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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Paul Beresford Conservative, Mole Valley

To ask the Secretary of State for Health and Social Care, how much Government funding was allocated to biomedical research into myalgic encephalomyelitis in the financial years (a) 2017-18, (b) 2018-19 and (c) 2019-20.

Helen Whately Minister of State (Department of Health and Social Care)

The following table shows how much Government funding was allocated to biomedical research into myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) for financial years 2017-18, 2018-19 and 2019-20.

Financial Year

2017-18 £226,470

2018-19 £396,467

2019-20 £443,719

In addition to the funding set out above, the National Institute for Health Research, funded through the Department, and the Medical Research Council have recently announced a £3.2 million award to fund research into potential genetic connections to ME/CFS. The project will analyse samples from 20,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.

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

Link to Written Question In Full

The above shows an imbalance when viewed against the cost of ME to the UK economy. A 2017 report from the think tank 2020 health and the Optimum Health Clinic Foundation reported that the cost of CFS/ME to the UK economy was at least £3.3 billion in 2014/15

The figures below show the numbers of people with ME recorded in each country. This will be updated as and when fresh information is sourced. It is also acknowledged that it is difficult to be accurate as ME is still not recognised, therefore not recorded in very many countries.

It’s said that 17 million people in the world have ME/CFS – but this figure is no more than a rough guess based on crude prevalence estimates from developed countries (0.2 to 0.4%, including children) applied to the 7 billion inhabitants of planet Earth! In fact, rigorous, robust estimates of the occurrence of the illness in each country are needed, particularly to plan healthcare and allocate funding for research.

If you can update this information, please let me know the figure, plus source if known. I will be looking to add figures and comments from people living in those countries, so as to have a better feel for how things are there.

Where I give a figure tbc, it means this is the figure I have heard, but am seeking a source to confirm.

UK: 260,000. The National Institute of Health and Care Excellence (NICE) estimates the prevalence of CFS / ME to be 'at least' 0.2% to 0.4% of the UK population, implying up to 1 in 250 people affected, or 260,000 in total.28 Sept 2017

(The University of Bristol research in 2011 estimated the number of 11 to 16 year olds with ME at one in 100).

Ireland: 10,000 - 19,000. According to The Irish ME/CFS Association.

USA: 836,000 - 2.5 million According to an Institute of Medicine (IOM) report published in 2015, an estimated 836,000 to 2.5 million Americans suffer from ME/CFS, but most of them have not been diagnosed.

France: 150,000 - 500,000. From a member of Millions Missing France: Our country does not yet recognise ME, but estimates are between 150,000 and 500,000.

Holland: 30-40,000 tbc. The Health Council of the Netherlands produced a report in 2018 which suggests they understand the condition as well as the need for more research to reach a better understanding, yet the same report suggests that it is felt in the main, that patients aren't taken seriously.

Canada: 560,000. A 2017 Statistics Canada survey revealed that more than 560,000 Canadians reported that they have the disease.

Sweden: 40,000. Riksföreningen för ME-patienter (RME, the Swedish ME Association) estimates that approx 40 000 people in Sweden are living with ME/CFS. Most of them have not been diagnosed.

Australia: 250,000 From Emerge Australia.

Italy: 500,000 tbc.

Malta: Due to unwillingness to diagnose and lack of knowledge on ME, it's difficult for doctors to give an accurate figure. Some doctors say it is approx. 0.02 % same as in Europe.

Portugal: 40,000 tbc.

Romania: 80,000 tbc. Based upon other European ratios, there are as many as 80,000 people living in Romania with M.E.

Slovakia: 20,000 tbc. It's estimated that there are approximately 20,000 people with ME living in Slovakia (in line with other European ratios).

Denmark: 10,000-20,000. Not recognised as a physical illness. Denmark has no national registration of ME patients. The estimate of 10-20.000 patients rely on NICE estimate that 0,2-0.4% of the population has ME. Diagnosing, treatment and health authorities recognition of ME is close to non-existent, even though their parliament voted to change all that...back in March, 2019.

Austria: Not recognised as a physical illness.

Worldwide: 17 million. This figure is given by NHS Choices.

15 - 30 million. This figure is given by #MEAction.

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.

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 ! Due to lockdown, there has been very little opportunity to access anywhere, but hopefully this will change in the not too distant future !

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

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Calling all Groups, Pubs, Clubs, Shops, Cafe's, Restaurants and any other Organisations or individuals from York and beyond wishing to enter teams into the league for the 2021/22 season starting in August !

This is open to any organisation or individual looking to have a bit of fun whilst supporting your local community. We're recruiting teams for our 6th season right now ! 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. Last 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.

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

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.

THE FOLLOWING EVENTS ARE CURRENTLY SUSPENDED, EXCEPT FOR THE ME AWARENESS HOUR, WHICH IS ON TWITTER. 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.

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.

4 Downsides (And Bright Sides) Of My Illness

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Welcome

Links To Our Supporters Websites

UK Government Funding Into Myalgic Encephalomyelitis Research By Year

Paul Beresford Conservative, Mole Valley

Helen Whately Minister of State (Department of Health and Social Care)

Prevalence Of ME Worldwide

ME Research Summary 2019

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.

Reporting Pavement Parking In York

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

The York Access Group

The Nomadic Knights Reach Everest Base Camp For ME Awareness !

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

What Does Myalgic Encephalomyelitis (ME) Actually Mean Anyway ?

Twitter News

York ME Community Inter Company Fantasy Football League

Calling all Groups, Pubs, Clubs, Shops, Cafe's, Restaurants and any other Organisations or individuals from York and beyond wishing to enter teams into the league for the 2021/22 season starting in August !

As an added incentive, the team top at Christmas receives a box of goodies kindly donated by Nestle of York. Last 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.

CFS and ME Comparison Chart

Interview With Dr Byron Hyde

A Must Read – Corona Virus And M.E.

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

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

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 Inset Scooter Club Ride Out To Support The York ME Community

Just A Few ME Events For Your Diary

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

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

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