Paul Beresford Conservative, Mole Valley

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.

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.

To read the ME Research Summary 2019 by ME Action covering the previous ten years, click on the link below:

ME Research Summary

As you will know, Hansard is an edited verbatim record of all matters discussed in Parliament and records all votes and written ministerial statements.  You may be interested in when ME has been mentioned, and so a link to that record is below.

Link To Hansard

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 !

To watch the video of Carol Monaghan MP addressing Parliament on M.E., click on the link below:

Link To Carol Monaghan MP On ME

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.

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:

Link To ME Video

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."

The York ME Community

@YorkMEAwareness

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).

Link to Chart at Hummingbirds

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:

Link to Interview

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.

 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, please make it this one,

Link to Nathalie Wright's Article

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

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

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:

Link To DecodeME Research

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.

 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.

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.