.
For London 12 May, starts at 12.30 pm, ends 2.30 pm, St John's, Waterloo Road, SE1 8TY.
For Hebden Bridge on 12 May, starts at 12.00 pm.
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Wed 15 May 2019 - at 2 pm - The York ME Community Coffee Club at Novotel York.
Sunday 19 May 2019 - #22 - Riga (Latvia)
Mike Harley's EU Marathons for Invest in ME Research
Link to Mike's Website For More Information
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31 May 2019 - Invest In ME Research Conferences, London.
This annual international, CPD accredited research conference provides a platform for the latest and most promising biomedical research into ME.
IIMEC14 will be the fourteenth conference and regularly attracts researchers, clinicians, doctors, nurses, occupational therapists, healthcare professionals and patient groups twenty countries from around the world.
The conference is a full day event from 09.00 to 17.30.
For up to date information, click on the link below:
Link to Invest In ME Research Conferences Information
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Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
Would you like to help your local community ?
By current research, there are around 800 people in the York area suffering from Myalgic Encephalomyelitis (ME). This might include the work colleagues you haven't seen in some time, or your friends and family, maybe one of the lads who hasn't turned up for five-a-side for a while.
There's information at the top of this site to explain how it affects people and ruins lives. These are your neighbours; would you like to help ? To read the rest of this request, click on the link below:
The social element of this site is via a Facebook Group called The York ME Community.
This is available to people in the York area looking for help, advice and support, whether those diagnosed, family or friends. We are a close knit group who discuss more than just ME, as we like to think that we are not defined by this illness. We discuss every day things, have a laugh, and try to meet via our Coffee Club if the beast that is ME allows us ! If you apply to join, please check your Facebook messages, as there are a couple of automated questions to be answered before being welcomed to the group.
Please don't apply to join if you are promoting your preferred remedy. I'm happy to mention your company within the group, but it's for individuals to choose what they wish to try in their battle to seek an improvement in their health.
Some companies and organisations offer discounts for disabled people and their carers – click on the link below to find out what you could save.
Carol Monaghan SNP spoke in Westminster Hall about the need for support and funds for ME Research. Many other MP's spoke passionately on the subject as it affects their constituents UK wide. Click on the link below to watch the full debate.
STOP PRESS: FULL DEBATE TO BE HELD IN PARLIAMENT ON THURSDAY 24TH JANUARY 2019
Anil's interview gives a great insight to the man and his ME mission !
Link to Anil van der Zee's Interview
Having read the above interview, I'd recommend a visit to David's Blog below:
After a pretty tough time, the guys riding as part of The Nomadic Knights group, made it to Everest Base Camp. I hope we can use this story to gain interest from media sources to help raise awareness for us all. It's the least the guys deserve for all their efforts.
19 May 2017.
“Very pleased to report that we reached Mt Qomolangma (Everest) Base Camp with the ME Awareness Flag at 1528hrs on Thursday 18th May. Three and a half hours after we had planned but time in Tibet can sometimes be very fluid. The base camp is located at 5200m, walking to the final destination was challenging in itself due to low oxygen levels.
Conditions at base camp were extremely windy (good for flag flying) with intermittent clouds with no particular destination in mind and the sun was not ideal for photos."
Debbie North, our TOG wheelchair walk designer uses an off-road mobility scooter, also called an all terrain hopper to access the countryside and wants to inspire other wheelchair users to do the same through her wheel friendly walks.
Wheelchair friendly walks are a selection of walks that the TOG team have carefully selected for families using pushchairs, wheelchairs or bicycles.
The Jen Brea ME film 'Unrest', about her story and struggle with Myalgic Encephalomyelitis (ME) was shown to a sellout audience at City Screen York on 1st November, prompting a second showing on 16 November. This film has won awards at The Sundance Film Festival and is a must see for all wishing and needing to know more about an illness affecting over 800 people in the York area alone.
Although still showing around the UK and worldwide, it's now also available on Amazon and iTunes and through the Unrest UK Store on DVD and Blu-Ray by clicking on this link: Unrest site to save having to undertake a journey to the cinema.,
Please spread the word through your GP, MP, Company HR Teams and any other people of influence you may know. Thank you.
One of the major questions raised is the blending of ME with CFS. This chart on the Hummingbirds site illustrates the many differences between Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME).
For confidential and independent advice for everyone on welfare benefits, debt, housing, employment, consumer rights and much more.
Welcome to Broken Puppet Theatre Company.
We are a small team of creative professionals who live with chronic illness and invisible disabilities. We work with theatre, film and puppetry to support children, families, schools and communities who are learning to share their world with chronic illness and invisible disabilities too. Our aim is to provide creative expression and escapism wherever they are needed.
Helpfulpeeps is a platform that allows people in any given area to ask for and offer help to one another. Although this is a nationwide facility, by adding your street name, the system automatically drops a pin on that location and you only see posts from a 20 mile radius. You have the option to narrow or widen this radius. I hope this is a useful facility for members of our Community.
If you're given the time and space to talk things through, you can find a way through your problems.
Samaritans help you to explore your options so you can make decisions that are right for you.
Upon request, North Yorkshire Fire & Rescue Service can carry out a home fire safety visit to your home, completely free of charge. This visit involves fire service staff coming to your home to give you advice on fire safety in the home, actions you can take to reduce the risk of fire, and discuss escape routes should fire occur.
If you don't aim to take up this offer, please at least check the batteries on your smoke alarms on a regular basis. If you want to read more, click on the link below:
AccessAble in York provides information on Shopmobility, Talking Signs, Dial & Ride, York Wheels and accessible Hotels, Restaurants, Public Toilets and a whole lot more in our city. To find out more before setting off for York, click on the link below:
The York Inset Scooter Club is based in York (UK) and has a membership of around 250.
They are a thriving, active club and look to support local charities when they can. They have an annual Mods and Rockers charity ride out, and for 2019 have agreed to support The York ME Community.
They will head off from The York Eye (Clifford’s Tower) on Sun 28 Apr on a run out to the coast, and be set off by the Mayor of York and the York Normandy Veterans. They aim to depart at 10.30 am. Why not come along and wave them off with us ?
All money raised will be used to raise the profile of ME in York through posters being produced and put up in local business premises, clubs, schools, GP Surgeries and venues. The picture shows the club gathering before last year’s Charity Ride Out. More details will be given nearer the time, and will be highlighted on this site.
Last season was a great success with 15 teams involved, and this season is going brilliantly with the aim of spreading ME Awareness. As a bonus, we have also raised £725.00 for Invest in ME Research.
This is a call out to all York Businesses, Clubs and Venues to put it in your diaries for next season and support your local ME Community.
To join in for next season and help raise ME Awareness in your local area, have a look at the tab at the top of the site for more information.
Our Coffee Club meets twice a month for a cuppa and a natter.
Dates and times will always be shown in our diary at the top left of this site.
The Coffee Club is open to anyone either with ME, or friends and family looking for support from people who understand.
Due to the nature of the illness, there will be times when numbers are low, but if you'd like to attend, either just turn up on the day, or email me at bill@York-ME-Community.org. If you're a member of our Facebook Group, you can of course say you'll be going via the notice in the Events area.
Euan’s Guide is the disabled access review website used by disabled people to review, share and discover accessible places to visit. The charity was founded in 2013 by Euan MacDonald, who is a powerchair user, and his sister Kiki. As Euan’s access requirements changed, both went in search of recommendations for accessible places to go, but a platform for this kind of information didn’t exist. Built as a friendly and honest alternative to hours of web searching and phone calls before visiting somewhere new, Euan’s Guide now has thousands of disabled access reviews and listings for places all over the UK and beyond.
To go to Euan's Website, click on the link below:
Help us raise money for The York ME Community to pass onto Invest in ME Research every time you shop online, and it doesn't cost you a penny !
By using the link below, when you shop online with a huge number of shops, they will pass a percentage of your purchase cost to our fund. THIS MONEY IS DONATED BY THE RETAILERS, NOT YOU !
Written Question to the Department of Health and Social Care on 22 May 2018 by Carol Monaghan SNP, answered by Caroline Dinenage Minister of State (Department of Health and Social Care)
| Financial Year | £ |
| 2014-15 | 280,442 |
| 2015-16 | 295,626 |
| 2016-17 | 130,958 |
A TRUE STORY BY JESSICA TAYLOR-BEARMAN
Book Description: From a darkened world, bound by four walls, a young woman called Jessica tells the tale of her battle against the M.E Monster. The severest form of a neuro immune disease called Myalgic Encephalomyelitis went to war with her at just 15 years old. From beneath her dark glasses, Jessica glimpses a world far different from the one she remembers as a teenage school girl. This true story follows her path as she ends up living in hospital for years with tubes keeping her alive.
This harrowing story follows the highs and lows of the disease and being hospitalised, captured through her voice activated technology diary called `Bug' that enables her to fulfil her dream of one day becoming an author.
It provides a raw, real-time honesty to the story that would be impossible to capture in hindsight.
To order the book through Jessica's site, click on the link below:
This book is also now available at York Library
An album of original songs and poetry composed and performed by people with M.E. from all over the world, was released to mark and support ME Awareness Day, 12 May 2018.
It was hoped that by releasing this album, it will help those with ME to know that they are not alone, and for others to understand the nature of this illness and give what support they can.
Please consider downloading the album, or even a couple of tracks to help raise awareness of ME, and much needed funds for research into this illness that affects so many, but is understood by so few who may be in positions to help. Proceeds to ME Research and Education. All further information and questions, please direct via the website below: The album can be downloaded now from:
PLEASE SPREAD THE WORD !
I had a very productive meeting with Cllr Aspden and Cllr Runciman of City of York Council where they have stated they will back efforts to raise awareness of ME, understanding that much more is needed to increase understanding of this debilitating disorder, in York and across the UK.
The motion put before Council with regard to support in raising ME Awareness in York was passed unanimously !
The City of York Council followed through on their promise by lighting up the city walls and Clifford's Tower in blue over ME Awareness Week.
Are you a member of a York based Sports or Fitness Club ? Looking for a local cause to run or do an activity for ? The York ME Community are looking to be 'adopted' by anyone willing to maybe run for us and help raise our profile. There are around 800 people of all ages in the York area who would be so very grateful for your help.
We had a brilliant day at York Explore Library raising ME Awareness. Lots of interest in what we're doing from local health groups, charities, the council and most heart warmingly, from those dealing with ME themselves who now know we're here for them.
If you'd like to hear more about ME, get in touch.
Time For Unrest: Why Patients With ME Are Demanding Justice.
If you want the full story on ME and will read just one article about it this year, please make it this one,
Are you on Twitter? Learn more about ME every Wednesday, 8 pm - 9 pm (UK) using #MEAwarenesshour
Mike Harley is a very special guy who's running a marathon in each EU country to raise awareness and funds for Invest in ME Research. Please visit his site to learn more.
To go to the Government's Disability Benefits Advice Guide, click on the link below:
FEATURED ARTICLE
By
Sally Duffin
Hello to all the members of York ME Community. I’m Sally, a Naturopathic Nutritional Therapist at ‘Nutrition in York’ and Bill has asked me to share some nutritional therapy approaches for managing ME.
Many nutritional therapists – myself included – are trained in the Functional Medicine approach to healthcare which means we are less concerned with the name of a condition (ME, CFS etc.) and more interested in the underlying cause and contributing factors of the condition. (more…)
