By John Pring in Disability News Service. A welfare rights advisor has described how at least 30 local benefit claimants with terminal cancer have had their claims rejected in the last year, with every one of the decisions later overturned by an appeal tribunal. In every case, the claimant has been terminally-ill […]
From the CDC (Centers for Disease Control and Prevention) Website. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and […]
By George Winter in The Medical Independent. George Winter examines the evolution of recognition for myalgic encephalomyelitis (ME). In 1926, TS Eliot, then editor of The Criterion, published Virginia Woolf’s essay On Being Ill, where she bemoans the “poverty of language” with which to describe illness: “Let a sufferer try to describe a pain in his […]
By David Tuller. First, for those who might have missed it, here’s a conversation from This Week in Virology (TWiV), posted a few days ago. Dr. Racaniello and I discuss the CDC, NICE, Esther Crawley’s ethically challenged behavior, the CMRC, and other stuff. Second, earlier today, I sent the following e-mail to Sir Andrew Dillon, […]
By Jerrold Spinhirne on his Facebook Page. Increasingly, researchers, doctors, advocates, and patients are using the mixed term “ME/CFS” as if it had some clear, specific meaning and referred to some identifiable disease. In actuality, however, the mixed term “ME/CFS” is ambiguous, logically incoherent, and a major impediment for making progress in research […]
The York ME Community has linked up with The Disability Employment Company evenbreak. This is a company run by disabled folk who believe that disabled people deserve an ‘even break’. Evenbreak, a not-for-profit social enterprise, was formed to achieve three aims: • To help inclusive employers attract more talented disabled people; • To […]
By Anil van der Zee, in his Capture, Dance, Words Blog. As long as I have been suffering from my illness I’ve read and have also had some people tell me that the cause and course of my disease rests in some way in my own hands. I have always found that remark […]
By Laura O, in Solve ME/CFS Initiative. I stared feeling run down and not quite myself nearly four years ago. I had all these strange things happen to my body. I just couldn’t get my head around it. The symptoms I had/have scared me and at times I actually thought, “I’m dying.” Who gets this […]
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 Wednesday 18 October 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 […]
By Cort Johnson in health Rising. Immunologists aren’t interested. Neurologists, in general, are to be avoided. Endocrinologists can’t be bothered. Except for primary care physicians specializing in chronic fatigue syndrome (ME/CFS), the outlook in the medical field for ME/CFS patients is pretty bleak. If a chronic fatigue syndrome (ME/CFS) patient doesn’t encounter […]
By Jane Shaw in The Mighty. Like its name, myalgic encephalomyelitis is also rather complicated and extraordinary. The illness made Little Miss Brain Fog feel like Little Miss Dotty, Little Miss Scatterbrain, Little Miss Fickle, Little Miss Whoops, Mr. Bump, Mr. Topsy Turvey, Mr. Forgetful, Mr. Lazy, Mr. Muddle, Mr. Dizzy, Mr. […]
By Jane Hatton in My Disability Matters. Jane Hatton, manages Evenbreak, a not-for-profit jobs board run by disabled people for disabled people.
From Pirate FM News. A video by a 10-year-old schoolgirl girl who has been battling an illness for seven years is going viral. Shannon Tiday, from Plymouth, has M.E. – Myalgic Encephalomyelitis. It is a chronic condition which sees her suffer from things like vomiting, extreme fatigue and crushing headaches. But now she […]
By Bruce Campbell in CFIDS & Fibromyalgia Self Help. If you have CFS, you are probably familiar with post-exertional malaise, the severe fatigue that results from doing too much. You can avoid or at least reduce malaise by staying within your limits or energy envelope. This article describes a strategy for staying within one […]
By Linda Avey in prweb. Precise.ly, Inc. has been selected to be the patient portal in a $40 million, five-year NIH-funded, multi-center study focused on the study of chronic fatigue syndrome (ME/CFS). It represents the first major research support for a condition that affects millions of Americans. SAN FRANCISCO, (CALIF.) (PRWEB) OCTOBER 09, 2017 […]
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 […]
By Riki Janssen in Observant. Mythbusters Patients are not just a little bit tired, but are permanently exhausted. Sleeping doesn’t help much – if they can sleep properly at all – and they usually pay a high price for any physical exertion: remaining even more tired than they were, for days on end. According to […]
By Cort Johnson and Courtney Miller in Simmaron Research. (Dr Ian Lipkin pictured) “These important grants will provide a strong foundation for expanding research in ME/CFS, and lead to knowledge about the causes and ways to treat people affected by this mysterious, heartbreaking, and debilitating disease,” Dr. Francis S. Collins, Director of the NIH Simmaron […]
From The Occupy ME Blog. In aggregate, 2017 turned out to be the biggest year of ME/CFS funding at NIH ever. But when I scratched the surface, I found bad news buried within the superficially good news. We are still at the bottom of the funding ramp that Dr. Collins promised us, and […]
From Helse Bergen. RituxME is a multicentre study conducted in five study centres in Norway: the Oncology Department at Haukeland University Hospital, the ME/CFS Centre at Oslo University Hospital (Aker), the Dept of Medicine at Notodden Hospital, the Dept. of Pain and Complex Disorders at St. Olav’s Hospital in Trondheim, and the […]
An easy way to raise funds for Invest in ME Research without it costing you a penny. Who says you don’t get owt for nowt ? There are over 3,000 retailers at GoRaise who will donate to Invest in ME Research every time you shop with them via our link at the top of this […]
The Jen Brea ME film 'Unrest', about her story and struggle with Myalgic Encephalomyelitis (ME) is coming to City Screen York. 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.
Tickets are on sale now from City Screen York. Please spread the word through your GP, MP, Company HR Teams and any other people of influence you may know. Thank you.
19 May 2017.
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.
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 twice a month for a cuppa and a natter.
There's a Morning Coffee Club on the first Monday of each month at The Bar Convent on Blossom St,York with the next one due on Monday 6 November at 11.00 am
We also meet on the third Wednesday of each month at The Novotel York at 2 pm. Our next get together is on Wednesday 15 November 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 notice in the Events area.
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Raising ME Awareness At York Explore Library
Friday 28 July 2017
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 it themselves who now know we're here for them.
Thanks to the Anne twins, Mal and Dionne who turned out to man and woman the table, but also to all who were there in spirit and would have been there in body but for a certain little beasty we all know so well......
More to come on York TV........
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 won The York ME TGA Inter Company Fantasy Football League sponsored by TGA Mobility for season 2016/17.
The second season has just got underway ! With the aim of raising ME Awareness, it has attracted 10 business teams, including two from Belfast, up on last year, raising over £400.00 for Invest in ME Research.
Why not put it in your diary to join us next season ? Take the opportunity to support your local community and raise the profile of ME Awareness, an illness that affects around 800 people in the York area alone, 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.........
Hopefully, even more teams from across the country next season.....
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.