By Alexandra H. Mandarano, Jessica Maya, […], and Maureen R. Hanson in The Journal Of Clinical Investigation. Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease with no known cause or mechanism. There is an increasing appreciation for the role of immune and metabolic dysfunction in the disease. ME/CFS has historically presented in outbreaks, […]
By Marjon E. A. Wormgoor and Sanne C. Rodenburg in the Journal of Translational Medicine. Abstract Background Due to the inconsistent use of diagnostic criteria in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), it is unsure whether physiotherapeutic management regarded effective in ME/CFS is appropriate for patients diagnosed with criteria that consider post-exertional malaise (PEM) as a hallmark feature. […]
By Tracie White in The Scientist. Ronald Davis of Stanford University changed his focus to research on ME/CFS, the disease formerly known as chronic fatigue syndrome, in a bid to help his son and others like him. About 10 years ago, Stanford University genomicist Ronald W. Davis began a new investigation into a mysterious […]
By Cort Johnson in Health Rising. A riff on Dr. Peter Rowe’s presentation at the 2020 Dysautonomia International Conference (note that I expand on many of Rowe’s points; i.e. not all the words are his.) Lauren Stiles, the founder of Dysautonomia International, has long believed that the chronic fatigue syndrome (ME/CFS) and dysautonomia fields […]
By Cort Johnson in Health Rising. Ivabradine appears to work quite well in POTS – but should we stop there? Ivabradine was approved for use in the European Union in 2005, but it’s pretty new to the scene in the U.S. It was FDA approved in only 2015. That means it doesn’t have much […]
From Physios For ME. In May 2020 we were thrilled to announce that we had obtained funding from the ME Association Ramsey Research Fund for a study; “Feasibility of investigating oxygen consumption (VO2), heart rate, blood pressure, lactic acid levels and activity levels of people with Myalgic Encephalomyelitis during normal daily activities.” You can […]
By Cort Johnson in Health Rising. Is more energy the cure-all for chronic fatigue syndrome (ME/CFS) and fibromyalgia? Dr. Lerner observed years ago that symptoms in ME/CFS/FM tend to go up when energy levels go down and decline when energy levels go up. Even at rest, our muscles are affected by low energy levels. […]
From DecodeME. DecodeME’s Dr Veronique Vitart, Dr Shona Kerr and Professor Chris Ponting are among a group of researchers who have just published a study in the top science journal Nature on the role that genetics plays in severe Covid-19. Using the same technique that will power DecodeME, they found that people with particular DNA […]
From Science Media Centre. Researchers claim they have “unequivocally proved” that Chronic Fatigue Syndrome is not a psychosomatic disease. One of their studies finds mitochondria – known as the “powerhouse of the cell” – are dysfunctional in patients with the syndrome. A second study finds epigenetic similarities among sufferers. The SMC asked experts to comment on the research. Associate […]
By Erica Gerald Mason in Very Well Health. Researchers have developed a new test to diagnose myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). The test stands out as the first successful molecular diagnostic tool for ME, a development that has been long anticipated by many healthcare providers and patients. This new tool […]
By Katarina Zimmer in The Scientist. A finding of distinct patterns of gene-regulating RNA snippets in the blood of ME/CFS patients in response to a stress test could pave the way for a diagnostic tool for the condition and help untangle its underlying mechanisms. Formerly known as chronic fatigue syndrome, myalgic encephalomyelitis/chronic fatigue syndrome […]
By Jean-Benoit Legault The Canadian Press. A discovery by Montreal researchers is expected to improve the diagnosis and treatment of patients with myalgic encephalomyelitis (ME), better known as chronic fatigue syndrome. In most instances, ME is currently diagnosed by elimination, as doctors put aside other possible causes of the patient’s symptoms. But researchers from the University […]
By Jennifer Crystal, MFA in Harvard Health Publishing. A common refrain during the COVID-19 pandemic is, “I’m so tired.” After months of adjusted living and anxiety, people are understandably weary. Parents who haven’t had a break from their kids are worn out. Those trying to juggle working from home with homeschooling are stretched […]
By Cort Johnson in Simmaron Research. The failed Rituximab trial might seem like the death knell for autoimmunity in chronic fatigue syndrome (ME/CFS) but it’s not – not by a long shot. While the B-cells that Rituximab targeted are at the heart of much autoimmunity, T-cells can also cause autoimmune diseases. They also play a […]
By Cort Johnson in Health Rising. The Immune Hole That Produced ME/CFS? (and who knows – maybe long-hauling as well) Somehow Lenny Jason got a hold of some recovery data from the 1918 flu! The data suggested that 20% of those affected may not have fully recovered, and fatigue was one of the most […]
From Emerge Australia. Established in October 2020, Open Medicine Foundation Australia (OMF Australia) is an Australian foundation set up to support biomedical research through the establishment of a new ME/CFS collaborative research centre in Australia. OMF Australia was founded by Emerge Australia in partnership with the Open Medicine Foundation, meaning that Australia is now […]
By Cort Johnson in Health Rising. Fatigue has been a mystery to the research world. Take multiple sclerosis (MS) – one of the most fatiguing diseases known. Fatigue is often one of the first symptoms that shows up in MS and it’s often the most troubling symptom MS patients experience, yet the fatigue in MS isn’t […]
By Deborah Marshall in Griffith News. The National Centre for Neuroimmunology and Emerging Diseases (NCNED) has been awarded $1.46 million in National Health and Medical Research Council funding for research into myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS). Part of Griffith University’s Menzies Health Institute Queensland , the centre’s researchers will investigate potential diagnostic tests as well as suitable […]
From Emerge Australia. Emerge Australia conducted a second Health and Wellbeing Survey of people living with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) in 2019. An impressive 1,055 participants from around Australia answered 60 questions covering demographics, caring responsibilities, ME/CFS onset and symptom experience, access to healthcare and other services, and the effect […]
From Parasym. Chronic Fatigue Syndrome: examining the impact of infections. Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, or CFS, is a long-term illness that is characterised by extreme tiredness in addition to a host of other discomforts. Researchers have struggled to find an identifiable origin to this debilitating disease and as a result, it has proven […]
By Cort Johnson in Health Rising. Ron Davis’s Stanford ME/CFS Collaborative Research Center is itching to get back to full-time lab work. It’s not that Davis and his group haven’t been working. Janet Dafoe described constant Zoom calls with ME/CFS researchers, a bevy of grant applications have been completed, put some researchers – with […]
Reviewed by Emily Henderson, B.Sc in News Medical Life Sciences. One of the major symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is post-exertional malaise (PEM), the worsening of symptoms after physical or mental activities. Using their own words and experiences, people with ME/CFS described how debilitating PEM can be in a study in Frontiers in […]
By: John Gibb in the Otago Daily Times. In a cruel twist, many Covid-19 survivors could be affected by a once-obscure chronic fatigue condition, initially termed the Tapanui flu, and whose existence was once ridiculed and denied. Emeritus Prof Warren Tate, 73, of the University of Otago biochemistry department, officially retired recently but is continuing […]
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:
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.
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 !
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:
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
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 !
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).
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 this year, please make it this one,
Are you a member of a York based Sports or Fitness Club ? Looking for a local cause to run or do an activity for ? The York ME Community are looking to be 'adopted' by anyone willing to maybe run for us and help raise our profile. There are likely to be around 800-1,000 people of all ages in the York area with ME who would be so very grateful for your help.
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.
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:
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.
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 ?
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.
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 |
To read the ME Research Summary 2019 by ME Action covering the last ten years, click on the link below:
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.
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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.
