Millions Missing Tommy missing from the five a sides A different postman today Jenny not out, not seen her about Maybe she’s just gone away No Mary at the Bingo Charlie, where is that guy? Rang the teacher, couldn’t reach her Didn’t think to wonder why Jack from the pub Hayley down at the […]
By Anna Redshaw in her M.E. Myself and I Blog. In my experience it can be difficult to get non-sufferers to properly engage with M.E. advocacy efforts. There can be many reasons for this. Perhaps they find it upsetting to think of the depths of their loved one’s suffering. Or they don’t […]
By Jac Creedon in ME Australia. Since 2015, Adelaide Oval in South Australia has been lit up in blue in recognition of ME Awareness. This year, it will be illuminated on Thursday May 9. It has been organised every year by Jac Creedon, who has had ME for 28 years. Jac lives […]
ME and My ‘Friend’ I want to chat And things like that Like we used to do It hurts to talk It pains to walk But I’ll get myself to you. I’ll get there, it’s not that far Travel by bus, too tough by car Vibrations turn senses into mire The slightest […]
By Jo Moss in The Mighty. The reason I started writing about my experiences was to raise awareness of invisible illnesses like ME/CFS and fibromyalgia, and to try to reach out to help others who are suffering like myself. I often feel I’m not doing enough to raise awareness, so today’s post is an […]
Tomorrow, 14th February, at 12 noon, BBC Radio Scotland’s John Beattie programme will be interviewing several people about issues around ME. Those being interviewed we have been told, include: – MP Carol Monaghan – who has secured next week’s Parliament debate on the Pace Trial – Janet Sylvester – organiser of the recent Scottish […]
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 […]
There are so many questions banded about as to the story of Myalgic Encephalomyelitis (ME), but this video gives a better and fuller insight than most. Once you've watched it, please copy the link and spread the word to raise awareness. Thank you.
To watch this video, click on the link below:
As has been stated by Dr Sarah Jarvis and others, it’s possible that the Coronavirus could trigger M.E. in those people who get through the worst of the virus, and are seen to be in the recovery phase.
Please do not think that once you’re in that phase that you should just get back to your normal routine. As someone who has just passed his 14th anniversary with ME, the most important thing you can do is rest.
Resting should be from both physical and mental / cognitive activities.
Do not push beyond what your body is telling you. Your head might tell you something different, and you’ll be keen to make up for lost time, but please take advantage of this lockdown to recover properly. If you push beyond your limited energies now, and M.E. follows, it could change your life for years to come.
Be sensible and rest up. Take care.
The York Access Group is a Facebook group which is aimed at improving Accessibility in York for those trying to get around with a Disability. Feedback on bad, and good Accessibility of shops, streets, cafes, restaurants and any other facilities are welcomed.
It's also the place to discuss mobility aids from walking sticks to scooters. If this sounds like a group for you, you're most welcome !
As we all know, especially those who need Wheelchairs or Mobility Scooters to get around, vehicles parking on pavements and blocking our way can have a major effect on our lives. It can mean that we are likely to put ourselves in danger by going onto busy roads because of inconsiderate parking. 
If you live in York, and you see a vehicle parked across a dropped kerb, call the council's hotline on 0800 138 1119 and the Civil Enforcement Officers will respond and are able to issue tickets. We know this won't help you right then and there, but the hope is that the more people report it, the more people get tickets, then slowly behaviour will start to change.
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:
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."
The York ME Community
@YorkMEAwareness
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.
There has since been an All Party Parliamentary Group (APPG) formed to discuss the way ahead in helping MP's Constituents with ME. Contact your MP to ensure they're representing 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).
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 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 likely to be around 800-1,000 people of all ages in the York area with ME 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.
Dr Byron Hyde has dedicated his medical career to looking into M.E.
In this interview Dr. Byron Hyde, founder of the Nightingale Research Foundation in Ottawa, Canada, emphasizes the brain and enteroviruses. He also emphasizes his belief that Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are separate issues.
To watch this interview on YouTube, click on the link below:
Those within the ME Community have always known how damaging being prescribed Graded Exercise Therapy (GET) can be to their future health. We have a broken energy production system and therefore normal rules do not apply. The PACE Trial tried to show that it helps, but has been debunked by scientists and researchers worldwide. The PACE Trial in fact is now held up as an example of how NOT to conduct such trials.
To understand better the truth of GET and The PACE Trial, click on the link below to watch two short videos.
We are the ME/CFS Biomedical Partnership, a collaboration between researchers and people with ME/CFS, carers and the public.
The DecodeME DNA study aims to help us understand the disease and ultimately find treatments.
To read more, or get involved, click on the link below:
This is open to any organisation looking to have a bit of fun whilst supporting your local community. We're underway now for the current season but will be recruiting teams for our 6th season around July 2021. Although the aim is spreading ME Awareness, as a bonus we have also raised over £920.00 for Invest in ME Research, so why not join us ?
To join in for next season, click on the Fantasy Football League tab at the top of the site for all the information you'll need.
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 |
To read the ME Research Summary 2019 by ME Action covering the last ten years, 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 supported The York ME Community.
They headed off from The York Eye (Clifford’s Tower) on Sun 28 Apr on a run out to the coast, set off by the Mayor of York and the York Normandy Veterans.
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.
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. I will be aiming to keep up the pressure to ensure future support.
The motion put before Council with regard to support in raising ME Awareness in York was passed unanimously !
The City of York Council has followed through on their promise by lighting up the city walls and Clifford's Tower in blue over the ME Awareness Weeks since that meeting.
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The first Monday of each month at 11 am - The York ME Community Coffee Club at Bar Convent, 17 Blossom Street, York. There is parking available just around the corner at Nunnery Lane Car Park. Blue Badge holders can park for free.
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The third Wednesday of each month - at 2 pm - The York ME Community Coffee Club at The Novotel, York. Parking is free at the hotel.
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Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
