By Jeffrey Lubell in Health Rising. Longtime readers of the Health Rising blog may remember an article that Cort wrote in 2013 about the promising results of a small study that found marked reductions in fatigue among three individuals with Fibromyalgia who took high doses of thiamine (Vitamin B-1). In the intervening years, several important studies on high-dose thiamine have been published, […]
By Elki in York Disability Rights Forum. Elki lives in York and relies on using her Blue Badge to be able to park near enough to the places she needs and wants to go. In this Member’s Voice post, Elki writes about what she sees as the dangers of reducing disability visibility in York. Disability […]
By Cort Johnson in Health Rising. Systrom, Scheibenbogen and others have has found evidence of microcirculatory problems in chronic fatigue syndrome (ME/CFS) and fibromyalgia, but what about the big blood vessels – the arteries? These muscular, but flexible, tubes transport oxygenated blood under high pressure from the heart to the organs and muscles. They […]
By Cort Johnson in Health Rising. The Netherlands and the U.K. have been the epicenter of biopsychosocial research (CBT/GET) into chronic fatigue syndrome (ME/CFS) for the past 20 years or so, but that is changing. In 2018, the Dutch Health Council asserted that “Scientific research on ME/CFS is needed to serve patients better”, and that […]
By Megan Hartle, Lucinda Bateman and Suzanne D. Vernon in Taylor & Francis Online. ABSTRACT Background Post-exertional malaise (PEM) is a defining characteristic of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) but there is insufficient research dissecting the nature of PEM from the patients’ perspective. Methods A PEM questionnaire administered to 150 ME/CFS patients. It included open-ended questions about triggers, experiences, […]
From the NotcJust Tired Blog. After a good day, or a spell of feeling pretty ok, it’s always a kick in the teeth when Post-Exertional Malaise (PEM) catches up with you. As I’m sure those of you living with ME/CFS, will be all too familiar with. For those not familiar, PEM is the worsening […]
By Carrie-Ann Lightly. Visiting a new place can be anxiety-inducing for even the most confident disabled person. A holiday, a weekend trip, a day out – even popping to the local shops. Why would you be worried about nipping out for a loaf of bread, I hear you ask? Because, dear reader, the language […]
By John Pring in Disability News Service. Disabled people in Scotland could be set for “ground-breaking” improvements to the “protection, progression, and promotion” of their human rights, after their government pledged to incorporate the UN disability convention into Scottish law. The promise came as the Scottish government accepted the 30 recommendations made in a […]
From Disability Horizons. The coronavirus vaccine programme has been in action across the UK since December 2020 and more than 10 million people have received their first dose so far. With the first four priority groups being given the vaccine, we ask disabled people, those with health conditions and carer’s thoughts and experiences of accessing […]
By John Siddle in The Mirror. Serious health condition sufferers say they have been overlooked in the jab rollout after the Government chooses to vaccinate people by age once priority groups are done. Vulnerable Brits say they have been ‘forgotten’ in the vaccines rollout as young and healthy people get jabs. Those with serious health […]
From Undiagnosis. I have been dropping various hints over the last few months about a non-fiction project I have been working on for the last two and a half years. It’s called All In Your Head, and you can find out more about it on the website here. In brief, it’s the story of what happens when […]
By John Pring in Disability News Service. The Department for Work and Pensions (DWP) has finally agreed that all disabled people being assessed for personal independence payment (PIP) will be able to have their face-to-face assessments recorded. The promise has come in a letter to the Right to Record action group, a disabled-led […]
By Cort Johnson in Health Rising. Cortisol, our body’s main stress hormone, has an amazing reach. Given the effects it has on our metabolism, inflammation, blood pressure, blood sugar, energy production and even the sleep-wake cycle, it’s no surprise that researchers early on latched onto signs of cortisol problems in chronic fatigue syndrome (ME/CFS) and […]
By Rachel Green and Wendy Rhodes in Weighted Blanket Guides. Post-Traumatic Stress Disorder (PTSD) is a psychiatric disorder that affects 7.7 million Americans every year. PTSD can occur in individuals who have witnessed or experienced a traumatic event, causing them debilitating stress. Some of the common causes of PTSD include war/combat, natural disaster, violence against […]
By Cort Johnson in Health Rising. How fibromyalgia, chronic fatigue syndrome and allied diseases are so different from diseases like rheumatoid arthritis. Fibro-fog, brain-fog, chemo-fog… It can get pretty dim out there if you have fibromyalgia (FM), chronic fatigue syndrome (ME/CFS) and environmental illness (EI). If you have these conditions and feel like you’re […]
From Len’s Cup Of Tea Blog. Most of us spend quite some time on our phones these days, and I am certainly no stranger to that either. As someone with a chronic illness who needs to rest quite a lot, low energy games on my phone are a great way to spend my time […]
By Nemesis in Healthcare Hubris. Trigger warning: gaslighting, ableism, death, coercive control, cult psychology Politics pervades everything, and healthcare is no exception. This can arguably be exemplified through tracking the twists and turns of dominant thinking around Long Covid management, and how this is positioned vis-à-vis other chronic illnesses, notably myalgic encephalomyelitis / […]
By John Pring in Disability News Service. A new report, based on the views of hundreds of disabled people and organisations, has called on the government to produce a national disability strategy that is “radical and ambitious”. The report by Disability Rights UK (PDF) follows a three-month engagement campaign aimed at discovering how disabled […]
By John Pring in Disability News Service. Disabled people have highlighted gaps in social security support, flaws in the shielding system and worries about access to vaccines, after they were asked to describe their concerns as England entered its third national coronavirus lockdown*. They raised scores of different issues, ranging from worries about the accessibility […]
By Jasmine Hearn and Stella Bullo in The Conversation. What [do] I mean by sitting in a pit of fire? You’ve got every nerve ending that’s just going hellfire, and you just don’t know what to do with yourself. Forty-two year old Emma has experienced chronic pain from a spinal cord injury for […]
From The Guardian. Twenty-five years after discrimination was outlawed, progress towards inclusion and equality has gone into reverse. There should have been a feature film, or a primetime TV series. Maybe one day there will be. But this year, the 25th anniversary of the Disability Discrimination Act – a landmark piece of legislation […]
By Brian Hughes in The Science Bit. An invited, non-peer-reviewed guest editorial in the BMJ has claimed that behavioural interventions for “complex conditions” (such as ME or CFS) should not be judged using the customary criteria — and that the relevant studies should not be evaluated as though they were proper randomised controlled trials — […]
Posted by BJGP Life. Charles Todd qualified as a GP in 1981 and then spent twenty years working in Zimbabwe. He recently retired as a GP partner in Buckinghamshire. IN MY FIRST JOB AFTER QUALIFYING in 1977 as a house physician in cardiology, on call frequently involved “clerking” mostly middle-aged men having heart attacks and admitting them […]
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INTRODUCTION
The York ME Community is an ME Support and Awareness Group. What I believe we need is awareness of the illness to be raised and for that we need people to learn about ME and tell others. There are ME charities, and if in the future you or your friends or business wish to do a charity run or whatever in aid of ME, I will happily help and support that aim. (more…)
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.
Paul Beresford Conservative, Mole ValleyTo 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)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
To read the ME Research Summary 2019 by ME Action covering the previous ten years, click on the link below:
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.
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 !
To watch the video of Carol Monaghan MP addressing Parliament on M.E., click on the link below:
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:
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).
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,
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.
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:
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 ?
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.
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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.
