From Medical Press. Girls receiving one or more doses of HPV vaccine have no greater risk of chronic fatigue syndrome/myalgic encephalomyelitis (CFS / ME) than unvaccinated girls. This is shown in a new major study from the Norwegian Institute of Public Health. The study is part of the national surveillance of the […]
By Debbie Deboo in The Mighty. I was diagnosed with ME 15 years ago. Before that I was a confident professional in charge of my own life and completely autonomous. When I got ill I found myself in the difficult position of having to rely on others. I could no longer go anywhere alone […]
From Stuff and Things. It’s M.E. Awareness Month in May. We’re supposed to brand ourselves as a congruent whole – patients, loving carers, a few good doctors, and our allies – versus – the system that failed us. But what about the carers that stop caring? Is there a time limit on how […]
From the #SpeakforME Blog. My name is Emelyne and I #SpeakforME because so many people suffer in the dark behind closed doors. ME has no bias, it affects men, women, children, adults, young and old. It can change during your life, it can get really tough. It can get better and there can […]
From Frontiers in Pediatrics. Authors as listed. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease that affects children and adolescents as well as adults. The etiology has not been established. While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis […]
For your information, I gather there is to be a programme on BBC Radio 4 on Tuesday 27 June at 8 pm about Children With ME.
By Anna Ruddock in The Socialogical Review. I am beginning this on a bad day. Not the worst kind of bad day – I am, after all, typing, and therefore thinking, albeit slowly, sludgily. How to describe this? Each time I try, I express it differently. Today it is as though […]
By Laura Chamberlain from her Blog, Laura’s Pen. How self-doubt nearly stopped me finding an important diagnosis… I have found myself having a very similar conversation with multiple people recently, about self-doubt about your own illness when you’re chronically ill. I’d never previously spoken about it, because, I guess, I don’t […]
By Anil van der Zee. As a dancer I have been surprised by the treatments I’ve received for my disease Myalgic Encephalomyelitis. I want to share my opinion from a dancer’s perspective. What do other professional ballet dancers think about the treatments and the current care that’s being offered to ME patients?? […]
By Bart Stouten in Journal of Health Psychology. Abstract The controversies surrounding the effectiveness of cognitive behavioural therapy and graded exercise therapy for chronic fatigue syndrome are explained using Cohen’s d effect sizes rather than arbitrary thresholds for ‘success’. This article shows that the treatment effects vanish when switching to objective outcomes. The preference […]
From Yoga Journal. “Meditation” and “mindfulness” are buzzwords these days for good reason. Yogis have been practicing dhyana (meditation) for millennia. Get expert insight here on meditation and its symbiotic relationship to yoga. Use this hub as your go-to resource for simple tips and guided practices to quiet your mind and make meditation part of your modern daily […]
We are the experts in arranging holidays for disabled people with medical conditions and disabilities. Not sure on something or have a question; then just ask us, we aim to ensure you are 100% happy with every detail of your holiday from the time of booking until you return home. Our Service Includes: […]
From The Journal of Internal Medicine. Abstract: The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it […]
From Invest in ME Research. It may have escaped the notice of some that the MRC is preparing to be absorbed into the new UK Research and Innovation (UKRI) and the existing CEO, Sir John Savill, will be winding down affairs until the transition is completed. Link to Appointment notification We have stated […]
by Ayanna Monteverdi in menedelspod.com. Let’s say you’re a biomedical researcher looking for a place to make your mark. You find out that there is still a major disease that affects more than 2 million people in the US, and we still know virtually nothing about this disease at the molecular level. […]
By Natasha Lipman. This week, I headed up to Leeds to speak at the British Dietetic Association’s Eat Fact Not Fiction event, where I had the pleasure of telling my story of falling for wellness, and why it’s so important that we don’t just dismiss people as stupid for falling for these trends. I’ve […]
by Elaine Atwell in Healthline. If you’ve ever had to explain your medical condition to a stranger, you’ve probably experienced the wide-eyed pity, the awkward silence, and the “Oh yeah, my cousin has that” comment. But the most frustrating experience of all may be when you patiently explain your condition to someone, and […]
From The Spoonie Warrior Blog. While my condition has only been disabling for the past year and a half, I’ve technically had chronic illnesses my entire life. Even before being diagnosed, my illnesses affected my life greatly. Most people will want to hear that, despite my struggles, I make sure that I […]
A very warm welcome to DisabledGo.com. We hope that you find our services really useful and that you visit us often. On our website you’ll find detailed access information to thousands of venues across the UK and the Republic of Ireland: shops, pubs, restaurants, cinemas, theatres, railway stations, hotels, universities, hospitals and more. Established over […]
By Joe Fryer in NBC News. At just 12 years old, Alexander Knoll is already handing out business cards. Even more impressive, his title on those business cards is “CEO.” The inventive, freckle-faced redhead is creating something called the Ability App, which is like Yelp for accessibility. When it’s finished, the free application […]
After a pretty tough time, the guys riding as part of The Nomadic Knights group, have made it to Everest Base Camp. Their brief report is below. 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.
The peak of Mt Everest is located directly above the left hand corner of the flag with the snow being blown from it, not ideal climbing weather. Directly behind the flag in the valley you can just make out the orange tents, this is the base camp for the mountaineers, their teams and their support crew waiting for windows in the weather to commence their attempt on the summit and move to the next stage camp. Lots of waiting unfortunately.”
17 May 2017.
“We are now at Tingri which is the last stop before Everest Base Camp, the plan is to head to Base Camp early tomorrow morning.
Unfortunately two of our team have been hospitalised with quite serious cases of Altitude Mountain Sickness which can be unpredictable and affect different people in different ways, unfortunately their ride is over and they will be transferred back to Lhasa hopefully within 3/4 days. Naturally the team is extremely disappointed for them, so close to seeing and experiencing Everest. Our thoughts and spirits are with them. Today’s photo of the Flag on route was taken at the entrance to Mt Qomolangma National Park at an elevation of 5248 mtrs which is the highest we should be going. “Qomolangma” is the Tibetans name for Everest. In 2012 this area was awarded the National Park status, it is the highest national park in the world and covers 78000 sq kms. It holds 5 peaks over 8000 mtrs – Mt Qomolangma (Everest), Mt Shishapangma, Mt Chi Oya, Mt Lhotse and Mt Mhakalho.
The park is a holy land for scientists, mountaineers, tourists and pilgrims.
13 May 2017. ME Awareness Flag Update from the group heading to Everest Base Camp for The York ME Community / Invest in ME !
“Here it is on display inside the Potala Palace in Lhasa, built in 7th century and home of Dali Lamas and the centre of local Tibetan Government. Has over a 1000 rooms. Just after this we were approached by Chinese officials who confiscated the flag, obviously with hindsight westerners openly displaying and photographing a flag inside such a highly politically sensitive area was a bit suspect and ignorance on my part.
Anyways eventually they allowed me to continue with the tour. At the end I went back to try to collect the flag but main entrance was closed, there was me in a ludicrous position of banging my fist on the Dali Lamas main door shouting “hello, hello” anyone home” no one answered, only advice I got from a colleague was “pretend you are planting something and I bet the police come running” not entirely wise.
Anyways found a side entrance and a surprisingly helpful security guard, they confiscated 4x flags that day but couldn’t find mine. Eventually they got it, returned it and wouldn’t accept a tip so all good and faith in human being truly restored.”
More updates to follow as I hear back from the guys !
12 May 2017. Just to let you know that The York ME Community / Invest in ME Flag has reached Lhasa in Tibet, on its way to be raised at Everest Base Camp for ME Awareness ! Future communications might be difficult with the Internet and emails in Tibet being controlled by the Chinese, but hopefully it’ll make it !
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…)
The Coffee Club
Our Coffee Club meets on the third Wednesday of each month for a cuppa and a natter at The Novotel York.
Our next get together is on Wed 19 July at 2 pm. 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 (below), you can of course say you'll be going via the Events area.
ME Awareness At York Explore
Friday 28 July 2017
The York ME Community will have a 'Table' at York Explore Library on 28 July 2017 to inform visitors about ME and raise awareness. Please pop in for a chat if you're in town.
Our Facebook Group
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 on a monthly basis if the beast that is ME allows us ! If you apply to join, please check your Facebook messages, as I tend to get in touch for a quick 'chat' before adding applicants 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.
Congratulations to Bransby Wilson Ltd, the York based Parking Solutions company who have been one of the companies to support The York ME Community this year. One of their teams entered into our Inter Company Fantasy Football League were top on Christmas Day and so received a box of goodies from another of our supporters, Nestle of York, and so a big thank you to them and all the other York businesses taking part and supporting us. Now they've only gone and won the league and The York ME TGA Shield ! Our league is sponsored by TGA Mobility and the shield will be presented in due course.
If your company would like to take part next season, all it takes is a £25 registration fee which goes directly to Invest in ME Research. We make sure all businesses get a good mention in social media with their business Tweets being re-sent to hundreds more potential new clients.
Please get in touch by dropping me an email at bill@York-ME-Community.org to register your interest.
Why not take this opportunity to support your local community and raise the profile of ME Awareness in York, an illness that affects around 800 people in the York area, with 200 being severe, meaning house or bed bound. Tomorrow it could hit you or one of your family, so you could be helping yourself too.........
Calling On All York Businesses !
Would you like to help your local community ? By current research, there are around 800 people in the York area suffering from Myalgic Enecephalomyelitis (ME). This might include the work colleagues you haven't seen in some time, or your friends and family, maybe one of the lads that hasn't turned up for five-a-side for a while.
There is information above to explain how it affects people and ruins lives. These are your neighbours; would you like to help ?
The York ME Community is here to help support those in the area in need whilst raising awareness. Unfortunately, this is hard to do when you have the illness ! I'm looking for more foot soldiers to spread the word. Can I come into your workplace and chat to your HR Staff maybe ? It could be that ME is having an effect in your workplace.
How would you like to take part in our online Inter Company Fantasy Football League in support of Invest in ME Research ? Nestle of York have already donated a prize to the business team that was top of the league at Christmas and there's a trophy to be had at the end of the season. Why not enter a team for next season ?
Is your business taking part in any runs coming up such as The London Marathon, The Great North Run, or maybe something similar ? If you haven't decided on what cause to run for, what about Invest in ME Research ? Any donations can be passed via the Just Giving link at the top of the site, but I'd also be able to advertise your generosity and your business name to thousands across the world via our social media connections.
There are lots of things going on locally to try and raise awareness, but we need your help to help others. Please get in touch. Be a part of your community. The York ME Community. Thanks.
