From Invest in ME Research. Background At the 10th Invest in ME International ME Conference 2015. Dr Ian Gibson announced that he was planning on writing a book about ME – and the politics and prejudice which has affected the way that ME is perceived, treated, researched and funded – as well […]
Chronic illness is misrepresented in TV and film, and it damages the lives of people coping with it, writes Naomi Chainey in SBS. I once watched an episode of House M.D. where a man came to the clinic and outlined his symptoms. Familiar symptoms. My symptoms. Having just been diagnosed with one […]
By Russell Logan in Shout Out About ME. As an ME or CFS sufferer, how often have you had someone say to you, ‘we’re all tired, get over it’, or ‘you don’t look sick’? Although the illness is mostly invisible, part of the problem is that some patients aren’t as sick as […]
A Blog by Sally Burch. Some Days! We have all had those days: the days where nothing goes right. Yet, we weather the rough times because we are confident that things will look up again tomorrow. In a similar way most people have experienced a few day’s confinement to bed with a […]
By Adrienne Dellwo in Very Well. When living with fibromyalgia and chronic fatigue syndrome, pacing is key to managing your symptoms. That’s easier said than done with the busy lives most of us lead, but with some effort, you can learn to pace yourself. Why is Pacing Important with Fibromyalgia & Chronic Fatigue […]
The All Party Parliamentary Group (APPG) on M.E. is hosting an awareness-raising drop-in session for MPs in London on Wednesday 11 May from 12.45pm to 2pm. If you’d like your MP attend, get in touch with them now if you can, or get someone well enough to email them. Just Google to find out […]
By By Adrienne Dellwo in About Health. Getting Started With Supplements: Many doctors, researchers and people with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) say nutritional supplements are an important part of managing your symptoms. Many of us swear by them, and some people use supplements as an alternative to medications. However, […]
By Kevin Black in Local People. Caterham based model Joanna Chamberlain has raised over £800 for charity with a spectacular fashion show held in the town’s New Caterham Arms pub. Joanna and Her Vintage Violets was the title of the evening and the theme was the 1940s-50s and was in aid of www.investinme.org a […]
Invest in ME supporters made March another marvellous mixed bag of awareness & fundraising for the charity’s biomedical research funds for myalgic encephalomyelitis. Thank you each & every one! Actor Jon Campling took along his Invest in ME charity collection box to another Comic Con event, this time in Oxford: “Huge Thanx 2 all […]
From meanalysisblogspot.com Scientific analysis and ME psychosocial research: will they ever meet? I get frustrated by the endless recycling of unsubstantiated claims and opinions about ME, and can fully understand why many people get quite angry about it. So I intend to write a short series of blogs looking at the claims […]
As I hope you will know by now, Mike Harley is acting like a crazy man and running a marathon in each EU country in aid of Invest In ME Research. That’s 28 in all, a truly mammoth and marvelous task. In each country he meets up with local ME sufferers and learns a little […]
A Blog by wishfulthinker77 in Totally ME. I fear criticism for writing this post , here goes anyway ….. Last night I attended a Fancy dress party for my Brother in Law , so a place filed with friends & family . All week I was not going to attend but I changed […]
The Spoon Theory. Written by Christine Miserandino. My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time […]
Story by Sasha Nimmo in MEAction. (A view from Australia). Most of the $2.4 million in research the government says is for ME or CFS is spent on research into psychology, exercise or for other conditions such as hepatitis C. No studies funded in a decade. For Australia’s 94,000 people with ME, or possibly […]
Mike Harley is currently part way through his mammoth mission to run a marathon in each EU country, 28 in all, in aid of Invest of ME. Please have a look at his site that covers his running schedule and a whole lot more to boot with regards ME. To connect to Mike’s […]
Before ME hit, I enjoyed running and took part in a number of marathons, running for charity. This is beyond me now and I’m jealous when I see people out there running past my front window ! The Yorkshire Marathon is a very popular event and places will be up for grabs from today and […]
A Blog by Emily Beardall in A Prescription for M.E. This is the 50th blog post since I started my blog in May! My very first post was about some positive M.E. awareness news from Norway, so I’d like to mark the occasion with a blog post about positive campaigning. In M.E. campaigning, we […]
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Story by Nathalie Wright in the Huddersfield Examiner. In this thought provoking first person feature Huddersfield 22-year-old Nathalie Wright reveals how her life has been devastated by the crippling illness ME. Nathalie grew up in Pole Moor above Slaithwaite, went to Wilberlee Primary School, Crossley Heath School in Halifax and then Greenhead […]
Hello! My name’s Barnaby Eaton-Jones, but that’s my problem. I’ve had M.E. since 1991, so that means I’ve been unwell for longer than I’ve been well. This, as you may imagine, is described by me as ‘a bit of an arse’. Which is somewhat of an understatement. So, picture the scene – a young, lithe, […]
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Invest in ME is an organisation of volunteers that does so much for those of us dealing with ME. The link below leads to news on their 11th Annual International Conference due to take place in 2016. Link to Invest In ME Annual Conference news
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 16 August 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.
