4 Downsides (And Bright Sides) Of My Illness

1st October 2019

Chronic Fatigue Syndrome, Disability, Invisible / Chronic Illness, ME Blogs, ME Support and Awareness in York - The York ME Community, ME Symptoms, ME Treatments And Therapies, ME/CFS Information, Myalgic Encephalomyelitis, Personal Stories

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By Siobhain Simper in The Mighty.

As you may be aware, living with a debilitating chronic illness is no fun: the challenges thrown at you by a disease which dictates your every move can be overwhelming. But today, I’m choosing to celebrate the bright side. By putting a positive spin on some of my worst experiences of living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), I want to highlight the empowering, edifying, and downright funny aspects of life as a spoonie.

1. Downside: I’ve had my dignity stripped from me by being showered by nurses and having them inspect my everything — from the toilet bowl to sanitary pads to the food left on my plate. Nothing will take away the memory of having a nurse prod and and poke at my business in the toilet bowl, nodding approvingly.

Silver lining: Hey, with no dignity left, I have nothing to fear! Public nudity? No problem! Clothing malfunction? That’s a laugh. Even the most uncomfortable of doctor’s tests is a breeze now. The most painful procedures are nothing compared to the awkwardness of having a cannula inexpertly inserted, or a tube put down your throat.

To read the rest of this story, click on the link below:

Link to ME story

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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.

Link To Parliament 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 !

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:

Link to Business Request

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."

York, United Kingdom

0^°C few clouds

sun03/07 mon03/08 tue03/09 wed03/10 thu03/11

8/2^°C

8/3^°C

9/7^°C

8/8^°C

8/5^°C

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.

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.

Link To Graded Exercise And PACE Videos

Calling all Groups, Pubs, Clubs, Shops, Cafe's, Restaurants and any other Organisations from York and beyond wishing to enter teams into the league for the 2020/21 season starting in September ! Sorry, but you've missed out for this season, so pop it in your diary to join us before next season starts !

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 ?

As an added incentive, the team top at Christmas receives a box of goodies kindly donated by Nestle of York. This year, as it was won by The York ME Community team, it was passed to York Food Bank.

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.

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.

THE FOLLOWING EVENTS ARE CURRENTLY SUSPENDED, EXCEPT FOR THE ME AWARENESS HOUR, WHICH IS ONLINE. STAY SAFE, BE KIND.

If you have an ME related event you would like advertised here, just let me know.

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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.

Financial Year	£
2014-15	280,442
2015-16	295,626
2016-17	130,958

4 Downsides (And Bright Sides) Of My Illness

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Record Of Mentions Of M.E. In Parliament As Listed In Hansard

MP Speaks Of Need For Government Funding For ME Research & All Party Parliamentary Group (APPG) On ME

Carol Monaghan Addresses Parliament On M.E.

Links To Our Supporters Websites

To Learn The Full Story Of ME, Just Have A Little Watch Of This Video

The York Access Group

Reporting Pavement Parking In York

A Call Out To All York Businesses !

The Nomadic Knights Reach Everest Base Camp For ME Awareness !

The York ME Community Can Also Be Found On Facebook & Twitter

CFS and ME Comparison Chart

Featured Article On The ME Story By Nathalie Wright Of The Independent

Calling All York Sports And Fitness Clubs, We Really Need Your Help !

We’ve Been Raising ME Awareness At York Explore Library !

Twitter News

A Must Read – Corona virus And M.E.

The Truth About Graded Exercise Therapy (GET) And The PACE Trial

Interview With Dr Byron Hyde

Posts By Topics

Decode ME Research Study

Join us to help create the world’s biggest study of the causes of ME/CFS.

The York ME Shield – Inter Company Fantasy Football League

As an added incentive, the team top at Christmas receives a box of goodies kindly donated by Nestle of York. This year, as it was won by The York ME Community team, it was passed to York Food Bank.

UK Government Funding Into Myalgic Encephalomyelitis Research By Year

ME Research Summary 2019

What Does Myalgic Encephalomyelitis (ME) Actually Mean Anyway ?

The York Inset Scooter Club Ride Out To Support The York ME Community

City Of York Council Backs The York ME Community In Raising ME Awareness !

Just A Few ME Events For Your Diary

THE FOLLOWING EVENTS ARE CURRENTLY SUSPENDED, EXCEPT FOR THE ME AWARENESS HOUR, WHICH IS ONLINE. STAY SAFE, BE KIND.

If you have an ME related event you would like advertised here, just let me know.