By Dr Neil MacFarlane MRCPsych in DrNMblog. This was submitted (December 2020) to NICE in response to the new draft ME/CFS guidance of November 2020,[1] which had removed the recommendation for Graded Exercise Therapy (GET), and downgraded CBT from therapeutic to a ‘supportive’ option. [1] https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents I appear to be the first UK psychiatrist to be […]
By David Tuller, DrPH in Virology Blog. In a post earlier this week, I noted some differences in the tenor of the debate over Long Covid in the US and UK. Yesterday, another excellent and in-depth piece on the issues appeared on the domestic front, this time in VICE. The author, Alan Levinovitz, is associate professor of religious studies at […]
By Austin Williams in Fox 26. The National Institutes of Health identifies “COVID long haulers” as a “large numbers of patients who have been infected with SARS-CoV-2 continue to experience a constellation of symptoms long past the time that they’ve recovered from the initial stages of COVID-19 illness.” The chronic fatigue syndrome Ron Davis’ son suffers […]
By Julia Belluz in Vox. Dr. Craig Spencer, an emergency room doctor in New York City, was no stranger to dangerous viruses when a brush with one landed him in Bellevue Hospital for 19 days. But it was only after he was discharged, and declared virus-free, that the really bizarre symptoms set in. Back at home, he noticed he […]
By Llewellyn King in Inside Sources. Long COVID is the condition wherein people continue to experience symptoms for longer than usual after initially contracting COVID-19. Those symptoms are similar to the ones of another long-haul disease, Myalgic Encephalomyelitis, often called Chronic Fatigue Syndrome. For a decade, in broadcasts and newspaper columns, I have been detailing the […]
From Emerge Australia. Welcome to the 65th Emerge Australia Research Digest, where you will find summaries of some of the latest research and information about ME/CFS, with links to the complete articles. You can also join our community and choose to have the Digest delivered straight to your inbox every fortnight on […]
By Cort Johnson in Health Rising. Eric Schadt, the study’s senior author, is not your average researcher, and Phillip Comella, the lead author, has personal experience with mysterious diseases and difficult diagnoses. A biomathematician and bioengineer, Schadt has been at the forefront of biocomputational technologies for years. Schadt’s goal has always been to get […]
By David F Marks. Here I review the disastrous trial known as the ‘PACE trial’. This updates a post from several years ago. Review of the evidence indicates that none of the Wessely School’s hypotheses about the causes of ME/CFS are supported by the science (see here, here and here). Under these circumstances it would be scientifically impossible for […]
By David F Marks. A previous post examined the Wessely School hypothesis that ME/CFS is caused by unhelpful beliefs. This idea was exploded as a myth. Here I examine a second Wessely School hypothesis (H2) that states: Deconditioning causes, or exacerbates the symptoms of, ME/CFS and MUS Deconditioning refers to multiple, potentially reversible changes in body systems […]
By Claire Smyth in The Mirror. Charities that support people with ME have warned against combining new specialist treatment for the condition with proposed services for long Covid. The Health and Social Care Board is developing plans to help those still experiencing long-term health issues months after being unwell with Covid. Some of the […]
Fog And M.E. In a car when fog descends Lights go on to see the bends Other dangers illuminated A flick of a switch, clarity created An M.E. fog is not the same It wraps around our words, our brain There is no switch, no helpful light Just confusion, loneliness and fright An M.E. symptom […]
By Emily Coady-Stemp in SW Londoner. A Herne Hill filmmaker hopes his short film This is ME will bring awareness to those living with a common invisible disability. Josh Pickup, 29, was diagnosed with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome, at the age of 21. ME is among the most common […]
From ME International. The 1956 Lancet Editorial First Proposing the Name “Benign Myalgic Encephalomyelitis” A New Clinical Entity by E.D. Acheson, D.M., M.R.C.P. (26 May 1956) “From the purely practical standpoint it would be useful to have a name for this syndrome. As the most helpful single feature in the recognition of this syndrome […]
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 Michael Gallagher. I am an orthopedic surgeon and former marathoner and triathlete living with chronic fatigue syndrome (ME/CFS). Below is an an email that I sent to my colleagues describing my battle with ME/CFS that has robbed me of my ability to do much of what I love. I think many people can […]
By Jamison Hill in Jamison Writes. I’m going to keep this post short because, to be honest, I’m burnt out and a few hundred words is all I can muster at this point. For the last several years, I’ve been devoting pretty much all of my free time to getting my book […]
A bit of a breakthrough on the BBC 2 Horizon programme where Dr Strain explains to Dr Xand van Tulleken that ME, a physical illness, will be gaining research based on the Long-Covid situation. It’s only a couple of minutes long, but worth a watch ! To watch the video, click on the […]
From ME Research UK. Principal investigators Dr Nuno Sepúlveda & Prof. Carmen Scheibenbogen. Background and Aim. The emergence of so-called ‘long COVID’ has highlighted the potential long-term health consequences of infection with a virus like SARS-CoV-2, leading to symptoms such as fatigue, muscle pain and brain fog that may last for weeks or months. […]
By Kate Stanforth in WheelAir. Kate Stanforth shares her story, from being an active young girl, to developing a chronic illness and navigating ESA, DWP and public opinion. I’m going to open this by saying that this is the most honest blog I have ever written. It’s on a subject that I know lots […]
By Victoria Strassheim, Julia Newton & Tracy Collins in ME Research UK. Key findings Very little research has been conducted in people with severe ME/CFS, partly because their health burden make it difficult for them to engage in studies Interviews with five people with severe ME/CFS explored their lived experience, challenges to everyday life, and management […]
By a Staff Writer at The Ohio State University College Of Medicine. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Gulf War illness are complex, chronic diseases with overlapping symptoms and no definitive way to diagnose or differentiate between them. The one symptom they share in common is long-term, disabling fatigue. But widely varying symptoms affecting […]
From ME/CFS Skeptic. Canadian historian Edward Shorter is one of the most influential writers to have dismissed the illness myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In his articles, Shorter has described ME/CFS as a “trendy non-disease”, “a psychic epidemic” and a “pseudo-disease that does not exist.” Because Shorter’s work is still being cited, this blog […]
by Jennifer Trueland in BMA. Long COVID is a new condition, but those who have endured years of ME/CFS can share their common experience – and a long history of being misunderstood. When it was becoming clear that COVID-19 was a serious issue early last year, Nina Muirhead (pictured) had a strong suspicion about […]
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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.
